Tamoxifen as a preventative measure?

rodalb

Hello,

I had surgery 9 days ago to remove all the ducts in my right breast due to a discharge. The surgery went well, the scar is minimal and I had no pain at all. I don't have sensation yet, but I think that will come back.

Now I'm dealing with the results. Everything was benign (whew) but they did find several conditions which put me at high risk (30%). They found an intraductal papilloma, typical hyperplasia, fibrocystic changes, apocrine metaplasia, a fibroadenomatous lesion and focal microcalcification. I'm glad they took all the ducts out because there was a wider area to test.

I have to go for an MRI in June and then yearly, along with mamos and sonos. I was just settling into that news, then today I had a follow-up with my hemotologist (I have a blood disease) who is also and oncologist, and he wants me to start taking Tamoxifen as a preventative measure! I really don't want to take it. I'm not in menopause yet and don't want to increase my risk of uterine cancer or start losing bone.

Anyone using Tamoxifen as a preventative measure?

It's been hard adjusting to it all, when just a few months ago I didn't have to worry about any of this. I guess I should count my blessings though.

Anonymous

great news on the benign results!  None of the conditions you mentioned put you at high risk. They all only increase your risk slightly. Are you sure they said "typical" hyperplasia or was it "atypical"? The atypical (ADH) is what would increase your risk to  20-25%. (and a recommendation for the tamoxifen)

Tamoxifen does not cause you to lose bone, it actually is very good for your bones. It does not put you into menopause (although some of the SEs are similar to menopausal symptoms) and the risk of uterine cancer is very low, <1%.  I took it preventatively for 5 years and tolerated it well, I would just recommend a yearly transvaginal US to monitor both the uterine lining and the ovaries.

anne

farmerlucy

My risk was 50% and they recommended tamoxifen for me as well. My other alternative was a preventative Mx. I chose that. Tamoxifen does have some risk, but generally it is a safe drug.

leaf

I have classic LCIS, ALH, and a weak family history. (Paternal grandmother, 2 maternal aunts (all post-menopausal), 2 maternal cousins, one pre- and one post-menopausal.)  I have gotten estimates of my lifetime chance of bc as anywhere between 10 and 40%.  I think in the long run, they really, really don't know how to estimate one's future risk of bc. nci.oxfordjournals.org/content/98/23/1673.full.pdf

Since my breast surgeon refused to do PBMs on me (Her first words to me were 'If you want PBMs, I will fall over in a chair')and I had no other breast surgeons that took my insurance, I chose tamoxifen and took it for 5 years.  I had benign endometrial polyps every 1.5 years, but I also had endometrial polyps (all benign) before starting tamoxifen.  It caused some warm flashes at first and these calmed down.    I had 2 more breast biopsies a year after my breast excision for LCIS, but they showed nothing worse than what I had already.  Since then, I have only had annual mammograms and twice-a-year clinical breast exams.   No breast issues since 2007 when I had my 2 benign breast biopsies.

Everyone is different and screening is controversial (at least for LCIS).  Many (not all) people estimate that LCIS confers about twice the lifetime risk as ADH, it is certainly possible  (not certain) that after a period of time your screening intensity will decrease.  LCIS is a different animal than DCIS.

No matter what you choose, you will have friends here that support your choice.

MelissaDallas

Average "normal" risk is about 12.5%, so you have to look at the risks and weigh them against how much of a risk reduction you would get for that additional 17.5%. I don't know the Tamox reduction is, but it isn't 100%.

leaf

They know the statistics for GROUPS of breast cancer patients, as melissadallas and kayb quoted, but for the INDIVIDUAL PATIENT, that's a totally different story. nci.oxfordjournals.org/content/98/23/1673.full.pdf  estimates the accuracy of the Gail model (the most commonly used model) for an INDIVIDUAL patient as 'better than a coin toss, but not by much'.  (This may not apply if you have a deleterious BRCA mutation or radiation treatment for lymphoma.)  Even when they added factors such as breast density to the Gail model, they found the accuracty was around 60% accuracy (vs 50%-50% for a coin toss). 

