Necessary to have ovaries removed, too?

SherryBW
SherryBW Member Posts: 10
edited June 2014 in ILC (Invasive Lobular Carcinoma)

There are lots of discussions on this board about women having their ovaries removed after being diagnosed with ILC.  Is that something I we should all do? 

For info, I was DX in May, bilateral mastectomy in June.  2.5 cm ILC in left breast, no lymph nodeinvolvement.  After surgery pathology showed very early ILC and DCIS in OTHER breast that probably would not have been visible by mammogram for two-three years, so I made a good decision, but worry that since the ILC spread (?) to the other breast, should I have ovaries removed, too?????

Also, with a Oncotype score of 11, I chose not to have chemo but worry every day whether this was a good decision or not.  Guess we will always worry, though......

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited September 2010

    I certainly don't have all the answers, but just wanted you to know that my mom had ILC many years ago (lumpectomy, radiation and tamoxifen) and is a survivor of nearly 24 years without a recurrence; and she's never had any issues with her ovaries. (I lost mine, not by choice--ruptured---if given the choice, I would've chose to keep them.(there's lots of new issues when your ovaries are gone!)  (JMHO)

    Anne

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  • beckward
    beckward Member Posts: 59
    edited September 2010

    I also had a very low oncotype (5) and no chemo.  I am not taking Tamox. for other medical reasons which would put my risk of uterine /endometrial cancer too high.  I investigated an oopherectomy or hyst. and was strongly discouraged by my OB.  She thought too extreme, as I was 48 and close to meno. 

    I am now monitoring a cyst-like lump in same area as orig. ILC. after BMX two years ago.  If this turns out to be a recurrence, I'm running, not walking to the OR to get those ovaries out.  My cancer was 95% ER and PR positive.  Looking back, I should have pursued the oopherectomy.  

    Like you, I've noticed how many people have it done immediately after/ with the BMX.  The only

    issue is...how bad will it be to lose all estrogen at once. 

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  • DFC1994
    DFC1994 Member Posts: 163
    edited September 2010

    Hi,I had a similar diagnosis. ILC(2 tumors) in left breast and DCIS in right breast. Had bilateral MX and no chemo or rads. Was supposed to take tamoxifen but developed DVT's after surgery and could not risk taking it due to side effects of blood clots. So between ny ONC and BS they decided to take my remaining ovary. It was removed 5 weeks(Dec 09) after my MX. I am still battling surgical menopause and insomnia but I feel better having it removed since my cancer was so highly estrogen positive.I have had a couple scares with lumps etc in the original ILC spots but turned out to be cysts and fat necrosis. Other than having the ovary removed(other one removed 10 years ago) I have had no other treatment other than the MX.It worries me but so far I am good 10 months out.

    Good Luck in whatever you decide.

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  • momand2kids
    momand2kids Member Posts: 1,508
    edited September 2010

    Hi

    Like you, I had  2.5 ilc lump--- I had chemo and radiation-- taking lupron shots to shut down my ovaries and femara (I could not take tamoxifen and I was pre-meno)  All through the process, no one on my medical team thought I needed to take out the ovaries... and I still ask at my 6 month appts.   I had a lumpectomy with clear margins---so I decided that I would listen to my "gut" on this....and I have not had them out.... my onc told me that most people get tired of the monthly shots eventually and just take out their ovaries...but so far that is not me.  So far, it feels ok to me--- but when it doesn't I will have them out. 

    I am in medically induced menopause because of the lupron-- and I have  gotten used to that... They tell me that having my ovaries out would be the same, but I doubt it--- they always downplay the side effects....

    So, for now, I am just compliant with the drugs, 6 month onc visits, annual gyn visits--and I don't worry about it..... but we are each of us different. 

    c 

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  • AnacortesGirl
    AnacortesGirl Member Posts: 1,758
    edited September 2010

    I tested positive for BRCA 2 so that is why I'm going to have fallopian tubes and ovaries out.  Potentially increases my chances of ovarian cancer to 20%.  No history in my family though.  Had an aunt die of cervical cancer but I figure PAP smear is an easy, effective test so I'm not going to do anything there or with my uterus.  Because I'm am now in menopause I'll be taking an AI and not tamoxifen which can cause uterine problems.

    I think it's your decision based on your comfort level.  Whatever you decide it will be the right decision based on what you know at this time. 

