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Clarification on not having my ovaries out - another vent

Posted , 4 users are following.

Astropuppy
Astropuppy

When I met with the gynaecological oncologist, and decided that to be safe I should have a hysterectomy to get rid of the rapidly growing, funny looking (on MRI) fibroid, he said "we'll take out the ovaries, too." At the time, I didn't say anything.

However, after I went home, and I did a lot of research and found that it would be a bad idea because having my ovaries removed increase my risk of heart disease and osteoporosis, and my family has a strong history of both, but not of cancer (which I didn't think to mention at the consultation - finding out that there was a slight chance I might have cancer in my uterus put other thoughts out of my mind.) So I sent a very long, detailed email to the gyn/onc, explainging why I thougth removing my oviaires would be a bad idea but never got a response. So I called the gynaecological nurse, who was present at my consultation, and she reassured me that I didn't have to have my ovaries out; I have to consent to the surgery.

Well, I was all relieved until I had my presurgical assessment on Wednesday, when I was given the paperwork to fill out and on the top of the first page it said TAH/BSO (The BSO part means removal of Fallopian tubes and ovaries.) I wrote on the page that I did not consent to BSO and told the assessment nurse, who said she just go that from the doctor and it had nothing to do with her.

So when I returned home, I spoke to the gyn/onc's secretary, who said that she must have mistakenly wrote TAH/BSO on the form and not to worry, the doctor knows about it. I said that I wanted to make sure that he was aware of it prior to my surgery, which is this coming Wednesday, and she said she would speak to him on Friday (today) and would call me back.

Well, I never heard back so called around 4:50 and spoke to a woman (not sure if it was the same person) who, after I gave my name, immediately started reassuring me that my operation would go on as scheduled. I explained that wasn't why I was calling, I wanted to make sure that the doctor wasn't expecting to take out my ovaries when I didn't want him to. She then tried to reassure me that everything was as expected and something about an email being forwarded to him (not sure if she said she forwarded an email or my email). I think she also mentioned something about getting in touch on Monday.

I know that I don't have to consent to anything I don't want to, but I also don't want to have the doctor come in on the morning expecting to do one type of surgery and then being asked to do something else. If the gyn/onc thinks that even with my family history, I'm better off without ovaries, then I'm willing to listen and change my decision, but I don't like the idea of not knowing what is happening with me until the last minute and having to have these kind of conversations on the day of my operation.

 

2 likes, 26 replies

26 Replies

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  • bridy16825
    bridy16825 Astropuppy

    Posted

    Hi, I work for the NHS and you will have an opportunity to speak to the surgeon before your operation.... You should sign your consent form at this point.....it's a very anxious time for you.....just to reassure you surgeons are used to changing procedures at the last moment. X
  • teresa2545
    teresa2545 Astropuppy

    Posted

    I told the consultant my wish about my ovaries on the morning of my op.We had previously discussed it back i Jan but he then told me a decission on the day would be fine. Can i ask how old you are?

    xxx

  • froggy28
    froggy28 Astropuppy

    Posted

    Hi. I'm waiting for op in 3 weeks and was told bso too. I've been back 3 times now as keep asking to keep at least one ovary but due to my endometriosis he says it will only be a year and it will grow back on it so to have them both rather than risk of 2nd op or the higher risk my condition has for . It still worries me but I have read so much now on risks it is scary but I think again as figures from studies inc those that Dont take hrt which does increase risk. My consultant is a top specialist in the country and Im still quizzing his opinion. He also says that osteoporosis and heart problems can be monitored and prevented where ovarian problems are usually too late. All this info and I still dont know! I'm 40 so a while before actual menopause would have kicked in and the earlier the removal the longer without full blown natural hormone. Can you get appointment with clinic before op? Good Luck
    • Astropuppy
      Astropuppy froggy28

      Posted

      My surgery is this Wednesday so no time for an appointment. It was actually postponed from Monday. I don' t have endometriosis. i have large fibroids, one of which is degernating and has a very slight chance of being cancerous. The gyn/onc even said it's probably nothing.

      Regarding monitoring heart problems, I have trouble getting tested for anything because I am a healthy weight so GP says I am not at risk. I can't even get my cholesterol tested. My dad had a heart attack when he was in his 50s and many heart attacks after till he died. They were all sllent heart attacks. He never had the typical symptoms like chest pain and pain in left arm and shoulder. He didn't know he had a heart attack until after when the doctor told him.I have also read that women often don't have typical heart attack symptoms and women with heart disease are more likely to die than men with heart disease because their symptoms are ignored and they are told they have stress, indigestion, etc. My grandfather died of heart disease when he was in his 50s. The consultant at the assessment did take my blood pressure (which is low) and did do an EKG. She said they normally do them for people over 50, but since I am 49 and because of my family history, she would do it.

      My grandmother had osteoporosis and died after she lifted up her arm to brush her hair and her spine broke. My mother has it now and she is in constant pain and is in a wheelchair. She used to take Fosomax but had to stop because it seems you can't take it forever; it started to make her vomit constantly. She needs 24 hour a day care because she can't do anything for herself. 

      I respect my consultant. I just think I didn't give him all the information I should have at the consultation. That's why I sent an email, so I could organise all my thoughts logically. I'm relieved that doctors are used to making changes at the last minute, but I would like to be able to discuss this with all the facts before I give a definite answer.

