OC re occurance stage 4 - pelvic extentuation

Hi Ladies, I am new here and not used to asking for help but I am hoping to get some feedback from anyone that has had a pelvic extenuation - my OC has returned for the 4th time as stage 4 and I am currently under going 6 rounds of chemotherapy, Carboplatin & Paxlitaxol but am told that probably the best option would be to go for the pelvic extenuation surgery afterwards. ~ However I am finding it hard to get my head round the consequences of the surgery and changes it would make to my life. I need to get as much info as I can to help me understand what life is like living an active life with stomas. I'm someone who likes to do their own DIY and landscaping the garden etc. Any help and advice would be much appreciated Thank you. Lianne

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  • Hi Lianne,

    Don't have that particular experience, but just wanted to wish you well,I'm sure there will be someone here to help you.

    I am a DIY er as well,have done 4 houses and gardens up since finishing chemo, so, life goes on,but no experience of stoma,

    You sound like a strong lady,so I'm sure you will cope,

    Lots of love and best wishes,

    Carole xxx

  • Thank you Carole, I like to think of myself as a strong lady and up to now have been able to treat my OC as something that needs to be addressed and then we get on with living but this one has thrown me for a loop I hate the thought of having restrictions on what I want to do even at 57 I still feel I should be able to do anything I fancy doing. Hopefully some ladies can put my mind at rest xx

  • Hi, I hadn't heard of a pelvic extenuation before so googled it and found a post on the HysterSisters forum from a lady called KYhunny it is an old post but I've put it below in case you're interested.

    ----------------------------------------------------

    " I haven't posted here in a while, but I just read your post. I am the "kyhunny" that everyone keeps mentioning. I thought that I would send you a little note. I had a pelvic exenteration in June. 2005 that removed part of my colon, my bladder, surrounding lymph nodes, and half of my vagina. They ended up taking a skin graft from the upper part of my left thigh and made me a neovagina. I can have sex just like I did before the surgery. Have your doctors said anything to you about creating a neo vagina?

    -----------------------------------------

    She does say that had the surgery due to cervical cancer and that she got on fine with the Op and aftercare and was regularly chatting to other ladies about her surgery, however this post is from 2006.

    I understand that there can be differing levels of pelvic exteneration surgery and not a one size fits all. There also were other ladies who'd had this surgery and a couple of them mentioned the Royal Marsden however most of the posts were older too. All ladies said they got on OK after their surgery.

    If this reply is not what you expected then I will edit or delete it, I don't want to worry anyone.

    Hopefully you'll get more responses from ladies who know more than I do.

    Take care

    Clare xx

  • Thank you for that Clare, it helps to know there are other places to look. I am planning on going to The Royal Marsden for their input re the surgery, I am hoping that there are some ladies living with Stomas that can give me some in sight into the day to day living with them as that seems to be my biggest stumbling block as far as accepting what is being suggested.

  • Hi Lianne,

    I'm sure you will get better advice than me,but I am one that doesn't want restrictions either and Iam 3 years older than you,just fight your corner and I wish you all the best

    Carole xxx

  • This is the first I've heard of this too, and while it does sound radical, if it can be curative, it's certainly something to consider.

    I found this page with a series of videos from someone who had one. I watched a couple, and it's good to hear her experience, to better understand life with this.

    healthtalk.org/peoples-expe...

  • Lianne, I had a temporary colostomy for 7 months after a radical open abdominal hysterectomy when 14" of my sigmoid colon was removed and my bladder was resected. The hardest part for me was that it herniated and protruded from my abdomen and showed under all my clothes. I am a small person. In winter I could pile on layers to cover it up but in warm weather there was just no hiding a rather large bulge. I did not mind changing it frequently, but it did kill my sex life. However, if I were told a permanent stoma was necessary to save my life, I could learn to accept it. I am stage 3C currently in remission. You can read more details in my profile. Best to you! Tesla

  • Hi Lianne

    I too have a reoccurrence of stage 4 OC. I had a total hysterectomy in Aug 2015 and before surgery asked to see all my scans and have explained to me the possibility of bowel surgery as I didn't want a stoma bag as I felt at the time it was too much to cope with on top of my cancer battle.

    My surgeon went through all my fears and arranged for me to talk to a stoma nurse and meet people living with it to understand how they coped with it and cancer on a daily basis.

    My ultimate decision which was right for me at the time was to have as much of the cancer removed with the hysterectomy as from the pelvis, and cervix without the additional removal of bowel at the same time.

    My surgeon was fantastic! He removed the majority leaving me with a small section of cancer on the bowel and cervix without the need for a stoma, and the remailing cancer was then treated with the chemo drugs carboplatin and taxol. This kept it at bay for over 15 months and although there is a small mass returned again in october 16 my cancer is non curable but still controllable with a smaller amount of chemo or possibly radiotherapy and I live a normal life when I am well doing all the things I did before without the added complication of a stoma.

    My advice for you is to talk open and honestly with your surgeon and cancer nurse specialist and talk to a stoma nurse and other patients with one too.

    Everybody's experience and limitations of what they think is a major obstacle to their normal life for them is different.

    Sending you hugs and positivity

    Gabsters xx

  • i don't know anything about this but I did know a lady who had a stoma and bag after her bladder was removed. She worked as a stoma nurse at a hospice and until she mentioned that she had a bag herself you wouldn't have known. She was a very fit and active lady and was still working full time.

    I hope this helps

    Diane

  • Hi. I had an emergency op JUly 2015 due to perforated bowel a consequence of oc which I was, not aware of at that time, it saved my life for which I,m grateful. I woke up with a stoma I have coped very well with it so far. No real problems. I have adjusted my wardrobe to suit and carry on as normal I am in my sixties. Hope this helps, but we're,e all different. Wishing you good luck.

  • I don't know what a pelvic extenuation is. I will have to look that up. I will get back to you.

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