DF and prostate cancer

[Squashpocket]

I'm not sure what I'm hoping for really, maybe to hear others experiences.

My DF was diagnosed with prostate cancer about 18 months ago. My parents told me very little at the time, just that DF's PSA was very high, the doctors had given him hormone therapy and the PSA had come down. A few months after DF was given a scan and the doctors said it had spread to his bones. My dad has seemed well and the general messages from my DM have been very positive - men live for years with it, something else will get him first (dads over 80), the man down the road had it in his bones for 15 years and he's fine etc. I honestly wasn't that worried.

In the last couple of weeks my dad has become more and more unwell - he's lost weight, has severe back pain and stomach upsets. It's finally dawned on my how unwell he actually is - I feel like an idiot.

I had stayed off google because I thought no good can come from worrying myself and the messages from my mum were so positive, but I've had a look at the NHS info and I now realise that he probably has advanced prostate cancer.

I feel absolutely awful that I have been so oblivious, and what's worse is I think my mum has no idea either. She's not one to keep things to herself - if she knew, she'd tell me. My dad however absolutely would hide how bad things were and I assume that's what he's done.

I'm panicking for my mum and terrified for what happens next.

Sorry for the ramble. Anyone with experience of this able to share?

That must be really distressing for you. If it spread to his bones, wouldn't he have some treatment for that? Wouldn't your mum recognise the seriousness of secondary cancer?

Re experience... my dad was early 90s when he died. It was discovered a year before he died that he had lung cancer (from smoking as a young man) but his health problem was his heart. The lung cancer didn't produce any symptoms and he had no treatment for it. He died of heart failure. I always wondered about prostate cancer as he clearly had something wrong with his waterworks, but the doctors said nothing about that and obviously hadn't tested for it.

He has had hormone therapy from the start, which seems to have slowed things down initially, but the PSA is creeping back up.

Honestly, no, I think my DM has no idea that the bone metastasises are so serious. She told me she has knows someone whose husband has lived for years with metastasis to the bone, so I think she doesn't think it's necessarily that bad. I have no idea why it didn't dawn on my sooner that it was so serious either. I don't have any personal experience of cancer.

Is your dad going for treatment at the moment? If not I think he needs to see a doctor asap. Tell your mum you are really worried about him and don't let her fob you off - she might do that if she can't face up to things. I'm so sorry - it's so horrible to see your dad ill.

He's on hormone treatment at the moment - I think not the max dose. His PSA was raised at his last GP appt about 3 weeks ago and he's seeing the urologist this week to discuss what happens next. I'm assuming due to his age they won't consider chemo and I can't imagine he would want that.

I feel so in the dark, I don't know anything about treatment options, prognosis or what happens after treatment stops. What should we expect if the news is bad?

Are you there at his appointments? Does he have a MacMillan nurse? My dad had one visit his house every now and then and she was really easy to talk to. Also, is your dad getting PIP? That made a difference to my parents as they could pay for a cleaner and a gardener. It made things much easier.

I'm really sorry, I don't know anything about treatment. I hope someone more experienced will come along.

I am really sorry to read this. Unfortunately every case is different and the prognosis depends on many factors but I do know that it is a bit of a myth that "all" men live for years with this disease. Yes, many do, but depending on the stage at diagnosis and where it has spread too also the Gleason Score, the score that determines how aggressive the cancer is, it can really vary. The PSA score is quite unreliable as well, some men have a score which is extremely high, in the 1,000's and live to a ripe old age, whilst other men's are only slightly raised and only last a few years or months.
I really hope you get some answers soon. Unfortunately, I recently lost my dear dad to advanced prostate cancer so know all too well what you are going through

Many men do die with prostate cancer rather than of it - but if it's metastatised into the bones, that's not a good sign (based entirely on my father's history rather than any medical training.)

My father's prostate was responding well to the radiation therapy, but there wasn't much they could do once it got into his spine. It was first diagnosed because of pain in his hip, which he had assumed was arthritis.

Every case is different and treatments have advanced since my father died. Is it possible you could go to an appointment with him/them? Take a notebook, write down questions you have now, find out if there's someone you can contact if you have more questions.

Agree with any benefits - having a cleaner made things easier. Is your mum doing all the caring? That can be hard work, too, so look out for her, too.

