ADH and docs saying Tamox, Lupron and Mirena
I posted this on the hormone therapy topic and probably needed to post it here.
Hi, I had an excisional biopsy performed on June 18th. Thankfully my biopsy came back as a fibroadenoma but I was diagnosed with atypical ductal hyperplasia. Since this is my second fibroadenoma removed my surgeon has now recommened that I take Tamoxifen for 5 years. She says this can reduce my risk of getting breast cancer by 50%, which I am all for. However, I have another problem. I have endometriosis and had one of my ovaries removed due to a cyst and the endo in Sept. 2008. Since that time I have been taking continuous birth control pills to help with the endo. This has worked great, I felt like a new person. I didn't have periods anymore and the pain was all gone. Now, if I take the Tamox I can't take bc pill at the same time so my gyn dr. has suggested Lupron injections for 6 months as well as inserting an IUD to help with the hormone loss caused by the Lupron. I have been researching each one of these drugs online and have been driving myself crazy trying to decide what to do. I have read about people taking these drugs but have yet to find someone taking all three together. Does anyone have any advice??
Comments
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My advice is that you see an oncologist. There are obviously a lot of factors that need to be considered in your decision and an oncologist is in a better position than a surgeon or your gyn to look at the whole picture and make a recommendations on what you should do.
I am actually surprised that your surgeon is recommending Tamoxifen because you've had two fibroadenomas. I've had two fibroadenomas - those of us who get fibroadenomas often get more than one. Generally fibroadenomas are not thought to increase the risk of getting breast cancer, although complex fibroadenomas may increase risk slightly. Recommending Tamoxifen because of fibroadenomas is very unusual. From the American Cancer Society:
- Non-proliferative lesions: These conditions are not associated with overgrowth of breast tissue. They do not seem to affect breast cancer risk, or if they do, it is to a very small extent. They include: ....simple fibroadenoma...
- Proliferative lesions without atypia: These conditions show excessive growth of cells in the ducts or lobules of the breast tissue. They seem to raise a woman's risk of breast cancer slightly (1½ to 2 times normal). They include: .... complex fibroadenoma....
- Source: What are the risk factors for breast cancer?
ADH, on the other hand, does increase your breast cancer risk. As risk factors go, ADH is in the middle of the pack. If you have other breast cancer risk factors related to your personal or family health history, then ADH will probably bump you into the 'high risk' category. But on it's own, it's questionable as to whether ADH creates a high enough risk to warrant taking Tamoxifen (which, like any drug, comes with it's own risks, including the risk of endometrial cancer). Here is what the ACS says about ADH and about taking Tamoxifen for ADH:
- ...a recent study compared breast cancer risk between women with benign breast conditions and those without. The study found that about 5 of 100 women without any benign breast conditions developed breast cancer within the next 15 years. Among women with a benign condition that increases risk 1½ to 2 times, this would mean that about 7 to 10 out of 100 might be expected to develop breast cancer in the next 15 years. Among women with atypical hyperplasia (ductal or lobular), whose risk is 4 to 5 times normal, about 20 to 25 women out of 100 would be expected to develop breast cancer within 15 years. The risk for cancer then declines after 15 years. For women at increased breast cancer risk
- If you had atypical ductal hyperplasia (ADH) and are 35 or older: ADH by itself may not raise a woman's risk of getting breast cancer to the level where she might consider taking tamoxifen. But women who have had ADH and who also have other risk factors may have a risk that is high enough to consider taking tamoxifen. Talk to your doctor about all of your risk factors and how they affect your risk, so you can make an informed decision about whether or not to take tamoxifen. Breast cancer risk assessment: Should I consider taking tamoxifen?
So, clearly, this is a complex issue with a lot of considerations, particularly given that you have endometriosis. An oncologist seems to me to be your best bet to get answers to your questions and to better understand the options to address both your conditions.
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Beesie, thanks for replying. I am just so confused as to what to do. My breast surgeon is the one who did my surgery and diagnosed me with ADH. She says based on the ADH diagnosis my risk over my lifetime has increased to 30% and if I take the Tamox for 5 years I can decrease that risk by 50%. I have read a lot of different opinions about whether to take Tamox as a preventative and not. Some who have ADH haven't and feel confident about that decision and others say they have taken to make sure they get the best chance at not getting breast cancer. I would like to cut my risk but have the added complications of endometriosis. My breast surgeon has already set me up for 6 month follow up mammo and then an MRI after that point. When I told her of my gyn problems she said I needed to consult my gyn and that they would talk afterwards and formulate the best plan for me. I almost feel like I would let my family down if I didn't at least try the drugs. I don't think I mentioned I am 42 and have a 17 and 14 year old.
