My Journey Through Thyroid Cancer & Pregnancy

David V. Becker, Expert on Thyroid Disease passes away

2010-02-12T20:57:00.000-08:00

Worth noting.. read his story. This man was a pioneer in using radioactive materials to diagnose and treat thyroid disease and an expert on the thyroid damage caused by the Chernobyl nuclear reactor accident in 1986.

I never met the man but personally, I'm most grateful for his determination because it meant there was a way to treat my cancer when I needed it! Thanks, Dr Becker. Rest in Peace.

Click the title link to read the whole obit in the NY Times

Radiation exposure linked to Thyroid Cancer in Adult Years

2008-09-02T14:23:00.000-07:00

First an update: I continue to be cancer-free as of my ultrasound scan last year. My doctor wanted to wait until Spring 2008 for it, after having said months earlier that we would do it in September so I insisted. Sorry doc but I feel a little neurotic when it comes to the thought of microscopic cancer cells possibly being alive inside my freakin' body... so she scheduled the test. This time it was an ultrasound instead of the radioactive gamma camera scan - after two clean scans prior to this she felt it wasn't necessary to go that far this time around. So this ultrasound showed something- not sure what - but something in my neck area. The radiologist that read the scan and presented the report said that prior scans or ultrasounds should be consulted, that it may be 'scar tissue'... so my doctor said she wasn't sure but it could be scar tissue. She ordered prior slides and scans that also appeared similar so took that and the fact that my blood tests didn't show any antibodies as an OK that it's not something, i.e., cancer growing in there. Sometimes you just have to be okay with knowing as much as you know and not freaking out over what you don't. If that makes any sense?

Here we are it's September again and my next appointment is in a week. Not sure when she will want to do a scan or whatever this time so I will wait and see what she says during our visit.

Okay my main reason for blogging today was to share this story as found at US News:

Some Hiroshima Survivors at Thyroid Cancer Risk

Radiation may have caused chromosomal change that raises odds for malignancy, study finds

By Alan Mozes
HealthDay Reporter

FRIDAY, Aug. 29 (HealthDay News) -- Some Japanese survivors of the World War II atomic bomb blasts in Hiroshima and Nagasaki experienced key genetic changes that may have sparked the onset of a form of thyroid cancer, new research indicates.

Papillary thyroid cancer (PTC) is typically linked to a particular genetic mutation involving the so-called BRAF gene. But Japanese researchers say that among Japanese atom bomb survivors, a different and relatively rare disease trigger -- involving the chromosomal rearrangement of the RET/PTC gene -- seems to be to blame.

Though both mechanisms spur activation of the same enzyme-signaling pathway that leads to PTC, "the RET/PTC rearrangements were more common among cancers from individuals with higher (radiation exposure) doses, cancers that occurred earlier after the A-bomb exposure, and cancers among those who were at younger ages at A-bomb exposure," noted study lead author Kiyohiro Hamatani.

Hamatani is chief of the laboratory of cell biology in the department of radiobiology/molecular epidemiology at the Radiation Effects Research Foundation (RERF), in Hiroshima. He and his colleagues reported their findings in the Sept. 1 issue of Cancer Research.

The finding is just the latest from a decades-long tracking of 120,000 Japanese atom bomb survivors. It comes on the heels of an analysis released this past spring that revealed that young children exposed to radioactive atomic fallout in the blasts faced a greater risk of adult cancers than those exposed to radiation while still in the womb.

With respect to radiation-associated PTC, the authors noted that other studies have uncovered evidence of similar (but not identical) chromosomal rearrangements among childhood survivors of the 1986 Chernobyl nuclear power plant accident in Russia who later developed PTC.

In their study, Hamatani's team found that between 1958 and 1998, there were 63 cases of thyroid cancer attributable to A-bomb radiation exposure, of which 90 percent were of the papillary variety.

They also extracted genetic material called RNA from thyroid tissue samples supplied by 50 patients who had been exposed to atomic bomb radiation, along with 21 patients who were not exposed.

The comparative genetic profiles revealed that younger men and women who lived close to the bomb site when exposed to radioactive fallout, and who went on to develop PTC, were more likely to have the less frequent chromosomal rearrangement.

Hamatani cautioned, however, that he and his colleagues still do not know exactly how radiation exposure might have contributed to the onset of RET/PET rearrangements. It's even possible that radiation exposure may not have played a role in the development of PTC among patients who had the chromosomal rearrangement before they were diagnosed with the disease. Hamatani noted that, among childhood PTC cases in particular, such chromosomal shifts are relatively common, regardless of whether a child has been exposed to radiation or not.

Because of this, Hamatani stressed that any link between radiation and chromosomal changes, "needs to be confirmed with additional PTC patients in the future".

In the meantime, Dr. Alfred I. Neugut, a professor of medicine and epidemiology at Columbia University College of Physicians and Surgeons, and co-director of cancer prevention at New York Presbyterian Hospital, in New York City, said the association "makes biological sense."

"The fact that radiation exposure is associated with thyroid cancer is well known and not news," he noted. "But now, as research technology has caught up with scientific expectations, they're now able to identify the specific chromosomal anomaly that causes the cancer. And, indeed, this is exactly what you would expect."

More information

For more about radiation and its impact on health, visit the U.S. Nuclear Regulatory Commission.

[SOURCE: http://health.usnews.com/articles/health/healthday/2008/08/29/some-hiroshima-survivors-at-thyroid-cancer-risk.html]

Presence Of Gene Mutation Helps Guide Thyroid Cancer Treatment

2007-09-10T23:32:00.000-07:00

Hello friends, as you know I try to stay informed about research regarding Thyroid cancer. I take it personally. Here's some more data on the BRAF Gene research...looks great!

~Christy

Presence Of Gene Mutation Helps Guide Thyroid Cancer Treatment

Science Daily — A specific gene mutation may be useful in predicting the level of aggression of thyroid cancer and help guide treatment options and follow-up care, according to new study findings.

The mutation, called BRAF V600E, is a genetic alteration in the BRAF oncogene, a modified gene believed to cause cancer.

Past studies have shown that the mutation frequently occurs in the most common type of thyroid cancer, conventional papillary thyroid cancer or PTC, but this is the largest study to classify thyroid cancer by cell structure subtype and to show that the mutation is significantly associated with cancer recurrence after treatment, according to the research team.

The findings come at an important time as both the incidence of thyroid cancer and the number of patients who die from the disease is increasing in the United States. More than 33,000 new cases of thyroid cancer are expected to be diagnosed in 2007, according to the National Cancer Institute.

Most patients diagnosed with thyroid cancer have small, localized PTC but may receive aggressive treatment because their risk of recurrence and death cannot be reliably predicted prior to surgery, the study authors noted.

“There is a pressing need to identify a reliable preoperative approach for stratifying patients according to risk of thyroid cancer recurrence and death,” said lead author Electron Kebebew, MD, who is an assistant professor of surgery and endocrine surgeon at the University of California, San Francisco and a research scientist with the UCSF Comprehensive Cancer Center.

“This study shows that a particular mutation is a reliable indicator, and testing for the mutation may be useful for selecting initial therapy, determining the need for and extent of surgery, as well as the need for ongoing monitoring and follow-up care,” he emphasized.

In the study, the researchers examined tumor samples from 314 patients with thyroid cancer (245 with conventional PTC, 73 with follicular thyroid cancer and 29 with the follicular variant of PTC) to determine the presence of BRAF V600E and its association with factors such as tumor size, tumor stage, and patient outcome.

They found the mutation in 51 percent of patients with conventional PTC, in 1 percent of patients with follicular thyroid cancer, and in 24.1 percent of patients with follicular variant PTC.

In conventional PTC and follicular variant PTC, the mutation was significantly associated with older age, larger tumor size, and recurrent and persistent disease. These patients also showed a trend toward a higher rate of cancer formation in the lymph node due to metastasis (the transfer of tumor cells from one organ or part of the body to another organ or part) and higher stage cancer.

In patients with conventional PTC, the mutation was associated with older age, lymph node and other metastasis, and was an independent risk factor for recurrent and persistent disease. Median follow-up time of all patients in this study was six years.

Kebebew explained that identification of the mutation in patients with thyroid cancer could be very useful in a variety of ways. For example, patients with the mutation may be candidates for a more aggressive approach to surgery, such as removing the central lymph node along with the diseased thyroid, to avoid the possibility of metastasis following surgery. BRAF V600E testing could also be useful for deciding between low- or high-dose radioiodine ablation therapy.

“Advances in molecular biology techniques have improved our understanding of the genetic changes in cells that lead to the formation of cancer and have provided opportunities for identifying disease biomarkers like this mutation,” added Kebebew. “It is critical to continue the drive to discover reliable biomarkers so we can better identify, treat and cure cancer.”

The study was funded by the Robert Wood Johnson Foundation, the American Cancer Society Research Scholars Grant, Hellman Family Grant, the University of California Cancer Research Committee and the National Institutes of Health.

The new research is reported in the September issue of the “Annals of Surgery.” Study co-investigators were Julie Weng, BS; Juergen Bauer, MD; Gustavo Ranvier, MD; Orlo Clark, MD; Quan-Yang Duh, MD; Daniel Shibru, MD; Boris Bastian, MD, and Ann Griffin, PhD, all of UCSF.

Note: This story has been adapted from a news release issued by University of California - San Francisco.

Source:	University of California - San Francisco
Date:	September 6, 2007

New drug used to shrink Thyroid Cancer tumors [wow]

2007-06-05T21:55:00.000-07:00

Hello friends - I am trying to keep us updated on the new info regarding Thyroid cancer. Generally there isn't much news to report as far as advances but this is a good one to pass along. Especially offers hope down the road in the event myself or someone else out there has a recurrence in the future. Hopefully *NOT* but it is comforting to know there will be even more options for us!

~ Christy

Axitinib (AG-01373) Shows Promise for Stabilising Thyroid Cancer, Shrinking Tumours: Presented at ASCO

By Cameron Johnston CHICAGO, IL -- June 4, 2007 -- The investigational drug axitinib (AG-013736) may have substantial activity in producing shrinkage of thyroid tumor, and possibly stabilising the disease, researchers reported here at the 43[^rd American Society of Clinical Oncology Annual Meeting (ASCO).

