bc survivor and unsure

Hi,
I posted this on the pre-op board, but that might have been the wrong place. I've had bc twice, the most recent last year. I had a mast.w/ reconstruction and I'm almost through with that. I also have a history of fibroids, heavy bleeding and thickening of the uterine lining. Because of that, my docs were unsure about giving me tamoxifen. I decided to start it in Sept. 2003. My hope was that it would put me into menopause, shrink the fibroids and I would still be able to avoid a hyst. Instead, the fibroids have grown, my uterine lining has gotten thicker and my bleeding has become worse. After years of putting off the hyst., I'm considering it because I think it will not only solve the fibroid problems, but will also eliminate most of my estrogen-ovaries would be removed. I just wanted to know from experienced voices if I'm on the right track, or if I'm overlooking something. I've been following the posts on this site for about a month, this is my second post. Is there anyone who's had a similiar situation and is willing to share? I appreciate your help.
Thanks,
Dorene

Dorene,
I think you're probably on the right track with a full hyst. I too am a breast cancer survivor and had been on Tamoxifen for several years and thought I was doing just great until Jan. 27, 2004, when I suddenly started hemorhaging and had to rush to emergency room. They did ultra sound and found mass in my uterus which turned out to be malignant tumor and a total abdominal hystrectomy was performed on me the next day. The doctors said that they were sure that the cancer in my uterus was caused by my long-term use of Tamoxifen. In looking back, I wish I had had a hystrectomy done before I even started on Tamoxifen since I would have avoided the problems I just went through. Of course, hindsight is 20-20. Thankfully, all my lymphnodes were negative, but I sure went through Hell for a week waiting for my pathology results. Of course, the choice is up to you, but now I'm glad it's all been done and the good thing is that I don't have to worry about getting cancer in my ovaries (which is a favorite place for breast cancer to migrate to). I'm in the process now of checking to see if there are any other kind of medications which I might be able to take as a deterrent for my BC since I've now been taken off of Taxmoxifen or whether I need to take anything at all. You don't indicate your age or whether you've had your family already so that would need to play into your decision too. My children are grown so if I had been given the choice I probably would have went through with it. However, in my situation, it all happened so fast, I didn't have a choice - they just told me what I was going to do. Which is probably good since I've seen how terrified some of these women are who have had to wait several weeks for their surgery and I'm sure I would have been the same. Please let us know how things go.
Bettye

Thanks so much for your response. I'm so sorry to hear what you've been through. So you're only a couple weeks out of your hysterectomy, right? It's very scary when the possibility of cancer is mentioned. I hope your recovery continues to go smoothly. I'm 45, I was 40 when I first had bc; 44 the second time. My kids are 17 and 13, both adopted. I've never been pregnant, and at this age, it's the last thing on my mind! I hope that's not offensive to anyone. Thanks again for your help,
Dorene

Add one more BC survivor to the list!! I think your thinking is swinging the right direction, Dorene. My story's a bit different, no Tamoxafin...but still, golf ball size mass on my right ovary. Surgery sceduled this coming Thursday. I knew it wasn't good when my doctor called me on Monday (holiday) to say she wanted to refer me to gyn-oncologist. I was in that appt Wednesday and scheduled surgery.

I know the drill from my BC, same happened there. Referred by gyn on a Wednesday in September of 2000, mastectomy the following Friday. Only found the mass now because we were working through all the tests to see if I could get pregnant -- three yrs out of chemo, oncologist just saying ok to go ahead. Actually, were to the point of referals/testing right before my BC. I hadn't then been all that good with staying pregnant. Thank God we were getting all examined, poked and prodded, that ultrasound may have saved me!! Adoption always did appeal to me (BTW, I'm 38 and have no kids of my own).

Anyway, the mention of possible cancer had me wanting surgery and have it all out ASAP. If malignant, both ovaries and uterus gone -- and then most likly chemo. If benign, right ovary and uterus going. My periods have been killer since they came back after chemo. The ultrasound also brought forward some abnormalities in my uterus. Not sure what...but I just want it out. I didn't even debate lumpectomy with my BC and don't want to mess around now!

Hard decisions...
Julie

Thanks for sharing, it really helps me to hear from others. Sorry to hear that you need to face more surgery. We went through all kinds of fertility workups and treatments, too. I wish you the best with that. I hope all goes well with your surgery this week. Take care,
Dorene

Hi, Dorene--

Sorry to read about your two bouts with breast cancer as well as your recent gynecologic problems. If you've been reading posts on this board for a month or so, you've probably seen the repeated recommendations that women should see a gynecologic oncologist.

Although you do not have a diagnosed gynecologic cancer, if I were in your situation, I would consult with a gyn-onc and have him/her perform my hysterectomy given your personal cancer history, tamoxifen use, and your current symptoms.

I was treated for endometrial cancer by an experienced, highly-regarded gyn-onc in 1999. I received excellent care and was very fortunate to have minimal long-term side effects.

Take care and good luck!

MoeKay

Dorene,

I'm sorry to hear about your recent medical difficulties and uncertainties. You (and your drs) are in my prayers as you assess the situation and the best approach to take.

The gyn/onc suggestion that is often made in these posts is one that I'd consider if I were dealing with that situation.

I hope that you'll keep us informed, and hopefully with good news!

Blessings.
Marlene