Question : My mind is on overdrive sorry to ask... - My Ovacome

My Ovacome

17,716 members19,966 posts

Question

Friscok12 profile image
10 Replies

My mind is on overdrive sorry to ask another question of I had got to my 6mounth check and it has come back or anybody who has did they tell any of you how long you got xxx

Written by
Friscok12 profile image
Friscok12
To view profiles and participate in discussions please or .
10 Replies
Emalou71 profile image
Emalou71

Hi again 😀 My oncologist said she would never second guess something like that! Everyone is different and whilst we have no cure there are lots of combos to try and trials to go on. Nothing is certain with this disease but whilst we have options we have hope. Xxx

Tesla_7US profile image
Tesla_7US

Friscok, I'm in US and no one has "told me how long I've got". So far, fingers crossed, my numbers are stable. I realize that could all change with the next round of blood work. So, I work hard to push the fear back every single day. I'd like to just forget about OC, but the side effects of treatment/surgeries are hard to ignore. Meanwhile, I'm very, very happy. :)

Choski profile image
Choski

Mine came back in Jan this year: approx 5.5 months since end of first line chemo.

Every woman is different so we will all have a different prognosis.

I have clear cell, have had multiple strokes, am platinum Resistent, have multiple issues caused through my disease progression, am currently suffering with a sub acute bowel obstruction, had small blood clots leading to both lungs, have malignant ascites, am pretty weak and suffer very day feeling unwell., am on multiple meds and ilifes being pretty difficult for me.

So you see why my prognosis won't be the same as yours even if we both had the same ovarian cancer type and grade. (And I know we don't xx )

My Oncolgist has said that " we'll wait and see for a few more treatments" (weekly taxol) as I "may have an up moment " . !!! Don't hold your breath!

I know approx what time I MAY have but that could change tomorrow if I suddenly improve. Unfortunately I have gone downhill every few weeks - even my Oncolcogist said to me in A&E on Tuesday (yes in there again) : "You haven't had a break"

I know your oncologist has given you a ballpark duration but it will be influenced by so much, how you respond to second line treatment, where its returned, type, genetic makeup, etc etc plus sometimes things just get better .

And that's the mystery to this cancer.

I've had a PIP award (full amount awarded) and have a disabled blue badge now. If you've not been referred to MacMillan then ask to be. I had a nurse come out to talk about pain management and nausea control and she also set the wheels in motion for me re PIP, etc. MacMillan isn't the end! But they can help so much especially to compliment your Onc, GP, and CNS.

Recurrence is hard to get your head around, I was in denial and when it really hit me .... WHAM . So I do emphasise.

I know your question was about prognosis but there's no definite answer xx

Clare xx

Nicky100 profile image
Nicky100 in reply to Choski

Oh Clare.....I am hating reading about your suffering but your unwavering bracve indominatable generous and radiant spirit still shines through, with all your help and advice to others despite the terrible time you are going through.

I just WISH I could take this away from you.

I just hope they manage to get you out of pain and somewhat comfortable. Why is this illness so horrible I sometimes wonder?

You are being thought of and am sending a huge squashy hug your way.

Love Nicky xx

thesilent1 profile image
thesilent1

No! They are not God! Keep strong. Ann xx

Di16 profile image
Di16

I was first diagnosed 9 years ago. During that time, the cancer has come back 4 times. The last time it came back straight away, & it took 4 years to get rid of it, after they operated in February this year. Last year i asked how long I'd got, & the professor said she had no idea! I know of others who have been given a time which has proved to be wrong. Di

Nicky100 profile image
Nicky100

Every person is different. And each body type different. Even if the Dr hazards a guess they can still be wrong.

I stupidly asked as I wanted to know..but I know many others who have lived years and years beyond what their Dr said. Try not to panic and live for now as best you can. Sending love to you, I know this is a scary time for you, and we are here to support you.

Nicky xx

Friscok12 profile image
Friscok12

Problem is am now platnium resistant think it cause it came back 2 mounths after carbo taxol not sure what chemo option now but she said I would not get a remmission again xx

Lily-Anne profile image
Lily-Anne

They were a bit too keen with prognosis last Tuesday, but keep fighting, there are some amazing stories here that give me the strength to take a deep breath and think just get on with life.

LA xx

Hi Friscok. As LA says, there are so many amazing stories out there. And also lots of trials being made available.

I asked THAT question when mine recurred. My onc responded brightly "Well, you could have 2 years, maybe more". I'm pleased to say, it's turned out to be the "maybe more".

When I went into my 2nd remission, I asked him THAT question again. He responded "how long's a piece of string". These medical men like their technical jargon !

Never give up hope. Keep those fighting knickers on and pulled up high !

Pauline

You may also like...

Questions

Manchester . What questions should I be asking ? My brain just isn’t working . My husband will be...

Question

When you have multiple health problems that all contribute to how you are feeling how do you tackle...

A message and a question

all of us:- You don't know how Strong you are until being strong is the only Choice you have. An...

No question...bereavement

I just wanted to let you know GrannyGrumps passed away on 12 April 2019. She had refused treatment...

To ask or not to ask that is the question? UPDATE

am therefore not going to ask the questions, especially \\"how long have I got left\\" I never...