Living with incurable cancer - incurable patients only

This group is specifically for people with an incurable or terminal diagnosis. Whether you need to talk about dying, or about making the most of your life, you can discuss your feelings openly here.

Did you ask your prognosis?

Ginajsy
Posted by

Hi

This is the first thread on this part of forum started by me. Some will know me, if not and you want to know, my profile is filed in to save me repeating all over again.

I wondered if when you got your incurable diagnosis, if you asked the how long question? My spread was told to me about a month ago and I will be seeing oncology and meeting the palliative care team next week. I do not think I want to know and have always felt like this. Though there would be minor benefits to knowing (life assurance etc). Though if I couldn't go back to work, since diagnosis I have been saving away and believe I could manage without accessing it.

The problem is my cancer is rather aggressive and I think the answer would simple/scar depress me. That or they will say they will see how I respond/if I recur after the latest treatment.

I am hoping once I have met palliative care I can access counselling as I unsure how to even process that at the moment. I have been busy since being told, hence taking so long to meet them and have mainly blocked it out. I have been to Macmillan but found they had no answer for me on how to prepare for this. As in, how do you tell people? What to do to prepare for this. I just got told you can't do it alone. Hmmm not sure on that, it is only me not friends/family that will ultimately 'go through' my prognosis. I know they will suffer too, but think you know what I mean there.

I know they are 'best guesses' and quite often proved wrong. But I wondered if you are asked. I am also aware some are told when they did not want to know. Just to help me decide what to do.

Gina

There are no perfect people, only perfect intentions

♬I should've been more than this, I was gonna be something big, But I never did anything at all ♬ Dan Owen - Icarus
ColeD74
Posted by

Hi Ginajsy,

I personally have not asked the question because each person is different and each person biological makeup is different. I have however, done a tun of research on mine and fully understand that my current prognosis is 2 to 5 years. But that being said the medical community doesn’t know me. I wasn’t supposed to live when I was 13 I’m still here. I’m being proactive and making sure my ducks are all in a row. But my plan is to be the first person in history to beat this cancer. I win cancer doesn’t lol. 

  1. Take Care 
ColeD74 
Gobaith
Posted by

Hi

I'm so sorry you've had this news - it is hard to process and I found counselling really helpful. I was offered a clinical psychologist through my local cancer hospital and it was the best support I've had. 

I did ask for a prognosis in terms of time and in all honestly it screwed me over - I was told I wasn't likely to hit Christmas, then very unlikely to get to Easter and then certainly I won't get to my 40th birthday but actually my treatment plan changed and my birthday is this weekend and I have a lot less cancer today than 8 months ago when they told me all this. The truth is they don't know and I found each milestone became a burden as I was just focusing on dropping dead each time. I am now told that they have no idea how I will respond to treatment (quite well at the moment, hence outliving my expiry dates) and that they are unwilling to answer that question anymore. I've been advised to try not be consumed by dying (easy to say when you're not in our boat) but to enjoy living in the moment. I have sorted out my financial affairs and wills and insurance ect… I haven't quite gone as far as planning my funeral and things like that but you need to do whatever is helpful for you. I liked being in control of the other bits and it was a distraction (albeit weird) to sort out the practical. 

I had a friend who was told she had months and so she put off dealing with the practical but they were wrong and all of a sudden she declined very quickly - she then had to rush to get her will sorted for her children and it was all a bit of a nightmare. It was obvious when she was declining.... 

Equally I feel as if I want to know again now - control, control, control! I'm just trying to get through each day though, that'll do. 

I really hope you get so much longer than you expect - I hope you can make decisions that help you enjoy life and feel loved through this awful process whatever you decide. 

x

Clare
daloni
Posted by

Hi

I am so very sorry to hear that the cancer has spread and I am sorry you’ve had to join this group - although I’m glad you have and I really hope you’ll feel welcome. You have a lot of friends in the community and I hope you’ll find some new ones here, 

When did I get the dread news and did I ask for a prognosis? March 2015 after a regular CT scan and not exactly. I was told the cancer was incurable and that all the hospital could offer was palliative chemo when I began to experience symptoms. 

I had a conversation with my then oncologist where I said I wasn’t going to ask for a prognosis because it seemed to me that it was a bit of a finger in the wind but that the mortgage life insurance would pay out if I had a year or less to live. She said she could reasonably argue the case and back it up evidentially in terms of an insurance claim but she didn’t think we were quite there yet. The insurance paid out six months later. This has been more than a minor benefit. 

Shortly afterwards, I switched oncologists and was able to get onto a whizzy new drug that kept the cancer at bay for 15 months and I’m now on a clinical trial. 

More recentiy I had a chat with one of the senior clinical fellows about the future. I don’t think I got the word “prognosis” out and kind of skirted around the issue by asking whether he was able to tell how long I’ve got. He said it was very difficult to tell but in general if a patient’s health was deteriorating month by month then they were looking at months. If the deterioration was week by week, then weeks.  Day by day, then days. I found this helpful. 

