I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error

<1 month between diagnosis and death!

User
Posted 25 Jul 2018 at 12:37

Sorry for the long post, but I am struggling to deal with my dad's death this month, especially given the circumstances. After hours and hours of scouring the web, I am yet to find a similar story involving such a short timescale between onset of symptoms and dying of prostate cancer.

Dad presented at the GP with a persistent cough and lower back and leg pain at the beginning of March. GP referred him to an x-ray and prescribed him antibiotics in case it was a chest infection. Following week, he can't get out of bed and is forced to call an ambulance. Nothing is done in A&E and he returns home on his own by bus. He starts sleeping in a chair rather than bed. He has another visit to the GP, who thinks the pain he has is unlikely to be sciatica, that he should just keep moving and it should get better. A leg and chest x-ray is scheduled for SIX WEEKS time. The antibiotics give him some symptomatic relief, but of course the shadows remain in the lungs. We are told here that there is the possibility it could be cancer.

A CT scan is arranged for a week's time, but the machine is typically broken and he is forced to wait another week. He gets an appointment at the hospital the week after where they finally confirm it is cancer, but still unknown primary, but they suspect the prostate as a PSA test gives a score of 30.

By this point it is mid-May. He gets an MRI which confirms he has lung, spine and pelvis mets. The week after, he gets a biopsy of the lung which tests weakly positive for prostate markers (I don't know why they opted for a lung and not prostate biopsy here, given the information they have). 

At the beginning of June, he gets called in to the urology part of the hospital. They do a DRE, which also suggests abnormality, so they proceed with the strong hypothesis that it is prostate cancer. He has a pair of Degarelix injections that, quote the doctor, 'will send his cancer into remission' and they plan to check up on him in 6 weeks’ time.

Today is the day of that check up: he has been dead for 3 weeks. I need to understand where and how things went wrong.

I work abroad, but would talk to my parents often, and they would give me the doctors’ feedback. I mistakenly think that the diagnosis of prostate cancer means that his case is not too urgent and that we are in for the long run. I therefore quit my job in anticipation, but he lasts just 3 weeks from when I return, which has left me feeling cheated and full of regrets.

I came home in shock to see my dad with cachexia, just a few days after the urology appointment. Despite his condition and having no experience with cancer, things I read online about prostate cancer keep me optimistic. At this point he is still just about able to get up the stairs. But he gets weaker by the day. GP referrals take forever and within a couple of days of the district nurse coming to visit, we are told he has hypercalcemia and must go to hospital. He's put on a drip and encouraged to be bed-bound, due to his pain. So his functions deteriorate further. He has another MRI 'just in case.' This is 3 weeks after the first and it shows the cancer has spread to the liver and that his spinal mets are encroaching on the spinal cord. We are told nothing more can be done, that his cancer must have been hormone-refractory from the start. Devastating. He made it another week in the hospital, then a week after at home.

I would like to know whether there are other stories like this, or whether he was just extremely unlucky and must have had some rare version of prostate cancer (of course, with no biopsy, we don’t know). 

He was in his mid-70s, perfectly healthy and fit. I saw him over Christmas and perhaps noticed he was a bit weaker and thinner, but nothing inconsistent, I thought, with being under the weather/aging. He had maybe started to develop the persistent cough when I left.

Is there anything more we could have done? Should anything more have been done?

 

User
Posted 25 Jul 2018 at 19:49
What a beautiful reply Johsan
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 25 Jul 2018 at 23:56

Such a sad post, it’s so difficult to come to terms with sudden illness and death like this. I think that this cancer was one of the very nasty types we hear of, small cell or one of the others, to have been so dangerous. I know the urge to find out why something happened, I feel it strongly with some of the things that have happened to my husband during his long, drawn out battle with this disease and how that feeling of bitterness that people didn’t care, and caused him sever pain and long term damage, can intrude into every thought. I have found I must banish those thoughts and put it all behind me because unless I can do something that will prevent the same thing happening again, I just feel hurt and angry and unwell with the stress of it, and really it doesn’t do any good.

I love the message in Johsan’s post, she has the right idea, what is done cannot be undone, think only of the happy smiling dad you were lucky enough to know, that way will bring joy, he wouldn’t want it any other way.

 

My sincere condolences for your terrible loss, I genuinely mean that, this must have been such a shock for you. At least I have had eight years to prepare myself for the inevitable (it’s never enough time).

 

with love

Devonmaid 

Show Most Thanked Posts
User
Posted 25 Jul 2018 at 16:50

Grieving daughter, I am so sorry to read your story. Prostate cancer carries a myth; many of us on here have heard things like 'it's the best kind of cancer to get' or 'you die with it not of it' and while it is true that the vast majority of men diagnosed early will either have successful treatment or can avoid treatment completely, the same cannot be said of those diagnosed with advanced disease. One of the problems is that for many men, there are simply no signs or symptoms until late in the disease so unless the man asks for (and gets) regular PSA tests, he is unlikely to be diagnosed until it has spread. The statistics for the UK show that men are diagnosed later than in many other countries, partly because (as a generalisation) they are reluctant to go to the GP with what seems like minor complaints or simple signs of ageing. Men from the older generations are even less likely to want to 'bother' their doctor than younger men.

