Cancer but no prognosis

[ocrendby]

FIL has been diagnosed with prostate cancer that has apparently got into his bones.

DH is obviously in bits about it.

FIL has refused a prognosis as he just wants to live his life.

I've done plenty of reading about prognoses for stage 4 prostate cancer and have a bit of an understanding about cancer in general. It seems to me that he may well have another 5-10 years with modern treatments.

When DH said that his dad is dying I said not necessarily and that FIL not getting a prognosis wasn't helping anyone.

I get that this is disrespectful to FIL's wishes but I'm looking at DH always worrying and almost putting his life on hold and so AIBU to feel this way?

My own DH died of pancreatic cancer so very quick after it was identified.

My Dad was in pieces when Mum died quickly from cancer. He told me it should have been him as he's lived with prostate cancer for 5 years (he was given 4). At least I know.

I also help him with his meds so I know he's not on any for it. And his blood psa readings were going up last year, they took a second sample, but never got back to him. He doesn't seem bothered and has just passed another birthday in his 80s. I think he is resigned to what will be will be.

Prostate cancer is one of those that people can live with for years to be honest, even when it has spread to the bones. It is usually the very aggressive form that younger men get that kills people quickly. Everyone is different though and obviously other health conditions will affect things.

@Blossomtoes for heaven's sake where is your empathy? How is a passive aggressive comment like that helpful to a family who are dealing with a terminal cancer diagnosis? OP is fine to seek information that will effect her family on an anonymous forum ffs.

My FIL passed away in February this year, after being told he was ‘terminal’ in 2004. That was with prostate cancer that had spread at the time and was inoperable. My FIL had hormone implants that I believe ringfenced it all and stopped it spreading further. He was told he’d probably have about 5 years back in 2004, yet he managed 19!

My point being that it’s not always accurate and I can understand the person who is going through it not wanting to know and to just live their life. Everyone is different and you need to respect the patients wishes.

Prostate cancer spread to bones would definitely be a prognosis of years.

A lot depends on the Gleason score of his prostate, a high score would be more aggressive, a low score you could easily be talking 10 yrs plus.

And with all these cancers the longer you live, the more treatments come on line and prognosis gets longer.

If FIL would have accepted a prognosis this would help all involved- not me but MIL and DH

Apart from FIL.

It depends on the type of cancer, my father had prostate cancer but it changed to a small cell cancer, spread everywhere very rapidly and he was gone in less than 3 months. He had palliative radiation on the tumour in his brain and chemo for the others, he didn’t even manage to complete the treatment.

We were told 6 months to a year with treatment, much less without. I often wonder how would he have bothered with the treatment which he found hard and meant that he died in hospital rather than at home in his own bed which is what he really wanted. Let your FIL deal with it in his own way, just know that time is limited and make the most of it.

I am in remission from stage 4 Lymphoma and was told by doctors and nurses that stages can be different for different cancers, i.e. for me stage 4 was not terminal, blood cancer works entirely differently.

That being said, I think research can often be inaccurate when it comes to cancer. I found some poor prognosis' for myself online but also a lot of other information that just wasn't accurate for me.

To the point - I do think you're being slightly unreasonable, you aren't the one with cancer and it is something that takes over your whole life and you have to cope with it your own way. I coped through humour. But, I wonder if you/with your FIL's blessing could speak to his consultant and find out for yourselves but not inform FIL or anyone else as is his wish. If that's what your DH wants of course.

It might well help FIL if he is assuming he is on the verge of death.

However he has only just found out and there are plenty of appointments and opportunities for him to have more information.

I’m so sorry about your FIL. I would allow him to deal with this how we wishes.

There are two men in my immediate family who have had very similar diagnoses. One died within a year as it continued to spread rapidly. The other lived for 3 years, 2 of them good (the last year his health was declining quickly).

I hope your FIL is in the 50% 🤞🏻

It’s traumatic, and I don’t think someone telling me that it’s potentially such a long process it doesn’t count Fair enough. It helps me to know that the incurable prostate cancer that my DH has has a theoretical possibility of being held at bay for long enough that one of the other problems of old age with carry him off. I don't regard that as "the cancer doesn't count", and I don't think anyone has suggested that.

Things is a diagnosis isn't a prognosis and a prognosis isn't always exact and dependent on many features and how the body responds to treatments that are or aren't available.

My mum had what was stage 4 peritoneal cancer for 5.5 years before she died.

Prognosis (statistically) would have had her dead in months. She spent over a year of that time in remission.

So hers was terminal from the start effectively.

It feel odd saying she was dying for half a decade. But for me it helped me process it because I knew whatever time we had left it was years less than we would have had otherwise.

She died in her mid 60's

To be honest you do sound a bit resentful towards your FIL and the relationship your DH has with him. Presumably you are annoyed that your DH wants to spend as much time as possible with FIL and the impact this will have on your life. This is making you focus on the lack of knowledge about the prognosis, presuming that if FIL does in fact have longer than x years your DH would not spend as much time visiting. I do think you need to let DH work through this uncertainty in the best way he can rather than focussing on the annoyance about the disruption to your existing routines. Perhaps FIL will not want the many visits DH is planning - he may want life to continue as normal as possible rather than feel DH is visiting excessively because he is dying.

