Oophorectomy at 40?

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abw
abw Member Posts: 6
edited June 2014 in Genetic Testing

Hi everyone,



I am BRCA2 + and have a doc appt to discuss surgery. Anyone out there in there 40's who had this done? I am very concerned about immediate side effects and wanted to reach out here.



Thanks, Angie

Comments

  • mebmarj
    mebmarj Member Posts: 380
    edited June 2011

    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.

  • abw
    abw Member Posts: 6
    edited June 2011

    Thanks mebmarj for posting. How long was your recovery period? I too had a bmx in feb. and have just finished my last round of chemo(yay). I am working part time at home and hoping not to take too many days off. I work as a software developer so not much running around.

  • Lisa65inNY
    Lisa65inNY Member Posts: 70
    edited June 2011

    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

  • abw
    abw Member Posts: 6
    edited June 2011

    Lisa65inNY,

    My surgery is also scheduled July 5 so I am starting to feel some anxiety over it. I recall the FORCE website some time ago but didn't review thoroughly; I will do that. Thanks..

    Angie

  • brca2la
    brca2la Member Posts: 1
    edited June 2011

    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. 

  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2011

    the recovery depends on whether your surgery is open abdominal (about 6 weeks) or laproscopic (about 2 to 3 weeks). The latter is a quicker recovery, less hospital time. and less painful overall. I had a TAH/BSO (not by choice-----large ruptured ovarian cysts)----so was out of work for 8 weeks, but my job requires a lot of lifting. (PT)  The immediate surgical menopause was rough for me, but I think it was because I was recovering from major abdominal surgery at the same time. I've known people who have had the same surgery, done laproscopically and  recovered much quicker than me and didn't have the same SEs. The first year was hard---the hot flashes and night sweats, insomnia, and being very emotional overall---it did level off after that, but I do still have some hot flashes, insomnia and achiness 6 years later.

    Anne

  • redheadace1
    redheadace1 Member Posts: 212
    edited June 2011

    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.

  • mebmarj
    mebmarj Member Posts: 380
    edited June 2011

    Yes, you do have surgical choices vag hyst, lap assisted or abdominal. I chose abdominal because I wanted to be sure they could see everything they were getting. When I was opened up, I had stage three endometriosis and getting my left ovary out was tricky. path came back with no evidence of any cancer, even though the right ovary had been hot on the pet scan.

    People don't realize how much you rely on those abdominal muscles. Best to learn that using your legs, butt and arms to move is best, getting out of bed, chairs, etc.. No lifting or driving til dr says ok. Make sure to take pain meds when needed and eat well to prevent constipation. I felt pretty good at week 3 postop physically. Emotionally good two weeks out. Hot flashes, insomnia are there but manageable. Had bone density scan and told I am normal. Was told try to resume normal activities the day before I started chemo, ha! Feel free to PM me if you want.

    Wishing you well -m

  • Lisa65inNY
    Lisa65inNY Member Posts: 70
    edited June 2011

    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!

  • Carlatap
    Carlatap Member Posts: 96
    edited June 2011

    Hi Angie,  it makes me feel so sad to know you have to make this kind of decision at such a young age. I am 53, BRCA2+, and had to make the same decision in 09. I had the oomph done first. It was a simple procedure, quick recovery time. I had trouble with the hot flashes, but my onc. put me on a anti depressant called citalapram (generic). I take one every night. It has really helped. The hot flashes come but they are not as often and not as intense. -makes them much more do-able. I sleep with one of those tower fans right by my bed side. If I wake up with a hot flash, I lean over and put the fan on facing my face. I also took Ambien for a while, not to fall asleep, but to stay asleep and not wake up as often. Hopefully this is helpful info.

    Take one day at a time and try not to let your mind go to the worse case scenario. Take a couple of steps back and try to think of the future more objectively. This really helps me.

    I'll be thinking and praying for you,

    Carla 

  • tracie23
    tracie23 Member Posts: 598
    edited June 2011

    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.

  • kerri72
    kerri72 Member Posts: 69
    edited June 2011

    Hi Angie, As long as your pelvic ultrasound doesn't show anything suspicious, you should be eligible to have surgery laparoscopically, which will make your recovery so much easier and faster.

    I am 38 years old and also BRCA2+. I had a laparoscopic salpingo-ooph last November at the same time as my bilateral mastectomy. I had no pain from the procedure, and since my ovaries were already shut down from chemo, I had no new side effects. My hot flashes have been very manageable (a few a day). Did your chemo cause you any menopausal symptoms? If so, the side effects of the ooph may not be as dramatic as they would otherwise.

    I was afraid I would feel like a different person after losing my ovaries, and am so relieved that I really do feel the same. Yes, it's a loss. But I'm relieved that my risk of ovarian cancer is almost zero now and that I am doing everything in my power to starve any remaining breast cancer cells of estrogen. For me, the peace of mind outweighs the bother of hot flashes and mild insomnia.

    I wish you the best with your surgery - I really hope yours goes as easily as mine did. Sorry I can't report on very long-term effects, but I'm hoping for the best.

     Kerri

  • elmcity69
    elmcity69 Member Posts: 998
    edited June 2011

    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.

  • abw
    abw Member Posts: 6
    edited June 2011

    Thank you all so much for your posts! This is my first time posting after lurking around for a few months. ;) I have a pre-surgery appt with gyn onc wed. and will discuss my concerns although deep down I know the surgery is inevitable for me. The thought of obsessing over another shoe dropping seems worse than actually going for it. I do feel much better reading all of your replies as I realize I am not alone.

    elmcity69: good to hear you were back on your feet and doing yoga in such a short time. I am an avid runner and was hoping that the SEs wouldn't hinder me in the long run.

    kerri72: I have had menopausal symptoms during chemo, mainly at night.. Some pretty intense hot sweats so maybe I'm already on my way.