It is also notable that your dad's PSA was quite low considering the extent of his mets. And yes, there are some rarer types of prostate cancer that either spread very aggressively or produce very little PSA or that do not respond to hormone treatment. Without a biopsy, your dad's medics will have been as shocked as the rest of you by how quickly he deteriorated. Re the lack of biopsy, when a man in the UK is diagnosed with clear bone and / or soft tissue mets, it is often the case that a biopsy is not done as the biopsy itself has risks and because if the tumour is extensive in the pelvic area, research suggests that the biopsy can allow the cancer to escape along the needle tracks and become more problematic. The lung biopsy was a safer alternative; the fact that the prostate cancer markers were weak could also suggest that this was not a common adenocarcinoma and was perhaps a more complex type.

My father-in-law had been diagnosed with PCa but it was believed to be small so he rejected treatments in favour of monitoring by PSA. 3 or 4 years later he took ill very suddenly and was admitted to hospital on the Thursday. On Friday a scan showed that the cancer had spread to his liver and kidneys and he died the following afternoon. His PSA was 1.2. We suspect now that he had an undiagnosed small cell or mucinous prostate cancer but we will never know for sure. In the end, our comfort has been knowing that he did not die a long drawn out death with months or years of terrible pain or zonked out on high doses of morphine. I guess it is the same for any kind of cancer - there are those who get diagnosed and are cured (I don't believe anyone is actually ever cured of cancer but you know what I mean), those who are diagnosed but treatment holds it at bay for much longer than expected (aka Jane Tomlinson and Jane Plant) and those for whom no treatment works and / or they die very quickly. Sadly, your dad and my f-i-l seem to fit into the final category.

You could ask for a meeting with the onco but don't hold too much hope; I tried many routes to seeing Stan's onco but he steadfastly refused and our SAR was also declined.

Don't have regrets - hopefully, in time you will find acceptance and just be thankful that he was well and oblivious for almost all of his 70-odd years.

Edited by member 25 Jul 2018 at 19:52  | Reason: typo

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 25 Jul 2018 at 17:02
It occurs to me that either this was a rapidly growing, very aggressive type of Prostate Cancer or it suddenly turned rogue. It is a very sad story and pretty unusual these days. What more might have been done? Well, was your Dad having annual PSA Tests? At his age, this should have been routine and might have picked up a cancer before it went rogue. But if it was a rare very aggressive cancer, even this may not have helped. I can't see any point in blaming yourself or his doctors. It looks to me as if his care was good but ill-fated.

You may find stories like your Dad's on the YANA Now site, which has a very extensive searchable database of cases, much larger than this one.

AC

User
Posted 25 Jul 2018 at 19:25
I just wanted to express my sadness Grieving Daughter.

Lyn is our non medical "expert" and has a wealth of knowledge, gained through her family experience of PC, and has tried to give you an explanation as to why this happened with your dad.

There are many things we could all do with hindsight and we can live with regrets and the constant refrain of "if only" but it doesn't bring your dad back. I do understand though, your need for knowledge as to how this escalated as it did.

Your dad's cancer must have been very very aggressive.

I really hope that you will come to terms at some not too distant future, with his leaving you prematurely.

I am sure he would be proud of the way you have tried to find answers for him, just make sure that in seeking them you don't wear yourself down.

Remember him with his smile and his laugh and his love.

Best Wishes

Sandra

*******

We can't control the winds - but we can adjust our sails
User
Posted 25 Jul 2018 at 19:49
What a beautiful reply Johsan
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 25 Jul 2018 at 23:56

Such a sad post, it’s so difficult to come to terms with sudden illness and death like this. I think that this cancer was one of the very nasty types we hear of, small cell or one of the others, to have been so dangerous. I know the urge to find out why something happened, I feel it strongly with some of the things that have happened to my husband during his long, drawn out battle with this disease and how that feeling of bitterness that people didn’t care, and caused him sever pain and long term damage, can intrude into every thought. I have found I must banish those thoughts and put it all behind me because unless I can do something that will prevent the same thing happening again, I just feel hurt and angry and unwell with the stress of it, and really it doesn’t do any good.

I love the message in Johsan’s post, she has the right idea, what is done cannot be undone, think only of the happy smiling dad you were lucky enough to know, that way will bring joy, he wouldn’t want it any other way.

 

My sincere condolences for your terrible loss, I genuinely mean that, this must have been such a shock for you. At least I have had eight years to prepare myself for the inevitable (it’s never enough time).

 

with love

Devonmaid 

 
Forum Jump  
©2018 Prostate Cancer UK