Waiting on tests- spread to bones? Advice please

Hi

The waiting period,  between the various tests, is enough to drive anyone bonkers!

PSA of 52 isn't too bad - there are some in the 1000s. He must have had some scans, as they are saying it had spread. Do you know his results so far - staging etc? It would help us if you do.

I will leave one of the others to comment on PC spreading to the bones.

If your Dad is in pain, he really needs to speak with either, his GP or, perhaps, the Oncolgy team. I'm sure he won't be the first to experience such symptoms.

Finally, if he doesn't have anyone to go with him, perhaps you could as, I'm sure, he would really appreciate the support. Obviously, this might not be possible depending on your commitments, but having an advocate is a great benefit.

Hope this helps

Stuart

Hello Mozz 

A warm welcome to the Macmillan online Prostate Community - I am so sorry to find you here.

The simple answer is if the cancer has left the prostate and spread to the bones - yes it's treatable but not curable. i really wish consultants would not comment on survival chances though. We have Community members on here with "Advanced Prostate Cancer" living an almost normal life 10 years plus after diagnosis.

Your dad is at the start of a "journey" - the diagnosis, tests and waiting for results is somewhere we have all been, it's the hardest part of the journey - waiting for a full diagnosis and treatment plan. Once you have this life will settle down to a "new normal". Below is a link to our information on "Advanced Prostate Cancer"-

https://www.macmillan.org.uk/cancer-information-and-support/prostate-cancer/advanced-prostate-cancer

That's a start to answering your questions - my personal way of dealing with the wait was to go and do things I enjoyed and try to forget the whole thing - it worked to a point - then I started to learn as much as I could about the cancer!! As an aside use trusted sources for information Macmillan or Prostate Cancer UK (not Dr Google!!).

My advice to you now is try and keep dad as fit as possible - one side effect of treatment we all get is fatigue.

I have read your comments about dad being in pain when he goes to the toilet - have you spoken to his GP or his urology team about this?

I hope the above is a help - please come back with any questions - however trivial - someone will have the an answer for you.

Best wishes - Brian

Hello Mozz .

Welcome to the group. Oh how I wish comments like a 50/50 chance of survival are not made as it immediately gives the impression that you have an imminent death sentence. Treatment is given for all forms of prostate cancer unless you have a small slow growing one when it might be appropriate to just watch and monitor it. To help you understand a little more can I suggest you download a free copy of this book which will hopefully help you understand what is happening and, more importantly, what treatment is available.

https://issuu.com/magazineproduction/docs/js_prostate_cancer_guide_for_patients_ezine

These first few weeks are the most difficult to deal with for most of us but things do get better once you have a diagnosis and treatment starts. The diagnosis will usually be given by the Urologist who will then refer your dad to the Oncologist who will sort out a treatment plan tailored specifically for your dad. No one can give you a prognosis at this point because they cannot tell how the cancer is going to respond to the treatment, or how your dad is going to tolerate it. The first step will probably be to put him on hormone therapy which will quickly remove the cancers food no matter where it is in the body. This then gives time to sort out the treatment plan. 

Your dad's pain when going to the toilet may be due to the cancer but he does need to tell the doctor as they may be able to help. If he is having problems urinating he should make sure that his flow is maintained as it can be dangerous if a blockage occurs. Sometimes the biopsy can cause bruising. If he is constipated then there are stool softeners or stronger medicine which might help.

Finally, my husband was diagnosed with advanced cancer over 4 years ago and he is still going strong so be positive. Please come back with any questions and we will try and help but let us know what your dad's diagnosis is when he gets it next week and we will try and explain it further for you if you want.

Hi Mozz, I'm so sorry to here your Dad was given that diagnosis, my husband who is 74  has advanced prostate cancer that has spread to his bones, his psa was 473. He was put on hormone injection, tablets and chemotherapy which he has just finished, he tolerated it very well, his psa has come down to 0.18 as of last week and yes the urologist was not sure of his prognosis but the oncologists said years.

Please if his in pain he should speak to someone it may have nothing to do with the cancer and something like a uti.

All the best for your Dad and family.

Hi Mozz

As has already been said  the 50/50 approach not at all helpful.

I had a comment from a consultant many years ago that he has had patients on HT for 10 years or more and they are still here.

So, yes, not curable but def potentially treatable long term.

There are also new treatments available and u could check out clinical trials ,  i think immunotherapy  is on offer for more advanced cancers so worth checking out,

But also it may not have spread to the bones so best to come back on here when u have an update.

all the best

Steve

Hi

Sorry hear this news. I too was diagnosed with advanced prostrate cancer, the cancer had spread to my pelvis and spine. 

This diagnoses was in December 2022 but following triple therapy that includes 3 monthly hormone therapy injections, darolutamide tablets and chemotherapy treatment my PSA is now non-detectable. I have been told my cancer is not curable but it is manageable. 

What ever treatment your Dad receives I'm sending my best wishes. 

Take care. 

Your Dad's Cancer will be treatable and I do wish the Doctor's had not mentioned anything about 50/50. 

