Hello,
I wonder if someone can help me. My Dad was diagnosed with prostate cancer in 2019. He will be 82 next week. We were told that having been caught early that he will die ‘with’ cancer and not ‘of’ cancer. Sadly, this hasn’t proven to be the case. I don’t have all the facts about what medication has been on as throughout the journey he has pretty much clammed up but I do know he has had hormone treatment, he also had radiation treatment when if was found that there a small amount of cancer in his ribs and it has since gone to one of his hips so it is now c. metastatic. He embarked on chemo late last year (10 rounds but he only did 9 as struggled), which finished in March and while the PSA remained steady throughout the treatment, it did not go down. At the first call 6 weeks later it was steady still but about 3 weeks ago another PSA test shows the PSA had gone up significantly. He had a scan and another PSA test last week and we are due to go in to see the consultant this Monday 6th July.
Obviously we are devastated as it appears the chemo hasn’t worked if the PSA has gone up and the doctor said on the phone that he was ‘running out of options’. Presumably it has / is spreading.n No doubt others have had the same news and I was after some advice of what we can ask the consultant on Monday. He is in a lot of pain but has been told to just take paracetamol but he can hardly walk and has to get up in the night and sit in a chair to sleep for relief.
I have enquired at the Royal Marsden about a second opinion and if the insurance covers it (or even if it doesn’t) we can get an appointment in 2-3 weeks.
We were assured by our GP that it was best to stick with the NHS but I really wish he’d used his private medical insurance. The PSA has just kept going up from the very start and we really haven’t had any good news since he was first diagnosed. If there hadn’t been so much waiting between appointments perhaps the outcome would be different. I keep seeing articles about how if caught early it’s treatable but that hasn’t been our experience at all. It’s academic now I suppose.
Sorry for the long email. I guess my questions are a) what are the best questions to ask the consultant? I will need to tell him about the Royal Marsden as I’ll need the forward the scans but obviously I don’t want to offend and so I realise will have to be careful how I approach this. Are there any new treatments / recommendations that other people are having that I should mention? I believe the consultant did mention more radiotherapy which should help with the pain.
Also, what other help is available? We haven’t been to Macmillan. Perhaps we should be reaching out for help but I’m not sure to who. I have been driving Dad to appointments etc but until now we’ve just followed the advice and I feel I need to be more proactive as I don’t want him to just be written off.
This is the first time I've posted and I'd appreciate any insight / advice / thoughts anyone might have.
Hi Oldddragon and a warm welcome to the Macmillan Community but I am sorry to hear about your dad….. this is such a challenging time for you all.
I know from experience having been on my cancer journey for over 26 years with two very rare, hard to treat types of Non Hodgkin’s Lymphomas (one incurable), Asbestosis and Prostate Cancer that navigating this journey can be such a stressful and challenging time but talking with and getting support from people who have walked or are walking the ‘exact same' treatment journey, be it as a patient or caregiver can help a lot.
As you see the Community is actually divided into dedicated Support Groups (Discussion Rooms) and I can see you have already put the same post up in our dedicated Prostate cancer support group.
This group is a safe place to talk to others who may have a similar diagnosis, treatment experience, to ask questions and get support from family members who are navigating the same support journey.
As for the practical and emotional challenges of supporting your dad and indeed yourself you may benefit from joining and posting in our general cancer……
Carers only (if you are her caregiver)
Supporting someone with incurable cancer
……. support areas where you will connect with a wide range of members navigating the exact same support challenges.
As always the Macmillan Support Line is open between 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00…… this service provides cancer information, practical information, emotional support, benefits and financial guidance or just a listening ear.
Talking to people ‘face to face’ can be very helpful so do check to see if you have any Local Support in your area, do also check for a local Maggie's Centre as these folks are amazing.
Do get back to me if you need further help navigating the community.
