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Lorraine is a nurse specialist and sex therapist and volunteers here to answer your...
Hope everyone is doing well. I was looking for some advice / similar stories from others to get things straight in my head. My Dad was diagnosed with metastatic prostate cancer in Oct 2018, it was widespread in ribs and spine. He was put on the hormone injection which helped. In September 2019 his PSA started to rise and they tried a tablet (I can’t remember what) but it didn’t help. So in December 2019 they gave him abiraterone, he had a scan and they said widespread in spine, in pelvis and lymph nodes. His PSA continued to rise until March 2020 to 44 where it began to decrease and is now 28. Around 4 weeks ago his legs and ability to go to toilet went and he was rushed for MRI and diagnosed with spinal cord compression. He had one dose of radiotherapy. They told us they expect he has 3 months or less to live. He is now bedbound with carers 4 times a day who can hoist him in to a chair for part of the day. However, he is still on abiraterone and steroids and currently pain under control. And today the oncologist told him over the phone his PSA has come down further. So should we come to terms with the prognosis of 3 months? Or believe that if the abiraterone is still working then surely the prognosis can not be that poor? Any advice welcome, it’s such a rollercoaster. And I pray that he will keep fighting always! He is so strong! But I just need to know for my own mental health what the likely outcome is going to be.
Hi thomasl, I'm sorry to read about your dad, although the fact that the PSA is down again has to be a good sign. Prognosis for length of life is so variable. One of our champions was given a few months to live and is still here 5 years later so it can happen. Oh, I feel for you with mental health and emotional suffering. I know what it feels like to be on that rollercoaster. I handle my own by looking at it in the bitter sweet way; my husband is still here so I'm lucky is the sweet and the bitter is that I know he won't always be here. It sounds strange but it's a strategy that works for me. Also a psychologist told me to ground my distress into a good memory and that works wonders. Take any time you have to make new memories; it really does help to have those times together that you can look back on and be grateful for. I had a wonderful last hug with my dad which gives me such comfort. I hope the prognosis proves to be wrong and that you have more time than you thought.
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my husband was diagnosed last July with metastatic cancer we are on the same meds but now castrate resistant so changed steroid just started to get pain in his ribs so offer a dose of radiotherapy hopefully on Wednesday but a bit lost as all appointments been phone calls and he goes alone at the moment and not the best at getting all the facts .He doesn’t have any lymph nodes effect .I don’t have any answers to your questions we where told 2 years when first diagnosed but it not been a easy jounery his psa goes up and down couldn’t tolerate chemo and I suppose to scared to ask about out comes I am lucky he’s mobile
we are just taking everyday as a new day and enjoying what time we have we try not to think in numbers but experiences I personally find it hard when they say palliative care I think when you are giving news you go into a state of shock and need to digest
we where in touch with the hospice from the beginning as they dealt with his pain control they have been amazing and offer couscelling I don’t know if that would be an option as it’s helped us with the emotional rollercoaster of dealing with the diagnosis and outcomes
stay strong keep fighting sorry I can’t be so any more help take care
google JOE TIPPENS MYCANCERROCKSSTORY
its never too late keep fighting
Thank you for your reply. Dad unfortunately lost his battle on 7th May. x
So sorry to hear that. Thinking of you.
Sorry to hear that. I hope you and your family are OK.
so sorry to hear that , r.i.p
So sorry to hear that. My thoughts are with you and your family at this very difficult time. X
I'm really sorry to hear that, please stay strong, my thoughts go out to you in this sad time.
Really sorry to hear that. Such a difficult time for you and the rest of your family especially with the Covid 19 restrictions as well. Please accept my sincere condolences.
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