Not had surgery

[nikki9]

Hi you lovely ladies what a support you are. I am wondering if there are any ladies who were not given surgery xx

[SandyL]

Hi Nicki,

When I was diagnosed with Stage 1V Ovarian cancer in April 1999, I also had pulmonary embolisms and so surgery was deemed very dangerous for me at the time. The idea of having 3 chemo's before surgery, was to reduce tumour load and to allow the blood clots to be reabsorbed into the body.

Three chemo's later, with CT's after each treatment showing the tumours had reduced in size, along with a Ca 125 that was dropping very quickly, it was decided to schedule my surgery. Back then it was quite rare for women to have chemo before surgery, but when my Dr talked to me about this, she did say that they'd had good results with doing it that way.

Nicki, is your situation similar to this - where for safety reasons surgery is being delayed? Or, have you been flat-out told you're never going to have surgery ... at all? Quite often, if the tumours are difficult to remove, chemo is recommended (first) as a means to reduce the size and amount of tumours, before doing surgery.

Are you going to be having chemo? I'd like to hear more about your story.

Take care ...

Sandy.

[nikki9]

I also have stage 4, the onc said that I had some cancer cells on my liver which after chemo were dormant. I was told that they wouldnt do surgery because it could reactivity the cancer cells. I also had 6 sessions of carbo/taxol which gave good result ca125down from 11,000 to 17. Unfortunately it returned after 9months and I am having carbo/gem which seems to be working. I did ask my onc if I would be having the op but he said if it had been possible they would have done it in the beginning. I also have pulmonary embolisms and have clexane injections each day. I really wish I could have had the op. thank you so much for your help and good luck x

[jurassic]

Hi Nicki,

I was diagonised in June 2009 CA125 3600 I had 3 sessions taxol and carboplatin which bought my CA125 right down then a laporoscopy when they found it had spread to ommenum,bits on the liver,diaphragm so couldn't operate and said never would be able to. but as chemo worked it was better to just have that alone.

The following summer CA125 had risen so had 6 more sessions of just carboplatin which bought the CA125 right down the same happened the following summer.

It came down so low and CT scan very good that they decided to debaulk to help the chemo even more. Unfortunately they found more in there than had shown up in the scan so had to abandon the attempt.

I think I would ask your onc. if the reason you can't have the op. is because of the pulmonary embolisms.

Good luck.

Marilyn

[VickyEm]

Hi Nikki

I have been told that surgery is not something that will be offered to me (other than for palliative needs). The way they explained it to me was that unless they could remove all the cancer, which they did not think they could, it was best to just rely on chemo for maintenance.

Vx

[nikki9 in reply to VickyEm]

So glad I have found someone the same as me that can't have surgery..I thought I was the only one, I suppose we will have to relie on chemo . I find it so hard to come to terms with it all, it is on my mind all the time. Thank you again good luck nikki xx

[VickyEm]

Nikki, I was very depressed about the whole thing; to the point that I thought I may as well be dead now and get it over and done with. I put my life on hold, thinking I could not do anything (change jobs, go on holiday, move house, for example) because if I had to have treatment then that would ruin it.

I am not saying I don't think about it at all, its still there and on some days I cannot get the nasty thoughts out of my mind, but I have definitely found that being busy helps. I am trying to do as much as possible while I still can, as I am otherwise fit and healthy. I recently joined the ramblers association and go on 10 mile walks at the weekends, finishing in a nice pub. I am studying again (accountancy) and hope to change jobs soon, and I am going on a balloon flight on Saturday. (Its in essex, so if we go over rayleigh, I'll give you a wave!!!)

Vx

[nikki9]

Well done I know it is far better to be positive as none us know what is round the corner, I think it is the treatment, I couldn't have my 4th chemo today as my platelets were too low and I have a scan this evening to see how everything is doing. I know how you felt because I was scared to even buy a pair of jeans.. I am a lot better now but do have bad days. Please give a wave as you go over Rayleigh I will be routing for you. Thank you so much for your reply love nikki x

[VickyEm]

Nikki, its so disappointing when your bloods prevent you from having your treatment. I burst into tears when it happened to me. I do hope you don't have to wait too long to get your 4th treatment and that your scan shows the chemo is doing the same to the oc as it is to your platelets.

My balloon flight got cancelled because of the high winds (I was actually quite relieved that I would not risk ending up in the north sea.) I shall reschedule my flight and hopefully pick a calmer day.

Take Care

Vx

[nikki9]

hi vicky i bet you were glad your ballon trip was cancelled you are very brave anyway to do it, i am afraid of heights but i bet the view is wonderful., hopefully starting 4th cycle this thursday. i just wish it would stop raining as cant even get to go into the garden. cheers nikki