There has not been a new treatment for thyroid cancer in more than 30 years, and though more than 30,000 people are diagnosed with the disease every year in the US, the standard of care has remained either surgery or treatment with radioactive iodine. Still, a substantial percentage of people with the disease progress and fewer than 30% of those who fail standard therapy survive more than 5 years.

Axitinib is a potent inhibitor of the vascular endothelial growth factor receptors (VEGFr) 1, 2, and 3. It is delivered orally in pill form.

The small study presented on June 2nd at ASCO was conducted by investigators at the University of Chicago, Chicago, Illinois, United States, and headed by Ezra Cohen, MD, assistant professor of medicine, section of haematology/oncology.

The study involved 60 patients who had failed conventional therapy; 80% had had prior surgery and 70% had had prior radioactive iodine treatment. They represented several histological subtypes of the cancer but most were either papillary (48%) or medullary (25%), which are the 2 most common subtypes.

Patients were treated with 5 mg/day twice daily of oral axitinib.

The duration of response in patients ranged from 1 to 26 months, and overall, 18 patients responded to treatment (30%). Stable disease was seen in 25 patients (42%).

No response was seen in 28% (n = 17) patients.

Although this was a small and preliminary trial, Dr. Cohen said at least 37 patients (62%) were still alive and without evidence of progressive disease after more than 18 months of follow-up, and this was very promising for the future of the drug.

Axitinib also produced a relatively manageable adverse effects profile, with half of patients developing fatigue, of whom 3 (5%) were grade 3 or 4; and 28 (47%) who developed any degree of diarrhoea. Stomatitis/mucositis was seen in 26 (43%) patients. Five patients dropped out of the study due to adverse events.

According to Dr. Cohen, these findings represent a significant breakthrough in the treatment of refractory thyroid cancer, particularly since it has been so long since any new treatments were developed. There are no treatment options beyond surgery and/or radioactive iodine, he said.

It is clear that for certain patients, this may offer an important opportunity for treatment, Dr. Cohen said, but at this stage it may be useful to develop ways to identify patients who would respond best to this treatment, as well as to identify patients who are not likely to respond well to conventional therapies.

[Presentation title: A Phase I Study of Axitinib (AG-013736) in Patients With Advanced Thyroid Cancers. Abstract 6008]

2007-04-28T20:38:00.001-07:00

So friends, it's Saturday morning and this is the first thing I heard on the news when I turned the TV on. Well there is nothing like the subject of toxic chemicals in our ground water supply poisoning us that lights a fire under my ass! This has long been a research topic of mine, since I am a thyroid disease and cancer survivor.

I just have to share this information as I think there is a large part of our population that has NO IDEA about perchlorate (rocket fuel) and how it's been affecting those of the US population with thyroid issues in ways which they are totally unaware.

I lived in Las Vegas for 15 years. Sometime around the year 2000 there was a report released regarding perchlorate in the water supply which was quickly hush-hushed as "minor amounts, blah blah blah....you are SAFE" (ahem, bullshit). I have thought for sometime now that my genetic predisposition for hypo/hyper-thyroidism + the Los Angeles area I grew up in + living in Vegas for 15 years [where above ground ATOMIC TESTING was done in the 40s & 50s] = what resulted in my thyroid cancer at 35 years old. Truth is, i will never know for sure since my doctors just say "we have no idea..."
-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=Rocket Fuel Chemical Found in Food, Water Supply
Studies Being Done to Determine Long-Term Effects of Small Amounts of Perchlorate on Human Health
April 28, 2007 — - Perchlorate, a chemical used in rocket fuel, is turning up in the nation's food -- in vegetables like lettuce and spinach -- and water supply.
You've never heard of it? Most Americans haven't, but millions have been exposed to it. This week Congress held hearings to determine just how dangerous it is to humans' health.
"A study from the Centers for Disease Control last year tested almost 3,000 people who are representative of the U.S. population. They found perchlorate in every single person," said Dr. Anila Jacob of the Environmental Working Group. so how did something used to launch inter-continental missiles and the space shuttle find its way into our homes?
At a hearing of the House Committee on Energy and Commerce this week, a government report was made public for the first time revealing that at sites in more than 25 states, perchlorate had leaked into the drinking water and soil. About 65 percent of that contamination was attributed to the Department of Defense and to NASA.
The Pentagon said it has invested "over $114 million in research related to perchlorate toxicity," and that they are "developing substitute chemicals." Doctors agree that large amounts of the chemical can lead to thyroid problems in adults and abnormal brain development in children, but it is still unknown how much damage smaller amounts can inflict.
"The developing fetus can have severe inhibition of brain development as a result of perchlorate intake by the mother through drinking water or through breast milk," Rep. Albert Wynn, D-Md. said.
Democrats on Capitol Hill are working on a bill that would require the EPA for the first time to set strict guidelines limiting the amount of perchlorate in the nation's drinking water.
For now, more research is being done to determine if the amounts present today can cause any serious damage to people's health.
Copyright © 2007 ABC News Internet Ventures

2006-12-10T03:22:00.000-08:00

Not lazy my friends, just busy... now that I have a toddler! Here is my latest news copied and pasted from my yahoo 360 blog of September 28, 2006:

This week has been a challenging one for me. As it was last year. Two years ago (while pregnant) I was diagnosed with Papillary Thyroid Cancer and 2004 became a whirlwind for me, much of which happened that year has thankfully been lost in my swiss cheese of a brain.

Last September I had my first post-removal and post-treatment scan. It was CLEAR. That was a surreal and happy moment for me. Of course, any ThyCa cancer patient will tell you that they really don't give you something to cheer about until you have had at least two clean scans, i.e., two years post. So this week is my second scan.

It's no simple deal, the process literally takes all week. I had to go into the Nuclear Medicine department of my local hospital to get Thyrogen injections on Monday and Tuesday morning at 8AM. Thyrogen alters the levels in my body to the degree so that when they gave me a small dose (approx 4 millicuries) of Radioactive Iodine, or I-131 on Wednesday morning, my body would absorb it correctly and then Friday morning brings the Gamma Camera SCAN!

The big bummer is spending time away from my little girl. She is in the loving care of her Daddy who has been just great with her. They are having fun running around town, hitting the park and all... also tonight is FREE ice cream night at COLDSTONE CREAMERY nationwide! He has plans to take her there too.

The government assures its employees and everyone that this stuff is "safe" when handled properly and that those of us with small children should "just make an effort to keep little children away from our neck area where the destructive I-131 might concentrate." Yeah Sure. They also told those poor men who stood in the desert of Nevada in the 1950s that it was safe to stand a few feet from where they detonated atomic bombs ABOVE GROUND that they were "safe" and that any nuclear fallout could be washed off in a shower. Sadly, most of them died of Cancer.

uhhhhhhhhhh.... don't mind me if I err on the side of caution and take a few days away from my little girl. I feel bad enough that I might have passed on weak thyroid genes to her, why complicate things by exposing her to something that could destroy her thyroid totally if I can help it?

So where am I now? in Purgatory. Waiting. Waiting. Waiting. waiting for more radioactive material (technetium 99) to be injected into me tomorrow morning.

the scan.

then more waiting for the results.

I really don't feel negatively about it, I think it will be a clear test. but just re-experiencing this crap brings it back to reality for me. cancer takes me to a dark place. it's scary and ugly and lonely.

my friends, I hope you NEVER have to go there.

Here is the follow-up posting of October 3, 2006 with said pending results:

some of you know me well enough to know that I am not a patient patient when it comes to waiting for test results. True to my nature, I didn't wait for my doctor's appointment scheduled for Oct 5th. I went to the hospital - straight to the records department and requested copies of all records from my visit including lab reports.

The scan report says there is no visible uptake of the iodine in my neck or in remote sites of the body, i.e. chest, lungs, bones, etc... which means NO CANCER! YEAH! NO CANCER TWO YEARS IN A ROW, PEOPLE. yahoooooooooooooo!

Okay. good news is always welcome. thanks again to all of you who have been supportive. I surely do appreciate it.

Now I return you to your regularly scheduled programming.

Major Guidelines for Managing Thyroid Cancer Published in Thyroid Journal

2006-01-23T15:12:00.000-08:00

As you know by now, I stay on top of the latest findings regarding thyroid cancer. Google's News service has a subscription service so any new info posted anywhere gets sent to my mailbox directly. This is a recent find.... very good info to have as a ThyCa patient!

January 20, 2006 08:01 AM US Eastern Timezone

Major Guidelines for Managing Thyroid Cancer Published in Thyroid Journal

NEW ROCHELLE, N.Y.--(BUSINESS WIRE)--Jan. 20, 2006--The American Thyroid Association has released updated, official guidelines for the management of patients with thyroid nodules and thyroid cancer, which reflect a decade of improved strategies for identifying, evaluating, and treating thyroid disorders. The new management guidelines have been pre-published online (www.liebertpub.com/thy) and will be available in print in the February 2006 (Volume 16, Number 2) issue of Thyroid, a peer-reviewed journal published by Mary Ann Liebert, Inc. (www.liebertpub.com).

Prepared by the ATA's Guidelines Taskforce, comprised of a team of experts in endocrinology, surgery, and nuclear medicine from leading academic and research institutions from across the U.S., the guidelines present recommendations for many controversial treatment issues. These include identifying the most cost-effective approach for diagnostic evaluation of thyroid nodules, the extent of surgery needed for small thyroid cancers, the appropriate use of thyroxine suppression therapy, the role of recombinant human thyrotropin, and the use of radioactive iodine to ablate remnant tissue following thyroidectomy.

Led by taskforce Chair David S. Cooper, M.D., Director, Division of Endocrinology, Sinai Hospital of Baltimore (Maryland), and Professor of Medicine, Johns Hopkins University School of Medicine, the taskforce focused on the importance of the timely and accurate diagnostic evaluation of thyroid nodules to rule out thyroid cancer and on therapeutic strategies for differentiated thyroid cancer, which represents approximately 90% of the estimated 26,000 cases of thyroid cancer diagnosed each year in the U.S.

The guidelines also include hands-on information on the follow-up and treatment of thyroid nodules, including the role of medical therapy. They outline the goals of therapy for differentiated thyroid cancer, strategies for staging thyroid tumors, the role of adjunctive external beam radiation and chemotherapy, and long-term management issues.

