Recurrance: Hi everyone Could I please ask - is... - My Ovacome

My Ovacome

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Recurrance

38 Replies

Hi everyone

Could I please ask - is it true that the longer you go without a recurrence its less likely that it will happen ?

I’ve read that the chance of a recurrence decreases after 5 years?

38 Replies
WorriedHusband profile image
WorriedHusband

Yes.

“Patients who had already survived 1, 2, 3, 4, or 5 years had a probability of 3 more years of recurrence-free survival of 63.8%, 80.5%, 90.4%, 97.0%, and 97.7%, respectively.”

According to this study:

medscape.com/viewarticle/83...

in reply to WorriedHusband

Thank you I’ll take a look at the article.

Caroles1 profile image
Caroles1

Don’t know Hun, I’m sure someone can help you more than I, but I flipping hope so, am coming up to 4 years and am keeping my fingers and toes crossed.

Never say never, but I could get knocked over by a number 9 bus tomorrow! Just hope I go in a peaceful way and would want that for anyone,

Lots of love,

Carole xx

in reply to Caroles1

Thank you!

It’s true anything could happen to us all at anytime.

I’m 2 years and with each passing month I try not to think about it all. But then bang it hits you again !

Caroles1 profile image
Caroles1 in reply to

I was like that at 2 years, but now I rarely think about cancer, only when I have a check, then I get myself up the wall, have one in 10 days😬

It will get better....my mantra is “get on with living”

Good luck to you,

Carole xx

in reply to Caroles1

I don’t worry on a day to day basis.

Apart from issues with bowels I feel back to normal. Sometimes I can go days without giving it a thought. But sometimes something reminds you of all you’ve been through and the doubts start again.

Caroles1 profile image
Caroles1 in reply to

Blessyou😘

Zena41 profile image
Zena41 in reply to

You sound like me x

babyboy1 profile image
babyboy1 in reply to Caroles1

Well done Carole!xxx😀💗😀

Michael212 profile image
Michael212

Hi Laurelsx,

I hope you are asking this because you have survived 5 years, because the answer in “Yes” :-)

Moreover, the worse your initial prognosis, the greater the improvement will be after surviving x years.

However, do not trust any estimate of prognosis that is given as a single number. Single numbers are very misleading, because they are averages, and you are not average. Some people will be lucky, and do better than average; others will be unlucky and do worse than average.

If you look at the article that WorriedHusband pointed to, you will see that it gives single figure estimates of prognosis. This is highly misleading, because they hide the huge uncertainties in these estimates.

So, I would suggest you disregard any prognosis, unless it includes information on the worst, average, and best outcomes that you could expect.

Please let us know if you find any prognosis information that includes a discussion of the uncertainties — I have been looking for quite a while now without success.

I hope your prognosis turns out to be on the lucky side.

Michael

in reply to Michael212

I am 2 years clear. Was stage 3b.

I’m still looking for information but probably shouldn’t. What will be will be and I have recur I’ll face it. If not I’ll keep smiling 😄

ZenaJ profile image
ZenaJ

I don't know Laurel but I hope so. I've nearly done the 5 years and was worried about what happens after that and when I asked was told they say 'good luck and goodbye'. My doctor said he would give me a CA125 blood check every year which is better than nothing and put my mind at rest.

Some days I forget altogether that I ever had cancer but it never really goes away. For me every little thing I get wrong now I think it's cancer. This is so unlike me as well.

What I'm really hoping is I live to be at least 100 and die in my sleep in full health. Of course, that's what we all wish for.

Good luck, Zena x

in reply to ZenaJ

I think when the check ups are only 12 weeks apart you don’t get chance to completely forget. You have that little nugget of doubt when you have the CA125 then after the app I can fever again.

Hoping when it goes to 6 months it will givens longer before the worry starts again.

You’ve done brilliantly. Must feel good to nearly reach 5 years.

ZenaJ profile image
ZenaJ in reply to

Thank you, I certainly do feel lucky x

babyboy1 profile image
babyboy1 in reply to ZenaJ

Hope I can be like you Zena when I've finished treatment!xxxDawn 😀💗😀

ZenaJ profile image
ZenaJ in reply to babyboy1

There's no reason why not. xx

Zena41 profile image
Zena41 in reply to ZenaJ

We have the same name so we better have same outcome 😂

lesleysage profile image
lesleysage

Hi Laurelsx,

I'm comfy with Michael's view that any prognosis should be joined with the uncertainties. My GP, on the second recurrence 5 years ago told me that my only job was to "focus on growing healthy cells" as this would ensure my body gave the medics the most possible options for killing the next recurrence....it has not come so far and am 59 months since completing the second chemo regime.

I wonder too if the type of OC we each have has a bearing? Mine is clear cell carcinoma and I was told last year by a very senior gynae consultant (when at 46 months remission) that clear cell rarely returns after 30 to 36 months. That gave me such a boost.

Like Zena I'm now having the occasional days when I am, genuinely, getting on with my much more gentle life pace than before cancer (BC days) without feeling this fear is 'sitting on my shoulder'; I still have 6 monthly CA125s but am 'weening' myself to longer and longer time between each.