From my experience I think there are three things in the mix. The statistics, which are useful for practical stuff like insurance claims; how well or otherwise you are feeling; and the way new drugs are changing things so rapidly.

So maybe in deciding what you want to do, perhaps it would help to think through why you want to know and what you’d do with that Information? The answer can be different depending on what you want it for because I think in reality it’s more of a window of time than a sell by date. What’s my life expectancy with regard to an insurance claim is one question. Another might be can I plan to go on holiday this Christmas? I think asking “what’s my prognosis” isn’t really the point. 

I hope this is helpful. I’d be interested to know what you decide 

lots of love 

xx

Green at heart
Posted by

Hi Gina,

I have a pathological need to know as many of the facts as I can, and made that clear to my transient oncologists. That means that as soon as the consultant radiologists's a report gave a diagnosis of incurable cancer, I at least didn't have to indulge other people's aspirations for a cure. 

That was in March 2019, when I was also told that this was NETS mets filling quite a bit of my liver (we think of GI origin - primary not found). The largest of the many  masses in my liver was already 14.5 cm, filling the right lobe, with who knows how many friends occupying the left.

I met my NETS consultant finally a couple of weeks back, I did ask, though as we had no further information since March, we both agreed it was anybody's guess.

As soon as I was aware that my alien baby was incurable, I got cracking sorting my will (including how I'd like my remains dealt with), getting pension beneficiaries sorted, and getting the critical illness cover paid out.

Sadly, I'm still none the wiser, but I've just started chemo last week (already been to A&E once for IV antibiotics - meaning my nuclear scan had to be cancelled.

I feel like if nothing else I'm not learning some patience.

I'd still like to know so that I can use good days wisely, and try to make my bad days bearable.

Anita
Ms.Lin
Posted by

Hi Gina, and all of you on this thread,

Just when it is needed this discussion has come. I did ask for my prognosis with diagnosis of myeloma. It was a mistake to ask for it with Hubby present, even though it was years not months. We had to call a neighbour to drive us home.

We went to work immediately sorting the will.  As time has gone by I have dropped some of the tasks I started... Lists of family artifacts,their locations in this old house of many odd rooms and their histories; writing down family stories, choices for memorial service and disposal of remains and more.

Now with a second cancer suspected I have that "kick in the bum" someone mentioned and have been working on some of this.

If you are doing any of this do not  leave it too late! Am finding it difficult due to fatigue and confusion. Earlier found it difficult during chemo.

If this second illness is cancer I will again ask for prognosis, but not with Hubby present; don't want him to hurt his head when he hits the floor.

Truthfully, I would not be able to do this alone. I would have to start having a carer soon if confusion and weakness progresses at this rate, and hospice eventually. May have hospice at end as Hubby may not be able to cope.

Lin
flo_g88
Posted by

Hi

im sorry to hear you’ve had this news. 

I was told a month ago that my cancer had returned after a year in the clear and this time it is life limiting. At the time of being told I broke down, I barely registered anything else and all I kept thinking was that I had days/weeks left in me. 

Personally I asked the question when I last saw my oncologist, but this was more for the fact that I have 2 young children who we haven’t told anything to yet. I don’t want to know how long I’ve got left, not really, but I needed to know how long we have before we need to start preparing them.

Its such a tricky question for doctors to answer I know, and I was told that had I carried on in the position I was in a month ago I had days/weeks left but thankfully I have responded well to treatment so far, and “with the way research is going and the amount of treatment available could have a good 3-5 years”..... obviously I’m fully aware this could change in a heartbeat if I have a bad turn or anything but it was a little relief knowing it could be longer than I thought, and I have time to make some memories with my children. 

If I didn’t have the kids I don’t know if I would want to know to be honest, I’d just focus on loving each day to the full (which I’m still doing) and enjoying the times I feel good with my loved ones. 

I can’t tell you what the right or wrong answer is, and I definitely think that having a bit of counselling may help (I’ve had none, not even been offered!)

I hope you find a decision you are comfortable with xx

mummyb
Posted by

Hi gina

its truly the 64,000 dollar question.  Unfortunately for me I had a terrible oncologist at the very beginning of treatment, who told me my prognosis without me asking for it.  Needless to say I soon binned her off and got a new one who is fantastic. 

I was told between 12 and 18 months and for the first 6 months all I did was plan my derailment. How soon I’d get ill, how soon I’d be bedridden,where I’d go to die, etc etc.  It was a terrible time.

Fortunately, the new oncologist was a lot more optimistic and gave me hope.  It’s now over 6 years since my initial diagnosis.  

Ive always wished that first oncologist had said nothing to me.  It did however make me face the reality of the situation and helped me to realise the important things that needed discussing.  Everyone knows where I stand on my end of life care and my will was updated etc.  