"I am gratified that the ATA had the foresight to develop evidence-based guidelines that will enable physicians who care for patients with thyroid disease to do so rationally, judiciously, and cost-effectively," says Dr. Cooper.

Thyroid, edited by Terry F. Davies, M.D. , of the Division of Endocrinology, Diabetes & Bone Diseases at Mount Sinai School of Medicine (New York, NY), is an authoritative peer-reviewed journal published monthly in print and online. As the Official Journal of the American Thyroid Association, Thyroid publishes original papers and timely reviews that reflect the rapidly advancing changes in our understanding of thyroid physiology and pathology, from the molecular biology of the cell to clinical management of thyroid disorders. A complete table of contents and free sample issue may be viewed online at www.liebertpub.com/thy

Mary Ann Liebert, Inc., is a privately held, fully integrated media company known for establishing authoritative peer-reviewed journals in many promising areas of science and biomedical research, including Diabetes Technology & Therapeutics and Journal of Women's Health. Its biotechnology trade magazine, Genetic Engineering News (GEN), was the first in its field and is today the industry's most widely read publication worldwide. A complete list of the firm's 60 journals, books, and newsletters is available at www.liebertpub.com.

Gene Mutation and Poor Outcomes in People with Thyroid Cancer

2006-01-05T17:14:00.000-08:00

Newswise — Scientists at Johns Hopkins have found that a mutation in the gene that triggers production of a tumor growth protein is linked to poorer outcomes for patients with papillary thyroid cancer (PTC).

A report on the study is published in the December issue of The Journal of Clinical Endocrinology and Metabolism.

Mingzhao Xing, M.D., Ph.D., an assistant professor in the Division of Endocrinology and Metabolism at The Johns Hopkins University School of Medicine, led the multi-center study. “This discovery should help physicians rate risk levels for patients with PTC,” he says.

The gene, called BRAF, is part of a signaling pathway that, when activated, is known to cause tumor growth, and mutations in BRAF have been linked to a variety of human cancers, the researchers say.

For the study, Xing and colleagues looked at information from 219 PTC patients from 1990 to 2004. The relationship among BRAF mutations, initial tumor characteristics, cancer recurrence and clinical outcomes was analyzed.

Results showed a “significant association” between BRAF mutation and spread of the cancer from the thyroid, lymph node metastasis, and advanced tumor stage at the time of surgery to remove the cancerous thyroid gland. The thyroid, a gland located beneath the voice box (larynx) that produces thyroid hormone, helps regulate body cell growth and metabolism.

Results also showed that, given an average follow-up of three to four years, 25 percent of patients with BRAF mutations experienced tumor recurrence compared to 9 percent without evidence of BRAF mutations.
BRAF mutation was also an independent predictor of recurrence in patients with early disease, with 22 percent recurrence in those who had BRAF mutations versus only 5 percent in patients without the mutation.
Finally, BRAF mutation was more frequently associated with treatment failure in recurrent disease, according to the study.

“By illustrating a higher risk of poorer outcomes and recurrence, these results should help physicians perform better risk analysis of patients with PTC, which in turn will lead to more tailored treatment of the disease,” Xing said.

PTC is the most common thyroid cancer, accounting for 80 percent or more of thyroid malignancies. Although PTC is usually curable with surgical removal of the gland, often followed by radioiodine treatment, many cases recur and are fatal.

The ability to predict outcome has traditionally been based on such factors as patient age and gender, tumor size and the nature of the spread of disease. However, these criteria often leave uncertainty regarding the risk of tumor progression and recurrence. “What we have is a novel molecular diagnostic tool that will improve existing clinical efforts,” Xing said.

The study patients were recruited from The Johns Hopkins University School of Medicine; The Yale University School of Medicine; The Hospital for Endocrine Surgery in Kiev, Ukraine; and The University of Bologna Hospital in Bologna, Italy.
Other contributors from Hopkins include William H. Westra, M.D., professor in the Department of Pathology; Ralph P. Tufano, M.D, assistant professor in the Department of Otolaryngology -- Head and Neck Surgery; David Sidransky, M.D., professor in the Department of Otolaryngology -- Head and Neck Surgery, and Paul W. Ladenson, M.D., director of the Division of Endocrinology and Metabolism.

The study was supported by grants from the National Institutes of Health and the Flight Attendant Medical Research Institute.
© 2006 Newswise.

Role Of MicroRNA Identified In Thyroid Cancer

2006-01-05T17:09:00.000-08:00

24 Dec 2005:

The presence of only five tiny strands of RNA is enough to clearly distinguish cancerous thyroid tissue from otherwise normal tissue, scientists say.

The findings provide more evidence that an emerging set of RNA genes called microRNA (miRNA) is a powerful regulatory force in the development of cancer and other diseases. The study is published online in the Dec. 19 Proceedings of the National Academy of Sciences.

Scientists already know that some people inherit a predisposition to developing papillary thyroid cancer (PTC), the most common form of thyroid cancer, representing about 80 percent of all cases. Although changes in key cell-signaling systems and gene translocations are sometimes present in thyroid tumors, no specific gene mutations have yet been identified that are directly linked to the predisposition of this type of cancer.

That led researchers in The Ohio State University Comprehensive Cancer Center to conclude that while genetic mutations may indeed cause some people to be more likely to develop PTC than others, the mutations may not occur often enough to be readily detectable. They hypothesized that any predisposition to PTC might be more reasonably linked to a more subtle, complex interaction among several genes - suggesting a possible role for miRNAs.

MiRNAs are smidgens of genetic material no longer than 22 or so nucleotides in length. A gene, in comparison, can be tens of thousands of nucleotides long. Scientists used to think miRNAs were parts of long stretches of functionless, "junk" DNA in the genome. But Dr. Huiling He, a research scientist in the Human Cancer Genetics Program at Ohio State and the lead author of the study, says researchers are now beginning to understand how important they may be.

"The identification of miRNA 'signatures' in cancer and other diseases has really changed the way we think about the process of malignant growth," says He.

Old dogma held that a gene carries a recipe for a molecule of messenger RNA which, in turn, carries a blueprint for the creation of a particular protein. Any mutation in the gene could affect the production of the protein. But recent studies have shown that protein production can also be manipulated indirectly through miRNAs.

"MiRNAs can latch on to part of the messenger RNA and scramble its ability to properly carry out its original coding instructions," says He.

Under the direction of Dr. Albert de la Chapelle, a professor in the department of molecular virology, immunology and medical genetics at Ohio State, He and other researchers examined samples of malignant tissue from 15 patients diagnosed with PTC and compared them with normal appearing tissue adjacent to the tumors.

They found 23 miRNAs that were significantly altered in the cancerous tissue when compared with the normal samples, with three of the miRs - miR-146, miR-221 and miR-222 - dramatically overexpressed, or "turned on," registering 11-to-19-fold higher levels of expression in the tumors than in the unaffected tissue nearby.

Further investigation revealed that two additional miRs - miR-21 and miR-181a - when coupled with the three that showed dramatic overexpression, formed a "signature" that clearly predicted the presence of malignant tissue.

"We also discovered miR-221 expression in all of the apparently normal tissue of the patients with PTC, but it was significantly overexpressed in a subset of three of the samples, suggesting that increased activity of miR-221 may be one of the earliest signs of carcinogenesis," says de la Chapelle.

Some scientists believe miRNAs act like oncogenes, molecules that promote cell growth, and they also feel they may be tumor and tissue specific. For example, in many other forms of cancer, miRNA activity is suppressed, but in PTC, researchers found just the opposite: 17 of the 23 miRNAs they discovered were overexpressed.

According to the American Cancer Society, the incidence of thyroid cancer has been increasing slightly over the past several years. It estimates that about 25,000 new cases will be diagnosed in the United States this year.

"This is just the beginning of our work identifying the role of miRNAs in thyroid cancer," says He. "But we are encouraged by these findings. We feel that they help point the way toward new options in diagnosis and treatment for this disease."

A grant from the National Institutes of Health supported the research team, which included Drs. Krystian Jazdzewski, Wei Li, Stefano Volinia, George Calin, Carlo Croce and Chang-gong Liu, all of the Ohio State Human Cancer Genetics Program; Dr. Saul Suster, from OSU's department of pathology; Dr. Richard Kloos from OSU's departments of internal medicine and radiology; Rebecca Nagy, a genetic counselor in the Human Cancer Genetics Program; Sandra Liyanarachchi, a biostatistician in the Ohio State Human Cancer Genetics Program; and Dr. Kaarle Franssila, from the department of pathology at Helsinki University Central Hospital, Finland.

Michelle Gailiun
gailiun.1@osu.edu
Ohio State University Medical Center
http://www.osumedcenter.edu

Test Results are in!

2005-09-20T16:46:00.000-07:00

Radiologist report says it's "unremarkable"!! That is good news according to the Oncologist, she said the scan results in combination with the Thyroglobulin blood test results do not show any indication of cancer! WAHOOOOOOO

I have waited 10 long months for this answer. It's so weird that they gave me the treatment and then I had to wait all this time to find out if it worked. It was difficult and I tried to put it out of my thoughts but in the back of my mind the thought was always there that it might not have worked.

So now I am celebrating life.

I owe many thanks and hugs to my friends and family who supported me with love and prayers during this whole adventure. Thank you.

More to come as I find the time to blog. Leila is one now and keeps me on my toes, so not much time on the computer it seems.

Whole Body Scan

2005-09-16T16:43:00.000-07:00

Okay I had to be at the hospital before 8AM (no coffee, ugh). First I went to the lab to talk to a person with - well - NO personality. She was as friendly as a cardboard box and proceeded to tell me there was no phlebotomist there to take my blood for the lab tests prior to my procedure.
That figures.

Things just don't happen normally for me. I am used to it now. It's a cosmic joke and I have decided to just laugh along with the process, it keeps me from going crazy or postal.

I get kind of funny when I am nervous about things and I was cracking some pretty good jokes and one-liners, just ask my friend Connie who accompanied me. So I told miss no-personality I needed to use her desk phone to call Nuc Med to let them know why I would be late to my appt.. since there was no phlebotomist. She accomodated me. I called them and the lady from that department came down to talk to them. I gave blood. done deal.

Then off to Nuc Med. They gave me another injection of something called Technetium-99 href="http://www.epa.gov/radiation/radionuclides/technetium.htm">http://www.epa.gov/radiation/radionuclides/technetium.htm"> which is used as a tracer for the diagnostic scan.

