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Thread: Having a Hard Time Deciding to Have my Ovaries Removed. Please Help?

  1. #1
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    Having a Hard Time Deciding to Have my Ovaries Removed. Please Help?

    Hello everyone, I'm new here and could use the help of some of you who maybe have been in my shoes or know someone who has. I'm having the hardest time making a decision. I have a hard time deciding what to eat no less this! I'm 60 and I'm post menopausal 3 years now. I have a cyst on my left ovary that my gynocologist has been watching for a year and a half or more. Last October, the ultrasound showed it had grown a little from 4.2 cm to 4.7 but my CA125 was OK. In January, it was the same size but my CA125 was slightly elevated. My CA125 has vacillated between normal and abnormal the whole time I have been watched with readings always close to the 35 point. In early March, I met with a gyn oncologist and had a another altrasound done at her office. The cyst hadn't grown but now appears to have two compartments where before it was a simple cyst. I also have a new simple cyst on my right ovary, 2 cm. My CA125 was 28. I have the choice of removing both ovaries now or waiting for another ultrasound in June. My Gyn-Oncologist thinks we are dealing with benign cysts but of course can't guarantee this. She also said that sometimes ultrasounds are not conclusive. On the other hand, she seems to feel it would be safer to remove the ovaries than not. I've read that after menopause the ovaries produce androgens and a small amount of estrogen that provide protection from heart disease, osteoporosis, and dementia. I don't want to take out ovaries that could protect my health unless there is really a danger of cancer here. I'm also aware that ovarian cancer grows fast! My mom developed breast cancer at age 59 and I'm keeping that in mind also. I don't know what to do and this is driving me crazy. What would you girls do? Any advice or counsel would be appreciated. Thank you so much.

  2. #2
    Administrator Top User Didee's Avatar
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    Hi. I would get another opinion and then make my decision after you know both opinions.
    I would then make the choice re my long term physical and mental health. Be comfortable though with whichever way you decide. Only you can make this decision as you know yourself best. Personally I would be doing the utmost to get rid of the chance of possibly getting cancer as that would be reassuring to me.
    Aussie, age 61
    1987 CIN 111. Cervix lasered, no further problems.

    Years of pain, bleeding, women's plumbing problems. TV ultrasound, tests, eventual hysterectomy 2007, fibroids in lining of Uterus.

    Dx Peripheral T Cell Lymphoma stage 2B bulky, aggressive Dec/09.
    6 chop14 and Neulasta.
    Clean PET April/10, 18 rads 36gy mop up. All done May 2010
    Iffy scan Nov. 2011. Scan Feb 2012 .still in remission.Still NED Nov 2012.
    Discharged Nov 2014.

    May/2012. U/sound, thyroid scan, FNB. Benign adenoma.

    Relapse Apr 2016. AITL. Some chemos then on to allo transplant. Onc says long remission was good. Still very fixable.

    SCT Aug 2016

  3. #3
    I also think a second opinion would be helpful. Surgery may have complications or long-term side effects, but at least given your post-menopausal status, the ovaries' actual function isn't as important for your overall well-being as they were years ago. I personally would be weighing the cancer vs. unnecessary surgery possibilities rather than the heart disease, etc. considerations.

    I think reasonable people could choose either surgery or no surgery and that it's a very personal decision. You need to choose what you'd be most content with in the end if you looked back. For example, if you got surgery and things are benign, would the relief of knowing you don't have cancer outweigh the frustration of undergoing a surgery that ultimately wasn't necessary?

  4. #4
    I was in my early sixties when they spotted a tumor on my ovary. My primary doctor and I were very convinced it was benign, because my CA-125 was normal and a PET scan didn't light it (or anything else) up. Like you, even though I was past menopause I didn't want healthy organs taken out. The gyn/onc and I agreed she would do a laparscopic operation (three tiny incisions -- they insert a tiny camera and operate with tiny tools) to remove the suspicious ovary and its Fallopian tube. If the other ovary looked okay, she would leave it in. If the growth on my ovary was malignant, she would do a big incision and do whatever necessary. I woke up with the big incision, which I see as lucky now -- the tumor on my ovary was a slow-growing cancer and had spread a lot. The daughter growths didn't show up on any of my scans.

    Of course I have 20/20 hindsight now, but if I had to make that decision over again I'd have said to take them both, whether they're healthy or not.

    My situation had been different than yours -- I had been very sick and they couldn't find out why. Then I got much better, and we didn't know why. When they finally spotted the little growth on the ovary they said it wasn't likely to account for what I'd been experiencing, but we all agreed to take a "better safe than sorry" approach. As it turned out, that was the root of the whole problem.