The modified Gail model is for GROUPS of fairly normal people - you can imagine the situation for the much smaller population of people with a somewhat higher risk such as people with ADH or ALH - the accuracy must be much closer to 50-50 than 60-40. (In other words, the maximum times they can predict an 'average' individual will or will not get breast cancer correctly is <60% versus 50% of the time for a random coin toss.)

The point being is that though it would be very helpful to make your decision based on 'numbers' - e.g. 'What is my risk for getting breast cancer?', we really do not know that number for YOU.  We know the risk well for groups of fairly normal women (probably including women with ADH and ALH), but not individual women in those groups.

Here's more info about a large study comparing tamoxifen and raloxifene for breast cancer prevention.  As others have said, its about a 50% reduction in risk. This information of course is for groups of women, not individual women. http://www.nsabp.pitt.edu/STAR/Index.asp

bdavis

rodalb....

When I was 35, I had a B9 lump removed and they found I had ADH (atypical Ductal Hyperplasia). This raised my risk of getting cancer 4-5x (that was what I was told). At that time, no one recommended anything except yearly mammograms and seeing a breast surgeon yearly. For me, clearly this was not enough, and 13 years later in that same breast I was diagnosed in IDC with a micromet to the lymph node. I have since had a lumpectomy, chemotherapy, mastectomy and reconstruction and am now on tamoxifen. When I was diagnosed my oncologist said I could have been on Tamoxifen when I was diagnosed with ADH and it would have reduced my risk by 45%. Believe me when I say I wish I had been told that and possibly (probably) could have dodge the cancer bullet. Tamoxifen has been FINE. At first, I had some hot flashes and achey joints, but I am now 1.5 years in and have no noticeable side effects.

Also, before I had my lumpectomy, I had an MRI that showed other things they wanted to investigate and my MRI guided biopsy said I had a pappilomma. The pathologist said it should come out and a second opinion BS said the same. Pappillomas are B9 but can lead to cancer, just like ADH. This was one reason I had a MX... I felt like my breasts were ticking time bombs.

rodalb

Thanks for the advice everyone. I guess I'll meet with my hematologist and get all the facts about Tamoxifen. I'm 48 and don't want to hasten menopause, but I also don't want to get cancer!

I'm also worried because I have endometriosis and don't know if that will make me more prone to developing endometrial cancer on Tamoxifen. Lastly, I had two serious bouts of clinical depression when I was in my 20s and certainly don't want to go there again! Anyone experience depression on Tamoxifen?

As for my diagnosis, the hyperplasia was "without atypia" but I guess that can eventually turn to atypia. My surgeon said that just having nipple discharge made me 20% higher risk and now with these diagnoses I'm at 30% -- but I know its not an exact science. The fact that I now qualify for insurance coverage for an MRI though is a little scary! I might wait to see if anything odd comes up in my MRI in June and then make the decision about Tamoxifen.

I'm also not thrilled about having to get annual MRI with IV contrast -- mainly because I have very small veins and they always have trouble putting IVs in. A silly reason, I know, but it really causes me a lot of anxiety and dread. I guess I'll get used to it eventually. Again, better than dealing with cancer! 

Carla

farmerlucy

I fell into depression after my dx. I blamed much of it on tamoxifen. Now i realize it was not to blame for most of it,  I was falling into PTSD. Also, I made the mistake of starting an antidepresssant at the same time (celexa), and that really threw me for a loop. It took me a year to try tamox again, and this time it is fine. I'm on effexor also, so the only side effects I really notice are night sweats. I like to imagine that tamox is actually HRT for me. I think it actually does increase your estrogen although it blocks it from any cancer.

I think I feel better on it. My cycles have been crazy and I hope they stop now.