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As your surgeon said, with ADH, your lifetime risk probably is in the range of 30%. That's consistent with everything that I've read about ADH. If you take Tamoxifen for 5 years, you can reduce your risk, but only for about the next 10 -15 years. Five years of Tamoxifen has been proven to provide a benefit well beyond 5 years but it won't provide a benefit for the rest of your life; at some point, the benefit wears off. So if your lifetime risk (usually this is calculated to age 90) is 30%, then as per the ACS quote that I included in my previous post, your risk over the next 15 years is probably around 20%. Tamoxifen can cut this by up to 50% - 50% is at the high end of the what the studies have shown. The most comprehensive study on high risk patients who took Tamoxifen, the NSABP P-1 trial, showed a 44% breast cancer risk reduction for those who took Tamoxifen. You can find the results here (quite a bit down the page): http://www.drugs.com/pro/tamoxifen.html A 44% reduction of a 20% risk level means that you may be able to reduce your risk by approx. 9%. This would take your lifetime risk down from 30% to 21%. This is a significant reduction, but you have to weigh it against the risks that you expose yourself to by taking Tamoxifen. Each of us has our own benefit/risk equation and we all view this differently - some focus on the benefits, some focus on the risks, etc.. Only you can decide what's the right thing for you to do.
On the topic of Tamoxifen and Lupron, I found this: http://www.healthcentral.com/breast-cancer/c/78/17224/zoladex-therapy
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Thanks for that link. The reason my gyn dr. is recommending Lupron is to avoid a hysterectomy. I only have one ovary left and she said she would like to see me keep that as long as possible. The Lupron basically mimics menopause but unlike a hysterectomy it is reversible. Have you taken any of these drugs? If so, how were the side effects for you? I know everyone's body is different, but it seems like I only hear the really bad stories and not the ones where everything worked and it wasn't so bad.
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I was diagnoised with ALH after having several benign biopsies, my risk of getting bc was 40% (family history etc). I didn't feel comfortable taking Tamoxifen so I had prophylactic masectomies in May - drastic maybe, but no side effects, no more mammos or MRIs, no worry and risk drops to less than 5%. Just another idea - my surgeon totally supported me. Good luck to you -
Hugs, Valerie
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Valerie,
So you did have family history? I can't imagine being brave enough to make that decision. How long did you go through everything before coming to that? I only have one first cousin who died from breast cancer and no other family history.
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mvspaulding -
My mother got breast cancer at age 60 (still living), an aunt (older, deceased), cousin (49, died from breast cancer). When my mom was diagnoised I was 30 and her surgeon said I needed to get a mammogram every year from then on. I am 49 and have had mammograms now for 19 years, it seemed I was always called back for something suspicious, have had 4 lumps removed, two years had microcalcifications,(biopsy negative), this year the microcalcifications were clustering, excisional biopsy showed ALH (oncologist said that was precancerous) and wanted me to take Tamoxifen for 5 years. I have know some ladies on it - they hate it so May 6th I had PBM - my surgeon was supportive and I have been happy with the whole process. I have TEs which will be replaced with implants in a couple of months. Because of no cancer I had nipple/skin sparing surgery. Everything came back negative on the tests after surgery, there were several B9 lumps that didn't show up on the mammograms. Let me know if you have any other questions.
Valerie
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Thanks for sharing your story with me Valerie. I am kind of new to this, but what are TE's? I am also not sure how the reconstruction works. How many surgeries does it take with the PBM and reconstruction?
Melissa
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mvspaulding - So for my PBM the breast surgeon was there along with the plastic surgeon. The breast surgeon removes all the breast tissue, shaving it as close to the skin as possible. Then the plastic surgeon inserts TEs (tissue expanders) behind the muscle (he makes a pocket for them). Total surgery time about 4 1/2 hours. After surgery I went in about every 2 weeks to the plastic surgeon for fills - they inject saline into the TEs to slowly stretch the muscle and skin. When you get to the desired size a second surgery is performed to remove the TEs and then implants (silicone in my case) will be put in the pocket made by the TEs. I will probably have my exchange in September, but could have had it in August - so start to finish is about 3 months, or longer if you have fills slower etc. The PBM surgery really wasn't bad, and the exchange surgery is suppossed to be much easier to recover from.
