New to site-35yrs old-Question regarding ovarian suppression

[ElaineRyan]

Hi to everyone,

This is my first post although I read all the time. I was diagnosed in July 05 at age 34. I am Her2neu+, Estrogen +, Progesterone -. I am question mark stage IV (in my mind). Initially their was a spot on my liver but it responded to treatment before they could biopsy but with that being said ,they are assuming it was cancer.

I had chemo before surgery because they knew it was in my nodes from a needle aspiration. Responded great to chemo/herceptin. After 4 months of chemo. I had surgery, tumor was the size of a pea....initially it was I believe 5 cc. Nodes were negative.

I did 7 weeks of radiation. Throughout my treatment I have had numerous PET Scans and other...mostly to monitor my liver.

I am currently taking Tamoxifen because I did get my period back.

I just started my second year of Herceptin. This was not initially my onc. recommendation but after seeing another onc. I felt like it was the best thing for me to stay on Herceptin.

My question pertains to ovarian suppresion. I am definatley having my ovaries removed. I don't want to deal with shots and I am done having children. My OB/GYN thinks I should go for the whole hysterectomy.

Was wondering if anyone has done this? Or has thoughts.

Thanks Elaine

[Sandy H]

If it was me I would go for the whole thing including the appendix! I requested taking the appendix and I was glad I did because they were inflamed. The OB/GYN said I would have been back in for another surgery within a week. They were also wrapped around the bowel. Its our choice but that is my experience of course, I was having lots of pain and bleeding and yet the US did not show anything serious enough to warrant surgery!! Well, once in there I was a mess. It just may save you problems down the road. Wishing you well. hugs, Sandy

[sabpri]

Hi Elaine,

You are one of the first people I have met that has a similar situation as me, being a ??? Stage 4. They saw spots 2 spots on my bones and said it was cancer on PET, nothing on Bone Scan, questionable on CT, so I am documented Stage 4, but I am still questionable in my mind. I try and think of myself as Stage 3 until proven otherwise.

I was 37 and was also done having kids. I also tested BRCA+, so there was no doubt in my mind I was going to have my ovaries removed. I really conteplated whether to do the total hysterectomy or just ovaries. In the end, I decided I had enough surgery for now and opted for the ooph. I could have it laproscopic. I just feel like I had enough body parts removed. Now I can take Arimidex since I am post-menapusal and I think it shows better success rates than Tamoxifan.

How old are your kids? Mine are 5 and twins 3. How do you handle dealing with kids and a scary future. I was diagnosed August 05 and I am having a hard time worrying about recurrance, especially with ? Stage 4.

Natalie

[Bev]

Hi,

I hope the experts will chime in soon. If you do the oomph your uterus won't be doing a whole heck of a lot anyways. One of the side effects of tamoxifen is uterine cancer. So I still have mine but if you're doing surgery and your docs are recommending removal, consider it. My Gyn also said resumption of periods is not a good thing, but it seems everthing is different for each individual. Good luck. BB

[Becky]

I only had my ovaries out. You are having them out to go onto an aromatase inhibitor and that doesn't cause uterine cancer like Tamoxifen could. Healing is a ton easier too which is why my gyn only took the ovaries and fallopian tubes.


Kind regards

Becky

[Kimberly Lewis]

HI - I am 3 weeks out from having my ovaries, tubes, uterous, and cervix out - vaginally. I feel great, recovery was pretty fast. Have been taking it easy though. I just felt that if I am going in the hosp and under sedation, why not - i had them put in a new port at the same time. I feel like a car coming out of the garage! I have had 3 bad pap smears and am happy to have all that mess gone. It is a personal decision of course for all of us.

[tousled1]

Kim,

I agree with you. If you're in the hospital why not get it all taken care of.