I was out in about 30 minutes. The scan was unbelievably easy and fast. I drilled the tech with questions, he was cooperative but seemed kind of surprised. I guess most of their patients don't ask questions! Welcome to my world, people.

I haven't slept too well this week and have tried to absorb my free time with that good book and some magazine reading. TV just stinks.

Home to Leila today and Rick went back to work. They said I am safe to be around her now. Cool.

The GAMMA CAMERA aka e.Cam

2005-09-15T22:28:00.000-07:00

Hey if you click on the title of this post you can read about the technology used for this procedure (scan) on Friday. It's state of the art, very cool and VERY thorough for my needs!

A Quiet Day

2005-09-15T20:25:00.000-07:00

Thursday.

Wait.

Let the radioactive stuff do it's job - travel through my body spreading it's tentacles out to every part and hopefully there will be no cancer for it to find. Nothing on that scan means just that - nothing there.

Hope

Radioactive Iodine today

2005-09-14T16:44:00.000-07:00

Okay last night when signing off I had a brain-fade. Of course today I received the radioactive iodine. Again this came in the trademark lead container, the pill never touching the hands of the Nuclear technologist or mine. "just swallow it down with this glass of water..." *GULP*

they told me even though it's a small dose it was a good idea not to hold my daughter close - the dose is dangerous to her thyroid. Yeah right, try doing that when you are with her alone all day. Rick and I decided to be cautious so he is staying home with her for two days and I am staying at Shalita's.

It's hard but at least I know she is okay and I am not doing any harm to her.

I still feel nauseated and blah.... but ginger ale and the distraction of a good novel "The Archivist" plus AWESOME Thai Curry Chicken for lunch - ohboy was that a treat!

Better this time

2005-09-13T20:40:00.000-07:00

Whew!! After I left the Hospital's Nuclear Medicine department where I received the injections, I started sipping that Ginger Ale ASAP. I have to tell you I think that helped tremendously to keep the nausea from getting out of hand. I still felt kind of dizzy and had a head splitting headache for the day, but never got sick. Thank God!

Tomorrow no treatments. yay.

Okay here we go again

2005-09-13T08:13:00.000-07:00

Injection day number two. Filled with dread and thoughts of hours spent in the bathroom again. I would rather be in pain than sick at my stomach.

This time I am armed with Nexium (little purple pill for acid upset) and a 2 liter of Ginger Ale and crackers)

Got the injection, different nurse today. Kind of frightening, neither one of the nurses had ever given thyrogen injections and had to read the prescribing sheet and instructions first. Thank God they were women, or they might have even skipped the instructions part (lol).

Check back later for how I survived today. Home with Leila - hope I won't be as sick as before.

NO ONE TOLD ME I WOULD BARF!!

2005-09-12T21:54:00.000-07:00

HA! Now that I have your attention...

ohmygoodlord have I been sick all day. First I was dizzy as heck, happened right away and lasted through the day which was later accompanied by nausea I haven't felt since pregnancy. Then about five hours post injection I started to be sick at my stomach and proceeded to be so for hours... on into the evening. I had to put Leila in the playpen and turn on "Bear in the Big Blue House" until Rick got home and could take over. He found me lying on the floor next to her playpen, too sick to get up and move.

Oh God please don't let tomorrow be as bad. I have to get another injection?! Is this really better than going hypothyroid for six weeks. Ask me later.

Thyrogen Mediscan - First Follow Up since treatment

2005-09-12T08:05:00.000-07:00

Well this week it's (finally) time for my Thyrogen Mediscan to check for cancer and see if the treatment I had in Nov 04 worked! So this morning I received the first of two Thyrogen injections which serve to raise my TSH level high enough (over 30) to uptake a very small dose of radioactive iodine. Yes, this is the same I-131 I had back in November to ablate the remaining cancerous thyroid tissue - however it is minimal compared to the dose I received last year. In Nov I was given approx 100 millicuries of radioactive iodine but this time it will only be approx 4 millicuries. This is just enough to uptake into my system and show up at the end of the week in the scan.

Here is some info from the company: "Thyrogen® is a highly purified recombinant source of human thyroid stimulating hormone (rhTSH) developed for use in well-differentiated thyroid cancer patients who have had near-total or total thyroidectomy, and who must therefore take thyroid hormones and undergo periodic testing for recurrent or persistent cancer. Thyrogen raises serum TSH levels, stimulating I-131 uptake and thyroglobulin (Tg) production and release by cells of thyroid origin"

So this is the plan: Monday: 1st Thyrogen injection - Tuesday: 2nd Thyrogen injection - Wednesday: Radioactive iodine - Thursday: Nothing! - Friday: Lab tests and Scan. Then....WAIT WAIT WAIT until following Tuesday for the results, ugh.

Birthday Calculator

2005-07-28T07:56:00.000-07:00

A family member sent me the link to this "birthday calculator" - put your b-day date in and it spits out this:
You were born on a Thursday under the astrological sign Sagittarius.
Your Life path number is 1.
The Julian calendar date of your birth is 2440209.5.
The golden number for 1968 is 12. The epact number for 1968 is 0.
The year 1968 was a leap year.
As of 7/28/2005 10:47:39 AM CDT You are 36 years old.
You are 439 months old.
You are 1,910 weeks old.You are 13,370 days old.
You are 320,890 hours old.
You are 19,253,447 minutes old.
You are 1,155,206,859 seconds old.
There are 144 days till your next birthday on which your cake will have 37 candles on it.
Those 37 candles produce 37 BTU's,or 9,324 calories of heat (that's only 9.3240 food Calories!) . [YIKES!]
You can boil 4.23 US ounces of water with that many candles.
Your birthstone is Blue Zircon
birth tree is Fig Tree
Sensibility Very strong, a bit self-willed, independent, does not allow contradiction or arguments, loves life, its family, children and animals, a bit of a butterfly, good sense of humour, likes idleness and laziness, of practical talent and intelligence.
There are 150 days till Christmas 2005!
The moon's phase on the day you were born was new.

2005-06-27T17:06:00.000-07:00

"Elvis is dead and I don't feel so good myself."

Pregnant With Cancer Network Link

2005-06-27T16:47:00.000-07:00

Thought I should put this out there for any others who may be in need of their services... they were my lifeline during the whole ordeal!

ONE-ON-ONE SUPPORT FOR THYROID CANCER PATIENTS!

2005-01-09T10:05:00.000-08:00

I found this post on my yahoo groups:
Hi everyone, ThyCa also offers one-on-one support through it's toll-free number and Person-to-Person Network. We match thyroid cancer patients to volunteers who have similar types of cancer and situations. We also try to match them to someone in close proximity to where they live or as close as we have a volunteer. These services are invaluable to those newly diagnosed, those strugglingwith treatment and those dealing with recurrance. I applaud all of you who reach out to others in their time of need...I know we're making a difference!
Peggy Melton 972-384-1866
1-877-588-7904
ThyCa Person-to-Person Coordinator
ThyCa Toll-Free Number VolunteerFacilitator ThycaDallas Dallas, TX

'Wow! What a Ride!

2004-12-28T16:29:00.000-08:00

Life should not be a journey to the grave with the intention of arriving safely in a pretty and well preserved body, but rather to skid in broadside in a cloud of smoke, thoroughly used up, totally worn out, and loudly proclaiming 'Wow! What a Ride!' -- Hunter S. Thompson

HOME AGAIN

2004-12-11T08:32:00.000-08:00

Hallelujah! Leila and I are home again! I am so thankful to all of my family - everyone pitched in and helped us out so much.

I was well taken care of by my Dad, he kept me company when I was feeling sick and depressed.

Leila was well loved and cared for during the nearly three weeks I had to stay a safe distance from her. It was one of the hardest things I have had to do in my adult life, to be near my baby but not hold her, feed her or kiss her. It was a joyful reunion when I finally felt safe to care for her full-time again.

Leila has grown so much in the 5 weeks we were away from home. She is chubby! She coos and tries to talk all the time and responds to every expression we make with smiles. She took the moving around from Mom's, Sarah's and Grandma's homes like a champ - like it was just another day and a new "mommy". I am so proud of her.

Now that I am home I sure miss my family. There are so many people and things going on - I had forgotten what it was like to be in action all the time. Here in northern California it is such a slow-paced lifestyle.

Dad, Mom, Sarah, Parker, Andy, Stephy - I miss you already.

Love you.

2004-12-03T08:36:00.000-08:00

JUST A LITTLE HUMOR FOR THE DAY...

THYROID TREATMENTS TRIP ALARMS, STUDY FINDS

2004-12-02T10:37:00.000-08:00

"Radioactive medical procedures can set off alarms in a post-9/11 world"
By Liz Szabo, USA TODAY

Most seasoned travelers know that their watches and belt buckles can set off airport metal detectors. A new study also shows that patients who have certain medical procedures might themselves set off security sensors designed to find "dirty" bombs or other radioactive weapons.

Patients may emit small amounts of radiation after being treated with radioactive iodine, for example, or after being injected with compounds used in PET scans, bone scans and cardiac stress tests, says Lionel Zuckier, a radiology professor at New Jersey Medical School.

Patients have been treated with "radiopharmaceuticals" for years, and 16 million nuclear medicine procedures are performed each year, according to the Society of Nuclear Medicine. Since 2001, however, doctors say they're hearing about more patients setting off portable radiation detectors used in subways, tunnels and other public places, says Zuckier, who presented his findings Tuesday at the annual meeting of the Radiological Society of North America in Chicago.

Patients injected with a material called FDG before having a PET scan stop emitting a detectable level of radiation within 24 hours. But patients undergoing iodine therapy for thyroid conditions emit radiation for 95 days.

Many doctors say they now provide patients with detailed explanations of their treatments, along with telephone and pager numbers, just in case patients are stopped by security. Chaitanya Divgi, a nuclear medicine specialist at New York's Memorial Sloan-Kettering Cancer Center, says security officers have called about his patients 15 to 20 times since 2001.

One elderly couple in a Winnebago were detained last year at a bridge at the Canadian border while trying to return to Michigan from a camping trip. The man recently had been treated with iodine-131 for his thyroid, says Michele Beauvais, director of nuclear pharmacy at William Beaumont Hospital in Royal Oaks, Mich., where the man was treated. The patient showed border guards a card explaining his treatment.