Also, do you know if his affairs are in order? We finally got Dad to make a will about a week before he died, and we'don't been asking him to do so for well over a decade, long before the cancer came along (family history of difficult wills.)

It may depend on the type of cancer, but because my Dad had it young, his brother was tested younger than men normally would be, which meant his prostate cancer was caught early enough to be successfully treated. I don't think all are genetically linked though, in the same way that breast cancer can be, but isn't always. I assume the mideical people would mention it if they thought it a risk and he has male relatives, but you aren't sure what you haven't been told.

Good luck and strength to you all, it is a difficult time for all involved.

My father has been attending all his appointments alone, so neither my mum nor I know what has been said so far. He certainly wouldn't allow me along, but I'll push my mum to go to the next one.

I know that due to other health conditions his doctors weren't able to do a biopsy or MRI to determine how aggressive his cancer is. At the time I took that to mean that knowing the Gleason score etc wouldn't have changed his treatment options, but I suppose it means they've been doing palliative care from the start? Bearing in mind it was probably 6 months ago that they told him it had spread to his hips, ribs and spine and he is now in pain and losing weight, how far down the road are we? My mum is still talking about taking a summer holiday together, is this realistic?

He doesn't have a Macmillan nurse - what do they offer? How do we access support from them? My parents are comfortably off and already have a cleaner and gardener and no need for additional benefits, but my dad is struggling to move about due to the pain and my mum can't lift him obviously. Is there any help available for the heavy lifting?

Wills are in place, but is there anything else I should tell my mum to do? She is historically not proactive about their finances - dad has tended to manage most of it.

I live close by and am available pretty much all the time (2 children under 3 in tow, but that's not a problem). What's the best thing I can do to help?

Thank you for your kind replies. I'm a bit in shock

Push for a hospice referral. It doesn’t mean end of life care (though it can) but IME they are excellent at respite and pain management, and support for you as a family.

Hi Squashpocket, sorry you’re going through this. I can’t help answer your questions about how far along your father is, but my Dad also currently has prostate cancer and i’d second the helpfulness of Macmillan.

You can call them on tel:08088080000 and they’ll be able to give you advice on accessing support both practical and emotional

I'm so sorry OP. My Db was stage 4 two years ago when first diagnosed.. He's trooping on and takes anything they offer just to prolong his life. He's 63. He's adorable. He seems to be putting up a fight against the inevitable. His word not mine.

I think regarding your summer holiday, do you think your Dad will be mobile enough to go if he is in so much pain? Maybe he needs a syringe driver to help get it under control. The Macmillan Nurses or your district nurses should definitely be able to advise you and help with pain relief.

I would deal with your local hospice all the way. I hope your DF gets time and better health.

My mum has been talking about having years with dad until very recently, so I don't think hospice is on her radar at all. She seems to think the back pain and stomach issues will get better or at least can be managed long term. I don't think she'll be receptive to the idea of involving the hospice, but she might be open to contacting Macmillan for practical support, so I'll suggest that.

My dad is very good at advocating for himself, but I'm worried he won't get all the help he should because he doesn't want to make a fuss.

Macmillan can ar least discuss a lot of practical stuff like what help is available and how to access it - that might be a way of getting help with lifting.

When it comes to other stuff besides wills, are any bills in her name? Does she drive, is she named on the insurance? Does she have her own bank account? It can just make things a bit easier, especially the own bank account bit, because everything in his name gets frozen. But if needed, it can wait.

I'll ask mum about the bills and accounts at some point. I think most of their money goes through a joint account so it's probably ok, but I'll ask. Driving is fine, as mum does all the driving anyway.

Can anyone tell me what to expect to happen as dad gets sicker?

I'm fairly sure the joint account got frozen, but our situation got confused by Mum ending up in hospital.

In our case, Dad became less and less mobile - we got some things like chair risers from the Red Cross. Eventually, we moved the bed downstairs, too (250 year old farmhouse - more recent building's might allow easier adaptations.) He went to a local care home for assisted baths each week. There were good days and bad days. Sometimes he'd be quite out of it on morphine, other days he'd be bright and sitting up in bed. There were frequent trips to hospital, sometimes day appointments for planned treatment or checks, sometimes unplanned because of a development in how he was.

