I was diagnosed with breast cancer 6 years ago and just finished up my 5 years of Tamoxifen. At year 3 of taking it I had to have a D &C because of fibroids and polyps. Then I had to have it again in year 4 due to enlarged endometrium stripe and now at the end of year 5 my endometrium stripe was once again enlarged. I've been off tamoxifen for 3 months and went back for another ultra sound and it shows that my stripe hasn't gone down but has in fact gotten larger. So now I have to have a hysterectomy. I have several fears, one being I had a tram flap as my breast reconstruction and I worry that there will be complications even with a vaginal hysterectomy and I of course worry about another diagnosis of cancer. Is there anyone out there that had this same thing happen to them? I'd love any help or words of advice. Thanks.
I'm sorry that you have been through all of this. I can't help with your question, but I know others here can. I do recall reading about estrogen positive breast tumors, and the connection they sometimes share with ovarian cancer. I'm hoping that its not cancer in your case!
I do recommend that if any cancer is suspected, that you immediately consult with a gynecological oncologist. They can provide you with the best chance of survival if cancer is found - and can determine spread and address it immediately if cancer is found. And if its not cancer - they are still experts!
You've found the right place to be. There are wise and wonderful women on this site. Take care.
Hi (((wvuvavt))) I'm sorry you are facing a hysterectomy now on top of all you've already gone through. We do have a few members who have gone through a similar set of circumstances - you might look for posts by "beachball" to read about her experiences of a hysterectomy after a tram flap procedure.
My understanding is that difficulties with a hysterectomy after that procedure usually occur, if they do at all, when the hysterectomy is done abdominally or laparascopically. If yours is to be a TVH, I would think you'd be OK. Not to minimize your upcoming surgery, of course - I had a TVH as well, and it's not like getting a tooth filled - but I don't think you'd expect to have any impact from the prior surgery.
Hopefully you won't wind up with an endometrial cancer diagnosis when you get your pathology results from the hysterectomy, but there is definitely a connection... taking Tamoxifen greatly increases the likelihood of endometrial cancer (not ovarian; there is no connection there that I'm aware of) because Tamoxifen causes endometrial proliferation. It's a funny drug in that it acts 'like' estrogen in some tissues (endometrium) and 'opposite' of estrogen in others (breast tissue).
Are you having your ovaries removed at the same time as the hysterectomy, or will they be staying? Are they back to 'normal' functioning now that you're off the Tamoxifen? Is your DR expecting you will be able to use HRT if you either have them removed or they stop functioning after the uterus is removed? You may want to discuss with your DR how you will handle menopausal symptoms, especially during your recovery when you will want to be as comfortable as possible so you can heal.
I hope this helps... good luck with your surgery, and I hope your pathology comes back A-OK
My situation is not the same as yours, but I too was on tamoxifen for five years, as part of a clinical trial. I was at risk for breast cancer due to my own and family history, so took part in a five year double blind program, taking two pills every day - one was a placebo and one was the real thing - either tamoxifen or refloxifen. At the end of the five years it was revealed I was on the tamoxifen, and within a year of the time I stopped taking it I was diagnosed with a very rare form of uterine cancer. "They" say the two are not connected, but I am not buying it. As Surferbabe said, there is a proven connection between the two. Because of my past experience I am very gun shy about getting involved in any more clinical trials - I want the proven stuff, not experiments. Unfortunately, there is nothing proven yet for my type of cancer, so I dont have a lot of choices.
Thanks everyone. I also post on a breast cancer web site but you have all helped me a lot. I don't know what everything thing is called and I don't (at least not yet) understand the initials to the different procedures but I do know that I am having everything removed. I am not able to go on HRT as my breast cancer is estrogen positive. When I recover from this I will then begin a new breast cancer drug that I can only take once I am menopausal so this will take care of that issue. Since I have been through SOOOOOOO many procedures because of the breast cancer, I'm not too concerned about this one. Just finding out later if it is indeed cancer is my main worry and if the tram flap would be a problem, but that one sounds like it may be a non issue. I think the saying ignorance is bliss might be my motto right now. I guess I don't have a clue what recovery will be like but after the tram flap I feel that NOTHING!!!!! could be las bad as that. I really like this site and I am glad I found it. Thanks so much for your support and kind words. God bless to all of us!
I went through almost exactly the same thing you did. I was diagnosed with Breast Cancer in April 2001.... had surgery, chemo, radiation, herceptin, and 5 years of tamoxifen. This past February or so, an endometrial biopsy showed complex hyperplasia.... and a hysterectomy was recommended (I think that's our only difference as far as how we wound-up getting the surgery recommendation).
In March of this year I had a total hysterectomy and bi-slingal oopherectomy. Everything came back fine (no Cancer)!
I'm being honest when I say that I don't regret having the surgery at all. Yes, it was definitely an experience...... but it's nothing you can't do or get through. Especially after a Breast Cancer diagnosis. I'm only 41 and I have no children.... but those things didn't make my decision any harder, as I felt I lost my "chance" to have children the day I was diagnosed with a positive estrogen-receptive Breast Cancer.
I'm more than willing to answer any questions for you.... or even just listen. I know how you feel, believe me. My true advice? Have the surgery... (get it overwith)... and move on with your life. You're obviously a very strong woman... you've been through major stuff before... and I promise you, this too will pass.
Once again everyone thanks for your supportive replies. I woke up this morning and found that I am now bleeding. I haven't had a period for 5 years and I am a bit worried. It's Saturday and Christmas is Tuesday so I don't think my Dr. will be in the office until maybe Wednesday. When I last talked to my drs. office to set up pre surgery info, I also found out that my endo stripe is now 17cm up from 13 this past summer. So I think the odds do not sound very good for this being nothing, especially now that I am bleeding. If it is cancer, taking it out could be the cure. At least I knew I had breast cancer when I went in for that surgery. I guess this never ends. I'm trying to find info on the internet on thick endo stripe and cancer but I'm having a hard time. On a different post someone did leave some web addresses but they were just about how tamoxifin causes the thickening. Any suggestions from anyone? This was long but it helps me to "talk" about it. Thanks for anyone that "listens".