"The guards said, 'Well, you can go, but we have to keep the Winnebago,' " Beauvais says. "It kept setting off the sensors." Guards eventually realized the suspicious signals were coming from the contents of the Winnebago's toilet. "None of the people at the bridge wanted to empty it," Beauvais says, "so they eventually let him go."

...hmmm... I should have an interesting time getting through Orange County and Sacramento Airports on December 10th when I fly home!

I TALKED TO THE DOCTOR!

2004-12-02T08:09:00.000-08:00

Okay... finally the doctor called late yesterday. By the time he called, I had a list of 10 questions. Most of them had been answered by my own online research and by the nice people (other thyroid cancer patients) on the Yahoo Groups ThyCa Forum. So I ran them by the doctor for verification and he said yes, that they were correct. Several ladies from Yahoo Groups replied to me that they thought my scan was GREAT, that it looked normal to them. Keep in mind that most of these people have been through this several times already, so even though they are not doctors - their experience was just as valuable to me. It also helped to ease my mind.

Here it is.. the doctor said "it's a good scan, Christy - those are good results"

... I do wonder why he didn't just SAY THAT into my answering machine instead of rambling on and sounding so weird.

I asked if the uptake in the nasal area could have been from the cold or congestion that I have and he agreed that it could have been as that would not be the kind of place one would find thyroid cancer.

I asked what it meant that there was 'uptake' shown on the scan and he said that they expect to show uptake in the scan.. if there had been no uptake then it would have meant they didn't give me enough I-131. The uptake is where there is still residual thyroid tissue (healthy or cancerous, no way to tell the difference from this). The I-131 is also typically taken up in specific tissues like the thymus (middle upper chest region), breasts, liver, stomach, bowel, urinary tract including the bladder. However, the I-131 will continue to work for a number of months to kill off all thyroid tissue, whether cancerous or healthy. The key here is no "abnormal" uptake outside of those areas!

I inquired why he had made the comment that my case was not as straightforward as most - since no other doctor has referred to me in this way it had confused me. He apologized and explained he said so because I was diagnosed with thyroid cancer while pregnant, which was very uncommon. Thyroid cancer is uncommon enough by itself... he said "you sure had a lot going on at one time!" (agreed).

I asked him if this meant that the cancer could come back eventually. He said yes. That with cancer there are no guarantees of a cure. They expect that this will have taken care of it, and I will continue to be monitored regularly with blood tests and periodic scans like the one I just had. If it starts to show again then they will just take care of it with surgery or another blast or radioactivity.

I'm not worried. I feel like I have been through the worst of this adventure - the unknown - and whatever may happen in the future will not be as devastating as what I have gone through this year.

Thank you, everyone, for your prayers, encouragement and support. It has continued to lift me when I felt like I couldn't even think straight!

sodium iodide symporters & other information

2004-12-01T13:27:00.000-08:00

I am doing research right now and also asking questions to other Thyroid Cancer patients about the information on that report. I understand some of it but not all.

It was explained to me that the I-131 ablation (treatment) will continue to work for a number of months to kill off all thyroid tissue, whether cancerous or healthy. Another lady said that uptake in salivary glands is very normal.

I Just read this online regarding sodium Iodide Symporters "...Other tissues in humans contain sodium iodide symporters: the gastric mucosa, salivary glands, mammary glands, choroid plexus, ovaries, placenta, and skin (Smanik and others 1996~. Breast tis- sue, which contains iodine symporters, can therefore pump iodine into breast milk." http://books.nap.edu/books/030906175X/html/45.html

it's from a report or book titled "Exposure of the American People to Iodine-131 from Nevada Nuclear-Bomb Tests: Review of the National Cancer Institute Report and Public Health Implications" from the National Academies Press

What the Report Says

2004-12-01T13:18:00.000-08:00

I went to the hospital and got a copy of the ACTUAL post RAI report so I will know exactly what it said:

"Uptake is seen in the lower neck presumably in the area of the thyroid and there is lesser area of uptake above that, likely also in the thyroid bed. A fair amount of uptake is seen in the salivary glands and there is some asymmetry with uptake on the left probably in the nasal sinus. Some bilateral uptake is seen in the breasts likely due to the sodium iodide symporters. No areas of abnormal uptake are seen in the chest, abdomen or pelvis."

I know that the fact there there were no areas of abnormal uptake elsewhere is a good thing...

but is the rest good, bad or indifferent?

Waiting to Talk to a Doctor on the Phone - need some answers!

2004-12-01T10:15:00.000-08:00

Now it's Wednesday...

So yesterday's 'waiting for answers' only panned out confusion for me. I am trying again today. Early this morning I placed calls to both the Chico doc's office and also to the doc here at Hoag (the one that administered the treatment) & left messages requesting a phone consultation. I just want to ask some questions.

What does all that stuff mean? Could someone please explain in plain layman's English so I can comprehend what is going on in my body? LOL. It really doesn't seem like too much to ask.

I am making plans to go to the records department of the hospital this morning and pick up a copy of the actual report so I can have it with me and in front of me when a doctor calls.

Scan Results, kind of confusing

2004-11-30T17:52:00.000-08:00

Would you expect anything less than confusing for me?

I waited and waited for the doctor's call. It never came. Suddenly it occurred to me that maybe they called my home phone! So I called home and played back all the messages, unfortunately there were two weeks of phone messages which had not been deleted so I had to listen to all of them FIRST... it took 12 minutes.

Last call was from the doctor who is filling in for my Radiation Oncologist this week. He indicated that my "case is not as straight-forward" as most... The radiologist that read the pictures indicated that there was some uptake in the thyroid bed which was to be expected. Also there was some uptake in the nose(?) but he may have said nodes (it is hard to understand when listening to the messages via my cellphone) - he said that radiologist was not sure whether or not this was 'significant'. He said "things look about as well as can be expected" (what the heck does that mean?)

He didn't mention any other areas of involvement and said "all and all things look great."

He said I can call the office tomorrow, he won't be in but I can talk to one of the other doctors. Basically that means that I can call back, leave a message and wait all day for someone to call me again.

I almost wish I hadn't heard the phone message. All it has done was given me more questions.

At least he didn't say that they want me to come in to discuss it - that would have meant bad news (in my opinion)

Waiting for Scan Results

2004-11-30T10:17:00.000-08:00

I called the Nuclear Medicine Department at Hoag Hospital this morning to inquire about the results from my scan. The report is "in"... but it is being mailed to my doctor in Chico! UGH!! So I asked them to please fax a copy right away (this morning) and that is now being done. Then I called my doc's office in Chico and naturally, he is not there this week. hahahahaha! So I asked that whomever is seeing his patients would please call me as soon as they receive the fax and read the report. I explained that I am on pins and needles here and want to know the results as soon as possible since it's been such a long drawn-out journey to even get to this point.

Will post results as soon as I know.

Whole Body Scan (a.k.a. WBS)

2004-11-30T08:20:00.000-08:00

Well, I made it through the whole body scan (MRI), it was easy except that they tell you, "Okay now this object is going to be right above your face for about 10 minutes and you have to hold COMPLETELY STILL..." which is when my pinky toe starts to twitch or itch or my neck is cramped from holding in place so long for the first half of the scan. hahahah!! But I was a good girl. I didn't move and they didn't have to re-do any pictures.

Now I get to wait two days and make phone calls to find out which doctor I talk to so I can get some answers.

"Who You Are" by Lanette Fernandez

2004-11-28T06:04:00.000-08:00

This one came in my daily inspirational email from MountainWings.com

"Who You Are"
============
I find myself on the downhill slide of yet another trial in my life where confusion seemed to be the only thing I was sure of.

Who, what, why, when, how, and how long were the questions I didn't have answers for. Last night, I sat quietly and instead of asking, I just listened. God whispered to me.

Who I am is a child of His. What I am is a wife and mother. Why is something we can only figure out as we go along.When is always and can never be more than right here and right now (live for today). How is only with His help, and how long depends mostly on us. He explained to me that I am who and what I am (don't try to be any more or any less) therefore I need to do and be the best that I can at all times.

I get discouraged, but I also have the ability to inspire and be inspired. I become sad sometimes, but I can also experience joy. I can become angry, but I have the heart to console. I need to be forgiven sometimes (a lot) but I can also forgive. I feel helpless at times, but can still lend a hand or ear to help others. I am a teacher, but I still have much to learn. I get confused, but deep down I know the answers are within my grasp. It is the same grasp that boldly lifts my hands to Heaven, and gently brings me to my knees. Sometimes I feel lost, but that is merely an illusion because it is not only enough for my Father to know where I am and exactly what I am going through, He has every hair on my head numbered.

Life is a series of lessons to be learned. That is the only way we can grow. I wish I had all the answers, but sometimes I think (I know) the only way for us to become stronger and grow into what He wants us to be, is to walk through the fire. So, whatever you're going through, hold your head up, guard your heart, and put all your faith and trust in the only ONE who will never fail you....... JESUS.......

Remember all the things you can be even when you are sometimes those things you wish you weren't.

~ Lanette Fernandez, Wyoming

I Refuse to Stay Sick

2004-11-27T15:31:00.000-08:00

I am already starting to feel better! That tonic stuff tastes horrible but it sure works if you take a lot of it in the first 24 hours. Most of the bronchitis symptoms are gone.

My adventure in thyroid withdrawal and RAI treatment.. the short story

2004-11-27T07:33:00.000-08:00

(this entry was actually an email reply to someone I had forgotten to 'update' on the latest with me, but am including it here as it might fill in the blanks for some of you as well)
Oh I am doing okay so far. As ever, there was still a lot of confusion or should I say a lack of agreement as far as how long I should stay away from Leila. My doc in Chico (where I live) said basically to stay away from her for 7-11 days totally and then to spend time with her during the day afterwards at varying degrees of proximity. The doctors here in southern California where I was treated with the RAI had the usual cavalier attitude.... just stay away from babies and pregnant women for 7 days. flush 3 times and launder seperately for the first 4 days.

They gave me 98.4 millicuries which I asked why it wasn't 100 mci? They said that as long as it is within 10% of the "dose" it still counts as the full dose.....I said "okay... that is weird", but what the hell do I know about radioactive iodine.

