Hi all,
I posted a while ago on the "welcome" channel, but I'll try here too for some advice and an update on the situation.
My dad, who lives in Italy, has metastatic castration resistant prostate cancer, with extensive bone metastasis. He went through several rounds of different therapies, pretty much anything available to him and a couple of clinical trials too. I'm sure these all helped as the first metastasis were first identified in 2019 and he's been perfectly fine, living a normal very active life until this year.
In January he had a serious car accident, he was lucky to survive it with only a few broken bones, but seen how he already had cancer lesions on his upper body, breaking a few ribs definitely didn't help. He slowly recovered but the pain never really went away, in fact it got worse and worse this summer until he struggled to move. At this point I was really afraid he had spinal cord compression, and to be honest I'm still not quite sure he definitely didn't have it, as it sounds exactly like he did (he says the doctors never told him it was SCC). Anyway, there definitely was some spinal cord damage from the amount of lesions - he finally was able to have an MRI and radiotherapy, but a mix between his symptoms and the side effects from the radiotherapy got him in hospital, practically unable to move.
Since then, he's been doing much better. They transferred him to a rehabilitation centre where he gets physiotherapy every day, he is on a wheelchair but he's slowly relearning how to walk. We all thought it was touch and go for a while there, but every day he makes progress, the physio is very happy, and aside from his movement issues he's not been in much pain and things seemed to be looking better.
He wanted to do an experimental lutetium therapy, which he was initially referred for, but his bloods aren't "good" enough for that. It's clear the metastasis has reached the bone marrow so his blood cell count is a bit all over the place, he's also had some transfusions.
This was a definite setback, and since then the only therapy he's had is hormone tablets. Again, he's not really in pain, he makes progress with walking, and he is fairly independent in going to the bathroom, etc, as well as doing anything he wants while sitting on the chair (including still working on his laptop).
Now I just had a call from my him and my mum, he's developed a strong headache and is having some issues moving his tongue (definitely affecting his speech). The doctor said it's likely a cancer lesion affecting a nerve at the back of his neck, so he'll be referred for another MRI and targeted radiotherapy to address that before it gets too bad.
This whole ordeal is obviously really hard on my mother, and is very hard on me, especially as I'm following everything from afar, and I feel very disconnected from it. There isn't really an equivalent of Macmillan or similar in Italy, and there isn't much I can do from here. I'm so torn between staying here and adopting a "wait and see" approach, or just flying over there and be with them. It has all precipitated so quickly that I legitimately don't know how much time my dad has left. He very much is a fighter, keeps on saying he's got no intention of dying, but I'm scared and I don't know how this reflects the reality of the situation - when it always seems like it's one step forward, two steps back.
Anyway, any advice people could have on outlook, considering the situation, would be very welcome.
Hello Huilang
Another welcome back to the forum - although I am sorry to find you back here under the circumstances. I do remember you from about 6 weeks ago and I very much understand your situation.
As dad is in Italy at Macmillan we can offer the support of the Online Community for you but not many of our other services I am sorry to say.
Whilst none of here are medically qualified and we only make our suggestions from the information given by the Community Member - I think in your case a visit to see dad - and his team is quite important. The last developments regarding his speech and headaches don't sit well with me - and if it was my dad - I would be off to see him and his team to find out just where we are. A visit for a few days/week would surely help you to get a better understanding of the situation and also seeing mum and dad can't be a bad thing.
This is only a personal opinion and nothing to do with me being a Macmillan volunteer, but I do hope it helps.
Best wishes - Brian.
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
Strength, Courage, Faith, Hope, Defiance, VICTORY.
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Hi Brian,
Thank you for your reply and yes I remember you from before too!
In between then and now I did go back to Italy to visit him - when I saw him he was doing so much better, he actually looked much better in himself than before, he was up all day working etc even though in this hospital facility.
I agree that this latest development sounds worrying, so I may well go back again. He somehow doesn't seem overly worried and he's not been taken back to proper hospital (/emergency care) so it can't be too bad I guess? Hopefully they can do some scans very soon.
Hello Huilang
Thank you for your post.
It sounds very much like dad is a fighter - some of us just get on with life and don't let cancer define us - and if he's in a good place himself - may be it is Ok to wait for the scan results to see just where he is with it.
As you say, if he's up and about working then things can't be too bad.
Keep us posted please as to how he gets on.
Best wishes - Brian.
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
Strength, Courage, Faith, Hope, Defiance, VICTORY.
I am a Macmillan volunteer.
Hi Huilang , Brian has given you a good take on it. I think if you can’t just drop everything easily, maybe ask your mum and dad if they want/need help now and if not make sure that they know you are supporting them. If they have questions, perhaps you can pose them here and give them support that way. PCa isn’t generally fast moving and his team are still treating him. Best wishes, David
Hi David, thank you for that.
I guess my main question is around treatment options and outlook for my dad's situation at present. It looks like he'll be able to do an MRI tomorrow and we'll know more after that, but one of his doctors (who is also his cousin) told my mum there's unfortunately no guarantee that they'll be able to do another localised radiotherapy to the back of the neck, where these latest problems are stemming from.
From reading up on similar issues (not from random websites, but Macmillan or Cancer Research UK etc) it looks like surgery could maybe be an option? He's not had any surgery ever since the prostate cancer was identified years ago - nothing to strengthen the bones yet, or to remove pressure on the spine etc.
Also any other treatments that might be "out there", as unfortunately it looks like we have exhausted the options available to him at his hospital, but he's not given up on finding something.
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