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  • crazy4carrots
    crazy4carrots Member Posts: 5,324
    edited September 2010

    Interesting new study done by researchers in Vancouver BC regarding ovarian cancer.  They found that the great majority of miniscule cancer tumours are found in the fallopian tubes, rather than the ovaries, and figure that the cancer spreads to the ovaries.  Apparently oopherectomies and hysterectomies seldom include removal of the tubes, and if this were corrected, half the ovarian cancer cases would not occur.  It's being published today in the New England Journal of Medicine.

    BTW, I asked my onc if I should have an ooph (esp. since I have 2 sisters who are OC survivors) and she said she didn't feel it was necessary....as long as we monitor frequently.

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  • Kleenex
    Kleenex Member Posts: 764
    edited September 2010

    lindasa - How do you "monitor frequently" for ovarian cancer? Interesting about the fallopian tubes...

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  • crazy4carrots
    crazy4carrots Member Posts: 5,324
    edited September 2010

    Ultrasounds and physical exams, as well as being mindful of any physical symptoms.  I'm still not sure I shouldn't have them removed (along with the tubes of course!) but I guess my thinking really is that I was the sister who got BC, while my 2 sisters were the ones who got OC.  There is no identified BRCA gene in our family, but then again there are so few genes identified.  BTW, my mother had BC, first ever in her family......

    Speaking of identified genes, the BC researchers have also discovered an OC gene.  Most news websites have info on this today.

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  • Alice100
    Alice100 Member Posts: 16
    edited September 2010

    I was talking with my Dr and she said her belief, which she went on to say could be completely different than another GP's beliefs...is that once you've had children (or decided not to have them), then the ovaries are not required.  I do trust her, but on the other hand, don't they also do more than just produce estrogen?  She said her concern with me is that I also have poly cyctic ovaries and I'm growing a yucky little Durmoid tumour (google them, they harmless, yet really ugly looking!), that I shouldn't take any chances and she recommended that I have them removed.  

    It could be in a post but I missed it, but if you are on tamoxifen wouldn't your ovaries shut down anyway?  I'm really thinking about it, but I'll be 41 next month, there is the possibility that I could go into the drug induced menopause for a couple years, but after 5 years, maybe I would have a few good years before natural menopause set in?  I don't know...I need to do more research...maybe talk to another Dr. at the Cancer agency.

    Alice 

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited September 2010

    Alice--tamoxifen doesn't "shut down your ovaries"; it doesn't decrease estrogen at all, it just blocks the estrogen receptors in the breast. ( the AIs actually decrease estrogen production). I had a large ovarian mass that turned out to be 3 dermoid cysts all clumped together and ruptured. I ended up with a TAH/BSO (everything out abdominally)---had to go thru immediate surgical menopause  adn major abdominal surgery at the same time. It's a good practice to get a yearly transvaginal US while on tamox, to monitor both the uterine lining and the ovaries.

    anne

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  • toomuch
    toomuch Member Posts: 901
    edited October 2010

    Just found this site and thought I'd weigh in with my experience. I was diagnosed with pleomorphic ILC with 2 positive nodes. I knew immediately that I wanted to have my fallopian tubes and ovaries out. I talked to my gynecologist about doing this the same time that I have my bilateral mastectomy. Fortunately, my uncle is a gynecologist and he encouraged me to see a gynecologic oncologist. It am so happy that I followed his advice. The doctor explained to me that they perform a slightly different procedure and are able to remove more ovarian cells as a result. It seems that some can be left behind, who knew? In addition, he talked to me about a recent study that shows a link between breast cancer and an aggressive uterine cancer. More studies are needed before this can be confirmed but he has me thinking about having my uterus out too. Whatever I decide, I'll be happy to know that I considered all the information. I would encourage you to think about a consult with a gynecologic oncologist if you are considering removal of your tubes and ovaries. The first one I called only performed abdominal surgeries and I knew that I wanted it done laparscopically so I moved on. I think that this is also an important thing to check.
    Good luck with all of your decision making.

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  • mymountain
    mymountain Member Posts: 184
    edited August 2013

    Sherry,

    Are you pre or post menopausal and what hormone therapy are you on?

    If you are on tamoxifen, you should qualify to have yearly trans abdominal/vaginal Ultrasound.  That will pick up on any abnormalities that need further evaluation not only looks at the uterus, but ovaries and tubes.

    I was right on the edge of meno when I started tamox, and have had 3 US, and 2 uterine bx's in 2 years. I would have had a  total hyst/BSO but I didn't want anyone messing with my already huge abd incision.   

    If yours can be done laparoscopicly, it would be a relatively easy surgery, and give you piece of mind.

    MM

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