I didn't get a whole body scan (WBS) before treatment. they said they don't do that here as a rule... that they were giving me the dose or RAI no matter what an WBS would show. so much for hoping for that miracle from God saying I wouldn't need the RAI after all. hahahah pardon my sarcasm, it is keeping me relatively sane. I will get my WBS Mon Nov 29th. I have no idea what it entails, how long it takes, if it is an MRI etc... as usual they are keeping me in the dark until the day of the procedure. I have long since given up the idea of control in my life otherwise I would be looking for someone's butt to chew.

the whole hypothyroid roller coast was HELL...!! it was everything I had read about online from all the other people who had been through it - about the neurotic feelings, dropping things, standing in front of the refrigerator for 10 minutes looking for the hairbrush, losing the train of thought in the middle of a conversation. I said my brain became like an etch-a-sketch - all nice and pretty one minute and a blank screen the next. Interestingly enough the tendonitis in my thumbs which was very painful went away when I was on NO Levoxyl. So it confirms what I thought which that either I can't tolerate high doses of levoxyl or that just having high doses of synthetic thyroid in my system does not agree with my joints and tendons since I end up in chronic achy feelings in all kinds of places.

Then there is the low-iodine diet a.k.a welcome to the "land of bland". My doc at home was sort of ... well, he didn't seem to think it mattered whether or not I did the low iodine diet before treatment!! I didn't believe that. I chatted with too many other thyca patients on yahoo groups to know that it IS important to help assure a better treatment, especially the first time. I like my doctor and all, but he also didn't take me off of the thyroid meds early enough. So when I got here they tested my TSH and it was only 1.8. Not high enough to give me the RAI. I had to WAIT ANOTHER WEEK!! Another week on that diet too. I was ready to go ballistic on someone, I tell ya. I exercised a lot of self control and did alot of praying for strength and acceptance. Unfortunately I live in a small community and my alternatives for treatments and doctors are very limited unless I travel 3 hours to San Francisco every time.

The doc here that gave me the RAI told me I could start taking the Levoxyl the morning following treatment and I sure did. 175mcg Levoxyl which made me extremely dizzy and achy for the first 4 days after I started taking it. I guess it was a shock to my system. Howoever it has been 10 days on it and I already feel better, not as heady and weird, not as forgetful and certainly NOT AS TIRED! hallelujah. When I get home I will consult with the internist, not the radiation oncologist, about my correct dosage because I don't think I should be on such a high dose for a long period of time or it could bring on heart problems and osteoporosis. Just what I don't need.

HAPPY THANKSGIVING EVERYONE!

2004-11-25T09:29:00.000-08:00

This year I am happy to be alive. I am also happy I will see my Leila today. She is going to get a chance to meet many relatives who have only seen her in pictures so far, it’ll be nice.

I have two Thanksgiving events to go to, which will mean too much eating followed by a much-needed turkey induced NAP.

Well I do believe I have bronchitis since I now have the congestion I was wondering about yesterday. No problem since I started taking Echinacea and Goldenseal at the onset of symptoms and then started drinking Echinacea Ginger Tonic today (which tastes horrible, yuck).

New Symptoms

2004-11-23T07:20:00.000-08:00

Now a new symptom/side effect I am wondering about. I have had - for the last two days - what feels like throat congestion. I keep dry-coughing as though I could rid myself of phlegm but, alas, nothing comes up or out! I definitely feel a tightness in my throat when I inhale through my mouth. I am definitely hoarse sounding. Exhaling does not produce the tight feeling. There does not appear to be anything in my lungs as far as congestion goes (I can't feel it, let me put it that way). Anyhow I posted this inquiry to the Yahoo Group for Thyroid Cancer survivors... It would help me to know if I need to find a quick care place to go to or if I should just hang in there and let it pass normally. I am thinking it might be swollen glands in my throat or neck, is that a possibility?

I am 500 miles from home for treatment for thyroid cancer, and sort of hanging by a thread. My doc at home defers to the doc here who defers back to my doc at home so I don't get any real answers or help. It is an endless maddening cycle for me, in this time when I really need some stability. I don't have an endo, there are none in my area who will take my insurance so I am being treated by a radiation oncologist. So far I have managed to get the RAI and am supposed to have a WBS on Nov 29th. In the meantime I am trying diligently to take care of myself and not freak out over every little detail since no one in the medical profession wants to answer my questions!

Baby Girl

2004-11-22T07:32:00.000-08:00

Good-day,

I have been able to see my little precious baby twice, but have stayed a cautious six feet away. That's hard to do when she is laying there trying to talk, making all those cute little baby sounds. The last two days she was really "going to town" almost like she is excited to hear her own voice and she erupts into a smile so easily when anyone tells her she is a "pretty girl". Just warms the heart.

My next big event is Thanksgiving with the family! I have two events to go to, I will probably be worn out after the first one. I have noticed that after a few hours of functioning that I become very lethargic.

I try not to push it too much, just take my time and relax with a book or a magazine if I am unable to sleep (which is often).

The side effects of the treatment are weird. there were those immediate effects which came along in the first hours and then over the next few days. Now I am a week past treatment and new stuff is coming along!

The Feeling of Disappointment

2004-11-19T08:09:00.000-08:00

Several people made promises to come see me and keep me company but everyone has come up with excuses why they can’t, so I am sitting here feeling very disappointed in them. I am tired of always being available for my friends who somehow come up with excuses of why they can’t be there for me when I need them (which is RARELY).

At least I have my family. They have not let me down!

This being secluded from the rest of the world is horrible. How can people stand this for long periods of time? Even if I don’t feel like talking to people, I can usually go sit in a coffee shop or a movie theater alone – but not right now. UGH!

ANSWERS TO YOUR QUESTIONS

2004-11-17T07:25:00.000-08:00

I have received several phone calls and email inquiries from my friends and family asking about how everything works and how many chemo treatments I am getting, etc. I am not getting radiation or chemotherapy! This is a one-treatment deal. Thyroid cancer is rare, only about 20,000 people a year are diagnosed (representing about 1 percent of all cancers), which means the treatment is different from conventional cancer treatments like chemo and radiation.

The I-131 (radioactive iodine) is what was found in nuclear fallout from the above-ground testing in Nevada also at places like Hiroshima and Chernobyl. It destroys thyroid cells and can cause cancer (including Leukemia and Lymphoma). For those people whose thyroid gland has been removed, a high dose is used to kill thyroid cancer cells remaining anywhere in the body. This high dose given to me can only be given once every six months, but if it works the first time I may not have to repeat unless the cancer comes back years down the road. It is very toxic which is why it's not given in several doses for weeks at a time( like chemo or radiation) and why I have to remain a safe distance from people for the first week following treatment.

Basically I took this pill which was delivered to me in a lead container, you know, with all the "RADIOACTIVE - CAUTION" stickers everywhere. Talk about a controlled substance! Then they made me stand at the door, held a yardstick to me and measured with a Geiger counter to measure the amount of radiation emanating from my body. I was then sent home to where I am staying with explicit instructions about exposing others. I am kind of like the boy in a bubble right now... in two weeks I go back to the hospital for a whole body scan (probably MRI) to see what happened with the treatment, to see if there are any hot spots or cancer showing up anywhere. I am praying for a clean scan.

Leila is with my mom. I cannot see her at all for one whole week, afterwards I can spend time with her during the day but not get real close or hold her for a few weeks. After three weeks I am basically considered ok to hold my baby near me again.

At this time I wear rubber gloves while typing on the computer so that I don't leave radioactive waste on it. I have to use plastic utensils and plates for the first week and wash my laundry separately. 24hrs after treatment I was able to resume my regular eating habits, what a tremendous relief!

The Day After Treatment

2004-11-16T18:33:00.000-08:00

I felt kind of sick most of today. Nauseated and really exhausted. Definitely worse than yesterday but I was expecting that to be the case! The order of the day is read, sleep, read some more, check email and sleep!

I'm feeling a little better tonight, I am ready to tackle a big fat burrito with hot sauce ....ahhhhh... three weeks on a special plain diet was hell, I'll tell ya.

Treatment Day! YEAH!

2004-11-15T13:28:00.000-08:00

Helllloooooo from sunny southern California!

Okay I survived the wait of the extra week until I could get my thyroid cancer treatment. I'll tell you, that really was the WORST of it so far. Going in - heart and mind set to get it done and move on, only to be told "no, your body is not ready yet ... come back next week and we will try again." Aaaaaaaaaaaaaack! I do believe my theme song for this period was "Anticipation"

For lunch today I swallowed two blue pills containing a total of 100 millicuries of radioactive iodine. They were brought to me in a lead container with radioactive-warning labels on it, inside were plastic vials containing the radioactive iodine pills. The pills were metallic blue and sort of heavy feeling. YUM!! Actually I was so happy they even allowed me to do it today that I almost jumped out of the chair to hug the doctor and physicist. Of course then they would have sent me to the psych ward via those nice young men in their clean white coats. hahahahah. They didn't make me stay in the hospital - it was all done outpatient style. Just like a drive thru, if you think about it. "Welcome to Nuclear Medicine, may I take your order? Just swallow these two pills and think nice thoughts about your cancer cells dying the miserable death they deserve… Thank you, have a nice day!"

When I came home I felt fine. After about an hour I began to feel extremely tired and cold, so I took a nap for a few hours. Now I just feel the need to let everyone know that I am okay and going through the radioactive adventure. Basically I just wait for the stuff to get through my system and do its job. It will ablate or kill any remaining thyroid cancer cells and eventually dissipate from my body. For the first week I will have to remain a safe distance from people and stay away from children, including my own (sadly). Also cannot eat out at restaurants or go to the movies, for the safety of others and to make sure I get nice and bored. I have the laptop with me and am so far successfully typing this with latex gloves on so I don't leave any radioactive residue that might come out of my pores on the keyboard.

I will be able to chat on yahoo messenger, if you have it. Look for me to be online. I appreciate email, you will probably get an auto reply at first but I will do my best to keep up with all of you.

Words of Encouragement

2004-11-15T07:15:00.000-08:00

I am grateful for the reminder in these words of wisdom that my sister Sarah emailed to me this morning...