    I was also concerned about what lack of estrogen can do. Of course that's mostly a problem for young women who haven't gone through natural menopause. My main concern was bone density, because I'd already been diagnosed with osteoporosis. I insisted on taking hormone replacement for two years, and I also take Fosamax, and I took weight training classes. My bone density increased 14% in two years and that changed my diagnosis to osteopenic. I stopped the estrogen after two years but still take the fosamax. Our fat tissue and other tissues do continue producing some estrogen after the ovaries are removed. I still don't understand that issue clearly but see it as less black and white now than before.

    It's a tough decision! I'm glad you're talking to a gyn/onc about it. If there's any possibility at all of it being a cancer, having a gyn/onc do the surgery makes a very big difference in the success of the surgery.
    Diagnosed with stage 2c papillary serous cystadenoma borderline malignancy of the ovary in 2009. Hysterectomy, omenectomy, appendectomy, debulking.
    - 2010 - laparoscopy showed inoperable recurrence, so started chemo.
    - Frontline chemo - carboplatin and cyclophosphamide, six cycles
    - Additional chemo regimens: Avastin - ten cycles; Weekly Topotecan - 4 cycles.
    - Spring 2012 developed pleural nodules. Topotecan plus Avastin - 1year.
    - April, 2014, had surgery to remove Aspergillus infection from right lung.
    - September, 2015, started on Megace because my tumors are PR positive. Stopped Megace after three months.
    - September, 2016, hospitalized for shortness of breath and back pain.
    - September, 2016, respiratory failure reversed with prednisone. Maintaining on 50 mg Prednisone per day and supplemental O2.
    - October, 2016 left hospital with no supplemental oxygen. Feeling great! Will start tapering off the prednisone Oct. 10.

  5. #5
    Administrator Top User Didee's Avatar
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    I did not have cysts but I had a non cancer related hysterectomy in 2007, one ovary taken, told that the other would keep on working. It, though had other ideas, shut down and I went through a surgical menopause. I had HRT for 5 years (could have kissed the feet of the person who discovered it as my symptoms were severe) I stopped 8 months ago. My oestrogen levels were checked a couple of months ago and I was told that they were fine.
    Aussie, age 61
    1987 CIN 111. Cervix lasered, no further problems.

    Years of pain, bleeding, women's plumbing problems. TV ultrasound, tests, eventual hysterectomy 2007, fibroids in lining of Uterus.

    Dx Peripheral T Cell Lymphoma stage 2B bulky, aggressive Dec/09.
    6 chop14 and Neulasta.
    Clean PET April/10, 18 rads 36gy mop up. All done May 2010
    Iffy scan Nov. 2011. Scan Feb 2012 .still in remission.Still NED Nov 2012.
    Discharged Nov 2014.

    May/2012. U/sound, thyroid scan, FNB. Benign adenoma.

    Relapse Apr 2016. AITL. Some chemos then on to allo transplant. Onc says long remission was good. Still very fixable.

    SCT Aug 2016

  6. #6
    Regular User
    Join Date
    Mar 2010
    Posts
    10
    HI,

    I am currently being evaluated for ovarian cancer, and like Serous2c, my symptoms are pretty much seemingly benign. My journey started with having no cycles for 20+ months and then, surprise, a period. It was a light flow, but had all the other cast members: bloating, abdominal discomfort, backache, and irritability. The classic menstrual menagerie. I immediately made an appointment with my PCM. An ultrasound and hormone level check were done. Based on those results, an MRI was scheduled and an uterine biopsy accomplished along with a check of CA-125 levels. Biopsy and CA-125 levels were normal. However, MRI confirmed questionable nodules in left ovary spotted on Ultrasound. My GYN Oncologist feels the most prudent course is ovary removal. I agree and the procedure will take place on the 16th of Jul.

    I understand the conflict of protecting your health versus removing potentially healthy organs, but in my case I will be very proactive. I am now 54, in my late 30s I underwent 4 cycles of IVF using maximum levels of ovary stimulating medications. I have often wondered if this could put me at higher risk for ovarian cancer. I will deal with them being removed and any needed hormone replacement therapy I might need.

    If it were just me I might not be so aggressive in treatment, but I have a 16 year old son. We just lost my husband and his father in December after a 2.5 year battle with brain cancer. I will do everything I can to not let my son go through loosing another parent to a difficult journey through cancer.

    I guess my point is that while emotionally traumatic, losing ovaries at our age is not as critical as many other organs. Why risk allowing cancer to possibly spread for fear of increased risk of future diseases? Especially when the only true way to determine if the ovaries are cancerous is to have them removed and evaluated.

    I will pray that you will come to a decision that will bring you peace of mind.

 

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