Oophorectomy at 40?

Hi abw,

I am not brca+, however I can help with some information.

My BC diagnosis was in early march. Had BMX a few weeks later. Because of a pet scan I was advised to have an abdominal hyst with ovaries removed too.

I was in the hospital for two days. Lower belly hurt quite a bit. Don't know which way you're going but onto the immediate menopause....

Within a couple days I was having hot flashes. It was a very emotional time and I recommend you discuss something to help with the transition/loss. There are many meds, I only was on one for a couple weeks. Now, I'm doing well. You'll find there many situations, foods or parts of the day that trigger the flashes. Best wishes on your decisions and recovery process.

Hi abw,

I am 46 and have my oophorectomy scheduled for July 1st; however, I am considering postponing it a few more weeks for fear of the unknown (surgical menopause).  I am also BRCA 2 positive and looking for anyone that has had a positive outcome with this procedure and the long term effects (hot flashes, libido, etc.)  

If you haven't already, you may want to check out the FORCE website - this organization is for BRCA women and has tons of really good information, resources and support. 

Warm regards,

Lisa

Hi ABW-

 I am now 42, and was diagnosed in 2009 at 40 with Stage 3 breast cancer and brca2.  I had my breasts and ovaries removed, ovaries have been out for a little over a year now and it has been a roller coaster.  It's hard to determine which side effects it has, I am on Fermara for 4 more years.  I have gained 20 pounds, have always been very active, but I also had a latflap as my tumor was so large on my right side, so I have some limitations there.  I can tell you about 6 months in I was eating in the middle of the night which made me gain the weight, I would wake up on my 3rd hot flash of the night and just eat, it was weird.  I've gotten that under control, but the hormone deficiency at such a "young" age is really tough.  I have regrets, but it's easy to say that when I have little to no risk of recurrence because everything is gone and I was E and P positive, so prognosis is good.  The thought of having to go in to have an ultrasound every three months was scary so I did it.  Also because I was Stage 3 it gave me higher chances as I had 18+ lymph nodes.  I am happy to talk to you about anything privately if you like.  I think educating yourself on the side effects and being aware of what can happen is a great first step.

 The hot flashes are positively awful, I cant seem to get any control over them, black cohosh, diet - the only thing that helps if I dont eat too much or too often.  When I am hungry I have less intense hot flashes.  I have not worn boots or sweaters since cancer. 

Abw--I had to have a TAH and oophorectomy after my DCIS treatment because the Tamoxifen made my fibroids grow rapidly. The recovery from the TAH is lengthy. I just wanted to respond to your post because I feel as though I was inadequately informed about the consequences of my oophorectomy. I didn't have a choice about the TAH, but I think the oophorectomy was a big mistake. Of course, it's reassuring knowing that I no longer have to worry about ovarian cancer. But the surgical menopause has been pretty horrific--worse than the cancer, in fact. Think very carefully about the decision. My loss of libido has had huge repercussions in my life, and I ended a 2 1/2 year relationship a few weeks ago because of it. There were other factors, but I feel as though I became a completely different person after losing all that estrogen. And I can't take hormones. The hot flashes are really rough, especially for the first year or two, and there are a lot of physical changes (weight gain, aching joints).

 Of course, your risk level is probably higher with BRCA, so the positives may outweigh the negatives. But in my case, I have some days where I feel like giving up my ovaries was one of the worst decisions I ever made.

Best of luck to you whatever you decide to do.

c 

Hi,

My reason for scheduling oophorectomy (although terrified) is:

My sister, who is 4 years older than me, was diagnosed w/stage IV breast cancer at age 47.  She passed away at age 48.  She was BRCA 2 and her original diagnosis at age 44 of DCIS was "caught early".   When she found out her BRCA results, she opted for double mastectomy and ovary removal for exra precaution.  Unfortunately when she had her BMX, they discovered IDC in 6/10 nodes that never showed up on mammogram/MRI.  She was diagnosed stage IIIc at time of surgery and stage IV six months later.

I just learned of my BRCA status in February at age 45.  I just had my mammogram and MRI a few weeks ago and do not (yet) have a breast cancer diagnosis.  As terrified as I am and as easily as it is to forego this procedure, I feel that I've skated under the radar long enough. I know I am not my sister (my mother is 80, had a b/c diagnosis at 44 and is fine today) but it just seems like it's the right thing to do as my sister's cancer (and most BRCA 2 cancers) tend to be estrogen positive.  For personal reasons, I don't want to take Tamoxifen.  I have heard many more negative experiences with tamox than the ovary removal.  

I also found a lot of research on the FORCE website where estrogen only HRT does not increase b/c risk if taken for short amt of time and no prior b/c diagnosis.   

All this being said, I am still extremely panicked about what to do and would feel more at peace if anyone else is in a similar situation and had a positive experience with the ooph.

Thanks!  Hugs to all!

Hi there ,I am 41 and BRCA 2+ I had all of my procedures to prevent cancer from coming back. since I had the surgery I feel like a weight has been lifted off my shoulders I can't explain it..... I had the ooph on June 2nd and I felt fine with in a day or two just a little bit of bloating. I am almost 2 weeks out and I have not had to many hot flashes yet I did have a crying spell yesterday over nothing and today I feel like I could have a moment or two but so far so good. My mother who is here helping me keeps reminding me it's ok to cry I have had one of the worst years of my life. I had my double mast. last June with no recon so on June 2nd as well I had the TE put in I am feeling pretty good.

