How do I get them to estimate how long...

Hi Chillamum, in 2015 When I was feeling really ill and unable to walk very far and had to be put on steroids to become well enough to have cancer treatment I asked what my prognosis was, as my only experience with cancer was my brother in law passing away 2 weeks after he told me. I was told under 12 months at the appointment when they told me I was well enough to have tablets that on average work for 9 months. Going onto immunotherapy Pembrolizumab was a game changer as within 6 months it shrank everything and I became a complete responder, no evidence of disease on my scan. 

You haven’t mentioned if you’ve had a scan after starting your immunotherapy, I think when you get your next scan results is a good time to ask especially if the treatment isn’t going well, if you really want them to have a stab at a guess. A PIP claim is why some people ask as it’s easier to get that benefit if the consultant feels you have less than 6 months. My own opinion is that immunotherapy is such a game changer, and it’s relatively new, that it’s hard for them to guess. They can not tell who it will work for or not work for when we start it, and who will have bad side effect necessitating us being taken off it. You mentioned days weeks months, but as you are getting treatment every 6 weeks you can cross days and weeks off and start thinking months and years possibly. When you started your immunotherapy you might have been told how long the treatment is, for example lung cancer patients are told a 2 year cut off in treatment, with my cancer (metastatic melanoma) we don’t have the 2 year cut off, I’ve had 56 doses and a gap of a year in my treatment, but my last one (#57j is tomorrow as my previous few scans suggested it was becoming ineffective and the last scan confirms that with 7 new lymph area, but I’ve got surgery lined up and a change of treatment after surgery.

It was a weird feeling for me moving from definitely incurable to Its now gone, to oh flip it’s back, it might be just as successful again, and various other blips. It much easier but not accurate for the medics to guess when there are no treatments, I’ve heard mention that if you can see a decline in weeks they may be thinking weeks and a decline in days means thinking of days. I think you could tell them how bad you’ve been thinking your prognosis is and ask if they have better new for you while you’ve been on the treatment. If you have another reason for asking (claiming a pension early, or needing PIP?)  lead with the reason first and ask if they can help.

Hello KT. That's such a lot of good information and good, clear sense. It has helped me think a bit better about how to ask. I have had 2 scans after the first one in November that showed the cancer. The April one was amazing - a reduction of a third on the tumours. The second in July was inconclusive - or, at least, the consultant wasn't giving me anything useful to go on. Some tumours bigger, some smaller... And a lot of shrugs (she's Spanish maybe? - given to eye contact & shrugs but not many words - very good at avoiding questions). My next scan is next Friday and I see the oncology team the week after. I hope the results will be through and that I can see the one consultant who is clear and honest. I will ask about life expectancy, saying that, with no clear timescale, I am expecting the worse so am just sitting here waiting to die! I am not worrying about longer term - just short term aims like Christmas and so on.

You've had such a journey and so sorry to hear of your loved ones too. You have such a difficult decision to make with the options available so I hope all your team help you through that. All the best and thank you x

I have found they are very reluctant to give timescales which is a pain as if they say less than 12 months then you can get extra benefits, cash in your pensions tax free and life insurance pays out too.  

Hi Chillamum

Welcome to the forum which is full of good people who are ready to respond when asked - as you can see from your other post on the forum. I just want to echo something KT said - a palliative care doctor who writes books ( Kathryn Mannix) is clear that if you feel deterioration in your physical health over years - then you probably have years left, changes month by month indicate more like months, and once it is day to day, then the end is near. Prognosis is not a precise science amd the truth is the doctors often dont know  it  is not that they are trying to hide things from you. A clear timescale would be detrimental to many of us - better to live while you are alive than spend too much time wondering about the end date. It gets easier over time to do as others have said, and just get on with living as best you can. I have to say your living situation sounds difficult and your geographical isolation sounds hard. Online support is not a substitute for personal support, but it is definitely a help to speak to people in the same storm ( the phrase "we are all in the same storm, but not in the same boat" makes sense to me).