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I think it would be good for you to get a second opinion - from an oncologist - and also to talk to your gynecologist. It's usually a medical oncologist who manages treatments with the anti-hormonals (Tamoxifen), rather than a surgeon. I was diagnosed with ILC, which required me to stop the BCP's immediately. The first oncologist I spoke with, pre-surgery, wanted to do Tamoxifen and Lupron after my surgery and radiation. The oncologist I see now does not think we need Lupron - I'm just taking Tamoxifen. Lupron for one ovary WITH Tamoxifen might be overkill for ADH... It's important to see these as treatment OPTIONS. Different doctors seem to have different ideas... you need to make sure you have a doctor whose opinions you believe in. With your history of gynecological issues, it would be GREAT to have a "team" approach.
Also - my gynecologist pointed out that Tamoxifen can have the unwanted side effect of increasing fertility, so birth control of some kind is required. He said that Tamoxifen's tendency to overstimulate the uterine lining made IUD's (like Mirena) a no-no as well. Condoms or permanent sterilization methods were my options...
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Thanks for your post. I am still pondering not taking any drugs and just keeping a close eye on everything. I sort of have a team approach going, because my breast doctor and gyn doctor are talking. If I didn't have the endometriosis too I would just take the Tamoxifen and not worry about the rest of it. But since I do have the endo the Lupron is supposed to control that. I don't even need birth control because my husband had a vasectomy. The only reason my gyn dr. added the Mirena in the mix is because she said that it would help with the complete loss of estrogen in my system, therefore trying to lessen the side effects. It all seems like a lot to me for a dx of ADH. Not to mention expensive too. I just don't know, so confused.
Missy
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Well, just to update I have decided not to change anything right now. I am not going to get the Lupron shots or take the Tamoxifen. I spoke with both of my doctors and they support this decision. Mainly because I have to have knee surgery in a month or so and the Tamox would put me at greater risk for developing clots after ortho surgery. I feel relieved that I made my mind up and just hoping I am doing the right thing. My breast doc says we can regroup after my mammo and MRI in Dec. and see where we are then. I am sure I will be a nervous wreck to have these tests again so soon. I have been reading a lot of posts about ADH that recommend having your slides re-read. I am wondering if that is necessary if an actual excisional biopsy was done and the suspicious tissue was removed?
I am glad for this site to be able to bounce things off all of these wonderful ladies.
Missy
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the only side effect that i'm getting from taking tamoxifin is the hot flashes, was taking at night before going to bed, but i kept waking up turning on my fan, and pushing offthe covers. now i'm taking it when i ge up in the morning-so far not so bad, but of course, i stay indoors (work outside in the heat-110 degrees)so when i go back to work on wednesda, we'll see how i am. only been on it for a year.
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This is an old thread but I'd like to bring it back. I Have adh on CNb only Excisional was benign no adh or cancer. I am also weighing my pros and cons on tomoxifen Definately a hard decision. Can anyone share some light on the subject.
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hello Tinkerbell49, I had the same thing happen, ADH on sterotatic biopsy but benign and no ADH or cancer on excisional. Did your doc tell you that you are still high risk for developing B C in the future?
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My mo did the Gail score and it was a 5 year risk of 1.5% and 12% lifetime. Which was not bad. But I met a genetics which did the tyrer cuzick model that put me at a 34% ten year. I'm waiting for paperwork not to sure.The tyere cuzick model has been known to over estimate women with atypical hyperplasia. So definitely a hard decision. Going for a second opinion.
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I do know 2 women on these threads that chose no tomox did good til 4 to five years than got dcis. I guess its a roll of the dice. Ughh
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but did their ADH show up on the excisional biopsy, what I am getting at is since my ADH only showed up on the sterotactic biopsy am I high risk, your thoughts.
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I asked the same question ,genetics and mo said it didn't make a difference once it shows up your risk is still higher. I had 2 micro focI which are very tiny and still high risk. Seriously considering pmx and no tomox. I Met with ps I really liked him.
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I'm also in the adh club here you might want to join that one has lots of knowledgable ladies there too.
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Linpiz - here's a link to the ADH Club that tinkerbell mentioned, in case you'd like to join!
Happy posting!
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