Hi everyone, My Dad has had Prostate cancer for several years and gone along just fine. Unfortunately he had 2 severe infection last year which gave the cancer a chance to take hold. He now has secondary bone cancers in his spine, pelvis, shoulders etc and also his bladder. His PSA score has gone from 130 to 545. We know this isn't good but I am trying to keep his spirits up.
I would like to understand this score but when I look up PSA scores it is written as 120/50ml or similar or as a Gleason score. I do not know what my dads numbers would look like written as these.
How high can his score get?
His heart and oxygen levels are good and his blood pressure low. Just not his PSA score.
Any idea's please? I can't let him give up.
Thank you.
Hello Ponge, welcome to the community. Sorry to read your Dad’s prostate cancer has spread. Usually PSA is quoted in ng/ml. 545 ng/ml is high.
I would expect him to be on hormone therapy plus Abiraterone or Enzalutamide or chemotherapy if he can tolerate it.
Is your Dad currently on treatment for his cancer? It would be really helpful if you give us more information so that your question can be answered properly.
What age is your Dad, how is his general health?
When was he diagnosed with prostate cancer, what were his Gleason scores, MRI results, bone scan results?
What treatment has he had and when?
Ido4
Thank you for your reply,
Dad is 76 and was diagnosed with prostate cance about 12 years ago. He had COPD which is managed with steroids and had a catheter fitted when the cancer moved into his bladder. After several weeks of difficulties and a serious case of urinary sepsis, Dads health is generally ok.
Dad was on hormone injections for years. They tried Enzalutamide but that didn’t work at all. He has had radiotherapy to his spine and bladder which helped with his pain but now is only receiving a Zometra drip monthly to strengthen his bones and calcium tablets. He has Dexamethasone tablets every other day but the Dr has said that he could stop these as they aren’t working now.
We have not been told his Gleason score so I will ask next appt.
Oncology only want to see him bi-monthly now as his treatment is pain management and palliative only.
I appreciate you reading this. It’s so difficult trying to keep him upbeat.
Thank you
Dear Ponge,
I'd like to wish you every possible ounce of strength to handle this situation, and your Dad every good fortune in terms of his pain management.
You've both been through an awful lot.
Very best wishes,
Jonathan x
Thanks for the information Ponge. I am so sorry to read about your Dad’s situation.
Do you go to oncology with him? I would think hormone therapy would still reduce any non castrate resistant cancer cells and help him. This would still count as palliative care if he can tolerate it.
Sending you and your Dad my best wishes,
Ido4
Thank you Ido4
I believe they have stopped the hornone injections now as with the other drugs they state they aren't making a difference.
Yes I attend all appointments with Dad as I am his transport and carer on those days. He is very focused on his PSA scores and asks as soon as he goes in and then doesn't hear much else after that.
Basically they have said there is nothing more they can do for Dad apart from manage his pain. The cancer is being left to spread. Dr told me it wont be the cancer that kills him but if he gets an infection and hes too weak to fight it. Thankfully they didn't put it that frankly to Dad, but since he was given his high score at the same time as being told only to come for bi-monthly appts he feels they are leaving him to die, much sooner than he is ready to.
I try to blind him with science and keep his spirits up but he is a clever man and I am struggling with how or what to tell him.
Finding this page is helping. Know that I can put my feelings down is a great support to me.
Thank you.
Hi Ponge
Although Psa has a big say in how the cancer has taken over the body. I have known people with psa of over a thousand I myself was 893.
The bone infection can be controlled as mine is, if he has had this for several years he is obviously a fighter, what type of hormone medication is he on ?
There are many good drugs out there that helps hope he has not tried them all.
take care
joe
Hi firstly I,m saddened to hear of your Dad,s situation, I to have advanced prostrate cancer which has spread into my bones, mainly hips spine ribs an shoulders. I had a course of chemo nearly 3 years ago along with radiotherapy, my PSA at the time was 197 my gleeson score was 4+4 an was told the cancer was aggessive. I was only 53 when I was diagnosed but I am a firm believer in P.M.A. which is positive mental attitude an decided to fight this from the start. I am now taking a drug called Aberetterone, which I have been taking for 19 months my PSA is now down to 1.6 an I,m doing ok, my diagnosis has gone from 3-6 months to whenever. So at your dad,s next appointment ask about different drugs, the ones I take do have side effects, mine are they make me really tired which is only minor compared to some. Do not be afraid to challenge the Dr,s and my other piece of advice to you would be to write down things you think of between appointments because your forget them come the day. I,m down as palliative care only but that dont stop you from asking for treatment. I hope this helps you but don,t be scared to ask me any questions you may want to ask ok. Best Wishes to you all Eddie.
Thank you Eddie
Its the PMA that is so difficult. I know I need to keep him up mentally. It can be exhausting trying to find ways to do that constantly.
Having answers from everyone is really helping though.
Good luck and good health with your own personal journey too.
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