Your concerns are understandable! My advice is to not decline Tamoxifen JUST because of how the side effects might be. Whatever you have heard may or may not apply to you, all of us are different. Some are so severely impacted with side effects that they cannot tolerate it, and others hardly notice a thing. Ask the onc his/her opinion on how much benefit you may get from it....will it reduce your chances of recurrance by 5%? by 8%? By 2%? How + were your hormone receptors? Ask the onc if you were his daughter, would he feel very strongly in favor of taking it? Then decide how important it would be if you fell into one of those percentages.
You are on the fence regarding a pregnancy...what if you went on Tamoxifen for 2 years and then got PG....how much benefit would you get from a shorter duration? And if you skipped Tamox and then got a recurrance, would you blame yourself? If you want to get PG now, that is a different story and is a very personal decision....if it were me, I would find out the potential for risk of recurrance and the benefit that Tamox would offer.
I am 36 and just finished my 5 years on Tamoxifen, I was one of the lucky ones with minimal side effects. I did have weight gain, slowly over the 5 years. But it is a small price to pay if it helped my chances of survival. I had no other noticable symptoms. Good chance that you will have minimal side effects too.
I am more concerned about the uterine cancer, blood clot thing than anything. According to the onc (whom I like very much) he said that lobular carcinoma in situ is usually estrogen +. He says that currently I am at a 2 out of 1000 chance of getting uterine cancer, with Tamoxifen it goes up to 3/1000. I have a 15-30% chance of having breast cancer without Tamoxifen. With it, I don't know but the odds are better of course. I asked him to take off his MD hat and put on his father hat, and he told me he would recommend it. I also asked him if I were his daughter and I wanted to have a baby if he would advocate me not going on it until after I had a baby. He said that would be ok, although there seems to be some talk about the risks of being pregnant when your estrogen levels go up in relation to BC. He says there really aren't enough studies to say either way. If I go on it and go off in a few years, I would have to wait a while until it gets completely out of my system before I conceive. Let's face facts, most likely it will take me a while to conceive at this point in my life although I could get lucky. As I get older the chance of me having BC go up just like any other woman but more since I've had a pre-cancer scare.
Did you have BC or pre-cancer? I'm also reading about how Tamox is more beneficial for those you have had BC. Not too many articles on pre-cancer benefits. I understand that I am lucky right now and I sure don't want to tempt fate. I have so many emotions going on right now. My DH and I had the long baby talk last night and he said that if he could have the baby for me, he would. I guess the other choice is adoption, but it's not my first choice.
If I actually had BC down the road and I opted out of taking Tamoxifen, I would probably be devastated knowing I could have taken steps to prevent it. I'm sure other ladies reading this thread think I'm nuts. Last night on the phone my mom told me that she wants me around more than a grandchild. When she said that I almost lost it. My parents have been waiting a long time for us to have children.
Hello Susan! Big ((((((((((((hugs)))))))))))))) from Mo. Don't worry about "tearing up and not being able to get a grib on yourself". You need to feel just that way. Don't hold the tears back. You'll feel much better once you let yourself cry. I couldn't take the tamox but I know many women that have..all ages...and most have had very few problems w/ it. In fact, my grandmother took it when she was 83 plus rads, and had no problems. She lived to be 98! I know right now you are scared and confused and can't decide which option is best for you. The only advice I can give is to make sure that YOU are taken care of and get healthy. That is most important. Once you finish your treatment, then have that beautiful child. You won't have that nagging thought in the back of your mind..."what if...." Sweetie, we all know how you feel and what you are going through. This disease "sucks" and there is nothing fair about it. The one good thing is that new treatments are being made available each and every day because of the clinical trials that many of us have participated in. Take advantage of them and beat this disease. Then have a whole housefull of children and let us hear you say..."darn those kids. They are driving me nuts! "lol
Please keep posting and let us help you thru this phase.
Hugs and prayers....Deb
Post Edited (Bluize) : 7/18/2005 1:26:37 PM (GMT-6)