"I've learned that no matter what happens, or how bad it seems today, life does go on, and it will be better tomorrow. I've learned that you can tell a lot about a person by the way he/she handles these three things: a rainy day, lost luggage, and tangled Christmas tree lights. I've learned that regardless of your relationship with your parents, you'll miss them when they're gone from your life. I've learned that making a "living" is not the same thing as making a "life." I've learned that life sometimes gives you a second chance. I've learned that you shouldn't go through life with a catcher's mitt on both hands; you need to be able to throw something back. I've learned that whenever I decide something with an open heart, I usually make the right decision. I've learned that even when I have pains, I don't have to be one. I've learned that every day you should reach out and touch someone. People love a warm hug, or just a friendly pat on the back. I've learned that I still have a lot to learn. I've learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel."

-- Maya Angelou

Everyone keeps asking where I am? I wish I knew...

2004-10-27T09:19:00.000-07:00

Sorry I have been incommunicado...as Jimmy Buffett says....if your phone doesn't ring, it's me! LOL. I have basically felt like crap, the doctor had me stop taking all of my meds in preparation for the I-131 treatment and now I am on a special low-iodine diet too. I am on the emotional roller coaster from hell and I ache everywhere. oh yeah and my hair is falling out, like 50 or 60 strands every time I wash it and then everytime I brush it. Maybe I should just let it get dirty and greasy and it will just stay in place? hahaha. I guess that's why I haven't been emailing anyone. There is nothing good to say other than this nightmare is almost over. At least the hard part... for now.

Leila is my reason for waking up every day and she makes me smile when I don't feel like it. She is just fabulous and healthy - thank God! She is still cooing a lot and I swear somedays she is on the verge of saying something, but I know its way too soon. She is 24" long now and probably around 12lbs.

CANCER IS SO LIMITED........

2004-09-19T09:51:00.000-07:00

A little something about cancer sent to me from my mother and father-in-law (thanks!):

CANCER IS SO LIMITED........

It cannot cripple love,
It cannot shatter hope,
It cannot corrode faith,
It cannot eat away peace,
It cannot destroy confidence,
It cannot kill friendship,
It cannot shut out memories,
It cannot silence courage,
It cannot invade the soul,
It cannot reduce eternal life,
It cannot quench the spirit,

It cannot lessen the power of the resurrection.

Baby Leila Arrives

2004-08-13T20:49:00.000-07:00

Announcing the arrival of our lovely Little Miss:

LEILA

August 9th

7:44AM

7lbs 13oz.

21 1/2" long
Baby's birthday went off without a hitch. My whole family was here, so we were totally surrounded with love and prayers. The c-section went well - and it was so fast - about 30 minutes total (thank God). After delivery, Leila's breathing was a bit labored at first because of the type of delivery, c-section babies have a tendency to swallow amniotic fluid and have to work harder to clear their lungs. This just meant a short time in the nursery where she could be monitored. She recovered very quickly after lots of long loud cries (she wanted to be with her mommy!). She was brought to my recovery room where our visitors were able to come in two at a time. We all got to watch the nurse giver her the first bath after which she was handed to me for loving hugs and breastfeeding. The staff of Enloe Hospital did a fabulous job - the nurses are top-notch and really went the extra mile to make us comfortable.

Going for a second opinion

2004-07-26T16:33:00.000-07:00

My OB/Gyn referred me to two new doctors (an Internal Med Specialist & an Oncologist), one I saw last week wants me to NOT WAIT to have the radioactive iodine treatment,, he wants me to have it as soon as I can after the baby's birth (probably one month after) and I am a little scared about it.

I am waiting for the other doc's office to call - my OB wanted me to get more opinions on treatment because he ALSO personally thinks its better not to wait a couple of months! This just makes things more difficult, going through RAI with a one month old baby and having to be away from her for a week after treatment. So it looks like sooner rather than later. I will get about 4-6 weeks off meds to get my TSH levels high enough to uptake the radioactive iodine, breastfeed my baby as much as possible in that time and recover from c-section. oh boy, how is that for a menu?

What is RAI or I-131?

2004-05-02T21:41:00.000-07:00

Here is some info on the RAI therapy to better clear it up for you: 'RAI' is short for Radioactive Iodine or I-131. "Thyroid cells are unique in that they have the cellular mechanism to absorb iodine. The iodine is used by thyroid cells to make thyroid hormone. No other cell in the body can absorb or concentrate iodine. Physicians can take advantage of this fact and give radioactive iodine to patients with thyroid cancer. There are several types of radioactive iodine, with one type being toxic to cells. Papillary cancer cells absorb iodine and therefore they can be targeted for death by giving the toxic isotope (I-131). Once again, not everybody with papillary thyroid cancer needs this therapy, but those with larger tumors, spread to lymph nodes or other areas, tumors which appear aggressive microscopically, and older patients may benefit from this therapy."

I had a large tumor, over 1.5cm plus several other small tumors which HAVE metastasized to my lymph nodes, this means I might still have cancer. Removing the thyroid gland alone is not enough once it has spread from that area. Unfortunately all the doctors I have seen in the last 7 years never thought it necessary to pursue other testing or treatment and I didn't know any better since I didn't have symptoms to speak of.... if they had, my life today and my cancer experience would have been leagues different. That depresses me and makes me sick at my stomach everytime I think about it.

Anyhow they have to give me the RAI to make sure to kill the cancer cells that might still be in there.
I just read a disturbing article that came out April 27th regarding potential neural development difficulties for children born to women with Hashimoto's or thyroid issues.... it is from the American Thyroid Assoc, a legit organization. So the theory of waiting until after baby is born to remove these potential problems is going to be an old-fashioned theory someday real soon.... another reason I am glad I listened to my instincts. I can only pray that my baby won't be damaged in some way from my messed up body. Makes me sick.

I hope my docs know what they are doing too. I am reading constantly to educate myself on these issues so I will know that what they are doing is correct protocol and also so I will ask the right questions, ask for the right tests, etc. I have already requested one blood test I will get next week that my doc would not have suggested, I explained why and he agreed and ordered it up. I have already purchased two recently published books which are sold by subscription only to doctors and researchers. I am half way through the first one.

Pregnancy Complications and Thyroid

2004-04-30T21:16:00.000-07:00

By the way, there is a brand new publication out regarding "Pregnancy Complications and Deficits in Infant and Child Intellectual Development Are Focus of New ATA Statement and Discussion at Symposium on Thyroid Health in Pregnant Women" (click on the title of this post to read it).

Anyhow, that is about it for now. I am trying to stay focused on this baby. I pray for her safety through all of this chaos my body has gone through recently and during my entire pregnancy.

Why I don't trust any Doctor Anymore...

2004-04-30T16:26:00.000-07:00

As mentioned, I ended up with a respiratory infection of some kind while I was in the hospital after surgery. Nobody in there would treat me for it, they kept dismissing it as side effects of my surgery so I had to wait until after I was released to go to a clinic and get some antibiotics. WHAT A JOKE! In general I am feeling much better after 10 days of amoxicillin for the upper respiratory issue. That really made healing worse for me since I was constantly coughing (painful) and badly congested making it hard to breathe at times. I haven't had problems getting around or doing things around the house at all. I just get tired easily. Probably a combination of pregnancy, surgery recovery and thyroid meds!

My incision area is healing nicely, I have been putting vitamin E on it and it looks pretty good. Doc told me to buy Mederma for scarring, I prefer natural stuff and can't afford non-prescription medicine right now anyway. He gave me a sample, and I do mean it was one measly little sample...wooohooo.

I left a message for my radiation oncologist to ask if, based on path reports post surgery etc, would he want me to do the RAI earlier rather than waiting say 6 months or so? I am not really happy right now and trying to determine how to deal with this. In reply he had his assistant call and find out what kind of meds I am taking, and when I am having blood tests and then had her tell me that he just wants me to wait until after the baby is born before he will determine my treatment protocol. I tried diligently to explain to the assistant that I am 500 miles away from family and help, and does he really want me to make decisions post-partum with a newborn in hand....?? etc... she says, “yes just make an appt to see him after your baby is born”. I am feeling very aggravated by this. I told her I need to make plans well in advance to get someone up here to help me, if he wants me to have treatment 3 weeks after birth, that won't be enough time. She didn't seem very sympathetic. I feel like a sheet in the wind somedays. just blown back and forth.

I am now reading medical journals, publications and textbooks so I better understand all about thyroid cancer and treatments. I figure if I don't educate myself on this, how will I know if my doctors are doing what is best for me? I find it hard to just "trust" all of them now... knowing that this cancer has grown in me for years undiagnosed by several doctors who told me, "go home, you are fine". hahahaha. the path report post surgery also diagnosed me with chronic thyroiditis, Hashimoto's. How about that? none of those doctors noticed that either!

Surgical Pathology Report

2004-04-28T20:29:00.000-07:00

I saw the surgeon for follow-up the other day. Prior to my visit I had received, per my request to the hospital, my entire surgical record and all lab reports from the surgery weekend. Among that was the pathology report from the tissue they removed from my neck. I had papillary thyroid cancer tumors on both sides of the thyroid, not just the right where the large nodule was. In addition, the doctor sampled (removed) six enlarged lymph nodes which looked suspicious. The discouraging thing to read was that all six of the six nodes had metastasized cancer in them! What does this mean? Realistically it means the chance of the cancer coming back is higher than if it had been localized just to the thyroid gland. It also means there may be more of the cancer cells in my body. I knew this might be a possibility going into the whole deal, based on the size of the palpable tumor and the length of time it took to grow.

An interesting note was that the path report states I had "Patchy Mild Chronic Thyroiditis". My doc says this is also known as "Hashimoto's Thyroiditis" which is caused by a reaction of the immune system against the thyroid gland & may rarely be associated with other endocrine disorders caused by the immune system. It's likely I had this for many years, undiagnosed, and ultimately I ended up with cancer.Doctor says we are on the same plan so far: wait until the baby is born and then I will have the iodine uptake test to find if there are "markers" elsewhere in my remaining lymph nodes or body. They usually do a whole body scan. I will definitely need to have the I-131 radioactive iodine treatment to kill any cancerous cells that might be in my body. I will continue to take the Synthroid thyroid meds as suppression therapy for the rest of my life. Regular screening and blood tests will also be in my future forever!

NO MATTER WHAT ANYONE SAYS, I CONSIDER MYSELF A CANCER SURVIVOR!

