Breast Cancer risk with Thyroid Cancer treatment

[Patricia]

In July 2005, I had a partial mastectomy, chemo and radiation which I just finished. I am still on Herceptin. I am also on Femara and Lupron. I was dx with papillary thryroid cancer in Aug 2005 and had a total thryroidectomy in Sept 2005. My endocrinologist and nuc med dr. want me to do the Radioactive Iodine treatment (RAI) now and I am very nervous because of a study that I found which indicates a possible significant risk of BC for patients treated with RAI. Has anyone else had this situation? I just gave a year of my life to BC treatment and now I am being recommended to take a treatment which shows a significant risk for breast cancer. How do I make this decision? Is the benefit of taking the RAI more than the risk of BC in my case? Any advice would be much appreciated. I am feeling kind of paralyzed on this decision and although I love my BC team they seem very BC focused and I do not trust my endocrinologist. I need someone who understands both and can help me wade through the risks and benefits.

thank you in advance for any guidance

Patricia

[janet/FL]

I am very intersted in this answer also as my thyroid is bad and I just put off having another biopsey for a couple of months. I will ask my endo about your question but don't see him until the end of September. I am ER/PR negative so wonder if this would make a difference?
Life sure throws us some hard curve balls.
Janet

[chrisy]

Dear Patricia,
I'm sorry I can't be of more help here, but I'm not familiar with this topic.

Sounds like you are caught between 2 sets of "experts", each of which only knows half of the answer. No wonder you feel paralyzed. Perhaps you can get them to talk, after first sharing with them what you have found in your research.

You say you love your BC team but they are very BC focused. That is a GOOD thing as you are concerned about getting a treatment that may increase your risk of BC. You also said you don't trust your endocrinologist. Is it that you don't trust his expertise in his own field, or that you don't feel he is as qualified to deal with the increased risk of BC? If you don't trust him at all, you might consider finding another in whom you have more confidence.

I'd suggest loading up with as much information as you can, then present it to both sets of doctors and see if you can get them working as a team to get you the best treatment.

Good luck - I know you'll make the best decision for you.
Chris

[pas9ss]

Patricia,

I was diagnosed with papillary thyroid cancer in 1999 at the age of 35. I had a thyroidectomy followed by 2 radioactive iodine ablasions. I received almost the maximum dose of radioactive iodine between these two ablasions. I had these two treatments (a year a part) because my full body scans showed a lot of activity throughout my body but mainly in my neck/chest area. The ablasions were no fun - quarantined - away from my family and little babies - ugh.

At this time I was in PA and had a super nuclear med doc. She in fact highlighted the study about the possible link to breast cancer from radioactive iodine. We made the decisions together.

I remembered that study and held it close to my heart. Thank God I did! Thank God she told me about it! We moved to MA and I was in the process of finding new doctors and I wanted a mamogram. I was 38 years old and everyone told me I should wait at least 2 more years. I fought a good fight and won. I got my mamogram - there were 2 small tumors - right at my chest bone. Several other doctors tried to tell me not to be concerned because they "didn't look like cancer" and that "radioactive iodine doesn't cause cancer" and "you are too young" and several other nasty putoff lines.

My story goes on and on with bad doctors and bad surgeries but the point is I had breast cancer, stage 2B, in 4 lympnodes, er+, Pr+, and HER2+++. I now have a great doctor at Dana Farber. It was aggressive and I was treated aggressively. I am now a 2 year survivor and am thankful I knew about the possible link between radioactive iodine and breast cancer. Pushing for a mamogram saved my life.

However, you should know that not a single doctor I have will relate the cause of my breast cancer to my thyroid treatment - not enough data and studies to back it up.

Having said all that, it really is a tough spot you are in. I personally think there is a lot to be said for how much radioactive iodine you receive. You also have to consider that thyroid cancer is slow growing, papillary in particular is considerably better than other types, and so many people die of old age only to find at autopsy that they had thyroid cancer.

I am not sure I have helped at all because it such a personal and difficult decision to make. If you would like to ask me more questions - please email me! I am happy to share my experiences with you.

Good luck,
Pat

[janet/FL]

I have just had my third thyroid biopsey in 6 years. I don't know the results, but the thyroid has grown and the tech doing the ultra sound said there are definite "calcifications".