Sorry if this sounds harsh, but I had the opposite issue when my FIL was diagnosed with stage 4 Lymphoma. Although no months/years left prognosis was given it was apparent from the oncologist’s letter to the GP (FIL was given a copy) that FIL only had a few months or maybe a year. DS is a Doctor and was able to interpret the contents of the letter. However my DH went into a form of denial and would not discuss with me or DS however hard we tried - reacting with anger if I tried to raise the topic. The subject of ‘how long’ was never raised by anyone in DH's family. So DH missed any opportunity to visit more (lived over 3 hrs away from us) and even didn’t acknowledge that FIL was probably dying when admitted to hospital at the end. The family only managing to get there a matter of hours before he died, it was only when I explicitly and fairly forcibly said to DH, his DB and his DS - ‘FIL is dying he may not be here next week’ (when they originally had planned to visit!)
DH’s family’s denial was so strong they were shocked when FIL died and they were left with much regret they didn’t spend more time with him the last few months - DH still doesn’t really acknowledge that DS and I tried many times to talk with him about the prognosis although he has apologised about his level of denial.
Families cope with terminal cancer in different ways, all you can do is be as supportive as possible to your DH’s choices whilst offering a dose of realism when it is appropriate to do so - ultimately it is your FIL’s decision on how he copes and lives his life day to day with the knowledge that he is dying of cancer (however long that may be).

Honestly, I do think YABU OP. (Probably not intentionally and absolutely out of concern for your DH. But, ultimately, this is not your call.)

I understand that not knowing is tough for your DH. But your FIL is entitled to manage his remaining time however he needs to. A prognosis may well feel very much like a clock counting down and he would rather enjoy life without mentally ticking off the days.

I'm sorry for your news and I hope you all enjoy some good time with your FIL and he's not in discomfort.

My father had prostate cancer that spread to his bones and he died 6 months after diagnosis. But one of my cousins was diagnosed with stage 4 prostate cancer about 5 years ago and he is still very well, working full time and enjoying life.

I’ve recently been diagnosed with cancer (not stage 4) and one of the most challenging aspects for me has been intrusive questions about the stage, size of my tumour, etc etc. It feels like people just wanted to google and find out if I was going to die.

In my experience you can’t know how you’ll react until it happens to you. Other people pushing their beliefs and expectations onto you when you’re still adjusting to the news is unhelpful. Also you might find your FIL’s preferences will change over time. Just give him some space and encourage your DH to spend time with him if it will make them both happy.

’ve recently been diagnosed with cancer (not stage 4) and one of the most challenging aspects for me has been intrusive questions about the stage, size of my tumour, etc etc. It feels like people just wanted to google and find out if I was going to die. Another thing that is unhelpful is people saying "my brother in law had prostate cancer and he's fine now" .. well, yes, that's because your BIL had stage 1 prostate cancer, and it doesn't apply to my DH who has stage 4. So on the whole I can live with them googling to see if he's going to die because it stops cheery comments like that.

We all react to things differently.

I don't know what it is about being diagnosed with cancer but people appear to be compelled to say the most absolute bonkers shite to you.

When my DF was diagnosed with cancer everyone he'd met lined up to tell him how their cousin had had a totally different cancer and cured it with green tea and incantations to the moon.

It was not helpful and he'd rather they had said nothing.

usually if patient is offered a prognosis then I would say not that much time.Oncologist very rarely even mention stages of cancer never mind a prognosis.It’s stage 4- my fil had prostate cancer to the bones and died within 6 months s as and that was with palliative chemo and hormone treatment.
I agree with others though-it’s your FIL’s cancer to deal with.I have advanced cancer- sadly close to stage 4 now.Im not sure if I’d want a prognosis and I’d be extremely upset if my son in law was pressing for it

I've been through this with two relatives. One didn't want to know and that was the right thing for them. The other did want to know and that was right for them.
As hard as it is for us as a relative we have to accept their decision

So grateful for all the responses and accept Iabu here.

Its difficult for you and your DH OP and also for your FIL and other family.

My DH has a diagnosis of stage 4 Prostate Cancer and he is not 60 yet and still working. In some ways I would like to know how long as we could plan for this and cram things in and overstretch ourselves financially if time is tight. But on the other hand he may have a few years left and be unable to work for awhile and we may end up struggling.

His brother who doesn’t make an effort to visit for several years and various groups of old friends who he previously saw only once a year if he was lucky. Have now decided they want to see him and spend more time with him on a monthly basis. For me this is really annoying as I think where have you been the last few years. Its also difficult as he does get more tired and for us to plan things around all his hospital, GP appointments, various collections and tests and around assisting our teenagers.

I think SIL is a bit annoyed as they visited twice in two months, paid to stay over in an expensive hotel (they have two kids, plenty of money and very high standards) and now six months later DH is still here. The Dr’s haven’t offered us a prognosis so we couldn’t tell them any info.

In your position I would be as supportive as poss and just go with what your DH wants to do.

My father in law died of prostate cancer and when he was stage 4 he was given 12 months. I feel he would have lasted longer but he had the covid vaccine and 2 weeks later died. He was doing ok until then. Could have been coincidence but I regret now allowing the GP to persuade us to get him boosted.

My father died of prostate cancer that had gone to bones and bowel. By the time he was diagnosed at stage 4 he had around a year left. He functioned well until the 6 month mark then started to become noticeably unwell and it was a deterioration after that.

Haven't read the full thread but my experience is if it's not yet in brain lung liver you can go on for a good few years with modern treatments.