Ovaries removed to decrease ovarian cancer risk

shannonW

So..prior to the DCIS dx 2/7/11 I was scheduled for a hysterectomy for prolapsed uterus(but was gonna keep my ovaries). The cancer dx and BMX sort put all that on hold and beleive it or not my prolapse issues have improved with exercises(saw a P.T.) and increasing my water intake/fiber. Maybe TMI but was having issues with constipation. Anywho, my ob/gyn has said since this cancer dx she want to go ahead and take my ovaries. I'm ER+/PR- and Braca ! and 2 negative. Don't know how I feel about that. I 'd be fine with my uterus gone(i have 2 kids and my ob/gyn took me off the Pill as soon as I got the cancer dx). Just don't know if I want my ovaries gone(whole menopause thing) at 40 if I don't need to. Any thoughts or insight would be helpful. There's no rush on this surgery or making a decision at this point as I want to get thru this BMX/implant phase finished. Any insight would be helpful! This forum is great for that and I appreciate all the comments.

slinky

I am having a hysterectomy with ovaries removed at the time of my exchange.  I am having a hell of a time coming to terms with going through menopause before my natural time.  I think I have whined to everyone of my friends that I am afraid of weight gain, hair loss, brittle bones and mood swings.

I am BRCA1 + so I have to have it done.  The only control I have is to work out, watch what I eat and use rogaine.  I also take supplements for my bones to counteract dry skin.  So far, no weight gain on tamoxifen and Lupron shots, but I do have dry skin.  I moisturize after showering, which helps.

Take your time to make your decision - my mom said it was the best thing she has done, but she gets to use an estrogen patch to counteract some of the SE's of menopause.

shannonW

I didn't test + for the BRACA 1 and 2 BUT my ob/gyn wants to go ahead and take them out when she does the hysterectomy b/c of the increased risk of ovarian cancer having had breast cancer. I think that's where I'm un-decided as to what to do. Is the risk of having them out worth the risk of having them out? Hard decision.

angelinac

I heard there are some concerns for acquirining osteroporsois, I know there are others. Someone had heard about a forced early menopause if its done prior, get someone explain that more?

Estel

shannowW - If you could have the BRAC1 and 2 test done w/out a lot of expense, I would do it because then it could at least sway you one way or the other.  Knowledge is power.

I have a cyst on my ovary that they're watching and I've thought a lot about going ahead and having mine removed (I'm 41).  But after reading and thinking a lot about it, I'm not going to do it if I don't have to.  Estrogen has a beneficial effect on our heart.  From my understanding ... taking out the ovaries can lead to an increase in our risk of a heart attack.   I want to keep them as long as I can.  That's just me ...

voraciousreader

Why not have a second opinion? 

shannonW

Funny thing about 2nd opinions is all the MD in my immediate network are in same office as present ob/gyn. My regular MD practitioner recommended I go to Vanderbilt in Nashville, TN for 2nd opinion. May do that as she can make that referral but it will be mostly out-of-my-pocket since out-of-network.  Hate it that insurance is dictating. I know I can't put a price on my health and may do the Vanderbilt 2nd opinion but want to get thru the TE/implant process first!!! Just wonder if I shld even worry as I'm not BRCA+, and have(had I guess now!) stage 0 DCIS.  BUT if they go in and remove uterurs for another issue I wonder if I"ll regret not having them removed at that time. My ob/gyn says "Let's take them out!" But don't wanna go into menopaue at 40. Decisions, decisions!

Fearless_One

I had mine out robotically and never looked back.  

37antiques

Hi Shannon!  I had a total hysterectomy to reduce risk, and I think the benefits outweighed the risk for me.  It was either that of be on Tamoxafin until I was at normal menopause age, so I figured I'd just get it over with once.  I already had my (6) kids and didn't need those body parts anymore.  I had hot flashes, but they were controlled by effexor, and I find that if I am not stressed or anxious they don't happen anyway.  No problems with hair, nails or dry skin.  The deciding factor for me was easy, I had many abnormal pap smears and several procedures to remove cells, it was almost a given that I would get uterine or cervical cancer the way mine was acting.  I haven't gained weight or had any of the menopause side effects, but that is just me.  I never had serious mood swings during menses, I don't know if that plays into it at all.  I was 37 when I had it done, and if you figure menopause can happen from early 40's to 55 for the normal range, I wasn't too far ahead of schedule.  I just don't see a down side, so I guess it comes down to how much it will lower your risk and if you have or had any problems with it in the past.

mocame

I was diagnosed at age 38 and tested BRCA 1 & 2 negative.  My diagnosis sounds similar to yours.  My oncologist suggested that I wait 5 to 10 years to have them out.  My gyn. agrees.  I discuss it with my gyn about it every year.  I do have family history of osteoporosis so that is a concern.  Also my family tends to go into menopause later in life rather than earlier.  I just don't want to put my body into menopause too early. 

Would your doctors be okay if you waited a few years and kept getting checked like Britchick mentioned? 

shannonW

What is the CA-125? I think her big concern was the ovarian cancer risk. My onco said that normally a woman has a 1 in 80 chance of ovarian cancer. With breast cancer diagnosis it increases to 1 in 40. The fact that with ovarian cancer it's usually not found til it's late stage rationale is what scares me. But with the monitoring BRCA guidelines that's a possibility. My big issue is sudden monopause/side effects issues. To be honest I guess I'm vainer than I'd like to admit and I've seen several friends struggle with their bodies/hair having hysterctomies/ooph. If I could hold off I'd like that. BUT, I don't want ovarian cancer either and we are done with children. The weird thing is this and I'll just get graphic...I was going to have a hysterctomy(keep ovaries) prior to all this breast cancer stuff for a prolapsed uterus/cervix. I had issues with it at 31yo(2000) carrying my 2nd and final child. It reared it's ugly head again in December 2010. To the point where I could visualize my cervix. I went to physical therapy and with kegel's and constant attention to not getting constipated/straining it seems to have subsided for now and tightened up in a sense(not feeling pressure or seeing "the turtle" as I call it!). Oh, and did I mention I have fibroids, many, and and enlarged uterus! So here's the kicker...I go off the Pill in Feb with the breast cancer diagnosis and I've had regular periods and no break-thru bleeding(from fibroids). In fact I've done better off the Pill than on it with my flow. So I'm basically at a decent place cycle-wise. So I feel like...let's just wait and see what happens. Even if I can hold off 5 years that would make me happy.

