Life expectancy

[Manchesterlady]

Hi sorry to be a pest, I have high grade stage 3 serous , and start my carboplatin next week , do they tell you how many years they expect you to survive for . 😂

[Rachael47]

I don't think they can. Everyone is different all they can say is that the average patient gets x number of years, but averages are made up of lows and highs, so it isn't much use really. I have heard of people living for more than 20 years after diagnosis, and others a much shorter time. All we can do is to make the best of whatever time we have.

[harpist_UK]

Always better not to know. They don't know for sure - nobody does! I know I surprised my onc - always better to keep positive and optimistic.

[Kryssy]

Quite agree with the girls. Why do you want to know such a thing? You may be hit by that bus later today anyway. If we all knew when we were going to die, what good would it do? The only thing you can be certain of is that we ALL die eventually. Whether it's in 50 years, 5 years, 5 months, 5 days or 5 minutes. Everyone on the planet has their time limit. Stop worrying sweetie and just LIVE with cancer. You don't want to worry yourself to death do you? And, stay away from Google!!! xxx

[Cnmart in reply to Kryssy]

100,000,000,000 recommends 😂

[Zena41 in reply to Kryssy]

Luv this x

[Coldethyl]

I haven’t been told and I haven’t asked - only you know how you would handle the news and whether knowing would have a positive impact on your remaining time. None of us have forever so I’ve found that living as much as possible in the here and now is the only way I can handle the uncertainty as well as making me focus on what matters - it would be a shame to spend the next however long fretting about dying so much that those years were wasted - when I do have a meltdown my husband reminds me that nothing is stopping me living and being happy today as none of us know what will happen tomorrow x

[Katmal-UK]

Hi. How long is a piece of string I think is the answer. I was told 'you have a couple of years'...... that was in October 2007. Still here, working full time, currently NED albeit on a trial drug and despite 2 recurrences. My mum was told no more than 5 years. Never got a recurrence and lasted about 14 years before succumbing to a new primary cancer. I agree with harpist - better not to know. (I wasn't give the choice on that one). BTW both mum and are are/were stage 3 high grade. Good luck with the chemo. Kathy xx

[harpist_UK]

guymcpherson.com/charlie-br...

One of my favourite cartoons - always worth revisiting!

[Manchesterlady in reply to harpist_UK]

Thank you for your replies, seems like an inappropriate question now , sorry. Having my daily panic attack . Waiting for my rational brain to kick in . There are some wonderful ladies on here , who have , and still are going through so much .

[greenpink in reply to Manchesterlady]

Hi Manchesterlady--- it is simply not an inappropriate question. I would say that your question is a most natural question when diagnosed with a potentially life threatening illness. I imagine many women immediately think the same --- it's what the brain does -- through evolution. Once, our ancestors calculated how long they had until the wholly mammoth in the next valley reached them. It's part of our survival mechanism and so totally rational.

So please be gentle with yourself -- there's no need to talk about your rational brain taking over. I will just say that "in my opinion" a good Oncologist will never give you a "time limit", unless it is totally obvious a person maybe, because of disease progession only has maybe a few months to live -- and even then I have known people who have gone on to live for several months more. You are starting Carboplatin for treatment, it is a good drug. I assume you aren't taking any other chemo with it? Have you been told how many Carbo sessions? Will you have surgery? There's so much to take in at the beginning. For myself: It is 6 years ago yesterday that my GP referred me for a gynae ultrasound and on May 14th I had it where I was diagnosed with Ovarian CA. After scans and a biopsy a week later I met my Oncologist who diagnosed Stage 4. She never gave me a time frame and I didn't ask, but I knew I could be treated. That's important. I've had three lines of chemotherapy, plus two major abdominal surgeries (plus one repair surgery) in 6 years.

After each "line", I have gone back into remission or NED. I finished my last chemo of the third line in December 2018. Now I'm on Olaparib, a PARP inhibitor, 16 capsules per day and my disease is under control, with a low CA125, hopefully continuing. I keep going. Statistics for survival are some years out of date and do not take account of an individual's response. Good luck Manchesterlady!

