Told 'no cure' after first recurrence. - My Ovacome

My Ovacome

17,621 members19,897 posts

Told 'no cure' after first recurrence.

Hectoria profile image
8 Replies

Is this NHS policy? It is just so depressing, surely some people have beaten this thing even if it has recurred a few times?

Have been offered trial with Avastin, but onc admits she would not be pushing for chemo just yet as I feel pretty fit and healthy.

Written by
Hectoria profile image
Hectoria
To view profiles and participate in discussions please or .
Read more about...
8 Replies
TrishLey profile image
TrishLey

Dear Hectoria,

Basically with a reoccurrence it is deemed incurable but treatable. There are plenty of ladies out here living for years who have had a number of chemos after reoccurrence. It may seem depressing but the reality is that I have had OVC for the last 4 years and I am doing well. I feel that I am beating it every single day. Stay positive if you can. You seem to be doing well so good for you.

Wishing you all the best,

Trish

Whippit profile image
Whippit

Please don't feel it's all bad news. Like Trish I have had ovarian cancer for 4 years. I've had two recurrences so far and two lines of treatment but looking back they have been four amazing years meeting some incredible people and doing new things that have been very interesting and inspiring.

I don't suppose it's an NHS policy that there's no cure after a recurrence. I was never given the impression I had any hope of a cure at all and far less that I would enjoy four amazing years.

It sounds very positive that there's a trial out there for you with Avastin. A breakthrough will come through one day and the disease is seeing better and better survival rates as the years go on so there are pockets of hope for us all. It's brilliant you feel so fit and well. I've always been told that's a good sign and a good reason not to restart treatment too soon. Long may this continue for you.

xxx love Annie

Hi there, just to let you know you can live a life with recurrence, think of it as the same as high blood pressure which has to be kept under control, that is how my onc explained it to me and that is how I have lived my life once I was told it was a chronic illness. I did get Gemzar and Avastin last time around, finished Gem last Feb and still on Avastin every three weeks. There is not a huge problem having Avastin over here in Ireland. For me, the side effects have been runny nose sinus issues hoarseness, a little blood nose but nothing alarming so I would say for it. It keeps the tumours stable and gives your body time to recover from previous chemos. I know Avastin is not available widespread in UK and I thought the opposite applied here but if the Health Authority Budget in a particular area is small, it is not really offered to patients who live in that area and they have to travel to get it. Hope this gives you some comfort

daisies profile image
daisies

Hello, like the others, I also live with recurrent OC and have been on Avastin for nearly 2 & 1/2 yrs now.... so there is hope for dealing with this as a chronic illness. While it will never be "cured", I live in hope that a new drug will come on the scene that will "cure"...but in the meantime, I try to look on the positive things in my life.

I LIVE, LIVE LIVE each day and when tired, I rest.

Is there a cancer support group in your area that you could talk to, or do you have access to your Liaison Nurse - so that you can talk about your feelings.

So take any drugs, trials that are offered & I can only send you kind wishes.

Daisies xxx

linja profile image
linja

Hi Hectoria, Please take the Avistin it is very good. I'v had the chemo 2 yrs ago then went onto Avistin and was fine. Unfortunately some growth has come back but back on chemo feeling fine (well the usual aches and pains in the joints and the constipation but know how to deal with them now hopefully). Doctors are doing wonders and the NHS is wonderful even though some people in various Parties want to run it down.

Meryl1 profile image
Meryl1

Hi Hectoria.

Well still here after diagnosis in 2007, 8 years on, several recurrences, enjoying remission currently and just back from lovely break in France. In the interim I've travelled widely, across North America, Australia, Asia and Europe. I'm a marketing director and have worked full time throughout, with the support of a brilliant board and team. When I heard the word recurrence for the first time, after the odds suggested I was on the way to cure, I was totally devastated, in 2010. However, given the significant developments in treatment available since I was first diagnosed I would hope you would be a significant recipient of those improvements. Wishing you the very best, a long life, and a way of living with what for you I hope will be a 'chronic' illness. Hugs Merylx

shirley61 profile image
shirley61

I live in Australia, my cancer recurred last year and the gynaecologist/oncologist told me ' we can't cure this, all we can do is try to keep it at bay'

Good luck Shirann

Bimmo profile image
Bimmo

Hi Hectoria, many thanks for raising this point. It's exactly where I am now and I've been desperate for a more positive reading of the situation. I finished my first bout of chemo last June and seemed to be doing really well so it was a dreadful blow to be told that I had a blockage in my bowel caused by the disease progressing. Suddenly I went from being told I had constipation to being a whisker away from having a stoma. The speed of the turnaround is frightening and I had no idea that any recurrence can't be cured. I agree that to be told you're incurable is profoundly depressing. One of your responses suggests that it should be presented to us as a chronic illness (thank you Suzuki) which I think is a great idea and so much easier to get your head round. Maybe we should all suggest this to our oncologists.

I'm also delighted to hear such positive stories about living with the disease. I'm so glad I found this forum!

Joan Bimmo x

You may also like...

To be told your cured

I’ve just read a great blog in which the consultants said she would cure her patient, which is...

first recurrence - experiences?

this means she will probably have to have Caelyx, Taxol or gemcitabine. I guess I'm just on here...

Recurrence after surgical spill?

concerned about. My question is......how many of you have had a recurrence after a surgical spill?...

First Recurrence : (

think I'd have to write about it again. Her onc. just called that her CT shows it in some lymph...

First recurrence

to start chemo. That leaves me in a very awful situation as the tumour in the liver could just grow...