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Prophylactic hysterectomy with oophorectomy for weird fibroid?

Posted , 6 users are following.

Astropuppy
Astropuppy

This is a followup of a post I made in the “Fibroids” forum.

I am 49 years old and in perimenopause (periods closer together, missed two periods in the past 12 months.) I have multiple fibroids  - I’ve had fibroids since I was in my 20s -which create intermittent pressure symptoms (my periods are OK) that I can live with. One of my fibroids, which is pedunculated has grown rapidly over the past 3 months, from , but something like 6x7x6 cm to 7x9x8 cm (don’t remember the exact measurments; I can feel that it has grown), and MRI scans with contrast show that it is ‘weird’, not like my other fibroids.

I have no history of cancer in my family. However, I have never been pregnant (When I was 42, I miscarried at 6 weeks; I don’t think that counts) and I am Ashkenazi Jewish (I can’t afford genetic testing), both of which I believe increase my risk.

I have met with a gynaecological oncologist, he would recommend removing my uterus as well as my ovaries to prevent any possiblity of cancer. He explained that it shows up as brighter when viewed with contrast.

Pretty much everything I have read says that you don’t do a hysterectomy for cancer until  there is an actual cancer diagnosis, however:

1) My understanding is that there would be not way to tell if the fibroid was cancerous until after it was removed.

2) Some Gynecological cancers progress very rapidly. By the time I was diagnosed with one of these cancers, my risk of death would be very high.

 

 I have a tentative hysterectomy - I said I had to think about it and would let them know -  scheduled for April 20.  They actually had me pencilled in for a couple of weeks from now but I said it was impossible for me due to commitments.  The next free date for the oncologist to perform surgery was May 18, and according to my husband, who was sitting in the room with me, when I said I wanted that date,  the oncologist made a very worried face. So I’m not sure if I would  have time to get a second opinion.

I woul be more open to having just my uterus removed and keeping my ovaries (no more periods or bloated belly), I'm not sure why the oncologist says I need to have my ovaries removed, if the problem is in my uterus. I have had a chest x-ray and ct scan of chest, abdomen and pelvis which shows that for now, there is no problem outisde my fibroid.

Any thoughts?

 

1 like, 19 replies

19 Replies

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  • raymond9
    raymond9 Astropuppy

    Posted

    you should bear in mind that it only takes one cancer cell for the problemto beginall over again elsewhere in the body - why take the chance with the one precious life which you have! I cant believed that any other commitments, which you have, could be more important than that one precious life!
  • peggy86043
    peggy86043 Astropuppy

    Posted

    If it were me I wouldn't want to risk any chances of it being cancer. I would have the surgery as soon as possible. Waiting could surely lead to trouble. I would cancel or put on hold any commitments that I had previously had. Your life is in danger and that should come first.
    • peggy86043
      peggy86043

      Posted

      At the age of 49 you can live without these body parts.
  • kathy59767
    kathy59767 Astropuppy

    Posted

    I would go for it.  What's the point in taking the chance? It's noy the worst op in the world and at least it'll be straight on to HRT.  Good luck. X
  • bridy16825
    bridy16825 Astropuppy

    Posted

    Hi, this is a really big decision and I understand why you may need some time to consider...I'm 4 weeks post abdominal hysterectomy for fibroids ( I'm 45 ad decided to keep my ovaries), and this is major surgery.....however if there is the slightest chance that this could be cancerous, and from what you are saying it appears that your consultant may think that this unusual fibroid could be sinister.......please don't wait. Early diagnoses and treatment is paramount to successful recovery...if there is a chance of an early date, take it.

    in regards to your ovaries there have been lots of positive posts about successful HRT treatments. My consultants said that as I was 45 I was on the cusp of whether to keep them as it could be a few more years before I started the menspause, if I had been older I would have opted to have them removed.

    make the decision that's right for you in regard to your health.......it's difficult not to be influenced by external factors... Right now you have chioces, don't leave it so that those choices become limited.

  • Astropuppy
    Astropuppy

    Posted

    OK. I am wondering why I am being told to have my ovaries removed when the problem is in my uterus. My ovaries are perfectly fine at the moment.

