Should I get a prophylactic oophorectomy?

surfette · March 2014

I had stage 1 breast cancer at 46 while still getting my periods. I had surgery and radiation; no chemo. I've been on tamoxifen since January 2011 and stopped my periods a few months later. I'm 50 now. I go for regular pelvic ultrasounds and they always show cysts that come and go. My latest one has two 3 cm cysts in one ovary. My gynecologist has strongly suggested I consider getting these ovaries removed prophylactically. Of course I am concerned about ovarian cancer or a recurrence of the breast cancer, but I heard oophorectomy can lead to cardiac problems? I'm not sure what to do. I'm BRCA negative. My mother's aunt on one side of the family had breast cancer as well as her cousin on the other side of the family. So my family/genetic risk is not great however I do keep getting these cysts.

If getting the oophorectomy would reduce my risk of cancer I'd do it in a minute but I'm concerned about the downside.

mdg · March 2014

I had mine out for the same reason. I had a large cyst that would not go away. My gyno recommended removing that ovary but since I am hormone positive she just asked if I wanted both out. I decided to do it. I had it done about a year ago. I was 45 at dx and my last period was during my first chemo. I have been on tamoxifen since completing chemo and never had another period after starting chemo. The surgery was not bad. Recovery was not bad either.

surfette · March 2014

Did you gain weight after the oophorectomy? I heard that is a side effect. i already gained a bunch of weight from the tamoxifen and I can't take much more of this.

lemon68 · March 2014

I had both of mine out in Sept (premenopausal and 44). I also had 2 large cysts, and 1 had burst so they took everything because at the time they did know if any of it was cancer, luckily is was not. I have no gained weight since, I had already gained during TX! I am glad so far so good. Other SEs like hot flashes and night sweats but to me its a small price to pay for cutting out the estrogen and cysts. Best to you whatever you decide.

GrumpyCat · March 2014

I had mine out in 2011 at age 43. I did gain a bunch of weight but I started hormone blockers and was taking Effexor, too, so who knows what the culprit was. To tell you the honest truth, I regret having the surgery. I wish I had tried Lupron or Zoladex first so I would have a better idea of what the result would be.

I had good reasons for having the surgery, including not being able to take tamoxifen because of pre-existing gynecological conditions, but I underestimated the effects of having zero hormones on my body.

pod1257 · May 2014

I had stage one breast cancer also at age 48 and premenopausal. Grade 2, no nodes and a low oncotype. I had bilateral mast, zolodex and femara. My onc wanted me to get the ooph d/t family hx with my mom and aunt. After much back and forth worrying about it I finally did, even though I was not BRCA +. I for one really regretted it. - I knew from a health standpoint ovaries produce not only estrogen, but testosterone and progesterone, all so vital for a women's health (cardiac, bones, energy, joints, mood/mental health, memory, blood pressure, sex drive just to name a few)

I know anyone can have a recurrence but d/t my low risk I wish I had not "given up" such an important organ. I am now 8 yrs out and had terrible hot flashes for years, memory loss, developed high blood pressure and osteopenia. I decided in 2009 to replace the testosterone through hormone pellets that I get every 6 mths. I also take sublingual bioidentical progesterone. Although controversial I have also received very small amounts of estradiol through the pellets once/yr. - There is research that for some survivors of low risk and low ER+ small doses of estradiol is more beneficial than harmful. I would never suggest that anyone do the same but each of us has to make our own decision. - For me,I feel 100% better, almost like my old self. No more hot flashes, BP is normal, joint issues and memory loss gone.

Re the surgery itself - It is a very easy recovery. - I was out walking the next morning.

Julie

surfette · May 2014

Update:

Last Tuesday on the advice of one of my oncologists, I had the whole ball o'wax removed: uterus, fallopian tubes, ovaries, cervix. I would like very much to supplement with testosterone as I was told that really helps with weight issues particularly, but wondering if that puts you at risk for recurrence.

pod1257 · May 2014

While no expert, I have researched this a lot and to my knowledge testosterone does not cause risk of recurrence. The only side effect I have had is some facial hair on the jawline which of course I am not happy about. My Dr. told me there are some things you can take such as saw palmetto that can help some. So far I am just doing the usual plucking, waxing etc. - Definitely annoying but well worth it for all the regains to my health and energy.

Julie

Mischief46 · July 2014

geez...I can't decide what to do. I am 46 and was diagnosed with BC (ILC) in April and had a BMX in May. My paternal grandmother had BC at 64 and died of ovarian cancer at 74. I had the BRCA testing done and was negative. But I am still considering having my ovaries removed. I know there are more genes that have the breast cancer/ovarian correlation but I could tell one of my Dr.'s just doesn't think I should and my gyno oncologist said it was up to me. If I needed to do it for my peace of mind he was on board. I just don't know what I should do. I am already menopausal so I am not worried about those side effects but the other ones...like increase chance of heart disease and early onset of dementia. My husband would like me to have them removed but has said he will support me either way. I just don't want to trade in my "peace of mind" for other issues. Okay, I know no one can really tell me what I should do..but I wish they could!! :-)

Shoresheila · July 2014

I am having the same dilemma. I'm 39 and premenopausal (my period came back after chemo). My ILC was strongly ER+/PR+ although there was no node involvement. I'm taking Tamoxifen and am BRCA negative. I'm very concerned about the other health effects of removing my ovaries.

