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  • 64yo post-menopausal mom, complex ovarian cysts, family history

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    Old 01-26-2018, 01:58 PM   #1
    neville19
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    64yo post-menopausal mom, complex ovarian cysts, family history

    My 64yo mom (with a family history of OVCA, blood-sister dying 30 yrs ago at 36) was recently diagnosed with complex ovarian cysts in her health checkup pelv/abd ultrasound: 2.9x2.3x2.5cm cystic lesion with internal echoes and few septae in right adnexa and similar lesion 3.9x3.6x2.5cm in left adnexa, both ovaries not seen separately. No evidence of free fluid or mass in pouch of douglas. Enlarged/bulky ovaries.

    Upon referring our obgyn, we got the CT scan with contrast done along with CA-125, CEA and CA19-9, FT3/FT4/TSH. The CT revealed bilateral bulky ovaries (left: 4.8x3.2cm with a 2.9x2.5cm cyst and the right: 2.7x2.2cm called prominent with no mention of cyst). No abnormalities in liver, gall bladder, pancreas, spleen, adrenals, kidneys, bowels, etc. Above blood tests are normal. The only problem is her left hip prosthesis coming in the way and preventing adequate evaluation of the left ovary (again, nothing mentioned about the right one)

    Although our gyno said she's little positive because of the good test results, they're not fully conclusive and we need to remove everything with a total hysterectomy+oopherectomy by laparotomy due to family history soon.

    How risky does this situation look? We were supposed to fly to the US for 2-3 months on Jan 30, 2018 but the gyno says not to delay surgery, is it prudent to do it immediately or wait/monitor the cysts for 2-3 months? My mom really wants to visit dad in the US as she just got the greencard last year and is very disheartened/emotional/pessimistic if she has to stay back for a surgery and something bad turns up. On the other hand, I will regret if in case there's something, it advances and spreads in these 2-3 months, so I'm really torn here.

    I have referred 4 obgyns by now, and all of them say it's my choice and that we can go to the US and do monthly/bimonthly USGs, but nobody clearly assesses the risk because it's so complicated to figure out how fast things actually spread in different people in case they exist. This is really devastating and I don't know what to do. I have read tons and tons of stuff online and know that no tests give a clear idea.

    What's the best approach here? Any advice/experiences are highly appreciated. Can untreated hypothyroidism be a cause of these cysts?

    P.S. We're getting a 4D color doppler USG tomorrow to see blood flow in the cysts if that can help.

     
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    Old 01-26-2018, 04:56 PM   #2
    Titchou
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    Re: 64yo postmenopausal mom, complex ovarian cysts, family history

    First of all, I am sorry you are dealing with this. Next,I would NEVER allow the removal of my ovaries and uterus without a confirmed cancer dx. So, I would find a surgeon who has the expertise to remove just the cysts - they can be biopsied while she is on the operating table and then proceed from there if necessary. Once you find such a surgeon, leave the decision to your mother. At 64 she's fully capable of doing that and, after all, it's her body and her life.

     
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    Old 01-27-2018, 04:42 AM   #3
    Froodie
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    Re: 64yo postmenopausal mom, complex ovarian cysts, family history

    I would go with the medical advice, which is to remove everything and not wait around. I had normal blood test results, including the CA-125 but it turned out that I had ovarian cancer.

    I had a rare type of cancer which was only diagnosed after my surgery, when the tumour was examined and thoroughly tested.

    I was 59 at the time and I had everything removed, as per the medical advice. I'm 64 this year and completely well. I haven't missed my reproductive organs in any way. The surgery I underwent undoubtedly saved my life.

    Not all ovarian cancers are easy to diagnose and the CA-125 is inconclusive as a diagnostic tool. I had the tumour removed intact, along with everything else. Taking biopsies can cause cancer cells to escape into the abdominal cavity, or worse the tumour could rupture.

    As I said, the very best thing to do, in my opinion, is to follow medical advice. They are the experts.

     
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    Old 01-27-2018, 08:02 AM   #4
    yayagirl
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    Re: 64yo postmenopausal mom, complex ovarian cysts, family history

    Dear neville,

    First of all, bio-identical and/or compounded female hormone replacement is readily available these days. Hormone loss should not determine life VS death decisions. Were this about my mother, when dad gets to see mom would be the most moot issue compared to saving her life.

    I am sharing because of recently losing a very dear & close family member just last Sunday to inoperable metastasized cancer because cancer is not always detectable before it has overcome the vital organs and is not always even operable. There is not always a fluid build-up. Tumors are not always viewable and biopsies can spread teensy cancer cells that cannot be seen by any sort of or test.

    The family history is a good reason that it is so dangerous to put surgery off. Cancer has to be in the blood stream to see it there. Cancer was never seen in my family member's blood stream. Our loved one suffered needlessly because no test could prove what was wrong and doctors would not do a biopsy for fear of spreading cancer. It was not safe to do biopsies and disturb a tumor that could send millions of cancer cells into the body cavity. When a doctor finally agreed to do exploratory surgery her organs were already filled with cancer and it was done more to see what was already killing her.Her body never had the so-called usual signs.