So my wish for us all is to grow healthy cells, enjoy constructing our new post cancer life and, like Zena, hope this goes on till we're 100! I know, sadly, this is 'pie in the sky' but equally that was what most of us prepare ourselves for....and we cannot know...

Warm wishes...even on such a hot day here.

Lesley

in reply to lesleysage

I think you are right. We all need to focus on growing healthy cells. Enjoy life in the moments we can.

It’s reassuring to read about all the options that you could possible use if and when there is a recurrence.

And to be honest there is very little we can do to change the paths our life follows.

lesleysage profile image
lesleysage in reply to

Couldn't agree more. We draw some short and some long straws.

L xx

tutti profile image
tutti

I have been described as a very unusual case because I had four recurrences then nothing.Started in 2000 with stage 4 then 2004,2006,2007 and 2010.Since then no sign of cancer and CA125 averages out at 7.Ihave been left with significant problems from surgery and chemo but still here at 67.

Vivxx

coksd profile image
coksd in reply to tutti

oh wow that gives me hope I am stage 4 diagnosed November 2017 thanks

babyboy1 profile image
babyboy1 in reply to coksd

Gives me hope too! I was diagnosed stage 4 February this year!xx😀💗😀

in reply to tutti

Wow Viv that’s amazing.

Like has been said there really is no knowing what could happen and who will recur.

It’s made me feel like I just need to move on and not focus on the what ifs.

lesleysage profile image
lesleysage in reply to tutti

Fantastic - are you aware you have done anything hugely different which could have helped this?

Keep going, lass!! Lesley

LittleSan profile image
LittleSan in reply to tutti

Wow! That's fabulous! X

Zena41 profile image
Zena41 in reply to tutti

Wow u beat the odds. It just shows you doesn’t matter about stage x

Martina18 profile image
Martina18

I am clear cell so maybe it's different but I was initially told that my chance of recurrence was highest in the first 3 years. I also thought I heard along the way that if I could make it to 5 years it would probably not come back. Well last check (I am 4 years out of chemo ) the doctor seemed to reverse his thinking and said the chances of recurrence with clear cell anyway does NOT really go down. I left totally depressed and not sure what to think as another oncologist I see periodically said the same thing. The best I could get was a 20% chance of recurrence. Forever. And I was stage 1c/2c. I try not to focus on it but it's really really hard. I am still planning to have a celebration if I get to 5 years (and it will coincide with my 25th anniversary so all the better) but don't think the worry will ever lift. Best of health to all of us!

in reply to Martina18

There really is no reassurance or answer is there.

One day at a time and making the most out of each and every day.

Facing what will be if or when it comes.

4 years is great.

I don’t suppose anyone will not worry but the answer from you all is not to focus on the negatives.

CallmeMum profile image
CallmeMum

Hi lovely

On paper the answer is yes that’s correct, however everyone is different some people can have years of no reoccurrence and yet others can reoccur every 6 months but still live longer than predicted from the oncologist xx

Lily-Anne profile image
Lily-Anne

I’m not sure there’s any foolproof way of knowing but what I do know is everyday is precious. I was told I was curative six years ago but it wasn’t to be. There are women who have had many years without recurrence, recently someone I know 20 years clear and its back. Stats tell us more than 90% do not survive past ten years. But even with that knowledge having cancer doesn’t mean you can’t have something else go wrong

I wasted a lot of time waiting for warning signs and for it to reappear

Love to today for tomorrow is promised to no one

LA cx

lesleysage profile image
lesleysage in reply to Lily-Anne

Wise words, thank you. Lx

rossnbren profile image
rossnbren

Good Morning Ladies...Is the time frame from the diagnosis or completion of treatment?

in reply to rossnbren

My understanding is from last treatment to first confirmed recurrence, eg scan report

rossnbren profile image
rossnbren in reply to

Thankyou.. I know we can get a bit fixated on these things but I like to know😉

LittleSan profile image
LittleSan

As others have said, seize the day and let the future look after itself. My mother had OC and never recurred. I was diagnosed in 2011 and have had 2 recurrences. Same cancer, same genes but massively different pathways. Just illustrates that statistics give trends not accurate predictions for individuals. Mindfulness techniques taught during counselling help me loads. I let myself have 'what if' moments then actively think of them filed at the back of my mind and bring good thoughts to the fore. Takes practice but works for me. Xx

lesleysage profile image
lesleysage in reply to LittleSan

I've also found mindfulness very helpful, since just after my first diagnosis 7 years ago. My husband finally tried the 'Headspace' app about 7 or 8 months ago and continues to find it really useful in 're-framing' how he handles his feelings and sees his thinking as separate but integrated...if I'm making sense. I am certainly experiencing the benefit of how he is shifting.

Enjoy today L x

babyboy1 profile image
babyboy1 in reply to LittleSan

One size does not fit all on our cancer journeys! We have to seize the day!xxxDawn!😀💗😀

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