    • froggy28
      froggy28 Astropuppy

      Posted

      If ovaries aren't affected by fibroid then you can insist on keeping them if it makes no difference to future health. Well you can insist even if it did . Just make sure it says that on your consent form before you sign for it. They can't force you to agree to something you Dont want to. Good luck for Wednesday
  • Astropuppy
    Astropuppy

    Posted

    I have no family history at all of gynaecological cancer, which is why I was shocked to be referred to an oncologist and then told that I might have cancer in my uterus, and wasn't thinking very clearly at the appointment. If I had been told I have a heart conditon or diabetes, both of which do run in my family, I would have been upset but not as surprised.
  • froggy28
    froggy28 Astropuppy

    Posted

    Are you in a position to delay and have a further consultation first or do you need to get fibroid out asap. Worse could be you end up with two ops one now and one if you have to lose ovaries at a later date. My consultant says Hrt stops increase risks of osteoporosis and heart problems to the risk you have naturally. I know its Easier to see than believe x
  • teresa2545
    teresa2545 Astropuppy

    Posted

    How large is your fibroid ?
    • Astropuppy
      Astropuppy teresa2545

      Posted

      The one that is the problem is almost 10cm. It grew 3 cm in 3 months and looks abnormal on MRI. I have two or three others that are 6 to 8 cm I think, and too many small fibroids to count. I am a small person, 5 feet tall, 7.5 stone and look pregnant.

      I have read studies saying that removing your ovaries increases risk of heart disease, osteoporosis and cognitive impairment, even with HRT and even after natural menopause.

      Then again, I do not want to chance an aggressive cancer spreading either.

    • Astropuppy
      Astropuppy

      Posted

      I do not want to delay. I am already disappointed that my operation was delayed by 2 days. I also really want this fibroid out ASAP in case it does have cancer cells.
    • Astropuppy
      Astropuppy teresa2545

      Posted

      49 no kids. Based on my family history, I should have at least 5 years until natural menopause.
    • teresa2545
      teresa2545 Astropuppy

      Posted

      I had several fibroids(not sure how many but the largest was 20cm(2.8kg)I am 45 and have no children.My consultant said about removing my ovaries when I saw him in Jan but I wanted time to think about it .When I saw my GP she told me to have them removed.When you haven't had children your ovaries work harder each month and they are really surplus to requirements.My Mum has osteoporosis and my Nan had heart problems.There are risks with everything.
    • froggy28
      froggy28 teresa2545

      Posted

      Have you got appointment now or still thinking. Ovaries produce small amounts of hormones into 80s which is believed useful for healthy heart but everyone is different. My Nan had hysterectomy and ovaries out at 45 no hrt and she's still going at 93 so its not a definite just a risk and like Teresa says its all a risk. I may regret taking my ovaries at 40 but what if its best thing to do. I'm just as confused. II've booked a gp appointment as can't get one with consultant and op already delayed 3 months just to get another mmedical point of view and Make my final decision.
    • teresa2545
      teresa2545 froggy28

      Posted

      I had a TAH with BSO on April 7th and i feel great I am seeing my gp on Mon to discuss hrt but i don't feel i need it.Don't delay your op too long otherwise there is more of a risk needing a blood transfusion if your fibroids get too big.The surgery gets harder.I had to have 3 months of injections post op for mine Sorry i don't want to give you more to worry about.

      xxx

    • froggy28
      froggy28 teresa2545

      Posted

      Thank you. Most people are saying they regret it and it puts doubt's in my mind. I reacted to zoladex injection with severe migraine so only had one but now worried it wasn't the injection but lack of estrogen which will happen with loss of ovaries. Will see Dr on Monday but I am more on having op than not. I do trust consultant wouldn't do this if not necessary. How is your recovery going. Do you think I'll be up to going to a parents eve at the school 2 weeks after op or am I being optimistic?
    • teresa2545
      teresa2545 froggy28

      Posted

      My recovery is going very well.Came home on the 10th and i have been out part of each day since Mon.I am just on my way home on the bus fron my Mum's now.I have been out for 6 hrs,but i don't feel tired.I just have a slight twinge.

      xxx

    • phoebewhite
      phoebewhite Astropuppy

      Posted

      Did they do a biopsy? I'm assuming not or they would know if it was cancerous, I had a biopsy and was told I had a Grade 1A endometrial cancer and as cancer of the uterus can spread quite quickly (not always) to the ovaries, I had everything removed, I am older than you so had gone through menopause already so wasn't in the same position as you are, I would want to know if cancer cells were definitely present before going ahead with the BSO as well, trouble is, if they leave your ovaries and then discover cancer cells, you may have to go through surgery again to remove them as well, phone again and ask to speak to your Gyni himself, say how concerned you are.

      Good luck.

    • Astropuppy
      Astropuppy phoebewhite

      Posted

      No. There would be no reason to do a biopsy, as it is just one particular fibroid that might contain cancerous cells.If they biopsied cells from another part of my uterus, they could find nothing and I could still have cancer. The problem is with the fibroid itself.

      The only way to tell is by doing a hysterectomy and then checking after. I am happy to get rid of my annoying fibroid- filled uterus.

    • Astropuppy
      Astropuppy

      Posted

      I've already had a chest x-ray and a CT scan to see if anything has spread to other parts of my body, and so far no.
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