I did my ooph last October; simple, laparoscopic. Home that day, mild discomfort for 2days, then back to normal (yoga, work, etc). Started on Arimidex right away.(BRCA2+, maternal aunt had ovarian cancer, mom and 2 aunts with breast).

I've noticed my joints are creakier, and some hot flushing, only at night. Sorry for the blunt information: but vaginal dryness is the worst side effect. Vitamin E suppositories are my friend (and my husband's for sure - lol).

I already have two children (ages 13 and 10), so the childbearing issue didn't exist. I'm happy I did it, despite the side effects, given the difficulty with ovarian cancer detection. In fact, my onc was more insistent on scheduling the ooph before my preventive MX - and he's pretty easygoing!

Check out Yahoo! News from the last week. They featured an article stating that ovarian cancer screening is usually insufficient to catch cancer in its earliest stages.

I say go for it. We have enough to worry about.

Hi Angie,

Thanks for posting this question, because I've been struggling with the same one.  I am BRCA2+ and turning 40 in a few weeks, but am leaning toward not having my ovaries removed.  I just started chemo, so may change my mind if it kicks me into menopause early.  

For me, what it comes down to, is that I can't imagine having such a drastic surgery with scary side effects because of an 18 - 20% chance of getting ovarian cancer.  The flip side of that statistic is that I have a 80 - 82% chance of NOT getting ovarian cancer.  Women in my family have died of (and one survived) breast cancer, not ovarian cancer.  While I seem to have a different perspective than many/most responders, reading them was EXACTLY what I needed right now.   

Hi,

While I do not yet know of my BRCA status, I am already leaning towards oophorectomy regardless of the results. I am 37, and was diagnosed with BC only a few months after my younger sister (age 32) so the genetic connection  is clear to me.

What I haven't yet made up my mind on is whether to go with complete hysterectomy with ooph, or just oophorectomy. I am unclear as to what the purpose of the uterus is (other than to provide abdominal support) after ovaries have been removed. Also, there's the risk of uterine cancer after years of hormonal therapy and so on... I do realize though that at some point I would need to stop removing spare parts for the fear of what future brings, its just hard to know when that point is.

LoriSJ, when my onc recommended I remove my ovaries, he said it was partly for prevention of ovarian cancer, but mostly to prevent a recurrence of my ER+ breast cancer. Although I guess if you're committed to doing tamoxifen/an AI, maybe it won't matter so much for you. I know it's a crappy decision to have to make, either way.

Just an update.  Had my lapro ooph on Wednesday, and I'm still in a ton of pain.  The incision hurts like hell.  Yesterday was the worst, because of the air left in my abdominal cavity, the constipation, and the cramps from the laxative coupled with the general pain at the site.  I've had to have someone take care of my dogs, drive me to the store, the whole bit.  I'm feeling much better today, but disappointed that my doctor downplayed this so much.  She told me I'd be walking the beach the following morning.  Why do they do that??

I have searched for info on recovery times and it varies a lot.  Let me reiterate, I went home from the hospital the day I had my BMX, got on a plane and flew to the Oprah show 5 days later, drains and all!  I am not a wuss.  So, when I tell you this is as miserable as a BMX, I mean it.  Make sure to have help for at least 4-7 days, you can always send them home if you don't need it. I haven't wanted people around at all.  Don't want to entertain, make people smile, and want to let the tears flow when they come, and they are a comin'.  What an emotional rollercoaster.

 Good luck with all of it.  We all know, it all pretty much sucks...all of these things happening and life changing decisions every day, just to stay alive.  There are many moments when I still can't believe this is my life. 

Putting this out there for any advise, confirmation and support that is offered.....I have DCIS high grade, ER+/PR+, BRCA2+.  Laparoscopic ooph scheduled for 8/23 and BMX scheduled for 9/9.  I wanted to get all of my surgery overwith asap so that I can start getting on with my life.  Now I am thinking about what the recovery from the BMX is going to be like while going through menopause (hotflashes, etc).  Am I making things harder on myself than it needs to be.....should I wait until after the BMX to do the ooph?  My gut was to get it over with but now I am having my doubts. 

Also, to further complicate things, my second opinion is scheduled for 8/25 (it was originally supposed to be on 8/30 and got moved), 3 hour drive to get there.  I have my mom and my sister to be there with me, to drive, to help.....I am worried that it may not be a good idea to go or I should cancel the ooph.   

I must sound crazy.....I am so tired of decisions.......just want to get it all over with.....

Lisa

Hi Cards Fan,

I would really like to get it all done at once.  Glad to hear that it is done that way.  I can contact my Breast Care Coordinator to see if there is any way to combine the surgeries.  So you had a general surgeon, plastic surgeon and gyn surgeon?  They told me it is just too hard to coordinate 3 schedules.  Maybe I should push them a little harder. 

Hoping you are fully recovered by this time.  Are you happy with the recon results?

 Thanks,

Lisa

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3002015/

Single-incision bilateral laparoscopic oophorectomy