Stopped Tamxfen - Scared of All Hormone Therapy Now

SugarCane

(WARNING: this is very honest and negative because I am scared. I cannot talk about this to my family or friends because they do not understand. They want me alive in whatever shape. Please do not read if it might trigger you. I don't want to bring anyone down)

I tried Tamoxifen last year right after chemo in September and it made me so sick...horrible bone pain, just like chemo. So they took me off of it until radiation and surgeries were over. I started back in April after my reconstruction surgery in March. Within 3 days of taking it I had terrible mood swings and within weeks my depression and fatigue was so bad, I'm embarrassed to say I was borderline suicidal. It also was doing something super weird to my eyes. They were SO HEAVY. I could not get out of bed. I take topamax for headaches and the dose was increased and that fixed the mood swings super fast. But my eyes, extreme fatigue and depression are a major problem. I am an athlete.The inactivity is killing me. I also teach swim lessons and coach stroke technique to athletes. I am a mom to a 5 year old little girl. I cannot lie in bed for 5 years. My relationship which was so strong during most cancer treatments is experiencing its first difficulties because the hormone therapy is literally CHANGING WHO I AM. Chemo didn't do that. Double mastectomy didn't do that. Radiation didn't do that. He says I'm different. I'm not as loving. I feel it. I have to "force" every interaction. Nothing, literally NOTHING, is easy anymore.

SO. I stopped Tamoxifen yesterday. I spoke to the nurse this morning and we are going to go over the alternatives at my next appointment. But I've done a lot of researching and reading since I posted on here a little while ago. It seems like that if depression, personality changes and extreme fatigue are my issues, the other hormone therapies are going to do the same thing and have other side effects. And I don't want to be old at 44. I know that is shallow. But my goodness...I've let cancer take away SO much. And from everything I've read, there is no guarantee that any of these therapies will prevent it from coming back right? And tamoxifen can cause some cancers?So if I take it (maybe) won't die of breast cancer, but I could die of uterine cancer. And so you are miserable in order to stave it off for just a couple of years (maybe)? And these other drugs may cause heart problems and bone problems? So I spend the next 5-10 years in my bedroom locked away from the world, struggling to get out of bed just to take a shower. While my daughter grows up wondering why her mother isn't like all of her friends' moms. Why she stays locked up in her room, looks like a zombie and is always so tired. She'll have never known the old me. She'll only know the cancer me. She won't remember what I was like before.

So I wonder...do I just have my ovaries taken out? Is that enough? Even that sucks from what I hear. And my doc said Tamoxifen was the easiest on the body. I scared to try anything else. I want to put all this behind me and forget any of it happened. I understand that that kind of approach could kill me.

I have a big decision to make soon. I know I'm still in the 1st year danger zone. I am scared. I don't want to die. But while I'm living, I want to LIVE! I had a chronic condition in my late twenties that left me bed-ridden for years. I cannot go back there. I feel like if I do this now, at 44, even though I'm doing it to save my life (from cancer), I'm signing my own death certificate. I'll be going from 44 to 84. I'll be the walking dead.

I don't know if there is anyone out there who has stopped hormone therapy all together and are glad they stopped. My guess is that if someone stopped it and regretted it, they are no longer around to tell me not to take the chance . But I don't know that I have a choice. But I know if I have my ovaries out, there's no going back...they can't put those suckers back in. But maybe they could just take them out and then I could not take any medicine? So hard trying to find a reasonable middle ground.

keepthefaith

ceb, sorry you are dealing with this. I am not pre-menopausal and fortunately have not experienced adverse SE's from Tamoxifen; however, my half-sister took Tamoxifen for 2 yrs at age 29 and she had a bad experience with it also; mood swings, etc. She decided to quit taking it altogether. She is now 46 yrs old. We are all different and you should do what is best for you. BC and it's SE's are not a one size fits all! If your MO can't offer help, maybe you should seek another opinion. Best wishes with your decision.

pupmom

Sorry you are going through all this. But, nobody here can give you medical or even anecdotal, advice, especially when you have not filled out the diagnosis section of your profile. You also did not discuss your cancer stats in your original message, which would, at least, give us a clue. Because of this, we don't have even a ballpark understanding about how much risk you would be in from stopping tamoxifen. It is your body and your life, decisions about which, I, and, I daresay, everybody else here, respects. Best wishes whatever choices you make.

SugarCane

I didn't realize it wasn't showing up. I'm new to the forum. I checked and it was all private. I made it public. It's probably better for me just to read and get my mind sorted out.

KBeee

Hoping you can work with your MO to find a balance between quality of life and keeping cancer at bay. There are no easy answers. Hoping you find one that works for you. Welcome to the forum.