Mischief46 · July 2014

shoresheila, yes, I wish this was easier. Do you have someone in your family that had Ovarian Cancer? I was thinking I would get my grandmothers health records and see if she actually had Ovarian Cancer or if her Breast Cancer had Metastisized to her ovaries. But she died over 20 years ago an they destroy them after 10. For some reason that put me over the edge this morning..

It started when my plastic Surgeon called today to get my Gyno Oncolgist number to set a surgery date..I almost said lets just do the reconstruction and worry about the ovaries later but I didn't and I haven't thought about anything else since. They plan on doing both at the same surgery..I am menopausal so my side effects would be less drastic than yours but I am worried about long term. Geez, I wish we didn't even have to think about this on top of everything else...I wish you luck on your decision.

surfette · July 2014

I'm glad to say I had it done but now my tumor marker is up to 30; wonder why?

Mischief46 · July 2014

Surfette...

Is that the CA-125? Odd...Do your Dr.'s have any idea why?

I'm glad to gear you don't regret it..

surfette · July 2014

No, the 15-3, the breast cancer one. It's usually around 27, now it's 30. They sent me for re-test after one month. Waiting on results.

Jenwith4kids · July 2014

I actually have decided on the prophylactic oopherectomy. I want those little estrogen factories out!

My current "worry" is when to have it done. I finish chemo on 8/3. Chemo nurse said I can have ooph during the third week after chemo is over. But rads have to start the fourth week. I don't want to delay rads - what happens if I have the oooph and I have complications?

Should I start tamoxifen and rads and then do the ooph and switch to an AI after rads?

I know if I have the ooph they can start the AI concurrently with rads.

But I don't think they give tamoxifen until after rads.

I really want to keep the ball rolling; I don't want to leave any doors or windows open for those snarky cancer cells....

I hate that my doc said, "if you want them out I will do it" he left it up to me. But I already said that decision is made, so I'm not so concerned about that.

Argh - I'm just cranky today - steroid crash.

Mommato3 · July 2014

I had one MO say remove them and the other say no. The "no" MO said his concern was for my heart and bones since I'm 41. I think I'm leaning towards having my ovaries suppressed to see how I do. I can change my mind about this but not if I have them removed.

Mischief46 · July 2014

Surfette, I hope they figure it out with a positive outcome for you..

Jenwith4kids, Wow, that is a lot to think about in a short amount of time... I am on Tamoxifen now but since they did the blood work to confirm where I am in menopause the gyno oncologist said I should stop taking it and switch to an AI. But I don't see the MO until Sept so I guess I will stay on it until he tells me to switch. I never liked the idea of taking it but after reading about the AI, I am not excited about those either.

Is anyone getting their tubes out too or just sticking with the ovaries?

lekker · July 2014

Mischief - I think it's now standard to take out the tubes when doing either an ooph or hysterectomy since it appears that many ovarian cancers start in the tubes. I had cervix, uterus, tubes and ovaries taken at 43. My MO thought it was over treatment but my gyn onc thought it was totally reasonable with my history. Along with colon and breast cancers, I was having horrible periods every other week that left me needing iron infusions before surgery. I could've tried a uterine ablation or maybe attempted removing or embolizing my fibroids, but it didn't want to mess with them - a very tiny percentage of fibroids are actually sarcoma in disguise. All of the women on my mother's side have had surgical menopause in their 40s and no one has had cardiac issues. I elected to stay on tamoxifen for at least a few years to help my bones - and to hold on to whatever estrogen my adrenals and fat can make. It's a very personal decision and no one can say what's best for you - even the doctors!

surfette · July 2014

@Jennwith4kids, why the rush? I waited almost 4 years to have my surgery after my radiation and starting Tamoxifen. It took that long for the T to start wreaking havoc on those organs! If I were you I'd recover a bit and let your body settle down before going into surgery. The last thing you want is an inflammatory response from all the stress to the body.

Jenwith4kids · July 2014

surfette - I think that's the conclusion I am slowly coming to... but - can I start tamoxifen while on rads? or do they wait until after? I know I can start an AI with rads... that would be my reasoning for doing the surgery now.

BayouBabe · July 2014

Jen - this is only my experience, so take it for what you want. I had an ooph at 44. MO started me immediately on an AI during rads. The combo of the ooph and the AI was EXTREMELY hard on my body (see stats below for timeline). I finally stopped the AIs, started tamoxifen, and am doing much better. My MO thinks it was just too big of an adjustment for my body all at once. MO says we will discuss trying an AI again sometime in the future. Just something to think about.

stfne · July 2014

I had my ooph less than a month after my bmx. I am 46 and was premenopausal. My PS said no to doing it at the same time as the bmx and TE placement. I am BRCA- but my Mother and both grandmothers had bc premenopausal and my mother also had ovarian c. My gyno said that he agreed it was a good idea and my insurance paid for it. I am glad that I will never have to worry about getting ovarian c. I wish my mother had done it so that she could be here right now even if she did have osteoporosis and heart diseases.