As Remoh says getting a prognosis of 6 months or less does mean access to PIP under special regs, and possibly insurance pay outs etc, but even then there are many people on this forum who have well exceed the 6 months given a couple of years ago.

Get your affairs in order - will etc, and then try to live. I hope you do feel physically ok for now.

xx

Hi Chillamum, I’m glad my musings helped. I hope Friday goes ok for you and that they have the results ready for your appointment the week after. it’s so nerve racking when they don’t (or at least it is for me). I’m sorry to hear of your last mixed response, I can understand now why you seem to be feeling down I was of course hoping things were going better for you. 

Hello Ownedbystaffies. I love your storm/boat analogy! It is the geography that floors me. I only want to see friends and family and they are all a 900 mile round trip. Their busy lives mean they don't come up here. That's why the timescale is important to me - I dragged my sons up here last Christmas having been given the impression it might be he last chance so now I feel guilty and a bit silly...

How are you doing? Your profile seems to end  back in January? x

Hi Chillamum- that is one hell of a round trip. Think we forget how big Scotland is and the time scales involved. Are you able to go and stay with your sons occasionally? Even if they are busy, you can relax and be there for meals etc. Sorry if that is obvious advice, and there are obstacles.

I am doing ok - yes I last updated profile in Jan when i changed meds - so far, finger crossed, capecitabine is doing its job. Next Ct at end Oct, and it is the time of year when I tend to get bad news. However I think there is still another line of treatment if this fails. I am still doing ok after 4 years since diagnosis, bit more tired and have to accept a snooze in the afternoon is acceptable when needed. Hard thing is, once you do seem to be doing ok, and not looking or acting like a stereotypical "cancer patient", others can sort of forget that there is still an issue and that one day time will run out ( or since "time is infinite", I will run out!), But for now, I am doing ok and hope you are too. My new/old rescue dogs have given me a reason to get up and out every morning, or they moan at me

xx

Hi Ownedbystaffies. Our dogs do keep us going don't they! It is my little beagle I worry about - she would be unhappy if I went. My husband & sons, I think, would benefit from me going sooner rather than later then they could get on with their lives. No point prolonging it for them but my little dog...

I can't stay with my sons as they have no room in London and we'd have to drive because we have the dog...

Be positive about the October scan - maybe this is the time for good news and I fervently hope so- my fingers are crossed for you (& everyone I've met here too!)

Let us know... x

Hi @Chillamum,

I think feeling we would be doing others a favour by not being here is a common belief, totally untrue of course, just as I used to hear suicidal people telling me the same thing ( I worked for a mental health service). It it us who think that, not family and friends. I am glad your dog is a good thing in your life and they do look to us for protection and love. Sorry to hear your sons have no space ( such a common thing in our ridiculous housing/ rental market).

I take the Ct results as they come, as there is little to be gained by worrying about them beforehand. Not that I dont feel anxious on the day itself. I gather you are due one soon and will see if the treatment has been working or not. I hope the consultant is more helpful this time. I do feel sad reading your profile that you feel you are basically drifting along and killing time. It is hard to have a husband who doesnt want to talk about the deep issues, or by the sounds of it, the day to day. Have you tried the mc millan helpline for counselling services you can access. Talking to someone on the phone is not as good as face to face, but it is a good second best and allows you to spill out all the stuff you are ruminating on alone.

xx

Hi Ownedbystaffies. Thanks for the reply. Funnily enough I spoke to a McMillan nurse yesterday. We have 2 part-time in our area and this one is the touchy/feely rather than the clinical one and she calls me every few weeks. She, poor thing, got the brunt of my annoyance in not getting the results/support from the Beatson oncology team. I expect it is good for me (not for her!) that I "spill out all the stuff" as you say but now I feel a bit guilty. There is nothing she can help with and I have a horrible feeling I'm down on file as being such a discontented moaner. I don't mean to moan, just weighing up the facts! Such a lot hangs on scan results doesn't it? In a couple of weeks I will be thinking along different lines I am sure. Have a good day and take care x