Bilateral ovarian fibroma - what to do????

Good afternoon! I apologize in advance for the length of this post, but I want you all to have all the information I do and for you to give me your opinion and experiences if any.

I am 49 years old and was diagnosed with stage 4 margnal zone NH lymphoma two months ago, for which I'm on watch & wait. My mother had stage IV breast cancer and then went on to have ovarian cancer. I often have precancerous skin lesions. Throughout all the testing for the lymphoma, adenomyosis of my uterus with hemorrhagic cystic changes as well as a lesion on each ovary were found. The MRI reports that the lesions are "likely to be fibroma." I have just returned from the gynecologist/oncologist, who after reviewing everything, has given me the option of bilateral oophorectomy with a D&C to biopsy the uterus or to watch and wait for three months. She feels with the information she has they are most likely benign fibromas, however, is unable to confirm this. The only way to biopsy these "fibromas" is to remove the ovaries. She will support either decision and is removing all personal bias and gave me my options. Could not get her to sway either way lol.

I have yet to go through menopause, although I am perimenopausal as I am having night sweats and my period is beginning to become irregular. Having the surgery would remove my risk of ovarian cancer given my history with my mom and assure me that the lesions are negative (or positive and receive immediate treatment) but it would also put me into early menopause, which she indicated could affect bone health and cardiovascular health.

My question to you is would you opt for the surgery? I'm curious as to how many of you have developed secondary surgeries to your lymphomas? Those of you that have had your ovaries removed, even with benign findings, are you thankful that you did? Did you every regret it? How bad was the menopause? What would you do?

Obviously I don't want to compromise my health in other ways, however, given all that I have gone through the last month with being diagnosed with cancer, my mother's history, and now not being able to confirm for sure they are benign, I'm stuck at what to do. In addition to my diagnosis, my husband was diagnosed a week after me with prostate cancer. To say our lives have been in an upheaval is an understatement. At this point I'm probably the healthiest I'll ever be and am wondering if my lymphoma gets to the point I need treatment, and then eventually need something with my ovaries done, how I would fare. Not sure if any of this makes sense, but thanks in advance for your insights!

10 Replies

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  • Hi and welcome. That is a lot of information but it does give us a good background into your situation. Did your gynae oncologist do a CA125 blood test? Whilst this isn't an exact diagnosis test it would help to know what this was before you make any decisions.

    My circumstances were different as I went straight in for the ovarian cancer, however, if I had your history and also given the incidence of both breast and ovarian cancer with your mum I would be inclined to go with the oophorectomy. This is just a personal choice and in no way am I suggesting you do this but having personally been on the ovarian cancer rollercoaster I'd go for early intervention as earlier intervention is better in my opinion. Have you been tested for the brca gene?

    I don't, personally, think that given that you're already peri menopause that an early menopause would have too much bearing on this as you're already part of the way there.

    As I say, my circumstances were different to yours but my thought is that prevention is better than a cure? I really hope your lymphoma is being very closely monitored too.

    Do let us know what you decide and I hope your husband is getting all the treatment he needs. You have so much to think about and I hope you make a decision you are at peace with. Take lots of care ❤️Xx Jane

  • Thank you so much for your response!!! My CA125 was 40, which is only slightly elevated. I was negative for the BRCA gene, however, it is my understanding this is only good for about 10% of the gene cancers. I appreciate your insight. That is where I'm leaning to. xoxo

  • Hi, like Jane, I too would err on the side of prevention and opt for the surgery whilst you feel well. However. I would be asking the surgeon to make sure he removes the fallopian tubes also as the clinicians now believe that ovarian cancer starts in the fallopian tubes.

    Good luck with your lymphoma. My brother in law found out on Tuesday that he has stage IV follicular lymphoma, he started chemo yesterday.

    Ann xx

  • Did your gynae-oncologist explain the reasoning behind waiting for three months? I think that would have a bearing on my decision as to whether to wait for three months or go ahead now with an operation.

  • I think it's mostly because the MRI states that it is "likely fibroma" which would mean it's benign. But that is not a guarantee.

  • Yes, but I was wondering what might happen in three months to help with a decision. Would you have another scan for instance. Good luck whatever you decide. It's not an easy one to think through.

  • Yes I would scan every three months or so. I am already on watch and wait for lymphoma so not sure how I feel about this one too lol!

  • Hi love,

    Obviously it is your decision,

    However, I would opt for surgery every time,particularly bearing in mind your family history,if you can stop in its tracks what we have all been through,my decision would be surgery every time.

    Life is difficult, my husband has Parkinson's which is making him deteriorate in front of my eyes.We have to do the best for ourselves to continue our quality of life no matter what.

    I wish you all the best in your decision,we are here for you if you need to chat,all the best to you and your husband,

    Love Carole xxx

  • Thank you so much of your reply! Parkinson's is such a difficult and cruel disease! Sending positive thoughts to you both! xoxo

  • Thanks love and back to you xx

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