I was taking Arimidex but was just taken off because of depression and joint pain. Not sure what I will take next but I didn't know that tamoxafin was a possibility. I have gained weight and have had horrible hotflashes! I think thevweight gain is more from stress eating for6 months now.

Soooo much to think about and research and think about etc.

surfette · July 2014

@Jennwith4kids: I don't think at the same time. I finished radiation in December and started Tamoxifen January 1.

Mischief46 · July 2014

well, my PS just called and said she had talked to the gyn oncologist and his girl said the notes from my meeting with him showed he wasn't really on board and since he is out of the country until Aug. they wouldn't coordinate a surgery date. He told me three times at least that if I choose to have them out he would be happy to do it. But that he wouldn't say I NEEDed them out but for piece of mind he was on board. The PS told the lady I knew an awful lot about the surgery and when he could do it for him not to have discussed it as a possibility with me..I wasn't completely on board yet but I was definitely leaning that way. So frustrating...

My BS wouldn't do it at time of BMX either, she said it was just to much at one time. But said doing at the exchange surgery was possible.

I just wonder since I am already menopausal if I will notice the side effects as much as someone who hasn't started yet...I have plenty of hot flashes now.

surfette · July 2014

@Mischief I got hot flashes when I first went on Tamoxifen but they went away. Now after the surgery they have come back tenfold but I am hoping they will dissipate like before.

awnie1301 · July 2014

Hi, I don't post much but thought I would chime in on this one. I just had my ovaries and tubes taken out today. I am home and recovering. I am 44 years old. I finished chemo Jan 30th and finished rads April 19th. I started Tamoxifen about 2 weeks after finishing rads. My Onc and Rad Onc would have started them during rads but they both really felt there was no need. I started Tamoxifen with Lupron injection and have now had them both for 3 months...I wanted to kind of feel what it would be like. I have wicked hot flashes and I take Effexor for both flashes (don't think it works) and depression. I think the next while might be a tough bit but my girlfriend who had hers out (for a different reason) said the symptoms lessen over about 2 years.

AryaS · September 2014

I just had my OBGYN get ready to schedule my ovary and tube removal. I have a complex cyst on my right ovary that is causing some cramping. I am 42 and post menopausal since chemo. My FSH is 60. I am on tamoxifen but am not tolerating it very well.

Will my menopause side effects increase once my ovaries are gone or is what I've been feeling (hot flashes and such) all there is? Any post menopausal women who then had ovaries out care to share your experience?

I was set on getting this done but after reading this thread am having second thoughts. My tumor was high er+ and pr+.

surfette · September 2014

The thing is, you're going to get those symptoms anyway at a certain age. This way you're just getting them earlier. That's the way I see it. They should eventually abate. And all your friends will be having the symptoms but you're over it.

Brip1geneticmutation · January 2015

I tested positive for a new gene mutation called BRIP1 in November. As you may know, it carries a elevated risk for ovarian and breast cancer. It is a fairly new gene mutation and there are not clear cut guidelines on how patients should proceed.

So, here's what has happened so far:

My mom told me she had the BRIP1 gene mutation and when I went to my OBGYN in Nov. he recommended that I see a genetic counselor. So, we mapped my family cancer history (high in ovarian and breast, especially on my maternal side) and she ran the genetic panel. So, like I said, I have this BRIP1 mutation.

Next- the genetic counselors recommended I see a gynecological oncologist. I did that, and she was very informative and we discussed options.

She said she could do a laproscopic surgery and remove the ovaries, but also mentioned the possibility of taking out my uterus as well. She said that way, I may be able to take some low dosages of hormones to help with the instant menopause onset (hormones are still very controversial too). She said this can be a lifestyle change and can cause problems for some people. A friend told me her surgical menopause was horrific and that she still deals with the side effects on a daily basis. There is no screening for ovarian cancer and it is a silent killer and often when found it is too late. I don't want that, but also have a history of depression and those side effects scare me.

In the meantime, Dr.set me up with a transvaginal ultrasound to check on things until I make any decisions about my ovaries and any possible surgery.

The genetic con. also recommended that I see a breast oncologist, so I did that too. I met Dr. Oncologist for breasts and she set me up with a breast MRI on this Friday, and I had a 3d Mammogram last week, she wants to do the MRI this week bc I have dense tissue.

Dr. Breast Oncologist mapped out some plans of action that I can take- ranging from least aggressive to most aggressive. Of course, she said I can get 3d mammos twice a year, or I can see a medical oncologist and take a preventative med... I think tomoxifin or something like that??? My friend at work took tomoxifin and it caused severe blood clotting issues, so I am just trying to learn as much as I can.

The breast oncologist also looked at my breasts and gave me a few options if I wanted to do a double mastectomy. She referred me to plastic surgeon to discuss those options for different types of mastectomies.

So, I am definitely in the information gathering stage and am seeking as much info as I can find.

Any insights would be helpful and appreciated. Thank you. I'm 36.

Should I get a prophylactic oophorectomy?

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