Bad prognosis

My dad has been told similar, he had FLOT chemo, surgery and FLOT chemo last year however we found out in April this year that it's come back in his lymph nodes, liver, spinal cord and at the site of the surgery. He's been offered the same, 3 rounds of chemo, then scan and re-evaluate. 

We had quite an in depth chat with his oncologist about what is driving the year prognosis so we understand much better now why so I do think it would be helpful for you to do the same. We went with a list of questions we wanted answers to and although it hasn't changed his situation at least our understanding is that much better. 

It is a devastating thing to be told and I'm sorry your going through this. 

Thank you for your reply, I got in contact with his regular nurse who said that the palliative doctor shouldn’t have given this terminal prognosis as we are awaiting results, plus some markers have come back so he’s able to have immunotherapy added 

so still some slight hope, and added stress for no reason 

Good morning.

You are absolutely right. He should NOT have given prognosis without all evidence beibg assessed. -All- evidence.

Yes so I remember my own prognosis of between 2 years or more (RCC stage 3 locally 4, resected liver, lung, removal of left kidney, adrenal glands, tail of pancreas removed, spleen too rotten to be left inside and all the rest of it. 2 years plus. 

That was 12 years ago.

All I can say are two things: There is ALWAYS hope and these experts can get it wrong. I would already be angry with this prognosis and the berk who delivered it to you.

God bless you all.

Thank you, I really needed to hear this, and thank you for taking the time, that really means a lot

So happy you are here to give hope x 

Youre more than welcome.

One other thing to mention: Google is the worst doctor on the planet. Try not to delve deep into years or decades old research that just isnt valid anymore. Real research findings are based upon > 2024/5 cummulative knowledge and qualified opinion and empirical evidence. Google cant do any of this and isnt designed to, just terrify you at times.

And to tell you how many million americans have chilblains. The internet is US centric, so if you do delve, switch your browser to GB results first.

God bless.

Hi,

im in a similar boat to your partner. Inoperable OC due to spread to liver and bones. 

I have been told that this disease will end my life prematurely and cannot be cured and by definition this means I am receiving palliative treatment which is very different to end of life treatment although I am under the care of my local hospice who are contracted to the local health authority in my case.

i asked for prognosis on diagnosis and was told three months without treatment, and let’s aim for 12 months with treatment. I am not eligible for immunotherapy and this can make a very real difference to life expectancy.

 However the general 12 month is based in historical statistics and treatments and covers all ages, levels of fitness and does not take account of any other health conditions.

I am 61 and of general good fitness and health so. Dependent on how  I respond to treatment I could have a better than average outcome- although no guarantees!

I am 6months in and have successfully completed a 12 session Folfox chemo treatment which has gone as well as could be hoped. Based on this my latest prognosis is still 12 months but from here. I am now on three month wait and see treatment break with next scan scheduled for September.

The important thing is to eat well (if you can) maintain a positive attitude and stay as active as possible as these things work with your treatment to give you best possible chance.

I did ask my oncologist about the 12 months and it being a very round figure - she said this was the currently quoted statistic at diagnosis based on historical data, it’s also what is used by some financial institutions to allow early withdrawal of cash and benefits - I don’t think it’s a coincidence and could help many people. She did also add that nobody is likely to come after her if they life longer.

it is a terrible disease, treatment isn’t always successful or tolerated, you are open to complications and infections as a result and for 12 months to be an average there will be people who don’t reach 12 months and some that surpass it.

Try and focus on your partner being one of the latter group.

i hope that this perspective has been useful.

All the best to you and your partner 

What an excellent piece of advice and very true. I wish you the very best outcome x

Hi,

We are in the similar boat. My dad's has spread to his bones and skin and a month ago was told nomore treatment and we are 'end of life'. My dad is still eating, although things are getting stuck again and radiotherapy has helped ease the pain in his hip. Hes still walking about just getting more tired in general. 

Ita devastating when you here no more treatment! 

Best wishes

Kayleigh