Hi, I’m new here. My dad (73) had prostate cancer a few years ago which was treated with radiotherapy. His PSA levels have stayed low. For the past three months he has had worsening urinary issues, back ache and finally nausea/vomiting. He has called the gp multiple times and been to A&E seven times, where they catheterised him (causing him damage, much bleeding etc). Eventually he was referred for a CT scan. At his yearly oncologist check up two weeks ago, the oncologist saw he was clearly suffering and said she would personally contact a urologist. Two days later he was called into hospital with swollen kidneys, requiring bilateral nephrostomy tubes to be fitted. He couldn’t eat for 9 days as they couldn’t get his vomiting under control.
On the first day he was there, he asked a doctor how long the tubes would remain and she said “for the rest of your life because of the cancer spread”. This was the first time we had heard anything about cancer again. After repeatedly asking for clarification and getting no response, my mum and I went to the ward and waited until an urology consultant came. He told us “there’s a large aggressive pelvic mass, it could be prostate cancer recurrence that’s spread to the bladder, or bladder cancer that’s spread to the prostate. There are some spinal lesions as well.”
My dad asked if he needed biopsies and I asked about treatment to slow the progression (surgery, hormone etc) and the urologist said “None of that, it’s best to let nature take its course now, given your age and health”.
My dad is 73 and four months ago we were all enjoying a holiday abroad, going to gigs etc., so for him to just be written off like this feels very unfair. Yes he was acutely unwell in hospital, because his kidneys were poisoning him.
He’s home now, but still has the catheter and nephrostomy tubes in, which he hates as they cause him lots of discomfort and he just wants everything removed. I’ve worked in NHS for 24 years and I am disgusted at this treatment of my dad. I fully accept this is incurable, but to not offer a single thing? Does that seem right?
Hi AM123 and welcome to the Online Community but so sorry to hear about your dad's diagnosis and prognosis. A cancer diagnosis like this in the family can be such a challenging and stressful time but I do hope you will find the Community a safe place to get support.
I have no experience in this so can I direct you to areas on the community where you will connect with others who may be able to help. The Community is actually divided into support groups (discussion rooms) so can I recommend you join and post in our general Carers only and Supporting someone with incurable cancer support groups where you will connect with others navigating the same challenges supporting family. These groups are safe places to talk to others, to ask questions.
If you'd like to connect in with a group click on the Green (Bold) links I have created above. Once the group page opens click on the black banner that says [click to join] at the bottom, or the [Join] button under "Group tools."
You can then introduce yourself by putting up a ‘new post’ by clicking in the box near the top right with + New or + (Depending on the device you are using) and you are ready to go. You could copy and paste the text from this post into your new post.
Macmillan have many support services so do check out the Macmillan Support Line is open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00. These services provide cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear. We also have our Ask an Expert section but do allow a few working days for a reply.
Please do get back to me if you need further help.
Hi there,
I am so, so sorry to hear about how badly your dad has been treated! The fact that he bled a lot and had damage caused when the catheter was put in? Unless there was a complication which you should have been informed about, that should not have happened. It can't have helped with his condition at all. I honestly think you should try to make a claim against it :
(
I also think the urologist was particularly inconsiderate with their words. I'm not overly knowledgeable with medical practices, but I do agree with you that it's very surprising nothing else can be done to help your dad. Not even hormonal tablets...
Could I maybe suggest for your dad to try try taking beta-carotene supplements, if he isn't already? I've seen that can possibly help in slowing prostate cancer. My dad was diagnosed with it a few years ago (He's now in remission) and took beta-carotene and we think it may have helped a little bit combined with radiotherapy.
Have you looked into a second opinion, at all?
I hope you are able to find more help for your dad and that you will be ok... My best wishes are with you X
