My Mum is currently in a dilemma regarding possible surgery to remove her one remaining ovary as they have said it will almost certainly involved removing part of the bowel. This would involve a stoma (temporary or permanent) which is making her not want the surgery. The surgeon said surgery would give her about another 12 months or more. Her ovarian cancer had spread but the chemo has been very effective so she is generally doing well. She feels quite certain she isn't going to die any time soon and thinks she will be fine with just the chemo.
Does anyone have any experience of this.???
It is very difficult to find anyone to contact and I feel with are met with a wall of silence everywhere we turn. No support groups locally either.
Thanks, Em
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Em123
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I am sorry that your mum is faced with this dilemma ...my view is that I would take the advice of the oncology team they afterall has her medical records....but no one can tell her what to do as ultimately it is her decision.
You could ring the ovacome helpline for advice tel 0845 371 0554
I'm with Gwyn on this. There are so many things to consider when you're offered treatment that it would be just about impossible for anyone really to do much more than send love and hugs though I guess it might be helpful for us to say what we'd do in the circumstances. For me an extra year would be very attractive even though it might mean having a bowel re-section but then I can imagine the idea of having a temporary or permanent colostomy would make me think more than twice. I have several friends who have had colostomies and some women seem to do really well with them. Perhaps someone who has experience of them might post up to reassure you Mum that it is possible to live well with a stoma.
I really do think the best people to talk to is the team who will be doing the op, and your mum might have a sympathetic Mac nurse or CNS.
I'm really sorry I don't feel I've been much help here other than to give you a hug from afar and one for your mum too.
Thank you for your replies. We've found it very difficult to obtain impartial advice from anyone at the hospital and there are no local groups.
I do hope someone who has had experience with a similar surgery is out there and might get in touch. So many people seem so afraid of speaking up due to constraints around cancer treatment. The therapists she sees say they can't talk about it for fear of repercussions. A wall of silence just isn't helpful to anyone is it?
Best wishes, Em
This is a difficult question and whenever questions of this sort arise I always try and wonder what I would do for Sandra,s best interests. It is my belief that scans sometimes give misleading images, I know this because Sandra,s bile duct was worse than first thought. What I,m trying to say is until they perform any surgery they are never sure what to expect. Its quite possible that the ovary can be removed cleanly or perhaps with a minor resection of the bowel and negate the need for a stoma. What seems clear is to rely purely on chemo, offers no assurances. The oncologists should offer you better advice. Love Paul xx
Thank you for your reply. Yes, it may well not require bowel removal but unfortunately it's not possible for the surgeon to take a look first so that Mum can decide either way. She won't know until she has woken up how far things have gone. She did ask if she could just have the ovary removed even if he found it had spread to the bowel and he said 'no'. I personally think a 2nd opinion may be her best bet.
Best wishes, Em
Hi Em... I suppose in the end, your Mum will have to do what she thinks will work best for her. However, most of us here have the cancer spread. In fact, 70% of Ovarian cancers are found when the disease is either Stage III or IV. I was told in September that I'd probably have to have a stoma, but I didn't. It wasn't what I wanted but I know there are others here who have and that gave me the strength to get through it all. Maybe this will be something I'll have to have in the future and I'm very grateful for the guidance I've received from friends here.. I too feel that your Mum could talk it through with someone from the medical team and also with Ruth or Susan from the helpline. I think that the offer of an operation is there shows that the specialist thinks it's an option. The surgeons will have told your Mum the benefits of the operation and the risks too. When I had another op in September, the surgeon wasn't really sure what was going on from the CT. Microscopic disease is invisible on CT.. Also, areas such as the small bowel mesentery aren't really easy to see either. Once they get a look, the surgeons will at least be able to tell your Mum exactly what's going on. However, as you say, she could by that time, be fitted with a stoma. Surgeons always explain about the stoma scenario and, yes, some people do have them fitted, but there are others who don't. This must be a very trying time for your Mum and her family but in the end, I feel that it has to be her decision and if people support her in what she does, it would help so much. It's hard looking into a situation but I know how hard it is. When my own Mum was ill, I was beside myself and only wished I could be ill myself instead. Love T xx
all v helpful information. Her cancer had spread to various sites but the chemo has been very effective, hence the option of the op which wasn't an option at first. I certainly think we need to see someone else to talk this through. Thanks again.
Hi Em. Sorry to hear mum is facing a dilemma at the moment but my advice would be to take the surgery. I have a stoma, following major surgery in November 2012 and can honestly say I hate it!!
But a good friend on this site gave me a saying, which I repeat every time I get angry with my stoma, and that is "bag or box" and I will take the bag anytime.
It's good news that the surgeons are considering surgery for mum and that the chemo is doing the trick. The surgeons may go in and find that they can remove the ovary without the need to touch the bowel, but they need to give worse case scenario so that you are prepared.
Whatever mum decides I am sure she has a loving daughter who will support her and stand by her decision.
Please let us know how she gets on. Sending love and hugs from afar Izzy xxxxx
I had part of my bowel removed during my first cancer surgery (five years ago) along with complete hysterectomy, part of my rectum and four tumours. I was told that I might wake up with a stoma them but I didn't. I had surgery again last September to remove three further tumours and as they were attached to my stomach and my bowel I had another part of my bowel removed along with 10% of my stomach. I was again warned that I might be left with a stoma, but I wasn't. I think the surgeons have to warn you about the possibility just in case. I agree with what Izzy wrote though - I would choose 'bag over box' any day.
I recovered very well from my surgeries and am currently 'no evidence of disease' following my surgery in September 2013 and am back at work, exercising, holidaying etc.
Happy to answer any questions you or your mum may have.
Great to hear how you have bounced back from surgery, it must have been so stressful at the time. Its amazing that your energy has returned. Thanks so much for taking the time to reply to my post as all this info is so useful for Mum to read to help her decision.
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