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[Manchesterlady in reply to greenpink]

Thank you greenpink

Three sessions of chemo, then surgery, then three more . I have booked myself a private consultation with professor Jason at the Christie hospital on Tuesday , after my national health one . All the same team , I know . Hopefully in a calmer atmosphere. Xx

[greenpink in reply to Manchesterlady]

Hi, I think from hearing from others that Professor Jason at the Christie is very good. I saw him speak at the Ovacome Member's day last year. My first line, through 2012 was 4 chemo sessions of carboplatin and paclitaxol before debulking surgery, then 2 chemo sessions (of same two chemos) after surgery. I was then in remission, also called No Evidence of Disease for 2 years and 7 months. I am also BRACA 2 positive. Carboplatin is a good drug for everyone and I'm especially responsive to it with my BRACA mutation. For me, ovarian cancer has become a treatable chronic disease, so far. Even though it's currently incurable. But who knows in the future?! Good luck X

[Zena41 in reply to Manchesterlady]

Hi I have these panics a lot mostly at first as the girlz will tell u 😝

[January-2016-UK in reply to harpist_UK]

😃

[Coldethyl]

I think we all have those moments - I certainly do - even though I know worrying won’t change anything , it’s all too easy to fall into the pit of despair time and again - has anyone suggested counselling to you? I know some hospitals have dedicated psycho oncology teams or your CNS might be able to access you some support - sometimes just talking to someone outside of the situation can help.

[Manchesterlady in reply to Coldethyl]

Called in the maggies center last week , I have been offered counselling at Christie’s, but it’s quie a long way from me . I’m looking for a therapist nearer to home x

[Coldethyl in reply to Manchesterlady]

Hopefully you find something locally that will help - some of the hospices offer a variety of support which is available to those with a variety of chronic long term illnessses - not just for those in later stages - my counsellor suggested a living well with cancer that both the local hospices run x

[BeeWild in reply to Manchesterlady]

Hi Manchesterlady x I have counselling at Christie and it’s a long way for me to go but boy is it worth it for me! My counsellor has given me such good advice and is brilliant! They are great as they work in a specialist hospital and to me it’s well worth the journey every couple of weeks. It also gives me a chance to pop into Maggies too x

[Sunfleury-UK in reply to Manchesterlady]

The counselling services at The Christie / Maggies are really good. Maybe an initial session might be helpful and then let them help you find the right support for you? Your concerns and fears are really natural for people newly diagnosed and the support that they offer is specific to this. Everyone I've met who has seen Prof Jayson speaks incredibly highly of him.

Wishing you hope and strength, Sx

[greenpink]

Hi Manchesterlady--- it is simply not an inappropriate question. I would say that your question is a most natural question when diagnosed with a potentially life threatening illness. I imagine many women immediately think the same --- it's what the brain does -- through evolution. Once, our ancestors calculated how long they had until the wholly mammoth in the next valley reached them. It's part of our survival mechanism and so totally rational.

So please be gentle with yourself -- there's no need to talk about your rational brain taking over. I will just say that "in my opinion" a good Oncologist will never give you a "time limit", unless it is totally obvious a person maybe, because of disease progession only has maybe a few months to live -- and even then I have known people who have gone on to live for several months more. You are starting Carboplatin for treatment, it is a good drug. I assume you aren't taking any other chemo with it? Have you been told how many Carbo sessions? Will you have surgery? There's so much to take in at the beginning. For myself: It is 6 years ago yesterday that my GP referred me for a gynae ultrasound and on May 14th I had it where I was diagnosed with Ovarian CA. After scans and a biopsy a week later I met my Oncologist who diagnosed Stage 4. She never gave me a time frame and I didn't ask, but I knew I could be treated. That's important. I've had three lines of chemotherapy, plus two major abdominal surgeries (plus one repair surgery) in 6 years.

After each "line", I have gone back into remission or NED. I finished my last chemo of the third line in December 2018. Now I'm on Olaparib, a PARP inhibitor, 16 capsules per day and my disease is under control, with a low CA125, hopefully continuing. I keep going. Statistics for survival are some years out of date and do not take account of an individual's response. Good luck Manchesterlady!

[Caroles1]

We are all different, agree with all the ladies have said.

Our bodies are different, our stages are different with all the side effects ect. and life styles, l don’t think any medical expert could give you definitive length of life.

Personally I live life to the full and do what I want when I am able and I so plan for the future😀

Worrying about what may not happen and waiting for the day won’t help, stick it on the back burner and enjoy yourself! Xx

[lorraine71-Australia]

HI, As usual the ladies have given you some good advice,I just would like to say when I was diagnose 4 years ago we were told I would not see the year out . it's not always been easy , my oncologist told me that the survival rates are improving with the new treatments on offer. As for the panic attacks this is normal most of us have been there.

