No operation given

[nikki9]

I have asked this question before has any of you lovely ladies not had an operation to remove this horrible disease. I was told that they wouldn't operate as I had several tiny tumours on my liver and considered that these couldn't be removed as so small. I have stage 4 2c, I did ask my onc about a year later if they would operate and he said that if they had decided not to operate then they wouldn't be doing it now. I am now on my 3rd line chemo, but I feel so worried about it all. Many thanks for all your help what would we do without this brilliant site hugs to all xx

[Hidden]

Hi Nikki, Before cancer, I had had operations to remove my appendix and gallbladder and had also had a complete hysterectomy. When cancerous cells were found in the fluid in my abdomen, I had a laparoscope so that biopsies could be done to confirm diagnosis. I didn't have any ops post diagnosis because there were cells throughout the abdomen which were microscopic and there were lots of adhesions too so I still have the omentum. I'm not sure why you wouldn't have had debulking surgery but it could be that they are microscopic and widespread too. I've found that it's hard getting answers and I'm not sure if it's because doctors have limited time to spend with each patient or because of the way they deal with questions. For some of my doctors, I'm sure it's been a mixture of the two. If you're worried, I think it might be a good idea of speak to your Cancer Nurse Specialist (if you have one) by phone and ask for an explanation. Failing that, you could write to your oncologist to get a more formal reply (I've done that before myself and this has been successful). It's just a thought. Hugs to you too Nikki. x x

[nikki9]

Thank you so much , I think they were microscopic I was worried about the chances of survival not having the op. I did mention it to a support nurse and she said that they may have done the op in London but wasn't sure. Xx

[Whippit]

Dear Nikki

I don't think your consultant is doing their job if they can't give you an explanation that stops you worrying. I'm not sure I would be satisfied with the answer that the tumours are so small they can't be removed. There must be an associated reason - perhaps they feel the tumours are best left undisturbed because disturbing them might cause them to flare up? I'm taking a huge uninformed guess here! Like you, I'm finding it difficult to surmise what the explanation is.

If I were you I'd ask for another appointment specifically for them to explain the thinking. It's not that you want to demand surgery if it's not appropriate - you just want to be told in a language you can understand why they have come to that decision. That's not an unreasonable request.

In your situation I'd seek out my GP but then mine is absolutely brilliant and looks at my Velindre records and explains everything. I wonder if you could try this route?

The last port of call would be to phone the Ovacome Nurse Helpline and explain to Ruth what you've been told and ask her if she can explain the reasons . If it's not clear-cut perhaps she'd help you formulate some questions for your consultant. It's even worth writing them out on a piece of paper to take along to the meeting so you're not distracted or fobbed off.

I really do hope you get an answer to stop all this worry. Mind, the answer might be as worrying for you as the question. But on a serious note if you want to know something you should persevere.

Loads of love and luck with this. xxxx Annie

[Hidden]

Hi Nikki

I think it's a good suggestion to talk to the Ovacome nurse. The other thing you can do if you haven't already is to google 'liver resection'. There is a lot of information about when it is and isn't possible and it may help you to frame more specific questions to ask your oncologist. From what I've heard it all depends on the number and location of the tumours. I would tell your onc how much this is worrying you.

Monique x.

[leftleg1]

I too have also only received chemo and was initially surprised about this as I had read radical surgery followed by chemo offered the best results. I was told by my oncologist that my stage 4 primary peritoneal cancer was best treated by chemo alone as there was no large tumour and the presentation of the disease was scattered and patchy. They did seem to imply at the time surgery might be a possibility in the future ( at recurrance) but Ithink it is unlikely.

[nikki9 in reply to leftleg1]

Hi it sounds that my OC is the same as yours, did they say whether the outcome would be the same if you didn't have the op my onc isn't very forthcoming.

[leftleg1 in reply to nikki9]

Hi. I am not really sure my onc would answer that question either. She always says everyone is different so it is not really possible to say what will happen/ when. She has however never led me to believe that I can be cured and has always indicated it would probably return. I am currently in remission having finished first line treatment in November last year. I was frustrated in some ways that they had not operated as I was unable to access Avastin because the local criteria used by the SHA for allocation of Cancer Drugs Fund resources would only consider women with advanced OC or PPC who had already had the surgery.

[nikki9 in reply to leftleg1]

Perhaps not having the op dosent make any difference as OC seems to return in most people . I was told I couldn't have avastin it seems unfair that we can't have any drug that can help us. I am on 3rd line chemo having taxol every week for at least 18 weeks, my OC started in 2010. Good luck may your remission last for years x

[leftleg1 in reply to nikki9]

Many thanks . Sorry to hear you are having more chemo. Hope the side efffects are not too bad . I hope you can have a rest after this lot.

Best wishes

Jill

[Hidden in reply to nikki9]

I don't think it makes too much difference whether you have surgery or not as to accessing Avastin. I have stage 1V OC and can't get it as most people on here. The drug is deemed too expensive to be cost effective.

Chris

[nikki9 in reply to Hidden]

It dosent seem fair that we can't have avastin but unfortunately it is all down to money, it seems the uk is very behind in new treatments nikki