Preventative Oophrectomy or not??

Hi ... I have had raised levels of CA125 for the past 18 months, up and down between 38 and 77. I also have family history of OC (my mum who died at the age of 59). I've just seen the Gynae Consultant who has offered to take out my ovaries as a preventative measure. US scans haven't shown much, small ovarian cysts ( which have disappeared) and a fibroid. I don't have any symptoms except for tiredness, which is extreme and getting to the point I can't function properly. I've just read Amanda Jane's post from Sept last year - her situation being frightengly similar to mine. I am petrified of having the op, not because of the operation itself but because of the surgical menopause which will follow. I feel so ill and low at the moment I'm not sure I could cope with the menopause on top!! Your thoughts and advice would be appreciated ... Lxx

7 Replies

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  • Hi Lyn BT

    Its totally understandable to feel the way you do. A horrible place to be. You don't say how old you are and whether or not you have completed your family, but those two things are huge factors in the decision making process. Assuming you have completed your family then:

    Ovacome doesn't provide medical advise, but I do feel we should make you aware that many ovarian cancers originate in the Fallopian tube rather than the ovary itself.

    I had a TAH BSO aged 30. and went on to HRT. I actually had a history of nasties behind me so was more than glad to get it all out, but your situation is different.

    There are many things which you need to weigh up, but please don't be worried about the surgery itself - Simples.. (on the scale of things.) The key thing to remember is that all the scare stories about HRT are based on women who had HRT AFTER their natural menopause where as those of us living through middle years without ovaries need some HRT to keep us ticking along..(Preventing heart disease, osteoporosis etc) If you need HRT because you had your ovaries removed for medical reasons, then so be it. I have been on HRT for 17 years with no issues. Its not the drug thats a problem, its the coating your body in hormones in your 70's when it really shouldn't be that causes the issues.

    The surgery is OK, and I would catagorize it as 'awkward' and an unwelcome interruption, but with a bit of help, no big deal. The psychological benefit of having it all done and dusted was for me at least fantastic.

    Lyn, For my part I would encourage you to trust your team; Get things sorted, then get on with life, and enjoy the blessings you have rather than ponder at the obstetricals..

    I know very well how horrid this is, but try if you can to be brave, trust your doctors (they have no interest in operating unnecessarily).

    Know that we will all be with you, and here to help no matter what you decide.

    Sleep well

    Night

    Louise x

  • Hi LynBT

    I would agree with everything that Louise has said.

    I had a partial hysterectomy in 1996 at the age of 33 when my uterus was removed. I was worried about going into early menopause so decided to keep fit, take vitamin supplements, herbal remedies that have been proved to help menopausal symptoms as well as look after my mental health by meditating. I had debulking surgery on 6th Sept - 7 weeks ago to remove my ovaries, Fallopian tubes, etc & I have not gone into surgical menopause. When I asked my consultant about this she said I am one of the lucky ones.

    I am sure all that I had been doing before I was diagnosed with ovarian cancer in May this year has helped me tremendously. I stopped taking all the herbal products when I started chemo & have only continued with multivitamins.

    I was petrified of the op too especially since all my scans had showed there was nothing in the ovaries & furthermore after 3 cycles of chemo all the lymph nodes had shrunk too. I asked the consultant why I had to have surgery & was told that the scans do not always show up everything.

    I am feeling much better since the op & am really glad I went through with it. At least I know that the source of the cancer is out & I am in remission now. My CA 125 started at 65 when it was tested in Nov 2011 & went up to 267 by May this year.

    I would say listen to your medical team & if by having this op it can give you a healthy life go for it.

    Good luck with whatever you decide to do. You have to make sure you have investigated all your options & do what feels right for you.

    Lots of love, Samixa X :-)

  • Hi LynBT, I am sorry English is not my first language but I wanted to share my experience. I have a family history of ovarian cancer and tested positive for the BRCA1 gene in 2007. Following the test I was offered a prophylactic bilateral salpingo oophorectomy. I took a year to think about it and even though I was 47 at the time and I had my last period in 2006 it wasn’t an easy decision to make. I know that there is more information available today. Whatever you decide make sure that you take time to think about it. Like you before I had the operation I was extremely tided and that didn’t get better after the operation. The operation itself was very straightforward and I didn’t even need to take painkillers afterwards. I advice you to talk to as many people as possible and to read and research the subject. Have you had genetic counseling? That’s another option. One of the nurses at my hospital put me in contact with women who were faced with the same decision. Some had had the operation and some who decided against it. That helped too.

