Anyone asked the prognosis question and glad they did?

Hi Hop5

I think that prognosis can be a tough one. Could you sit down with your CNS and talk about prognosis- not the actual prognosis- but the benefits and draw backs/limitations of knowing perhaps?

You are making plans and it may be helpful to know if they feel that it is a good time to make such plans. With prognosis it can be really hard to predict even for the doctors who know you well. You have had a good response to treatment and that gives some time to enjoy life. I think that is what I would do. If it does become active again, then I would deal with it, if and when it happens. There is so much uncertainty with cancer so I sort of go with the flow a lot of the time. 

For me a conversation would go along the lines of what would happen if it became active again and what treatments would be available. I would talk through your plans about taking early retirement and planning your holidays and see if they think this is a good option. So you would sort of get some info without asking directly. 

It's a really personal decision to make and this link may help.

What is a cancer prognosis? | Macmillan Cancer Support

Hope this helps

Jane

Thanks so much for this Jane. Very wise words again. I am going to write these pointers down and ask at my next face to face appointment  - the what happens next meeting. I have seen some people on here have asked for a prognosis and been given a timescale, I am not sure I would handle that very well but I also don't want to just plod along and then it's too late to do things. It is a very difficult one. 

Hi  

I'm very sorry to read that your cancer is incurable and that your staging is 3C2. I am Stage 4b and incurable. My profile is on if you'd like to read. I have had palliative chemo and my cancer is stable and has been since end of treatment Sept 2022. 

I took ill health retirement from the NHS this time last year. I am now 54. I couldn't have continued to work as I have problems with brain fog, concentration and fatigue. I have also cashed in personal pensions. I needed forms completing by my GP confirming my ill health due to my age.

I asked for a prognosis and it was thereabouts of what I'd anticipated (in my profile). However, everyone and every cancer is different. A prognosis is only a prediction, an educated guess, based on the oncologists experience.

If you would like, you may want to join us in this group  Living with incurable cancer forum - patients only 

Everyone is friendly and supportive, we understand each other even though we have different types of cancer. Best regards.

A x

Hi SisterMoon,

Thank you so much for your reply. You are so brave to have asked but I get it, I feel I need to too but am nervous. At the moment I'm looking forward to a break from chemo and hoping end of treatment scan is good. Ive read your bio and you've certainly been through it but all sounding really positive. I think I will join that group, thanks so much xx

Hi Hop5. I hope you are keeping well. I have a similar diagnosis and have been offered radical chemo and brachytherapy. Is this something you are having? I think it will be over a period of 6 - 8 months. Take care x 

Hi Anna,

I'm doing very well thank you. I've had complete response from chemo and have no evidence of disease in lymph nodes. Because of this I've now been offered a course of radiotherapy and brachytherapy which I start 2 April. How are you doing? X

Morning Hop5,

Thank you for your reply. Good news about the chemo working for you ️ x Seems like the goal post move quite a lot. Just waiting for appointments.

Did they give you a size of lymph nodes and which one affected at the time?

Lots of medical stuff x

Hi AnnaS,

I had a aortocaval lymph node measuring 15mm x 9mm and left hilar lymph node measuring 12mm x 9mm. I am POLE negative and Mis Match Repair Positive. Hope this helps. Ask me anything x

Thank you Hop5,

Very helpful x all. I am P53 molecular classification x 

Mine are now 8x4 and 8x5. I have P53 mutation. It is all very medical and it is only now - nearly 9 months since diagnosis that I am starting to understand it all. There are some very knowledgeable people on here - Jane, Marmite, KT89 and Sister Moon to name a few x