Tamoxifen (chemo, surgery, time, hysterectomy)

[Zyngawf]

To take it or not. I'm a recent breast cancer survivor and had a very tough time with chemo. I've only taken one tamoxifen pill and can tell the difference between today and yesterday. It's horrible. I was finally getting back on an even keel and the thought of taking this for at least 5 years doesn't seem possible. Any one else want to share their experience with this here? I know a lot of people don't make it through 5 years of it.

[christina0001]

Hi, I have taken tamoxifen. I have a love-hate relationship with it. First time I took it, I got horribly, seriously, scary depressed. Of course this was right after a mastectomy and I'm sure that did not help. So, I went off of it.

A few months later I talked with my oncologist about it. He strongly advised me to take it as my cancer was very estrogen positive. So this time around, I started Effexor for about three weeks first, and then restarted the tamoxifen. I had no mood problems whatsoever that time. After about five months I weaned off of the Effexor and still did not have mood problems.

I had hot flashes both times... not fun but they weren't terrible either. I had them through chemo so it wasn't anything new.

I stopped the tamoxifen a few weeks ago (I'd been taking it for about a year). I have a huge fibroid on my uterus now. There's no way to remove it without a hysterectomy. I'm really angry about it and I don't want to have more surgery. So without telling my doctors (I know, that's bad) I stopped the tamoxifen. I go back to my ob/gyn in January and I'm hoping without the tamoxifen, it will have shrunk or at least stopped growing. It's not causing any symptoms so I don't see why I need to have a hysterectomy as long as I can get it to stop growing.

I do plan on restarting the tamoxifen at some point. For all the side effects, it is proven over decades of research to reduce the risk of occurrence by half. That is HUGE. I know I'm going to be very regretful if I have a reoccurrence and I'm going to blame myself for not taking the tamoxifen. But I just can't cope with the idea of more major surgery right now. I'm about 2/3 of the way through reconstructive surgery.

My mother is a breast cancer survivor and she took it for all 5 years. She gained about 30 lbs on it - I did not have that problem. As soon as she stopped, the weight came off. Otherwise she had no troubles with it. Her sister also took it for five years straight; she complained a lot about side effects but I can't recall exactly what troubles she had. She (my aunt) liked to joke that she could blame anything/everything on tamoxifen.

I would encourage you to try to at least stick it out for a few weeks. A lot of medications have side effects initially that eventually stop. I have heard some women say they have less side effects if they take it in the morning; others swear by taking it at night. Whatever you decide, best of luck. Cancer (in my opinion) is just a series of one crappy choice to make after another.

[stepka]

I've been investigating some alternatives over on the breast cancer forums and some of the women are discussing the use of DIM. All About Diindolylmethane (DIM) It's supposed to help with the side effects of tamoxifen but I'm sure some use it as a substitute for T b/c it's supposed to do much of what T does. Not sure of the side effects of DIM yet--I'm still looking into it but I will probably try to use it as a substitute, b/c the list of side-effects of T is a mile long and they sound unacceptable to me. You are so right about one crappy choice after another. Good luck to both of you.

Oh yeah, and one thing about DIM is that is doesn't suppress all of your hormones but it changes them into a healthier ratio. And Christina, I have fibroids also and this should help. Did either of you have your ovaries removed? I'm think I'm planning to as I don't need them any more but you're still supposed to take the T.