So many unknowns...contradictive answ... - Advanced Prostate...

Advanced Prostate Cancer

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So many unknowns...contradictive answers...i wish i knew how long this journey has left....

Daddysgirl123 profile image
7 Replies

My dad, bless him has been ill for a few years. He has 2 collapsed disk which he has put up with for a long time. Roughly this time last year whilst he was at f1 racing in spain he started to have some strong pains in his hip and spine. When he returned home he had to go to the doctors. Told her all his symptoms, she sent him home with paracetamol. He ended up in bolton hospital 4 times with bleeding from back passage. Pain and generally unwell. Still nothing. He was under a doctor whos job it is to find cancer.She thought it was testicular cancer. Still nothing. Then finally he went to a different doctor, after months of being messed around. He told my dad he had a suspicion but needed some blood. Finally a psa was done over 600 it revealed. Now why wasn't it tested by the oncologists? After scans etc it was realised the extent of spread. He had to have 2 bags of blood given as his levels where so low he could have died. Am i right to think its stage 2 of mets is when its spread out of the pelvis but not to the organs? Hes had 6 rounds of chemo. And 7 rounds of radio therapy.Also hormone therapy by means of injection every 3 months. Im very proud of the way he faced it. His psa came down to 7.6 but half way through chemo his psa started to rise as of last week it is at 42. The thing is at christies on the last round of chemo, actually 2 days before chemo he sees another oncologists who says hes done very well and wont need another bone scan because his psa has dropped and he looks better...only thing is an hour after chemo his leg which has been o.k, going to his hip was hurting so bad he couldn't cope . He spent 3 days in hospital where they found the cancer had spread more. Within a couple of days he had more radiotherapy. My dad has also been told it doesn't go beyond the knees or elbows or the brain. I know this is rare but it does happen doesn't it?. He is being started on another hormone treatment next week. My problem is my dad lives in Manchester and i live in Scotland. It's a 9 hour drive. I went down in october to look after him and i came home last week with the hope to pick him up before fathers day. I thought his treatments where over and he could live a lot but now he has to stay for close review. I have 3 girls.14,12 and 6. I home schooled them whilst we were in England but i exhausted my self physically and mentally. It's nothing compared to what my dads going through but now I'm torn. I don't want to live in England but is my dad going to live long enough to make a home in Scotland . i would give up my life here but in the knowing i would be coming home. I don't want to miss out on time left with him. Were on duo everyday and night. It's keeping him going he said. But it's not the same as being there and taking care of him.

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Daddysgirl123
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Daddysgirl123 profile image
Daddysgirl123

Thankyou for the reply the first question was rhetorical. Incompetence not testing a psa , especially being a cancer doctor. And i was wondering if anyones has or knows someone who cancer spread beyond the knees and elbows? He is under a good oncologists as of now who is willing to try all he can but we will know more next week. That wasn't even the half of it but i thought.o.k you've wrote enough info for now lol. Thankyou again 🙏

Daddysgirl123 profile image
Daddysgirl123

Thankyou so much. I will screen shot it and go to christies trial place. At this point we have to try things that are proven to work and the germans are defiantly up there . take care 🙏

ctarleton profile image
ctarleton

You may have already seen this type of thing before. It has an overview of most common treatments in the UK for advanced prostate cancer.

prostatecanceruk.org/prosta...

This link shows a trial involving Lu-177 at various place in the UK. One site is to the north. The rest are all in the south.

bepartofresearch.nihr.ac.uk...

A physical "move" at any age is a big deal, particularly with health & mobility problems.

In our family experience with older relatives, trying to do some planning in advance of need usually turned-out better than scrambling to deal with a sudden long distance health crisis. Now would be a good time to start having those deeper level conversations. It's really important to know what HE wants, overall, as a foundation for whatever caregiving support you can give, with or without any assistance from outside the family.

Charles

Knallkopf profile image
Knallkopf

Stop home schooling, which drains you and is anyway cracy and go to your dad. You have only one dad and when he is gone he is gone.

luvhealth profile image
luvhealth

You may want to suggest to your dad to consider going to the Care Oncology Clinic in the UK. Here is their website: careoncologyclinic.com/

Jane8889 profile image
Jane8889

After 6 rounds of chemo and Lupron shots my Dad’s PSA was very low too and things were looking good but a bone scan showed new mets. PSA isn’t always a reliable indicator unfortunately. He already had mets in hips, spine, and shoulder, now new ones in those places as well as skull. Another scan also found an aneurysm which he just had treated and is slowly recovering from, a lesion in the neck that is next on our list and suddenly the next prostate cancer treatment was moved to the back burner.

I personally don’t want to know how long my Dad has left. And with this disease I’m not really sure anyone knows....

Sorry that you are in this boat. Prayers to you and your family!

j-o-h-n profile image
j-o-h-n

I think you answered your dilemma when you stated that "he is under good oncologist now" and that's in England. If you can assure yourself that he would get the same medical treatment in Scotland then move him to Scotland to be with you. Otherwise I think you have to move to England to be with him (tough for the children however). What is your Dad's age? How about your Mom? Do you have other siblings that could share with the needs of your Dad? Well I wish you all -

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 06/13/2019 10:45 AM DST

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