Mum was the main carer, and she didn't cope well - she started drinking again, having been dry for some years (she was an alcoholic.) We had some terrible arguments - she couldn't take out the stress and anger on medical staff or Dad or visitors, so my sister and I bore the brunt on a number of occasions. But we had never had a very close relationship and my mother never really learnt to deal with her or our emotions, and she didn't like people interfering (or helping, as most people would call it.) She really took against Macmillan, and I never understood that. It sounds like you have a far better relationship with your mother, but do beware that it's a very difficult time, and stress may need managing, particularly between people who are "safe" to vent to.

What you experience could be quite different - I think personalities involved make a big difference to how it all manifests.

Thank you for taking the time to share your experience.

That's good to know about the joint account - I can see online the advice is for mum to have an account solely in her name as well, so I'll mention that.

It sounds like your dad was able to be cared for at home for the most part? I know my dad would want the same. I can help with practical day to day things like driving to appts, making meals, keeping dad company if mum needs to go out, that sort of thing, but I assume my dad would eventually need help with personal care and lifting. At that point do we have to consider a hospice?

You could contact a hospice now. On BBC Breakfast today they were talking to someone from a hospice. She explained that most of their work does not involve people as in-patients in the hospice but visits to people in the community.

They can help with pain management but more importantly, in my opinion, helping people to come to terms and accept their impending death. Hospices are apparently peaceful but happy places.

My FIL had Prostate Cancer but died of Pancreatitis. He had to have a post-mortem and the Coroner told us he'd never have died from the cancer.
He had an emergency admittance when he couldn't pass urine. They drained his bladder with a catheter (a massive relief for him) and then did a 'rebore'. He was then informed, amazingly, by letter that he had cancer and went on to have radiotherapy with no side effects whatsoever. He had hormone injections into his tummy every 3 months.
His good friend also had Prostate Cancer, had monthly hormone injections but, sadly, the cancer travelled to his bones and he died after about a year.

Some Prostate Cancers are very aggressive and others are very slow growing so it is hard to know how long someone has to live. The doctors should have a good idea from comparing scans with previous ones.

*You could contact a hospice now. On BBC Breakfast today they were talking to someone from a hospice. She explained that most of their work does not involve people as in-patients in the hospice but visits to people in the community.

They can help with pain management but more importantly, in my opinion, helping people to come to terms and accept their impending death. Hospices are apparently peaceful but happy places.*

Yes yes yes.

It’s a very hard step to take emotionally to admit/accept that things are at the point of needing a hospice. But they can and will help if/when things get overwhelming. They were far better at pain control in our experience. And they really look after all of you.

We didn’t find Macmillan that great sadly. And the palliative care team were hit and miss. Hospice were incredible.

Best wishes for these tough times op.

Hi OP - if the cancer has spread to the bones then yes it is ‘Advanced Prostate Cancer.’

If you look at ‘Prostate Cancer UK’ website there is a number for their helpline. The nurses on that are excellent.

I would also ask if there are any plans for him to see an oncologist as well as the urologist as they are the experts in advanced prostate cancer care.

Hi OP
I'm so sorry about your dad. My partner was diagnosed with advanced PC - already in the bones at diagnosis - and I cared for him for a year until he died. To be honest it was really tough and would have been entirely impossible without the local hospice team. They started visiting when he was still relatively well (I insisted - pretended it was for my peace of mind). The GP put us in touch with them but you can also phone direct. The wonderful team included counsellors and reflexologists as well as the nurses and consultants. They took an holistic approach which really helped: the hospital were more matter-of-fact and medical and didn't consider the major emotional impact of the terminal diagnosis. The other amazing support was the Prostate Cancer forum. There are sections there for people who have a terminal diagnosis, and their families, and people are so supportive and knowledgeable. There are excellent info leaflets to download, info about the latest research trials, and a helpline (email or phone) that you, your mum or your dad can use to ask questions or just wail! If you can possibly persuade your dad to let you or your mum start to go to medical appointments with him it will help a lot. It gets harder and harder to take everything in and ask all the necessary questions / remember the answers. If there are two of you one can take notes and your dad will need knowledgeable support. Wishing you the best in an impossible time. x