Dad just diagnosed. Need advice

Hi SR12, welcome to the community, sorry to read about your Dad’s diagnosis.

Although his cancer is still contained within the prostate, the T2c staging means it is at the edge of the capsule and in danger of escaping the prostate next.

Starting hormone therapy now will stop the cancer escaping by starving the cancer of testosterone which it uses as a fuel to grow. The hormone therapy will also weaken the cancer and make radiotherapy work more effectively.

I think it sounds like he is on the best treatment path for him.

This website has lots of helpful publications, here is one which might be of use

https://prostatecanceruk.org/media/2498706/prostate-cancer-a-guide-for-men-whove-just-been-diagnosed_ifm.pdf

Best wishes to you and your Dad,

Hi

Maybe and idea to formally request the full biopsy lab results. I didn’t get mine initially and had to request them directly from my consultants secretary.

Sounds like a reasonable treatment plan but any concerns.....it’s easier than you think to get a second opinion. 

TG

I would be inclined to get a second opinion if only for the fact you seem to have a bolshie consultant. It may even be worth waiting 3 months and getting another scan before deciding.

The urologist isn't obliged to give any information to a relative unless they have a written request from the patient to do so; perhaps if Dad asks, the urologist will provide the information. But does dad actually want to know about the number of positive cores, % of each core, etc?

No point waiting three months and asking for another scan if he has already started on the hormones.

Hi SR12,

Good to hear from you again, and I'm glad your doing some sensible research on this disease.

The biopsy doesn't quite make sense, but it is easy to mis hear things, with so many numbers. It may have been cancer in 4 cores and 2 had a maximum of 15%, or some other combination. Anyway whatever the numbers it is clearly a moderate amount of cancer, but not a massive amount.

Waiting a few weeks will probably not make any difference, the cancer may have been there several years already and be growing very slowly, so a few weeks won't make a difference. 

Maybe gathering all the information together, not starting HT yet and having a further psa test in a few weeks, will help you decide? if the psa has gone up it would suggest treatment is required if it stayed the same maybe you postpone; effectively you would have taken on Active Surveillance almost by default and against the advice of the consultant. 

I think all HT injections do roughly the same thing so I suspect the side effects will be the same whichever he has. The side effects may not be as severe as he expects, everyone is different so until he is on HT he won't know if it is troublesome for him. If he really can't stand HT he will just have to stop, it will take a minimum of three months to get the drug out the system so he will have to endure the side effects for a while.

I've been on HT for two years, I'm  glad to be coming off it now but it wasn't too bad for me being on it. 

Edited by member 17 Jul 2020 at 07:29  | Reason: Not specified

Hi,

You are correct you have been doing AS for ten years without realising it. The finasteride does confuse matters, but I think we will go with the generally accepted wisdom that real PSA is about double the measured PSA when on finasteride.

With AS the objective is to keep monitoring until some threshold is reached and then to move to a more aggressive treatment. I think the consultant would argue that threshold has now been reached.

The fact this cancer has been progressing slowly over the last decade suggests an extra few weeks(months, years?) to decide will not be a great risk to his survival.

I did not have many side effects from HT: no libido, and impotency (not a problem when you have no libido), dry orgasm, some hot sweats but not many (perhaps once or twice a month and they only lasted a few minutes), a more emotional personality, perhaps a little more irratable (none of these were massive changes in my personality but I think they were because of HT), not much change in weight, perhaps a little less muscle mass and a little more fat, but not much either way. I have been off HT for about 3 months now, I would not say I have made much of a recovery yet, I hope that over the next year things will improve. The statistics for RT and HT together are quite impressive, the major benefit of the HT is in the few months before and after RT the second year of HT may not be adding that much to your dad's chances of survival, so maybe he should just stop it early if he doesn't like it.

If the cancer becomes advanced then HT can become a lifelong treatment, I would not like to be in that position. 

You will find a few people on this site who have had treatments which have failed and have now decided that Quality Of Life (QOL) is more important than pursuing an extra few years of life.

The following is an interesting tool from the NHS it takes a bit of playing with, and at the bottom you will see the results can be displayed as "Curves" and you will want to tick the "Radical" box to see all information:    

https://prostate.predict.nhs.uk/tool

For your dad's details (I have had to guess a few things) it says your dad's chances of surviving 15 year (i.e. to age 92) would be about 28% if he had never been diagnosed with cancer, 21% if you did not opt for any treatment, and 24% if you opted for radical treatment (surgery, or RT outcomes are about the same).

Another way of looking at this is to look at the curves and see how many years until 50% of people currently your dad's age will die, this is what would normally be called life expectancy. If your dad had never been diagnosed with cancer his life expectancy would be another 12 years, if you do nothing his life expectancy would be about 10.5 years (the last year or two may be painful), if you go for radical treatment his life expectancy is about 11 years (and probably only painful for the last few months).

I don't know how accurate the NHS tool is and everybody is different. I think I would advice your dad to take up motorcycling and parachute jumping both will increase his chances of dying from something other than prostate cancer.

Edited by member 17 Jul 2020 at 10:56  | Reason: Not specified

At his age, Operations, are not a good idea.

My father in law was diagnosed with a T2 G7(3+4) at the age of 79 and chose AS because he was concerned about his sex life (with a wife nearly 20 years his junior). He lived for 4 years. Most of that 4 years was very settled and happy, he had no symptoms to speak of and spent the month before he died camping in France in a new tent. There was no indication that it had spread to his major organs until 24 hours before he died. We might have preferred for him to have treatment and stay around for longer but we had to respect his right to choose.

Hi, 

My side effects from RT were minimal, but I had HDR Brachy followed by 15 treatments of external beam RT (EBRT). Your dad will probably be getting 20, or more commonly 37 doses of EBRT. The main danger is that about 1/5 of that dose is hitting the bowels which doesn't really want any radiation damage. One of our members said "never trust a fart", well since RT I get a lot more skid marks in my underpants. It's not a major problem, but it's not great.

I rode the motorbike (I practice what I preach) to all my RT sessions. I had no problems with tiredness or concentration, and no sudden need for the toilet (which some people report, take a wide knecked bottle in the car and a towel to hide what your doing is advice I've heard but never needed). Remember I only needed 15 sessions, maybe if I needed 37 i would have started having problems later on. 

A long term problem with EBRT, is the possibility of bowel cancer in later life. For older people it is unlikely to become a problem but for people in their 50s it is something to be vigilant for over the coming decades.

One of our members Andy62 runs a support group at Mount Vernon, due to covid these now occur by zoom. It might be worth getting involved with them.