I truly wish you all the best with your treatment and hope things aren’t to difficult for you. 

Take care.x

tvman
Posted by

Hi Daloni

I was also given my diagnosis in March 2015. My wife and I had a good idea because I had had a bone marrow examination a couple of weeks earlier as my red cell count had dropped below 100 and the hematologiste had briefly mentioned that he thought my bone marrow was failing. Just a very brief mention and only once, but I picked it up.

I didn't ask for a prognosis, it was my wife and I was blown away when I heard the words leaving her lips. We had got to know the hematologist and were quite firm friends, we have a lot in common. So his voice was wobbling a little when he just said that everyone is different and each person goes at a different rate. 

Well, here I am over 4 years later and delighted to have reached my 60th birthday just over a year ago. I have had a few scares when the numbers were low but they bounced back to safety. I know that sometime I'm going to have an agressive leukemia but until then I will carry on with life. What does annoy me is that I developed a deterioration of my spine a couple of months later that resulted in me seeing life from a wheelchair, a bit of a kick in the teeth.

Take care everyone

Tvman

My philosophy is simple, love life and family.
MCLkid
Posted by

Hello TVmsn,

I Also had loss of bone. I have MCL I had one cycle of BR and lost a significant amount of my vertebrae and as a result had a fractured vertebrae.:-(  

but getting better. Luckily I have a raised bed garden so can still get hands in the dirt sitting like a lady. Just have to remember not to bend over. I have not asked the time question because I don’t think they know. With all the new drugs who could know. But do have things in order. Could be hit by a bus before expiry date anyway.

In a strange way it’s OK for me to realize I’m mortal Blake’s me be more careful with others and never let a sunset on a hard feeling- straighten them out in a timely manner. World could be a better place of peace was made daily.

Love to all

Millie

MCLkid
Educating myself about this disease.
Maz59
Posted by

Just caught up on this thread and it is the how long is a piece of string question and even if you do ask it you almost feel bad for putting the doctors in that position. Like others i have had different experiences from the "o! it could be years" to the "if I thought you had even 3 months left I would do the Op" that one was 12 months ago. None of it very helpful, but it is always a question lurking in the back of your mind. 

I also find the make the most of life while you can and fulfill all your dreams etc. not particularly helpful as unless you have a shed load of money this is pretty impractical and can lead to a lot of misery. 

Basically this life will go on till it stops and you can sit and wait for it to happen or live the best you can while you can. I think planning for the time when you will need care and sorting finances/ services etc. is best done whenever you can face it and then it is out of the way and can be tweaked if things change. My big thing has been making the most of being with my family and good friends.

I had what I thought was going to be a very quick almost waste of time appointment with oncology last week and came away with a feeling something is wrong and I now have a number of other appointments set up. I know once the results are in, if there is a problem "there will need to be some serious treatment decisions to be made that only you can make" (oncologist),  but i also know that if all is well the somber mood will disappear into the ether and he (oncologist) will not even mention it next time unless i ask, so i will wait and see before asking anything. 

Maz 59 

flo_g88
Posted by

You’re right, the question is always there in the background isn’t it?! Even though they’ve given me a “ball park” it’s not really helped because that thought is now always there. 

I agree, ive made a few plans for when I need to and got some things written down, but it’s not something I am completely focusing on now. However it was at the time of being told which is why I started, and it definitely helped me get my head around things and I feel better having a few plans in place. Spending time with the people that are important to us is definitely the way forward! 

Il sorry to hear you had a not so routine appointment and the feeling that something isn’t right. Fingers crossed nothing is said at your next appointment and all is well 

Maybug
Posted by

The oncologist I trusted has retired and I’m about to meet a new one. I’m worried he might want to tell me my prognosis. The other one was very good at picking up signals and telling me what I wanted to know, but not what I didn’t. This one might be the same, of course. I won’t know till I’ve met him.

Maz59
Posted by

I have always found it difficult to move to anyone else even though at times my oncologist is absolutely useless and has made a few really big blunders, at other times I know he gets it just right. I also have a good relationship with his secretary and his nurse who tell me to keep giving him a kick up the backside. Over the years we have developed a strange relationship he still is very forgetful and often ill prepared but he listens to what I say accepts it when mistakes are made (usually blames someone else) and has come to learn, that although my body reacts differently to most, I know exactly when I am getting an infection and when allergies especially to drugs start. Only a few weeks ago I was offered a new oncologist that has started a clinic and my husband in particular thought it was a good idea. But I just could not go through having to explain everything again and start new. 

I was lucky to be able to speak to someone who knew both oncologist and whereas one is much more a people person and better at doing what he should mine is a better clinician and knows the drugs better. 

I know it is not the same for you as your oncologist is leaving. I was able to make the decision to stay put. 

Good luck with the new person.

Maz 59 

Maybug
Posted by

Thanks Maz. I’m sure he’ll be fine but change is so worrying when there’s so much uncertainty about.