Remove ovaries to prevent breast cancer recurrence?

Jest

Just celebrated my birthday and am 39 this year, married, no children. Dx with stage 2A breast cancer last April, had double mastectomy (without reconstruction) and chemo treatment in the same year, and started taking tamoxifen last sep. In my regular visits to the doctors, they advised that the best prevention of breast cancer recurrence for younger patients is to remove the ovaries, main culprit for producing estrogens (btw, mine is hormone receptive). Every time when I was about to feel well and normal, came this advice from doctor which will set me thinking and worrying again of a recurrence. I am rather tempted to remove my ovaries but this will put me right into menopause, where I know i would be facing a new set of problems such as heart problem, bone mass loss etc. Has anyone been faced with the same dilemma and could I have some advice from you, please? Thanks!

Meadow

Jest, I am glad you have found this website, it has tons of info and the nicest people. I have a friend here named Allydp, she is young like you and has had the decisions you are facing. I will PM her (private message) so she will see it, and have her connect with you. She is wonderful. Hopefully others will respond soon too. Hugs to you

debiann

I was 46 when I had a hysterectomy due to fibroids. My gyno left it up to me if I wanted the ovaries out, so fearing menopause I kept them.I wish I would have known then what I know now about estrogen and bc because I'd have them out  in a heartbeat. My natural menopause was awful and I did at times have very high estrogen levels. Being post menopausal was not bad, but the years it took to get there were hell and the cause of my cancer, I believe. I think a "forced" menopause would have been much faster and easier.

Jest

Hi Meadow, that's wonderful and thank you for responding to my query and connecting me with your friend, Allydp. Really appreciate it very much.

Hi Debiann, thank you too.. i am grateful for the sharing. Sorry to learn about the challenges encountered by you during menopause and I really hope you are doing very well now. 

Yeah, am seriously considering this option and may act on it very soon, either this or next year. Am not a very positive person so really need to get this out of my life asap. Thanks again!

rozem

I was diagnosed young as well (42) forced menopause has been anything but fast and easy for me - 3.5 years later and I am still suffering the wrath of no hormones - tsunami like hot flashes/bone and joint pain/ brain fog/fatigue.  I think it is very different for everyone, Ive spoken to women who have are in the middle of natural menopause and have barely any issues and others that suffer more (like debbian)  Speak to your doctors but mine are big on using Lupron or Zoladex shots to shut down the ovaries first, it gives you the opportunity to "test drive" menopause and see how you do.  Its just as effective as removing them but it is reversible if you absolutely cant tolerate the SE's. If you do ok you can always have your ovaries removed later. 

Jest

Hi Rozem,

Thanks for sharing. Btw, do you mean you had your ovaries removed following advice from the doctors while on hormonal therapy? Hope to get more information on the surgery as well, as in if it would be a major surgery, duration of the sugery and etc.

Currently, i am getting hot flushes from consuming tamoxifen. Hope menopause wouldn't cause hair loss? I had very small breasts and frankly, losing my hair was a few times more traumatic than losing my breasts and i really don't wish to go through thinning hair or hair lost ever again.

pajim

Jest, Rozem is right.  You do not have to have your ovaries removed.  You can take Lupron or Zoladex shots which will have the same effect.  That would be a way to see if you can tolerate menopause.

The evidence for whether or not to suppress the ovaries says it makes a small difference, not a large one.  It's the SOFT trial, published in the New England Journal of Medicine, 2015.

http://www.nejm.org/doi/full/10.1056/NEJMoa1412379

Abstract:

Background

Suppression of ovarian estrogen production reduces the recurrence of hormone-receptor–positive early breast cancer in premenopausal women, but its value when added to tamoxifen is uncertain.

Full Text of Background...

Methods

We randomly assigned 3066 premenopausal women, stratified according to prior receipt or nonreceipt of chemotherapy, to receive 5 years of tamoxifen, tamoxifen plus ovarian suppression, or exemestane plus ovarian suppression. The primary analysis tested the hypothesis that tamoxifen plus ovarian suppression would improve disease-free survival, as compared with tamoxifen alone. In the primary analysis, 46.7% of the patients had not received chemotherapy previously, and 53.3% had received chemotherapy and remained premenopausal.

Full Text of Methods...