    Good luck with your decision LOL Marinaa

  • Hello Lynn,

    I too, have the faulty braca one gene, had I known this pre-OV cancer I would have had the preventative surgary without a doubt. Infact, I begged kicked and screamed to have it done but nobody was interested even though My mother died from OV on her 47th birthday (diagnosed with the cancer at the age of 44). No one was even interested in testing me for the faulty brace genes UNTIL I already had stage 2c cancer at the age of 52. If only they had listened to me and my gut instincts.

    Now both of my daughters have been tested positive with a braca one mutation, aged 28 and 31, They are both in a similar situation as yourself. They each have a child but would like more children. They have therefore been adviced to have a FULL hysterectomy once they have finished having their family and this is what they plan, no matter about age or early onset of the menopause, they both see this as an opurtunity I didn`t have and this was to avoid the OV cancer completly.

    Lynn, you haven`t told us your age - although this shouldn`t really matter indeed it does the younger you are the tougher the decision must be.

    Also you do need to be 100% sure you do not want any more if any children.

    Have you been tested for the faulty braca one and two gene that is the inherrited OV cancer gene? If not I would bare that in mind because this might help you decide what is the best way forward for yourself. IF you have the positive gene then you risk is higher it also puts you at an even higher risk of breast caner. I have an 85% risk of breast cancer aswell as so do my daughters, although we have NO family history of breast cancer anywhere. Its weird isn`t it?

    We have all been offered a full breast removel with re-construction. I will need to wait until I get the all clear after being 5 years in cancer remission. This blow of course was devestating for me because now having already had OV cancer it delays my possibility to avoid the breast cancer and all I can say now is if only I knew earlier.

    As for my daughters once they reached the age of 30 they are offered yearly MRI`s for breast cancer and once they reach 40 -45ish the MRI`s will be replaced by yearly mamograms.

    I have yearly screaning rather than 3 yearly as most healthy ladies are offered once they reach 50 and any problems in between we just contact the breast unit and we will be examed straight away, so knowing the fact that we do have the faulty braca one gene can be positive rather than the not knowing.

    Once I have the All clear I will seriously consider breast removal - I think my daughters feel this is too drastic at this moment in time, maybe they are waiting for mum (me) to be their inspiration so for them I do hope I get this chance.

    All I can add dear Lynn is to take all of these things into consideration but I really wouldn`t worry about the menopause we all have to go through it one day and the symptoms won`t last forever, maybe we can cope better when we are younger I really wouldn`t like to say. Also remember we are all so different, my friend had a full hysterectomy at the age of 45, she sailed through it, had none of the menopausal symptoms we hear about as so horrid and she has never looked back. She tells me now she can wear white trousers without any worry`s and she can afford that designer handbag once in a while after the savings on tampax and sanitary towels.

    Try to be optimistic - there are many bonuses to opt for the full surgary.

    Very best of luck to you in whatever you decide to do, but it does need to be your decision, listen to your medical team aswell and never be afraid of too many questions, we can never ask too many, even if our queries are repetative, the medical team will guide you.

    Love from Tina xx

  • Hi!

    I agree with what Louise says. It's really not so bad. You'll cope well. I had that awful, dragging, exhausted feeling before I had my op. Heavy periods, anaemia, tired all the time.....the lot! I feel so well now, I hadn't realised how low I had got. It sneaks up on you so slowly. The worry of what might happen is also draining.

    Mind you, if you have not yet had a family, that may play a part in your decision making.

    All the best, I am sure you will feel so much better once you have made up your mind. I felt as if I was on a conveyor belt to getting fixed, as soon as I was in the capable hands of the hospital team. They were wonderful!

    Love Wendy xx

  • Hi everyone!

    I am actually 50 and have two lovely healthy teenage sons! So family is done and dusted. I have decided to go ahead with the operation which to be honest doesnt concern me too much. The menopause I guess I will just have to deal with what ever it throws at me. I think I'm just worried because of the way I'm currently feeling so ill all the time makes me think there must be something wrong. I havent been tested for the BRACA 1 gene, I guess because I have only one close family member (mother) diagnosed with OC (at least as far as I know). Maybe this is something I should ask the Doctor? I have an appointment on Monday for latest CA125 result and also US scan, after that I have an appointment in November to see the Gynae again, when I can give him my decision. Thank you everyone for your advice and support it so much appreciated xxx

  • If you are going for the op anyway, having just had a total sweep out of ovaries, tubes, womb, cervix and omentum, I haven't really had nay symptoms except for being weepy which I'm not sure is because of that.

    Hope that helps

    LA

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