Hypothyroid - Urged Tamoxifen or Evista to prev... - Thyroid UK

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Hypothyroid - Urged Tamoxifen or Evista to prevent breast cancer

vocalEK profile image
9 Replies

Hi all: I have been struggling to get my hypothyroid symptoms under control and making progress. I managed to lose 30 pounds over the past two years and hit a plateau. In December I managed to convince my Primary Care Provider (PCP) to prescribe Cytomel (U.S. name for T3) , and we were in the process of tweaking the dosage when my annual mammogram revealed numerous micro-calcifications.

Subsequently, I was diagnosed with a "pre-cancerous condition" -- Atypical Ductal Hyperplasia (ADH) via a core-needle biopsy. The next step was a surgical excision of the site. When I met with a Nurse Practitioner prior to the surgery, she advised me to make no more changes to my thyroid dosage, because the surgeon wanted my thyroid condition to be stable. She said that I would probably be urged to take Tamoxifen or Evista to prevent future breast cancer. The surgeon said the same thing during the pre-surgical appointment.

The post-surgery pathology report found no residual ADH, columnar cell changes, cysts, calcifications associated with columnar cell changes, benign ducts, and stated "negative for malignancy."

Nevertheless, apparently the world of cancer medicine considers ADH to be a big deal, indeed. When I used the breast cancer risk assessment tool at the National Institutes of Health Web site, my responses came up with a 5-year breast cancer risk score of 4.6, compared with average risk of 2.2 for women of my age (73). One of the questions is "Has the women ever had a breast biopsy with atypical hyperplasia?" When I reran the calculator answering "No" to that question, my 5-year risk dropped to 2.3.

I have also been on menopausal hormone therapy since I was in my late 40s. Of course they want me to stop that, too. Last time I tried that (around 2003), I only lasted 6 months before I showed up at my doctor's in tears asking to have my hormones back.

I now what hormone deprivations does to me, and after reading the side effects for Tamoxifen and Evista, I can see that I would be in for a very rough ride indeed.

I got to wondering what effect these drugs might have on my hypothyroidism. I found this article: ncbi.nlm.nih.gov/pmc/articl...

Have any of you tried either of these drugs? What effect did it have on your hypo blood results? Your health?

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9 Replies
Hillwoman profile image
Hillwoman

I've only read the abstract so far, but frankly it defies reason that an essential hormone should promote breast cancer. And bear in mind that it talks in terms of 'association' and 'epidemiological studies', which sound alarm bells in my mind. These kinds of evidence are not capable of producing a causal link.

The other thing that perhaps ought to be borne in mind - and I have to say I have not been in your precise situation - is that cancer is an industry, and I've noticed efforts to treat ductal carcinomas, that would once have been managed with a 'watchful waiting' protocol, with more radical treatment. Your results are clear post-biopsy. In your shoes, I might want to do just that - watch and wait. But that's just me. Whatever you decide to do, I wish you luck.

SilverAvocado profile image
SilverAvocado

VocalEK, I'm afraid I can't comment on your more specific questions. But looking at those risk figures, 2.2 and 4.6, I wondered are they really all that bad? Okay, they're saying your risk is higher than for a woman who has shown no evidence of any abnormal cells, but that's probably to be expected. But are these arbitrary numbers? Is it a percentage, so you've gone from 2.2% chance to 4.6%, which in real terms is quite small? Or is it a score out of something like 5 or 10, in which case the jump in real terms is probably larger.

I agree with Hillwoman that this is partly a persuasion exercise where they want you to get on the conveyer belt that makes things easier (and more profitable) for them. I think it's important to be healthily skeptical of each thing you're told.

Hillwoman profile image
Hillwoman in reply to SilverAvocado

I was also thinking about that enumerated increase in risk. Since it appears to be derived from epidemiological studies it will be a relative risk, not an absolute one.

vocalEK profile image
vocalEK in reply to Hillwoman

Yes, I am pretty sure it must be relative risk, rather than absolute. Absolute would be expressed as X cases out of 1,000 or 10,000. In the Women's Health Initiative, which frightened almost all doctors into discontinuing menopausal hormone therapy for their patients, even though the relative risk was doubled for breast cancer, the absolute risk turned out to be an extra 8 cases of breast cancer per 10,000. As one blogger put it, two times practically nothing is still practically nothing.

vocalEK profile image
vocalEK in reply to SilverAvocado

Here is a link to the calculator I used: bcrisktool.cancer.gov/calcu...

SilverAvocado profile image
SilverAvocado in reply to vocalEK

It gives a percentage change of getting cancer in the next 5 years. But I didn't see any references or justification for the number. It gave my risk as 0.6%, which was low mainly due to age, I'm 40. I tried it saying I'd had a breast biopsy for any reason and didn't know the results, and it doubled my risk. It sounds like it means you have a 4.6 chance out of 100 to get breast cancer in the next 5 years. But it still might mean something else, because it doesn't specify. For example it might mean that you're 4.6% more likely than some ideal person they aren't specifying!

I had a search round to see if 4.6 out of 10 is a high risk or not. I found an estimate that your chance of death in the next 5 years, just off age and gender, is 10.7%. Probably with this increased risk of breast cancer your chance could now be as high as 13.1%, adding on how much more likely to get breast cancer you are? Although I would guess some of the added risk of breast cancer is already included in the 10.7%, too.

I found this news article about an interesting tool that calculates 5 year mortality from all causes, but I can't get the actual tool to load on my phone. If you can access it it might give you risk factors for other illnesses to compare with this one.

google.com/amp/s/amp.thegua...

vocalEK profile image
vocalEK in reply to SilverAvocado

I can't get the site to load in my desktop browser. I did find this: "Ischaemic heart disease and stroke are the world's biggest killers, accounting for a combined 15.2 million deaths in 2016. These diseases have remained the leading causes of death globally in the last 15 years." Tamoxifen actually increases one's risk of stroke and heart attack. Probably due to its effect of blocking estrogen. The last (and final if I have anything to say about it) time I went off my menopausal hormone therapy, my sleep was disrupted and my cholesterol levels (all except the good kind) went way up.

vocalEK profile image
vocalEK in reply to SilverAvocado

Finally found my way to the calculator. I had to fudge the first answer because I am 73, and it says you can only use it if you are within the specified age range (tops out at 70). So I input 70. Anyhow, it says my UBBLE age is 69 and my five year risk of dying is 7.9%. So if my risk of breast cancer is 4.6, and that is just the risk of getting cancer, not of dying necessarily, that's lower than my risk of dying from all causes.

vocalEK profile image
vocalEK in reply to SilverAvocado

At least I'm not going to die because of a hip fracture. Just got back my DEXA scan results:

Bone Density:

-----------------------------------------------------------------

Region BMD T-score Z-score Classification

-----------------------------------------------------------------

AP Spine (L1, L3) 1.349 3.1 5.3 Normal

Femoral Neck (Left) 1.113 2.4 4.4 Normal

Total Hip (Left) 1.322 3.1 4.8 Normal

It couldn't even calculate a 10-year risk of bone fracture because all my T-scores were above -1.

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