I am wondering if I shouldn't have my thyroid removed to keep cancer from forming, if it hasn't already. This would be my third cancer--endometrial, breast and now---I don't really want another! And I don't want the radio active iodine treatment. It does not appear good for the body. Also, I heard that if you had thyroid cancer, to keep the cancer from coming back, they lower the amount of some of the thyroid hormones normally given. TSH, I believe. That is probably not good either.

I have never been on thyroid meds as my hormone levels are normal even though I have 3 goiters.

Does anyone have any thoughts on this? Would Lugol's Iodine be of possible help?

I want to be prepard for my next talk with my endocrinologist.

[Margerie]

I am getting a thyroidectomy in 2 days. I also have a goiter, multi-nodular, some calcifications, one solid lesion biopsied- results ambiguous. Thyroid is an ambiguous organ! They can't tell me for sure if my nodule is benign or not- stats vary widely (3%-65% malignant for this kind of tumor- it is Hurthle cells, not common) and nothing definitive unless they take out the whole thing.

I have also looked into the thyroid/breast cancer link. What comes first the chicken or the egg? Does treatment for one cause the other? Is there a causative effect- bc causes tc or vice versa? What I do know is nobody really knows. The incidence of tc is doubled for women with bc. I don't think there has been sufficient evidence to exclude anything.

Patricia- what is their rationale for RAI? I thought it was only when there was evidence the tc had spread beyond the gland. ANd like I told my ENT, the possible tc probably won't kill me, but the bc sure could.

[janet/FL]

Margerie
Wishing you the best for your surgery. I did read about keeping the TSH low after a thyroid is removed as it keeps the cancer from spreading. Did you read of this in your research?

[Ceesun]

I was diagnosed with thyroid cancer at the age of 30 when I presented with an enlarged lymph node in the neck. This was 22 years ago. As an infant, I had radiation to the thymus-there is a link to thyroid disease for those who had this done. Afterward I had the radiation ablation treatment already mentioned. No problems with the thyroid since then. However, in 2003 I developed breast cancer. I often wonder if the thyroid radioactive iodine led to the BC...or was it the radiation to the thymus... I do suspect it was radiation to the thymus. but will never know for sure. Good luck with the next phase of treatment. Ceesun

[Ceesun]

Patricia, where can that article be found?? Ceesun

[Margerie]

I read my PET/CT after chemo- my thymus was fried during rads. My bc and thyroid goiter probably developed at the same time- so I can't blame bc treatment/rads.

We should all do some homework and post articles revlevant to thyroid issues and breast cancer. I didn't know, and neither onc or ENT mentioned, anything about the level of thyroid hormone replacement and preventing recurrence (of thyroid or breast cancer BTW?)

[janet/FL]

Hello again
Just to clarify my above post, the information below is from www.thyroid.about.com

ANd is under the page

What to do when you don't have a thyroid
Thyroid cancer patients who have had the thyroid gland removed are in a unique situation in that they are given thyroid hormone replacement drugs at "suppressive" levels. This means that the objective is to give sufficient level of medication so as to test at a nearly undetectable TSH level close to 0. This is considered "hyperthyroid" by most lab standards, but suppression is necessary to prevent cancer recurrence in most patients. So, some thyroid cancer patients refer to themselves as "hyperthyroid," although again, the underlying condition of having no thyroid gland means that the condition is actually hypothyroidism, and so much of the advice about hypothyroidism still applies.

[Margerie]

Janet, your post seems in line with what my ENT told me about thyroid function. He explained it like this: your pituitary gland is the boss, your thyroid is the factory. Your thyroid produces thyroid hormone (TH). The pituitary assesses the levels of TH in your blood. If the level drops, then your pituitary secretes thyroid stimulating hormone (TSH) until it gets feedback that the thyroid is producing enough TH. When you do not have a thyroid- you are taking thyroid hormone replacement. You want the right level- and your docs will blood test for TSH. If you have high TSH, you need to increase your thyroid replacement medication.

It makes sense that if you had thryroid cancer, you do not want TSH running around stimulating those cells. I hope to not be diagnosed with thyroid cancer- and wonder if the same gameplan would apply if your thyroid tissue is benign.

