Ovaries removed. Yes or No

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reen
reen Member Posts: 164
edited June 2014 in IDC (Invasive Ductal Carcinoma)

I'm struggling with the idea of having my ovaries removed.  My oncologist says I need to do it.  My GYN says the surgery is invasive and maybe not necessary.  Anyone else have to make this choice?  I looked for this topic and couldn't find one.  I'm sure there is one somewhere on this board.  So if someone can point me in the right direction I'd appreciate it.

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  • ShellyJo
    ShellyJo Member Posts: 132
    edited May 2009

    My Paternal aunt died in her 40's of ovarian cancer. Although i tested negative for the BRCA genes my onc recommends removal because the screening process for ovarian cancer is not good. I am already in chemopause so I am going to do it. If they go in thru your belly button it isnt as invasive.

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  • Alaina
    Alaina Member Posts: 461
    edited May 2009

    Here is a posting for an article that says removing them might do more harm than good.

    http://community.breastcancer.org/forum/78/topic/732949?page=1#idx_21

    I'm BRCA negative but also toying with the idea because I'm ER+, but reading that article gave me food for thought. 

    If the link doesn't work, do a SEARCH for the title "Planning on Oopherectomy(ovary removal)...think again" started by LEXISLOVE on April 22.

    The link to the article itself is http://www.news-medical.net/?id=48588

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  • canuckintx
    canuckintx Member Posts: 40
    edited May 2009

    It was recently discovered that I have a 6 cm cyst on my right ovary.  I have been on tamoxifen since September 2008.  I have had 2 ultrasounds 3 months apart to see if the cyst changes or completely disappears.  Unfortunately, the cyst is still there...same size.  My gyne ordered the CA125 test and it came back elevated (35 is the norm, mine was 102).  She has referred me to a gynecological oncologist at MD Anderson.  I have my first appointment on Friday.  I suspect that I will be advised to have my ovaries removed - the only way to know for sure that the cyst isn't malignant.

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  • pip57
    pip57 Member Posts: 12,401
    edited May 2009

    My onc felt that I would do better on arimidex and needed an ooph to put me in menopause.  My gyn did not want to do it until he received a letter from the onc explaining the reasoning.  Then he was on board.  

    I think you have to be careful when reading any study.  Check out the comments under the "planning on oopherectomy..." and you will see that at lot of us question the accuracy of the stated conclusion.  

    You are stage 1 but have + nodes so I can understand why your decision would be more difficult than it was for me.  Ask HOW er/pr + you are.  If it is a low % then perhaps it would not be as helpful to you.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2009

    canuck----I had a very similar situation 4 years ago. I had been having vague abdominal discomfort for several months--docs brushed it off, saying it was "inconsistent and non-specific"; until one day it became much more intense--went to pcp who did blood tests and ordered a CT scan. (it became very severe that night--should've gone to the ER, but kept thinking it was either a kidney stone or gallbladder attack that should pass). Next day the pain was gone (apparently I had large ovarian cysts which ruptured which I wasn't even aware of); the CT scan the next day showed a large ovarian mass. My gyn then did a CA-125 blood test and TVUS--left ovarian cyst was 5.5 cm--he was concerned about ovarian cancer due to my LCIS and family history of bc (mom), but also said most ovarian cysts are benign and shrink down on their own, so he wanted to wait 2 weeks and redo the TVUS. Unfortunately, my cysts kept growing--nearly to 8 cm. My CA-125 was good--only 12--but he said that test is unreliable, especially in premenoapusal women--it can be elevated for many other reasons other than ovarian cancer (good thing to keep in mind!)--but the only way to find out for sure was to remove the ovary. I was going to have him try to save the other ovary (to avoid immediate surgical menopause), but I decided to have him take everything (uterus, cervix,tubes, ovaries) as I didn't want to ever go thru this again. (25% chance of having more ovarian cysts). It was  a good decision, as multiple cysts were found on the other ovary as well and in the tubes too. (dermoid as well as functional cysts). I had to have it done abdominally as the cysts were too large for LAVH surgery. My gyn said tamoxifen didn't cause the cysts---if I had to do it over again, I would've stopped the tamox temporarily to see if the cysts would've decreased in size (if they had, I might've been able to avoid surgery, who knows).

    Anne

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  • helena67
    helena67 Member Posts: 357
    edited May 2009

    Hi,

    You don't really explain why your oncologist thinks you should have your ovaries removed. If you are the carrier of a so-called BRCA1 or BRCA2 mutation, you have highly increased risk for ovarian cancer. Many of these women have their ovaries removed to prevent that from happening, though not all do. Some choose to be carefully followed and screened. However, such screening is not 100% reliable.