Results

After a median follow-up of 67 months, the estimated disease-free survival rate at 5 years was 86.6% in the tamoxifen–ovarian suppression group and 84.7% in the tamoxifen group (hazard ratio for disease recurrence, second invasive cancer, or death, 0.83; 95% confidence interval [CI], 0.66 to 1.04; P=0.10). Multivariable allowance for prognostic factors suggested a greater treatment effect with tamoxifen plus ovarian suppression than with tamoxifen alone (hazard ratio, 0.78; 95% CI, 0.62 to 0.98). Most recurrences occurred in patients who had received prior chemotherapy, among whom the rate of freedom from breast cancer at 5 years was 82.5% in the tamoxifen–ovarian suppression group and 78.0% in the tamoxifen group (hazard ratio for recurrence, 0.78; 95% CI, 0.60 to 1.02). At 5 years, the rate of freedom from breast cancer was 85.7% in the exemestane–ovarian suppression group (hazard ratio for recurrence vs. tamoxifen, 0.65; 95% CI, 0.49 to 0.87).

Full Text of Results...

Conclusions

Adding ovarian suppression to tamoxifen did not provide a significant benefit in the overall study population. However, for women who were at sufficient risk for recurrence to warrant adjuvant chemotherapy and who remained premenopausal, the addition of ovarian suppression improved disease outcomes. Further improvement was seen with the use of exemestane plus ovarian suppression. (Funded by Pfizer and others; SOFT ClinicalTrials.gov number, NCT00066690.)

 

rozem

Jest Im on Lupron shots to shut down my ovaries, I have been since my period came back 1 year post chemo.  I still have my ovaries and not intending giving them up any time soon!

GrammyR

Jest- I was 58 so thought I was already in menopause but realize now I was not fully as the hot flashes came on so bad after my mastectomy.I did not have ovaries removed but wish I had as my BC came back 7 years later. I was not offered that surgery option back then. Other than hot flashes have not had the menopause issues you mention. I lost my sex drive but at my age who cares-ha. So sorry you are having to make these choices now. Hugs coming your way.

Jest

Dear All,

Thanks for the sharing.. may i know if Lupron shot is painful and how frequent do you receive it? In fact, i thought Tam pills is to suppress the ovaries. From the article, though it mentioned the insignificant differences between receiving Tam pill and Tam + ovarian suppression, the latter does increase survival.

Also, wondering why would recurrence be higher in the group who received chemo? Thought chemo was to reduce recurrence risk? Am getting rather confused now.. haha.. maybe i did not comprehend the article entirely

GrammyR

Jest- that's what I thought too when they talked me in to chemo. It depends on what stage you are at on diagnois .Mine was later so perhaps if caught earlier. Regardless I am still here at 9 years post chemo. Hormone blocking pills don't block all the hormones but slow things down.

Nan54

I think that the women who were selected to receive chemo in this trial were at higher risk for recurrence to begin with (they were using Oncotype DX at this point to determine chemo recommendations, etc). So, chemo probably did reduce the recurrence rate for this group, but the rate was still ultimately higher than in the other group (lower risk, no chemo recommended)...

ICanDoThis

The SOFT trials recommend temporary suppression of ovarian function as being better than just tamoxifen.

Younger women are in such a conundrum here -- because their cancer is more likely to be more aggressive and they have many more years to live than older women.
BUT, and it's a big but, early menopause is linked to early onset of osteoporosis and heart disease.

Tough choice

scvmom65

Hi Jest,

I was 44 when I got my dx and was also put on Tamoxifen after my double masectomy. I am also er+ PR+. I will be honest, I was forced off Tamoxifen due to having abdominal pain around the 2 year mark that turned out to be over 20 ovarian cysts and then told I had to have my ovaries removed now due to the cysts. What I wanted to share with you was that I felt BETTER after my ovaries were removed comparied to when I was on Tamoxifen. A lot of the symptoms I had on Tamox that I contributed to menopause must have been a side effect of the drug. After my surgery my joint pain and brain fog massively improved and I lost 10 of the 13 lbs I gained even while being careful what I eat and exercising 1 hr 6 days a week.

Hope this helps!

Anna

munlyn

Hello Jest! I was diagnosed almost two years ago at the age of 36. I was terrified of having my ovaries out! My onc tested the level of estrogen in my blood and it was 910. I think normal for my age is under 200! So I relented and the surgery was surprisingly easy. I had minimal pain and I was back to my normal work routine in two weeks. Emotionally it has taken a 6 weeks to level out. I had 2-3 days at the beginning where I had crying fits. I was weepy and sad for 3 wks. Now I feel pretty normal. I have had bone pain since starting anastrozole, but it has been manageable. I do get more tired than I used to and I am having trouble staying asleep. I also have noticed memory problems and if course major hot flashes! Overall I am glad I did it and am looking fofirward to the future. Best of luck to you!