  • LoriSJ
    LoriSJ Member Posts: 5
    edited June 2011

    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.  :) 

  • faithfulheart
    faithfulheart Member Posts: 544
    edited June 2011

    I'm with elmcity all the way!!!  How are you elm sweeti?

    I feel exactly the same, I had my ovaries removed a year ago this weekend, I was 42. Yes I was scared!  I do not have the gene, However highly er pos and 10 pos nodes, it was the right choice for me. I don't deal with hot flashes much at all, I would have to agree with Elm on the DRYNESS

    down yonder, however lots of stuff to help that!  Here's the deal . I am 43 year's old, yes this procedure can have it's side effects, I do tend to cry alot, oh well!!!!!!!!!!!!  If I am still here to raise my 10yr old girl and 6 year old boy, see them graduate, see my grandchildren, and grow old with my dh, it was totally worth it!!!  It's just not worth the worry to leave them in, especially if you have the gene. This is just my opinion, but I sleep much better at night knowing I had those est. time bombs out!!!!!!!!!!!!!!!!  Oh and go figure I have lost 40 ponds since my surgery, and weigh almost what I did when I got married!! Wierd huh? Listen everybody is different, we all respond in different ways, do what your heart is telling you to do , and it will be ok. You are in my prayer's!!!!!!!!!!

    Hugssssssssssssssss

    Faithful

  • mks16
    mks16 Member Posts: 415
    edited June 2011

    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.

  • Lisa65inNY
    Lisa65inNY Member Posts: 70
    edited June 2011

    Hi mks16,

    My oophorectomy is scheduled for July 1, and I am going - kicking and screaming!   Like you, I was undecided about uterus but from the information I've gathered on the FORCE website, if it comes down to needing HRT, they advise estrogen only but that can only be done if I lose my uterus. (I will be keeping my cervix, though.)  I believe this is because if I keep my uterus and took HRT (which most MDs are against) there would be increased risk of both b/c and uterine cancer.  I don't know if or how any of this applies if someone already has a b/c diagnosis.  

    It is definitely a difficult decision.  I'm still terribly scared of the side effects from removing my ovaries but I know that removing them will decrease my breast cancer risk so I guess I need to keep reminding myself of that.  Since I am 46 and done with childbearing, I see no reason for me to keep my uterus.  There are some who feel uterus plays a role in contractions during the "Big O" and there are others who are just fine, if not better, without it.  

    Good luck making your decision!

  • kerri72
    kerri72 Member Posts: 69
    edited June 2011

    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.

  • Latte
    Latte Member Posts: 1,072
    edited June 2011

    i'm 40 and had a laparoscopic ooph 3 months ago. my surgeon said the recovery time would be 2-3 weeks, and I probably needed 10-14 days in the end taking it easy (I have a 3 yr old who kept inadvertently hurting me, and one of the incisions didn't heal as quickly as the others).

    i'm also on tamoxifen, so it's hard for me to know which SEs are from the tamox and which are from the ooph... 

  • Sullivan
    Sullivan Member Posts: 9
    edited July 2011

    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. 

  • kittycat
    kittycat Member Posts: 2,144
    edited July 2011

    I'm 41 and have had bc twice (triple negative). My obgyn has been monitoring my ovaries. I had a cyst on the left side. And I'm BRCA1+. I had a total laproscopic hyst and ooph yesterday. Still in the hospital. I'm feeling crampy, but overall ok. I guess after a bmx, chemo and rads, this isn't so bad. I'm not going to be superwoman this time and work. I'm taking the time off and resting. I get to leave the hospital tonight! Yay! :)

  • LisaLisaLisa
    LisaLisaLisa Member Posts: 18
    edited August 2011

    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

  • stlcardsfan
    stlcardsfan Member Posts: 466
    edited August 2011

    LisaLisaLisa - I actually did BMX with immediate reconstruction tissue expander's and ooph same day. The ooph was done laproscopically through my belly button. total surgery about 6 hours and I had three separate doctors.

    I spent one night in the hospital - standard protocol - and home the next day.

    My bmx and 4 drains hurt more that the ooph did. I was on pain meds for about 2 weeks, and out of work 6 weeks total - mainly because of the bmx.

    I was glad to get it all done at once.

    I am BRCA 2+ and was 43 at time of surgery.

  • LisaLisaLisa
    LisaLisaLisa Member Posts: 18
    edited August 2011

    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

  • stlcardsfan
    stlcardsfan Member Posts: 466
    edited August 2011

    LisaLisaLisa - yes I had three surgeons - breast oncologist who did the removal, plastic surgeon who did the expander placement and the lovely drains, and gynecological oncologist who did the ooph.

    The place I went is well known in  St. Louis and affiliated with a medical school. All of my doctors were in the same building and all worked together to coordinate by surgeries. 

    I had my first meeting in April with two of the three, and met with the gyn oncologist in early May for my 6/21/10 surgery.

    I am happy with my recon results and look very similar to what I did before. My ooph incisions are not even noticeable. I go in the end of August for nips and then should be done! 

    Best of luck with your surgeries! 

  • cp418
    cp418 Member Posts: 7,079
    edited August 2011

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

    Single-incision bilateral laparoscopic oophorectomy

  • veggiebab
    veggiebab Member Posts: 3
    edited September 2011

    Hi I had my ooph in my 40's before I knew I was BRCA2 it was done because I had endometriosis.

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