    In any case, if you do NOT have this mutation (most patients with breast cancer don't), then maybe your oncologist wants you to be postmenopausal so that he or she can prescribe you an aromatase inhibitor (which cannot be given to premenopausal women). But, you don't necessarily have to remove your ovaries to achieve that. There are also injections that you can take that reversibly shut your ovaries down. Also, you can decide to take tamoxifen, which is still standard of care in premenopausal women.

    Also, IF you decide to remove your ovaries, it does not necessarily mean that you need to remove your uterus (=hysterectomy). You can choose to only remove your ovaries with laparoscopic surgery. That is a less invasive procedure and many women go home the same day or within a day. The scars are tiny.

    So, before you decide you should probably dig for some more and better information. If you are not given answers to your questions, seek a second opinion.

    Best wishes.

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  • BMD
    BMD Member Posts: 1,492
    edited May 2009

    I had mine removed. Onc made the suggestion because of ER+ but I was BRCA neg. I decided to do it because I did not want to take any chances. At 46 it has been hard to be in menopause but better than having ovarian cancer. I have 2 friends with it and they are both on their second round with chemo and not doing well.

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  • konakat
    konakat Member Posts: 6,085
    edited May 2009

    I had my ovaries removed and wished I had done it at the beginning when it was first suggested to me.  I finally did it because tamox (with Zoladex for ovary shut down) wasn't working for me so the solution was to remove them and get me on an AI.  What as amazing is that I have very few hot flashes now -- I used to get tons with zoladex.

    And, since it was only my ovaries, not my uterus, it was not terribly invasive.  They were removed laparascopically -- 20 minute surgery.  I went home at noon (surgery at 8AM) and only needed tylenol for a few days.  Apparently it isn't so bad because the surgeon can get at the ovaries going between the muscles, you don't have to cut them (as when I got my gall bladder out).  I don't know how it works if you get your uterus out.

    This all said, for someone that is ER+ and not planning on having children in the future, I would say get them out.  Even if it is only for the benefit of getting rid of a lot of estrogen and being able to go on AIs.

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  • reen
    reen Member Posts: 164
    edited May 2009

    I just saw my oncologist this morning and he still feels I need them removed.  I did have the mutation test done and am negative.  This is my second BC.  I was on Tamoxifen when I got the second cancer.  The onc, is treating me aggressively and this is just one more step.  My concern now is more with the doctor I choose to do the surgery.  She gave me a very uncomfortable, insecure feeling.  I am going to another surgeon for a second opinion.  Thanks for all the advice.  I haven't read the article yet.  I'm too scared to right now, but I will later.

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  • Jeansbeans
    Jeansbeans Member Posts: 175
    edited May 2009

    Hi Reen, I had a hysterectomy, oopherectomy 7 months after my bilat mastectomy.  I went to the Mayo Clinic, and they highly recommended this procedure as the risk of ovarion cancer increases after bc dx and tamoxifen increases risk of uterin cancer. I had laproscopic done and I recovered quickly.  Good luck with your decision. Gentle hugs, Jeanie

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  • Carolina59
    Carolina59 Member Posts: 232
    edited May 2009

    I had my ovaries removed laproscopically. I had cancer in both breasts, BRCA2 variant of uncertain significance, highly ER/PR+, family history of bc. I was already in chemopause, so it was just another step of prevention. I'm glad you're seeing another surgeon if you didn't feel comfortable with the first one. I would never have any kind of surgery with a surgeon who made me feel uncomfortable. It's hard enough going under anesthesia with a surgeon you trust, much worse with one you don't trust.

    Good luck! 

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  • Curlylocks
    Curlylocks Member Posts: 1,060
    edited May 2009

    I had my ovaries removed last May at age 44.  I was highly er/pr+, 4 cm tumour, grade III and 3 positive nodes.  I was pre meno when diagnosed in 2005 at age 41 and my period continued throughout 6 months of chemo.  My oncologist wanted me to be aggressive with treatment due to age, tumour size, positive nodes and aggressivness so he put me on Armidex as first line hormonal treatment along with Zoladex injections.  I did the Zoladex injections for 1 1/2 years.  They were expensive at $1262.00 an injection once every 3 months, had extreme mood changes and fatigue on it.

    Being that I didnt want to go off the Armidex and there was no guarantee that my period wouldnt come back---oncologist highly recommended that I have them removed.  Yes the surgery is invasive but the recovery time was minimal--was back to work in 2 weeks and moving around slowly after a few days.