[Patricia]

I am sorry, I have not been checking messages lately and missed this post. Below are the links to the articles that gave me concern regarding the link between RAI and BC.


http://seniorhealth.about.com/library/weekly/aa092400a.htm (http://seniorhealth.about.com/library/weekly/aa092400a.htm)<O:p</O:p

http://www.cancer.org/docroot/nws/content/nws_1_1x_thyroid_cancer_and_breast_cancer_linked_i n_women.asp<O:p</O:p

http://www.cancerpage.com/news/article.asp?id=3097 (http://www.cancerpage.com/news/article.asp?id=3097)

As for my situation, my Thyrogen Scan showed less uptake than the previous scan that was done 6 mos prior. As a result, everyone felt that we could forego the RAI treatment this time around. I have my next scan in Feb 2007, so we will have to have this conversation all over again at that time. I do have to say that I was extremely relieved to not have the RAI. Although I had a long conversation with the head Nuc Med doctor at CPMC in San Francisco, who assurred me that he did not see a risk, I was still very anxious. He felt that there was consensus that the studies listed above were inconclusive, not managed well and never had follow-up studies to corroborate their findings. I still did not relax because I have heard enough stories (like Pat's below) that I really just felt like they have not yet found the evidence to prove the thruth.

Janet and Margerie, I wish you the best of luck with your own personal situations, you have to make the decisions that sit best with you and unfortunately with a cancer like Thyroid which is much rarer than BC we dont always have 'facts' to help us.

Pat, I am so happy that you pushed for a mammo when you felt you needed one. You are a great reminder that we all need to be our own medical advocates and I am so happy that you are here to tell us your story.

Best Regards,
Patricia

[Margerie]

Well it was another lucky day for me- just got the word my thyroid had 2 spots of incidental papillary carcinoma. I didn't know that incidental and carcinoma ever went together as a diagnosis. Since my nodules were small (0.5mm and 4mm) they are not recommendeing RAI. I did ask my onc if RAI is contraindicated in a patient with a breast cancer history. Not officially was the basic answer.

Anyway, I wanted to tell all you bc ladies, the suspicious area of my thyroid turned out to be benign- this was a new area. I also know of another bc gal that had a supposedly benign goiter removed- to find papillary carcinoma upon resection. Luckily thyroid cancer is a gentler beast- but I have read the stats and we bc gals are twice as likely as a regular gal to develop it.

So lucky me- no further treatment. And like I always say:

Are we there yet?

[TSund]

Another old thread I am bringing "to the top" because I see some interesting posts here re: thyroid. If any of you that posted here are still on this thread, could you pop over to the Iodine and bc thread and share any thought there?

In particular, have any of you since you posted here gotten a hold of the book referenced in the other thread about Iodine deficiency? (Dr. Brownstein) It addresses some of these thryroid issues and strongly suggests that iodine deficiency is causative of thyroid problems and that it continues to be a problem after thyroid hormones are given unless iodine is supplemented. Also addresses the bc issues associated with treatment and suggests that iodine supplementation can help that also. Any opinions?

[tdonnelly]

Hi,
In 1992 I had a partial thyroidectomy 3 nodules @ Hurtle Cells. I had 3 RAI over the course of 6 years. I was dx with invasive ductal carcinoma - HER2+ 10/2006 (My surgeon said by the size of the tumor I had bc for about 5 years) I believe there to be a correlation; my Internist was not sure. The chemo has effected my TSH levels and my thyroid medication level has had to be changed several times. I pray that all the bc treatments do not cause cancer again to the remaining thyroid. The fatigue is difficult and I have gained a significant amount of weight. I have not found research regarding Herceptin and Thyroid disease. Any information would be appreciated.
Tamara

[TSund]

Tamara, I don't know about Herceptin and thyroid, but I have read that the iodine factor could be very involved in the thyroid AND the bc picture. I would get a test of your levels, preferably by someone who has studied up on this connection, but if not possible, it would be interesting to do the skin test I've read about on the web.

Refer to the other "Iodine and bc" thread for others who have had thyroid problems as well as the iodine literature.

TRS