Take care keep in touch Lorraine xx

[LittleSan]

I was diagnosed in 2011 with HG Serous 3b.

On my recurrence on new years eve 2014, I asked my Onc (very imminent doctor) whilst considering a trial, "how long do statistics say for this path and how long for the other path". I am now 4 months past my 'sell-by date' and doing very well.

It's so unpredictable it's not worth considering apart from making the most of every day, as energy allows.

Wishing you back to good health. Sandra xx

[Michael212]

Hi Manchesterlady

My wife was diagnosed with stage 3c high grade serous ovarian cancer about a year agon, and we have been struggling with the prognosis thing ever since. No-one gave Lynn a prognosis (or even asked her if she wanted to know), but she found a statistic in a book and it was quite devastating. What the doctors don't seem to know (or be able to explain) is that any single number is wrong. It is wrong because it is an average and, as everyone here knows, no-one is average. Some will do worse, and some will do better than the average. The range from worst to best is very wide. And, your prognosis keeps on changing: if you respond well to treatment and survive a year, your prognosis is much better than it was when you started.

The approach we have tried to take is quite simple, and often repeated in different words on this forum: plan for the worst, hope for the best, and make the most of the time you have --- which is what you should do anyway.

There are plenty of women who have started with an awful prognosis, but have survived 10 years or more. So, hope is quite rational, as well as being necessary --- although Lynn's doctors don't seem to know this and never lose an opportunity of reminding her of the worst that can happen.

Wishing you good luck and all the strength you will need.

Michael

[Manchesterlady in reply to Michael212]

Thank you Michael , the most frustrating thing is no one can give you the answers, because they don’t know . It’s hard for my husband too , he patiently sits waiting around whilst I’m having all the various tests , driving me to Christie’s. I’m sure your the same . It’s been such a devestating shock , as it is with everyone . I have moments of complete despair, and feel overwhelmed by what I have to face in the next couple of months. I do hope that Lynne is coping well with her treatment, and that you can stay strong for her. Thank you for your good wishes . I wish you and your wife all the very best of luck . Remember to look after yourself x

[airfemale]

Hi I guess every emotion you are feeling is the same as all of us have felt at one time or another. It is normal to want to know. I was the google queen and after scaring myself silly I gave up. I am well into my 6th year since diagnosis and now I just go with the flow. If it happens then that is the way it has to be. I want to make my 60th birthday which my oncologist thought wouldn’t happen. I have to go another year so I will get to 60. I know that this awful disease will end my life early but I have put up a hell of a fight along the way. Love yourself and accept that this disease is a chronic disease with many highs and lows. So in regards to a prognosis it is whatever it will be. Lots of love Sharon.

[Katmal-UK]

Hi Again

I forgot to tell your story about my darling dad...... he was diagnosed with lung cancer at the age of 49. Asked his Consultant how long he had. 'How long do any of us have' came the reply. The Consultant was a couple of years younger than my Dad. 2 weeks later the Consultant died in a tragic climbing accident...... my dad passed away 5 years ago this month just 9 days short of his 82 birthday....... see it might not have been the 'could be hit by a bus tomorrow' but similar scenario!

[ScardyCat40]

At best they can only give an approximation and it will largely depend on how you respond to treatment. For you it is still early days best advice I can give you is try not to let your life revolve around the cancer and make the most of the good days

[ZenaJ]

Not in my experience. I don't think they really know as we are all so different. I'm five years clear though so I like to think there's hope for us all. xx

[Di16]

I asked a couple of years ago if they could give me an estimate of how long I might live, & the professor at the hospital I attend said she couldn't. We are all different & in different situations. I knew a lady who lived a fairly short time, & I was also talking to a lady last year who had been treated for ovarian cancer 27 years before, & had had no further trouble. I suppose I'm almost a beginner compared with her, I've only survived 10 years so far! Di

[Zena41 in reply to Di16]

💕

[JanePW1965]

Hi Manchesterlady. My mum had the same diagnosis as you at the end of 2013 and she is still doing well and her quality of life is pretty good. She has had three lots of chemo and it knocks her out at the time but she has good long remissions and is really enjoying life. Best wishes. Jane XXX