    What I forgot to mention is that I have no history of cancer in my family. I do, however, have a history of heart disease and osteoporosis. My father and his father died of heart disease. My grandmother died of osteoporosis (she lifted her arm to brush her hair and her spine fractured) and my mother is now immobilised by it. Removing my ovaries would increase my risk of both those things, particularly my risk of reduced life expectancy from heart disease. I am trying to find out why the oncologist wants to remove my ovaries, but haven't got a call  back yet. Actually, even if I kept my ovaries, their function would be diminished because of reduced blood supply to the ovaries. There are also risks with HRT and the general risk of major surgery from a hysterectomy, of course, so it is a matter of balancing risks.

    In terms of being 49 and not needing my parts anymore, if I go by my family history, I've got a good 5 years to go before I reach menopause, and as I said, ovaries are important for maintaining good cardiovascular health. 

  • kathy59767
    kathy59767 Astropuppy

    Posted

    It sounds like you are really, really uncomfortable with the idea of the removal of your ovaries and tbh would need to discuss this with an expert, and someone who has access to your medical records.  From one 49 year old to another... I think if it was me, I would take the risks with the ovaries and remember that HRT has an awful, awful lot of good side effects too.  One of which is the preservation of bones.  My mum's four sisters didn't take HRT and suffered dreadfully with osteoporosis and my mum's bone density is fab.  I know there are always risks, but as I understand it, those pesky cells can spread easily before detection, and prophylactic intervention may be what is needed here.   I would put all your thoughts and fears in an email and send them to your consultant's secretary and ask for very specific answers to your questions.  Perhaps he is being a bit too over-cautious and you need to find out if this is the case.  Let us know how you get on. xxx
    • Astropuppy
      Astropuppy kathy59767

      Posted

      Kathy, sorry if this is a stupid question, but how do I find out how to email my consultant (NHS). I have only met the oncologist once. He has a private practice and his main NHS hospital is in a different city (where I would be having the operation). He is only at my local hospital once a week. I have the phone number of the nurse who is working on my case. I am supposed to call her when I decide whether or not I want to go through with the surgery. I called the number yesterday. It was a general number for a nursing station and no answer. I left a message for the nurse, saying I had questions for the doctor, but nobody ever returned my call.

      Before, when I got the letter saying I had been given an appointment for a CT scan, I called the gynaecologist to find out what was wrong. The secretary returned my call and told me something, but it didn't really answer my question, but I couldn't ask more because I knew she was just repeating what she had been told.

      Earlier

    • Astropuppy
      Astropuppy kathy59767

      Posted

      I found his email address via  Google search (not on the hospital website). I hope he responds quickly.
    • kathy59767
      kathy59767 Astropuppy

      Posted

      Hi A, apologies as I only just saw this.  I know that all NHS consultants will have a secretary who will forward them your email.  Try to put any reference numbers on your emails so they can easily check your records.  I hope you get all the answers you're looking for.  X
  • Debedee
    Debedee Astropuppy

    Posted

    I wad diagnosed with a tumour in my womb, it all happened quite quickly (I live in Australia).. Went from Gyni to Oncologist. He said it was stage 1 but he couldn't operate for 2 weeks as he was fully booked.  I had full abdo hysterectomy and Oncologist saw me every day during my stay in hospital and ensured me he was certain cancer was contained in my womb. at my 6 week check up was told it was actually stage 2, so it had progressed in the 2 weeks. Nobody is more squeamish or scared of hospitals than me. I won't say the op was easy, I am still not fully fit and I am nearly 5 months post op. Please think long and hard, consider your hubby, family and friends and give yourself the best chance of a healthy happy life.  Good luck with whatever you decide.
    • Astropuppy
      Astropuppy Debedee

      Posted

      Debedee, did you have your ovaries removed as well?
    • Astropuppy
      Astropuppy Debedee

      Posted

      How did the doctor know that it was a tumour and not just a fibroid, and that it was cancerous? Do you also have fibroids (benign)?
    • Debedee
      Debedee Astropuppy

      Posted

      I had a series of scans which showed something. GP referred me to Gyni, she performed a D&C and removed a polyp which when tested revealed cancer.  Had everything removed, cervix, ovaries and uterus, I had small fibroids and cysts too but they were separate from the tumour as I understand it!  No point in taking any chances, I do know a couple of friends of friends who opted not to have full op but have had to have further surgery.  Ask questions and get as much advice as possible from the specialists.  
  • Astropuppy
    Astropuppy

    Posted

    Because of my medical history and my family medical history, there are many reasons why removing my ovaries would be a bad idea. I have emailed the oncologist and asked him to explain why he thinks it might be necessary to remove the ovaries as well as the uterus. If at all possible, I would like to keep them. 
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