Fearless_One

I guess I just didn't view menopause as that big a deal.   Chemo threw me into menopause at 44, but even had I not had chemo, I still would have had the oopherectomy/hysterectomy for 3 reasons: 

1) onc told me I was at higher risk because of the breast cancer

2) tumor markers (such as CA-125) are notoriously unreliable

3) ovarian cancer is a silent killer, with no real obvious symptoms in it's early stages.

voraciousreader

Is it necessary to go to Vanderbilt for a second opinion? Could you meet with another doctor in the practice? How about your GP sharing your history with another doctor? When I was diagnosed, my GP had a second oncologist, a close friend of his, review my case. My niece also an oncologist chimed in. I don't think your doctor should mind you seeing someone else in the practice. Similarly, while my husband sees one doctor in a cardiac practice for 15 years, from time to time he sees the other doctors in the practice and they sometimes have different opinions about his treatment. If I were you, I would take as much time as possible in making a decision and not dismiss seeing another doctor in the same practice. One other thought. Perhaps you can ask your doctor to discuss your case with his/ her colleagues. When we last saw my husband's cardiologist's colleague, I overheard him talking about my husband with one of the other doctors before recommending yet another new med for him. Can't hurt to ask. And you never know. You might be pleasantly surprised by their cooperation.

nikola

I just had my ovaries out on Wednesday. My surgery started at 1pm and was home at 5pm. My decision was based on same three reasons fearless one stated. Also, I have clotting issues so Tamox was out. I was on zoladex inj to suppress my ovaries but I think removing ovaries surgically is easier on body then suppressing them chemically.

westiemom

I agree with Fearless One. I didn't have much of a choice after the Brac results came back positive. I was peri-menopausal, had a bi-lateral, then told i needed an oophrectomy; this certainly puts you in surgical menopause. I'm taking calcium, nioxin vitamins for my hair, my hair is growing back thick, also taking arimidex. The pathology from my oophrectomy showed i had dysplasia on both fallopin tubes and moving down to the ovaries. This probably would have never been detected. But this only confirms to me that there is much vailidaty to Brac testing.  Best wishes to you!

voraciousreader

Nikola... Glad you are recovering well. I am doing chemical ovarian suppression and it is working out well for me. I don't think there is evidence that chemical or surgical ovarian suppression is better than the other.

Nana60

For those that have had their ovaries removed - I am wondering if you had any problems getting your insurance company to pay for the procedure?

nikola

voraciousreader, I was on zoladex since Dec and did not have any SE either. It was either to be on inj next several years or to remove ovaries. I decided to remove ovaries. There is connection between pituitary gland and zoladex inj and I was diagnosed in 1998 with microadenoma (tumor of pituitary gland that was treated with oral meds). I did not want to put any extra strains on my pituitary since it controls many other hormones.

I had head MRI just before my surgery to make sure my pituitary was not affected by inj. Results in 8 days.

voraciousreader

Nikola... Hope you do well. One question... Why did they give you the injections in the first place?? Just to see if you could tolerate the instant menopause???

nikola

voraciousreader, I was on zoladex from Dec - April while waiting for surgery date. My onc was uncomfortable leaving me without Tx for so long. I was premenopousal so they needed to suppress my ovaries.

voraciousreader

Nikola... Keep well! And gee, I thought I waited along time to get my shoulder surgery! That's a long time to wait....

elmcity69

hi shannon,

i had my ovaries out in october, largely due to my positive BRCA2 status. menopause hasn't been the most fabulous experience (i am 41), but hardly horrible. Some hot flashes, a bit weight gain (although i could blame the chocolate). i do worry about the cardiac effects, but frankly, that is more easily screened and addressed through diet/exercise, etc. than ovarian cancer, which is known as the "silent killer".

the operation was laparoscopic - up and about at 90% the next day.

everyone is different in her perspective. as a stage 3'r, i do not worry about what might happen in the next ten years - i just focus on being around for them.

Fearless_One

Nana, I had no trouble at all getting insurance to cover it - and I had DaVinci robot, which is very $$$.   But it's all going to vary depending on your particular insurance plan.   

shannonW

Made the decision the keep my ovaries. Surgery scheduled for 9/13/11 and they r going to do my final nipple creation at the same time. The thing is the hysterectomy isn't breast cancer related it's for a prolapsed uterus. IF the prolapse had not happened taking out uterus or ovaries wouldn't even be on the table with my DCIS. Did a lot of research and my "gut" tells me to keep them in for now. Weird, having a hard time with the thought of a hysterectomy. Breast removed for cancer, no prob! But for some reason it hard coming to term with losing my uterus. The gynnie will monitor my ovaries closely she said.

fredntan

for those of you that had ovaries/uterus removed-how where side effects? I'm thinking I want this done also. I'm braca-, but I'm sure I'll just worry myself to death over these if I don't. my doc said worry about later and I will. would this be something they can do also while they have me under in fall for TE exchange?