To take Tamoxifen or not?? Please help!

itcamewefoughtiwon · February 2013

Ahhhh Tamoxifen! That dirty devil! I wish my oncologist would just say "take it!" But that's not the case. I've been treated for a triple negative cancer, which is common for BRCA1 holders such as myself. Although they treated me that way, my pr level was 4%. So when my onc approached me with the conversation about Tamoxifen it was based on her "having" to have the conversation with me. She also told me that I could quit whenever I wanted and that she would never "twist my arm" to have me keep taking it which she would with other patients. I have been told there is little to no benefit for me! Then I started thinking about reoccurance and thought, if it helps with that I SHOULD take it! So I brought that question back to my onc doc and her response was, "Your chances of mestasis are low since you had to lymph node involvement and since you went with a bilateral" Also restated that "the beneifit to you taking it is little to none."

So, again, changed my mind.

The problem I am having is a piece of mind issue. It's very hard to move on from a treatment. I knew that when I was having chemo that amy cancer cell was being destroyed. Now I sit here with 0 treatments going on and constantly wonder "what if?"

Also I've read a lot about tamoxifen's side effects and one of the most concerning is the chance of uterus cancer. Chances are low, but then again, BRCA 1 carriers are not your average "statistic" patients. So then I thought, If I do take it, then I want my uterus out, but insurance won't cover it. But, my doc who is removing my tubes and ovaries could try to code it so that insurance does cover it. Then again you have more problems when you remove your uterus. So here I am stuck!!

I also worry about quality of life. What if I take T, and have some of these side effects. My life and my children's life has been on hold long enough!! I want to move on from this cancer, but it's hard to. Triple negative cancer has a high reoccurance rate for the next 2 years for me. Also a lot of the side effects from T (hot flashes, female issues) I will be going through anyway when I get my ovaries and tubes removed. Also I just read last night that there is a different medicine (same thing as T) but can only be taken post menopause. So now I want to look into that.

Moderators · February 2013

Hi Itcamewefoughtiwon,

This other drug you mention sounds like Evista. Click the link to read more about it on the main Breastcancer.org site.

Hope this helps!

--The Mods

SelenaWolf · February 2013

I have been taking tamoxifen for just over a year now and I've not experienced any major side effects. There were a few minor ones in the beginning as my body adjusted (i.e., vaginal discharge), but nothing of note. I've even lost weight on tamoxifen!

You're right that the risk of uterine cancer while taking tamoxifen is very low - less than 1 woman in 1,000 - however, you raise an interesting point about this risk when taken into consideration with the BRCA+ gene. You'd have to talk to your oncolgoist about this.

If you're pre-menopausal, tamoxifen is, usually, the hormone therapy of choice, but if you are post-menopausal, an aromatase inhibitor - such as Arimidex or Femara - can be used. An AI won't work for you if you are pre-menopausal. Both drugs have side effects, some serious.

If you can't have a hysterectomy, there is a drug out there called "Lupron", which - I believe - shuts down your ovaries. Some of the ladies on the board have used it and can tell you more about it and their experience with it.

mawhinney · February 2013

Oftentimes you have to weigh the risks of a certain treatment against the rewards. Will the treatment yield enough benefit to outweigh the risks? Having to make such a decision is often very frustrating. At first I was told that I would not need chemo. Then the results of the OncoDx test indicated I should have chemo. After much investigation, it appeared that in my particular case I would only receive a 3% better odds by taking the chemo. My husband is an engineer and spent time charting and graphing my risks and rewards. After much soul searching I decided the small benefit of chemo did not outweigh the side effects so I did not do the chemo. My oncologist said he was comfortable with that decision. I am almost 5 years out from surgery. However, every time I have an ache or pain or cyst or lump or bump, I wonder if I made the right decision.

To ease your decision, you might gather all your information and seek a 2nd opinion or 3rd opinion. Take care!

edwards750 · February 2013

This is such a tough decision. For me I was/am afraid NOT to take Tamoxifen or Arimidex or whatever drug your ONC prescribes. Conversely, a friend who is a nurse at St. Jude was dx with early stage bc 5 years ago. She wanted to have a double mx because she didnt want to worry about recurrence. Her other breast was okay but had shown cysts and she thought it was only a matter of time. The BS and ONC both advised against the MX but she persisted and after all it was her breasts and her life. Being a nurse at St. Jude she sees a lot of cases where the cancer comes back. So she had it done and was given Arimidex. She had horrific SEs so they switched her to Tamoxifen. She developed blood clots. This happens, according to the drs, like very rarely. Still happened to her so she said no more. She told them she wants a quality of life and not one plagued with all this misery from the drugs. She hasnt taken anything to date and 5 years out she is cancer free. Its a roll of the dice and everyone's case is different but you def have to be able to tolerate the drug. I didnt have issues with Arimidex except that it attacks the bones and I have osterporsis so my ONC switched the drug to Tamoxifen. Except for hot flashes I really havent had any problem with it. Realize the drs are going to push you to take the drug but at the end of the day the decision is yours. diane

SarahsMom · February 2013

Wow, you've been through the wringer, bless your heart. Here are my thoughts - I am in the mode of removing all unnecesary body parts that could kill me (were assets, now liabilities) - I say have a total hyster if you can. At the age of 44, out of nowhere, I developed two huge uterian cysts that started bleeding uncontrollably, and I mean the heaviest clots, etc you can ever imagine. There would literally be a "rush" and I would soak through every thing. This happened while shopping and it scared my daughter. I was taking provera for 20 straight days, then bleeding out for 10, it was horrible. So goodbye to uterus and cervix and two kinds of cancer are off of my mind, as well as abnormal paps and all of the associated psychological "fun." I kept my ovaries because I didn't want to start estrogen due to breast issues, but again, rolled the dice - my grandmother died from ovarian C. All of this is a crap shoot...

As for tamoxifen, I think peace of mind is a form of medication for breast disease. If they clear you for clots, etc then I say take it, muddle through the side effects, and know that you are continuing to fight and engaging. Otherwise, you may get into that psychological cycle of "I should have", "why didn't I", etc - us ladies can beat ourselves up pretty good.

Sending you a hug!

To take Tamoxifen or not?? Please help!

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