    Do not wait until mom is getting obvious symptoms. It easily could be too late. In my opinion the question should be life and death, not surgery VS dad seeing mom.

    Regarding thyroid issues, from what I have read, some doctors recommend checking the thyroid when there are ovarian issues, just to see if cancer is in the thyroid, but that has nothing to do with the death threat of ovarian cancer.

    Ovarian cancer is the deadliest of the gynecologic cancers, and the leading cause of death by cancer in women, mainly because the cancer is not always provable until after surgery or death. Ovarian and uterine cancers are among the top 10 leading causes of cancer deaths.

    The doctors are allowing your decision, not because they think it is a toss up whether mom goes on a trip first, but because by law they have to leave that decision with you.

    To me these are the choices: mom visits dad first or you risk that mom's cancer metastasizing (which it easily may have already done) and then doctors try their best to save her.

    My family member's cancer was not seen or provable by scans, ultrasound or blood tests, yet when they finally opened her, the doctors were horrified to see that her body was filled with advanced cancer that never once showed in any type of scan or biopsy, so by then it was not operable.

    I pray that you get those completely unnecessary organs removed from your mother ASAP.
    I'm sure that father would want not want to live with never seeing his wife again because he didn't want to wait to see her sooner. If the choice is yours to make, you know what to do. You are all in my prayers.

    Love,
    __________________
    ~ YaYa ~

    Last edited by yayagirl; 01-27-2018 at 01:08 PM.

     
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    Old 01-27-2018, 09:35 AM   #5
    STLouisgal
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    Re: 64yo postmenopausal mom, complex ovarian cysts, family history

    I'm sorry your family is dealing with this. I was faced with possible ovarian cancer and wish I had done things very differently. My "reproductive" organs (uterus, ovaries, tubes) were unnecessarily removed even though the biopsy done while I was in the operating room showed that my cyst was benign.

    It quickly became apparent that these organs have lifelong non-reproductive functions. And all the research I've done in the last 11 years since my surgery have revealed many studies about the importance of these organs for good health. The ovaries are endocrine glands and have been shown to produce health promoting hormones well into a woman's 70's. Studies have even called out the overuse of these female organ removal surgeries especially the removal of ovaries if cancer is not confirmed via biopsy or genetic testing does not show a high risk (the main ones being BRCA1, BRCA2, and hereditary nonpolyposis colorectal cancer a.k.a. Lynch Syndrome). Ovarian cancer is far down on the list of cancers. In the U.S. lifetime risk is less than 2%.

    Granted, the after effects and increased health risks of ovary removal would typically not be as devastating in a 64 YO than someone a lot younger or a bit younger (I was almost 50 at the time of surgery). But if the cysts are benign, then why have these important organs removed? Oftentimes cysts resolve on their own. One renowned ob/gyn has written quite a bit about ovarian cysts and says that postmenopausal cysts are much more common than previously thought and are usually benign. Many cysts resolve on their own no surgery needed. But gyns with good cystectomy skills can usually remove the cysts and save the ovary(ies) if surgery is indeed needed.

    And frankly, I miss my uterus as much as my ovaries for its anatomical and sexual functions. My figure has changed drastically and my bladder and bowel have been displaced causing issues. I no longer have sexual desire or pleasure. Some women who have genetic risk of ovarian cancer have their ovaries removed but keep their uterus. I don't know if this is also true for some who have confirmed (via biopsy) ovarian cancer or not.

    I personally let my ob/gyn's cancer scare tactics take over. I wish I had not let that cloud my thinking and actions. Research to get as much info as you can and possibly other opinions.

     
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    Old 01-27-2018, 11:59 AM   #6
    Froodie
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    Re: 64yo postmenopausal mom, complex ovarian cysts, family history

    Tumours can rupture during surgery, scattering cells throughout the abdominal cavity. Even a slight cut into a cancerous tumour can spread cells. That's why when I had surgery they removed everything intact. I hadn't at that point been diagnosed with cancer but my surgeons were very professional and acted in my best interests.

    I would definitely be guided by the doctors. They are the experts.

     
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    Old 01-31-2018, 11:03 AM   #7
    neville19
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    Re: 64yo postmenopausal mom, complex ovarian cysts, family history

    Hi everyone,

    I don't know why I didn't receive email notifications for this thread, I just happened to come back across it by chance.

    Anyway, I visited 3 obgyns and 3 gynecologic-oncologists, and most of them recommended removing the ovaries. One gynecologic-onco recommended removing just the ovaries, but the other two mentioned it's better to get everything out to minimize the risk.

    So we've decided to undergo a laparoscopic (not laparotomic) frozen section and hysterectomy next week by the gynecologic-oncologist. I hope there's no added risk of spillage/cyst rupture due to laparoscopy instead of laparotomy?

    Please keep us in your prayers. Thanks so much!

     
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