Recovering from Thyroidectomy

2004-04-27T18:10:00.000-07:00

Well - you can see the photo as evidence of the surgery (click on the title of this post). It is healing quite well and only hurts a little now. The worst part is the congestion and cough I am still fighting after 12 days! I get tired easily, my heart races sometimes and that's about the worst of it. When I go out places the first thing people notice is my prego-belly and the next thing they do is look up to see the neck incision, it's funny to watch the looks on their faces as they try to figure out what happened to me?

Home from the Hospital

2004-04-19T21:09:00.000-07:00

I AM BACK HOME NOW!! Thanks to all of you for your prayers and thoughts, they really work. I (we) went through surgery fine on Friday, took about 2 hours and they monitored me afterward in labor & delivery for an hour or so to make sure baby is ok. She has continued to have a strong heartbeat through the whole ordeal. They let me stay for observation until Sunday, I came home Sunday afternoon - relieved to rest in my own bed and to finally have a nice warm bath. I have about a 3" incision at the base of my neck w/stitches & covered in tape. Now we wait for pathology reports to determine follow-up treatments. I have to keep this short for now, tired....

Surgery on April 16th

2004-04-05T18:05:00.000-07:00

My surgery is scheduled for FRIDAY APRIL 16th at 11:15AM (I will be 22 weeks pregnant). Thank you so much for the prayers and words of wisdom! I was feeling down, with my chin in the dirt there, for the first few days and I quickly snapped out of it. I had to say to myself - "ok girl, it's time to take charge and change what you can about this situation" (the way that I deal with it). So I did and it has made a world of difference. That and my faith in God, I am in good hands and whatever will be is what is intended for my life. I am ok with that. I feel very confident about this being the best decision for me and the baby. This way I can recover from surgery, get on thyroid meds, have the baby in a few months, recover from c-section and then have the RAI treatment.... one thing at a time. It is such a joy to be pregnant and carrying this baby, I totally love it. It is one thing I can focus on in even my worst moments and feel an abundance of love and joy. I am blessed!I will probably be in there for at least two days to recover. Since the surgery is on my neck/throat area I will be asked not to talk much (oh-my) & it is possible that I might have temporary paralysis of vocal cords which would certainly eliminate the possibility of talking! Please don't expect to hear from me personally but Rick will do his best to keep everyone updated.

Pregnancy & Cancer Research... continued

2004-04-04T09:42:00.000-07:00

Some have asked me why I am having surgery now. Yes, I could wait. However I have an instinctive feeling that it is best to take care of this right away. Just like I instinctively insisted on the biopsy which gave me the diagnosis, that was another case where I was told I could "wait". Now I am glad that I didn't! I found a helpful webpage called www.pregnantwithcancer.org which has been very helpful to me and comforted me in my decision. They have connected me with a thyroid cancer survivor who was diagnosed during her pregnancy.

Pregnancy & Cancer Research

2004-04-02T15:33:00.000-08:00

My research has led me to Dr. Elyce Cardonick of Cooper University Hospital in Camden, NJ. Since 1996 she has been involved in the study & care of pregnant women diagnosed with cancer. I think she will be very helpful to me in understanding what I am going through and what I can expect. I spoke with her and she reassured me that surgery – especially the type I will have which does not involve the abdominal area – is very safe during the second trimester. She has only encountered one other woman pregnant with thyroid cancer in her study, breast cancer by far is the most common diagnosis in her experience.

Off to see the Radiation Oncologist

2004-03-30T13:20:00.000-08:00

Visited with the Radiation Oncologist who agrees with the last two docs that I can have surgery now (if I choose to) and wait until after baby is born for follow up I-131 treatments (up to 6 months or more & it is as effective as being done right away). The surgeon will remove the entire thyroid and any other potential cancerous area and then a month or so after delivery I will receive "RAI" Radioactive Iodine (I-131), single dose, which ablates or destroys any remaining thyroid tissue in my body. I will have to take thyroid meds for the rest of my life and be checked regularly. The prognosis is very good. Although thyroid cancer is very rare, the type that I have is considered highly "curable" or treatable. I am 20 weeks pregnant.

Meeting with the Surgeon re: Total Thyroidectomy

2004-03-24T14:43:00.000-08:00

Met with the surgeon, Dr. Schneider, to find out what to do now. He says surgery can either be done now or wait depending on what the oncologist says regarding treatments after surgery. Very impressed with this doctor - he confidently and carefully answered three pages of questions I brought into the appointment! The procedure is called a Total Thyroidectomy. He has perfomed many of these and tells me the decision is mine to make (whether to have surgery now, while pregnant or to wait). It’s a horrifying position to be put in to have to make a decision when you are already in a state of shock at the turn of events. I asked him to schedule it since he has a full schedule and I have about a two week window at this point during which it is technically “safe” to have surgery while bring pregnant. I am going home to do some serious research into surgery during pregnancy and see what comes of that. I can always cancel or reschedule the surgery.

That scary phone call I wasn't expecting...

2004-03-22T13:33:00.000-08:00

My OB/Gyn called me at home this morning and asked that I would in to see him today. They found abnormal cells in my thyroid.

I have papillary carcinoma. Thyroid cancer.

okay, yeah... this is scary now. He says the 2nd trimester is the safest time during pregnancy for surgery & refers me to a surgeon.

I am 19 weeks pregnant.

Biopsy of the Thyroid

2004-03-17T13:14:00.000-08:00

Went to the Enloe hospital radiology department for a biopsy of the nodule on my thyroid to see what the heck is in there? (the term biopsy means to obtain a sample of the tissue and examine it under the microscope to see if the cells have taken on the characteristics of cancer cells). Thyroid cancer is no different in this situation from all other tissues of the body...the only way to see if something is cancerous is to biopsy it. However, thyroid tissues are easily accessible to needles, so rather than operating to remove a chunk of tissue with a knife, we can stick a very small needle into it and remove cells for microscopic examination. This method of biopsy is called a fine needle aspiration biopsy, or "FNA". I’ll Have to wait a few days for the lab report.

Getting the Second Opinion

2004-03-08T13:13:00.000-08:00

Went to the second opinion appointment. This doctor was so young looking, right out of med school, if I had to guess. An Internal Medicine Specialist, she was very thorough and attentive to my various questions. She basically indicated that this nodule might be “nothing to worry over” and suggested that I wait until after my baby is born to follow up with a biopsy. I explained to her that it was hard enough being pregnant and feeling neurotic all the time, and that it has been years of having this large thyroid that made me want to know NOW what is going on in there! So she agreed to refer me for the biopsy because I was insistent about it.

Follow up visit & Ultrasound result - 14 weeks pregnant

2004-02-21T09:31:00.000-08:00

I went for my second OB appt on Weds and the doc was very happy since I have had my "first" weight gain during the pregnancy = 5lbs. wooohooo! FINALLY, a man who is happy when women gain weight. hahaha. I was able to hear the baby's heartbeat again and it's very strong and fast... so far, so good.

So during this appt, he reviewed the radiologist's report regarding my thyroid ultrasound. Apparently I have a 2.8cm x 1.2 cm nodule on the right side. Normally they would consider it a no big deal - "ignore it" kind of thing - but the ultrasound showed is increased vascularity to the region and the radiologist recommended it be checked further. Of course my doc delivers babies, he doesn't know much about thyroid (admittedly) so I have been referred to ANOTHER doctor!

This doc is supposed to provide a "second opinion" as to whether or not to request a biopsy. I am going to assert myself in this appointment and press the issue.

First of all, every doctor I have seen for at least the last 10 years has noticed my enlarged thyroid and proceeded to run the necessary blood tests, which all came out in the normal numbers. However, none of them have mentioned a nodule before... so either it was not palpable or they didn't feel it was worth mentioning. I was an HMO victim once before, so I sure wouldn't put it past them to ignore it as a way to save money. That sounds so terrible... but... in light of my past experiences I can't help but feel that way at times!

Anyhow I am going to see if I can convince to go ahead and do a biopsy. It would give me tremendous peace of mind to know what it really is or isn't. This appointment isn't until March 8th which is 4 days after I have amniocentisis to check out the baby. anticipation....

I am feeling more pregnant everyday. I think this baby grew twice it's size in one week! All of a sudden pants don't fit and sheesh, nothing looks good on me anymore. Who knew that one day I would be admitting that maternity pants are SO COOL!! heheheh. I gave in and put on a pair, and oh what a relief to not have to unbutton anymore.

Okay I am going to wrap this letter up - I need to be horizontal for awhile. Time to go to bed.

Thyroid Ultrasound

2004-02-12T12:44:00.000-08:00

Went to North State Imaging at 10 this morning for ultrasound of my neck. They only did the one side where my "nodule" is ... what if there is something smaller on the other side that can't be seen? ughhhhh the things that go through your mind. The tech wouldn't tell me anything, of course (other than there IS a nodule, duh) and defers to the radiologist that will read the report and send it to my doctor. Go home, wait.

Preface

2004-02-02T09:09:00.000-08:00

I likely had a thyroid disorder for at least 7-10 years prior to my diagnosis. I was always aware of an enlarged thyroid or "goiter" in my neck and it was clearly visible to anyone. Every doctor I saw in this period of time - generally once a year for my annual OB/Gyn appt - was asked (by me) to please look at this area and I also requested the appropriate blood testing. To the doctor, this meant testing my TSH, T4 and T3 which always came out within the normal ranges.

Since these levels came out "normal" and I was not symptomatic of Hyperthyroid or Hypothyroid disorders, none of my doctors pursued any further testing nor did they refer me to an endocrinologist for further examination. In retrospect, I wish I had known to ask for a referral a specialist, because I had a sleeping dragon in my body, so to speak! But they told me I was "ok", to go home and not worry, so I did that.

Prior to moving to Chico my last regular annual exam was in July 2003. I asked the doc to check my thyroid, he noticed the goiter, ran the same tests and everything again was normal. End of story.

After finding out that I was pregnant in December 2003, my first OB appt was in January 2004, this was a new doctor for me - I asked him to check my thyroid. Upon palpation he noticed a nodule on the right hand side (in addition to the obvious goiter) and asked me if my last doctor had mentioned it to me? Uhhhh…no…..and what is a nodule? Doc referred me to the radiologist to have an ultrasound of the area on my neck where he felt the nodule. It took several weeks to get into the place and have this done.