    Do I regret removing, no..would do it in a heart beat as I would rather risk the chance of having possible heart problems later in life than having my cancer return.  

    All the best in your decision.  It is your body, dont let anyone decide for you...get a 2nd opinion.  If I were in your place after having the beast return a second time would definitely go for it!

     Michele

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  • KEW
    KEW Member Posts: 745
    edited May 2009

    I had my hyster/ooph during my implant exchange 3 weeks ago and I'm thrilled not to wonder about my ovaries, and since I want to be on Tamoxifen I don't have to worry about uterine cancer.  I've only had increased night sweats.  I'm 49 and was 100%ER+ and still having periods.  Just one less thing to worry about.  I chose not to have chemo based on my Oncotype and this makes me feel more confident.  I have to be honest, for me it has been painful and I'm still resting.  I got up the other day and did a bunch of stuff and starting bleeding.  I see an oncologcical gyn so she went in abdominally saying that a lap is not the best when dealing with cancer patients, she likes to be able to really poke around.  She also took my appendix.  When I had my follow up visit yesterday she was unhappy that I was off my pain meds and doing stuff--it really requires 6-8 weeks of recovery time. So, back on the meds, why struggle with the pain and more resting.

    Best,

    Karen

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  • LMDuncan
    LMDuncan Member Posts: 715
    edited May 2009

    I had my ovaries removed Apri 23th 2009, 1 year after my right mastectomy.  I am also ER+.  At the age of 42 the encologist could not guarantee I would stay in menopause, even with the injections he was not comfortable with prescribing AIs.  And with having so many positive lymph nodes, I have a better chance of no recurrance if I am on AIs so I chose to have mine removed.  But it was a choice I made which might not be for everyone.  But I do not regret doing it.

    Lori

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  • 3boys4me
    3boys4me Member Posts: 319
    edited June 2009

    Reen- you don't say how old you are or if you are pre or post-menopausal.  My story may sound familiar to you...

    I was diagnosed when I was 46 and pre-menopausal.  Because I was pre-menopausal, my onc put me on tamoxifen.  I haven't had a period for over a year (don't know if that is a result of chemo or tamox).  My onc won't consider me fully menopausal for several more years.

    He feels that AIs are better than tamox and would like me to get an ooph to force menopause so I can go on the AIs sooner than later.  He also said going on AIs prior to menopause may actually bring back periods.

    I am resisting the ooph because I hear the AIs cause more body aches and pains and I have enough with the tamoxifen (which my onc swears isn't a SE of tamox). 

    Good luck with your decision.

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  • bluey
    bluey Member Posts: 2
    edited June 2009
    I'm in exacly the same place as 3boys4me  and some others. I'm waiting to hear back about the BRCA- which might help in the decision making. It's just that I was asked to have my ovaries removed on the day of my last chemo. At that point I couldn't imagine making yet another decision. It does help to hear so many others in favor of the surgery. Nice not to have ovarian cancer to worry about.
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  • reen
    reen Member Posts: 164
    edited June 2009

    Ovaries are out and so is the port.  Thanks for all your input.   

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  • dogsaver
    dogsaver Member Posts: 201
    edited October 2009

    hi ladies, i am going to get my ovaries removed laparascopically end of year, i finish chemo mid november. Definately the ovaries, considering the uterus but not cervix. what kind of recovery did yall have from this procedure? how long did you take to feel better? my mom passed of ovarian cancer and my sis tested positive for brca. im not particularly attached to the ovaries, so im for sure doing this, just wondering about getting uterus out too and recovery and pain and such. thanks so much

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  • bosombuddybeck
    bosombuddybeck Member Posts: 13
    edited October 2009

    Hello,

    I had my ovaries removed to be put into complete menopause so that I could take Femara.  The oophorectomy was outpatient and done laprascopically (not sure I spelled that right).  Recovery was easy.  I stayed out of work 2 days.  Ovarian cancer risk increases with BC and is hard to detect so I wanted a bit of extra assurance that it would cut down on that risk.  It is scarey that you can still get ovarian cancer without your ovaries, but it does lower the risk.  I had stage I BC at age 44, no node involvement, ER+, PR-, HER2-,1.4 cm IDC.  I had chemo, tamoxifen and then Femara.  I was not BRCA positive, but have no regrets about removing the ovaries. 

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  • dogsaver
    dogsaver Member Posts: 201
    edited October 2009

    thanks BBB! did you do chemo? how long after chemo did you wait to get the ovaries out? that is next on my list! thanks for writing

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