Unfortunately, we have all had to wait for tests and answers and meetings between all the Docs involved to get diagnosis and treatment plans sorted out.  First things first you must make sure your Dad tells his GP and his urologist that he has problems going to the toilet as they should be able to prescribe something to help alleviate the problem.  If it's only days or a week since his biopsy there is likely to be bruising and inflammation that has caused this and it may go away slowly- I had this for a few days too but it soon started to get less and less but if this has been going on for more than a few days to a week and doesn't seem to be getting better then he does probably need to have something prescribed to help him.

If you go onto the Prostate Cancer UK website have a look at the Prostate Cancer Toolkit - a collection of pamphlets that can help you to understand the processes that lead to a full diagnosis, explains the medical jargon and likely treatment path.  You can also make use of the Prostate Cancer Specialist Nurses helpline - a free phone number 0800 074 8383.  The lines are open Mon, Tues, Thurs, and Friday from 9am until 6 pm and on Wednesdays from 10 am to 8pm.  They are very helpful and a pleasure to speak to.  We made great use of these at the start of my journey as it was practically impossible to get in touch with my key worker at the hospital as she was so busy.

Many years ago my Brother-in-Law was diagnosed with Stage 4 Prostate Cancer at age 54 just after he had taken early retirement due to a bad heart,  He had a PSA in the hundreds and in between treatments it went into the thousands.  He lived with many forms of treatment until he was just shy of 70 and continued to take driving holidays across America in that time and saw his eldest two grand daughters (twins) graduate.  His wife and sons still meet his oncologist at various fund raising events in their area and he always tells them that if he had some of the treatments he has now he could have given him a few more good years.

When I started on my 9 months Hormone Therapy (HT) injections the nurse there told me she had a couple of gentlemen who had been having the injections for over 20 years and still going strong - they were both in their 90's

Now onto my preaching!  Now that your Dad has had a Prostate cancer diagnosis you should know that any close male relatives he has are more at risk from developing this cancer as well -  so his father, brothers, sons and probably nephews as well.   So make sure that from the age of about 45 to get a PSA test regularly - probably every two years and from between 50 and 55 start getting them annually for the rest of time.    If your GP is resistant to this explain that your Father has this cancer and hopefully that will do the trick. Otherwise you can have private PSA blood tests to track your PSA and just last week I learnt that you could get a home test off Amazon from some one on here who got one which resulted in a higher than average PSA level so he went to his GP and had an NHS test and is now awaiting the diagnosis process as your Dad is.  Don't just inform your male family members either inform male friends too - I tell anyone who will listen and even those who probably are not listening.  Hopefully though of the ones who do listen they will get their PSA tested regularly and if they are unfortunately diagnosed with Prostate Cancer will have caught it early and be cured.  My Father died with Prostate Cancer at 89 but not from it.  Myself and my younger brother were diagosed at exactly the same age and luckily had early treatment so are now "cured".  the earlier Prostate Cancer is diagnosed the better the chance of a "cure"  So, as you can imagine my two sons are vigilant as will my two grandson's aged 19 and 16 be too as they not only have had the Prostate Cancer from one side of the family with my Dad, myself and their great uncle but also from their Mother's brother their only other Uncle and their Mum died at 52 from misdiagnosed Ovarian Cancer which luckily her younger sister also had but because of what happened to her sister was vigilant and was also diagnosed early so had early treatment.

All the best and I hope I haven't put you off coming to this Forum.  Please come back and let us know Your Dad's full diagnosis and treatment plan and how you are getting on.

Take care of yourself and your Dad.

Hi Stuart,

Thank you so much for your reply- so far he has had CT and MRI scans, biopsy and blood tests. His results from the MRI came back as "very concerning features of locally advanced prostate cancer". Other than that and the 50/50 comment, we have been given nothing so all the possibilities seem endless and it is so easy to start to overthink.

Thank you to all the helpful comments on here, as I got my dad to speak to his GP this afternoon about the pain and they have taken a urine sample to test, as well as painkillers and antibiotics.

My mum has been great at going with him to appointments- he doesn't wish for my brother and I to be there for them and for the consultation next week so we're just respecting that for now.

Thank you again for your advice

Hello Mozz 

I know it's a difficult time - as your mum and dad are having a meeting next week, here's our guide on questions for dad's team:-

https://www.macmillan.org.uk/cancer-information-and-support/treatment/your-treatment-options/questions-to-ask-your-healthcare-team

It's a standard guide for any cancer. I would say to mum and dad:

* Before the meeting make your own list of important questions.

* At the meeting see if it can be recorded - we all miss important parts. Take notes and ask for a copy of the meeting notes. 

I hope this helps - as I said in my original post, feel free to ask us anything, however trivial it may be at the time.

Do let us know how mum and dad get on next week.

Best wishes - Brian.

Thank you so much for your message- this has really helped reassure me a little more, especially with your husband still going strong, as the 50/50 comment really made us think the absolute worse. I'm just really hoping for "good" news at the consultation and hope that treatment can help him manage his symptoms and prolong his life. 

I got my dad to speak to his GP this afternoon about the pain and they have taken a urine sample to test, as well as painkillers and antibiotics- thank you for advising this as we otherwise assumed it were normal for his condition.