ER/PR +, premenopausal issue

harrie · 04-18-2008, 07:27 PM

I inquiring for my friend who is 40 yrs old, premenopausal, and recently had a bilat mastectomy. She was stage 1, lymph nodes clear, but since she is ER and PR positive,her oncologist has recommended she either have an oophorectomy OR go on Lupron or Zolodex which will shut down her ovaries.

I would like to hear for others who were also premenopausal and if they had this same recommendation.

She is a bit confused because she was told by her surgeon that her path reports were so good that after her mastectomy, her chance of recurrance was like 2%. So of course she thought she was done. But now she needs to consider the estrogen issue and prophylatic measures.

Thanks!
Maryanne

Becky · 04-18-2008, 08:36 PM

I was not recommended either but did so on my own for a variety of reasons. However, this was before several trials concluded within the last 12-18 months that recommend shutting the ovaries down one way or the other (exactly the ways you said).

These studies conclude that shutting the ovaries down of a premenopausal woman actually works as well as shutting them down and taking an antihormonal.

Since she is only 40, she may want to chemically shut them down with Zoladex or Lupron rather than remove them. She can always remove them at any time (but once done, they can't be put back)!

I was 46 - almost 47 (nearing the natural time) and my paternal grandmother died from ovarian cancer so I had some extra incentives and reasons for oophorectomy.

As for her prognosis - that too should be taken into consideration. She should seek second and maybe third opinions. In the meantime, she can take tamoxifen without ovarian suppression until she is happy and satisified with her path forward.

Susan · 04-19-2008, 05:23 AM

HI: I was premenopausal too, and I had faslodex injections, when I had chemo, and temporarily went through chemopause. About a year after my treatments started, and started my periods again, I opted to having my ooph and hyster. done so I could take arimidex. Being I was HER2+, the oncologist wanted me on an AI. In order to take Arimidex, you need to be post menopausal.

I had the surgery done laproscopically and was back to work in a week. It was the easiest part of my cancer treatments!

Janelle · 04-19-2008, 09:39 AM

Maryanne,
I was diagnosed at 37. My onc has not suggested that I shut down my ovaries. I am taking tamoxifen though. Your friend should check out the YSC board which is directed at women who are diagnosed at age 40 and under. Youngsurvival.org. She should go to the Bulletin Board. She will get lots of info from premenopausal women there.

Janelle

caya · 04-19-2008, 11:52 AM

Interesting thread - I just had a talk with my onc. about this very subject this week at my Herceptin infusion. He does not feel I should take them out for 2 reasons - I. He wants me to avoid unnecessary surgery and 2. He wants me to stay on Tamoxifen for a total of 5 years before switching to an AI because I have ostopenia and Tamox is good for the bones, the AIs are not. Osteoporosis runs in my family - my mother and her 2 sisters both have it - quite severe.
I was 48 at dx., will be 50 this September. I did have a consultation with a gync. onc. who respectfully disagreed with my breast onc. - her feeling was to take them out. Right now I am content to not yank them out, at least until I pass my two year mark, which will be Dec. 2008.

all the best
caya

Lien · 04-19-2008, 03:39 PM

Hi,

I was 44, premenopausal, when I was diagnosed with Stage 1 6mm, clean nodes, clean margins IDC. Initially my doc didn't think it was necessary to do hormonal tx, but when it became clear I was HER2 pos, he recommended I see an internist for a second opinion. Again, they didn't recommend hormonal tx, but if I wanted, I could have it. Because at the time they weren't sure which hormonal tx. would be best, they wanted me to try Zoladex and Arimidex. They thought it gave me the best shot at remaining cancer free. My youngest was 3 at the time, and my then 8 year old has ADHD and a father who doesn't know how to deal with that. So for me it was ultra important to do anything that would give me a better chance of survival. And I didn't know how I would explain to my kids that I didn't try everything to stay alive for them. So far this therapy has been quite uneventful. The shots are once every three months and although they hurt a bit, it's no big deal. I get some hot flashes around shot time, but they are far less annoying than having a period every month. Arimidex has been easy on me. I had some joint pain at first, but that has subsided. My hands and feet are still a bit stiff in the morning, but I can live with that. It usually clears up after 10 minutes or so. I do have osteopenia, which I developed after starting the AI. Haven't had a scan for a while, so I have no idea where I stand with that. Had a nasty fall about 9 months ago, and didn't break anything. So far so good. I don't want my ovaries out permanently, because we have no idea what such estrogen deprivation can do to the human body in the long run.

Hope this helps.

Jacqueline

harrie · 04-19-2008, 06:32 PM

Thank you very much Becky, Susan, Janelle, Caya and Jacqueline. I appreciate you taking the time to respond to my inquiry. My friend will surely appreciate your input.

I wish when I was in my 40s that my 2 episodes of DCIS would have been able to be evaluated as they do now.

Maryanne

sassy · 04-19-2008, 07:12 PM

Harrie,

I was 45 at dx and pre meno, and have been taking Lupron shots to suppress ovaries for 2 1/2 years now, taking Arimidex. My onc did not want me to have my ovaries removed. He was aware of studies that indicated Lupron may actually be beneficial as a preventative measure. At one point he remarked to me that in the future we may find that the Lupron has been more beneficial than the Arimidex in terms of recurrance. I am now on monthly shots, since my levels would not remain low enough on the three month shots.

R.B. · 04-20-2008, 09:18 AM

There has been quite a bit of discussion round the topic of premenopausal women in general terms.

Here is a link to one post and a link to the results of a search on fertility.

It might also be worth searching under sex.

I also remember seeing material on http://www.annieappleseedproject.org/. The was an article looking on the impacts of loss of `fertility', lifestyle v risk etc in a down to earth objective way. I am afraid you will have to search for it. I may already have posted the link in the list in the thread below. I might be able to find it but am a bit busy at the moment.

RB

http://her2support.org/vbulletin/sho...ghlight=rupali

http://her2support.org/vbulletin/sea...d=261174&pp=25