trying to figure out how bad my dad's diagnosis is :(

HI there

My husband has prostate cancer and although I am no doctor, I would say that the prognosis is not too bad at all  The PSA is a little higher than normal, but not through the roof.

Radiation therapy effects everyone differently,  little bit more tired a few days later and may accumulate.

Having people around is a lot more tiring than going on WhatsApp video or Facetime.  Seeing nearest and dearest is soooo important, even if on social media.  

Your parents may not want you get on a plane in the current Covid climate. However, if you do come over, just being there and helping out is enough, but if Dad is more tired, there will be quiet times and a lot of TV.  Go with it.

Having something to look forward to is fab - perhaps set a date when you could come over

Hope this is of some help

Hi Octopus

Sorry to hear about your dad. 

What u r saying is absolutely correct, nowhere near the best but also not near the worst. He doesn't have bone mets which is obviously good.

He does have a low PSA, possibly because of the hormone treatment. Hopefully the Radiotherapy and HT will sort the cancer.  In answer to your question on his outlook ,  even if the RT didn't cure it  people can survive for years on HT and don't forget there are new treatments on trials as well.

Radiotherapy as a treatment is OK, not too many problems for me during treatment, a few side effects but these can be sorted with meds.

I think that it is normal for delay from starting HT to the treatment with RT, this allows for the HT to reduce the tumour size.

See what others say, this a good place to come for advice.

best wishes

Steve

Hi Octopus,

I was also 71 when diagnosed in 2018 with Gleason 4+5=9, a PSA of 11 in January that year (rising to 15 before starting HT in October). I was diagnosed as T3A N0 M0, so no spread to the seminal vesicles or bone mets. I started Bicalutamide tablets and had a Prostap (Leuprorelin) injection after a few days. The tablets are to  prevent tumour flare when receiving the first hormone injection. Starting HT will stop the cancer spreading any further and should shrink the tumour. Hopefully the RT will finish it off.

After several months of HT my PSA had dropped to 0.4 and I started 20 sessions of RT in February 2019. Since the RT finished my PSA has been undetectable. I am still on RT for another seven months (3 years in total), so my PSA may start to rise after that finishes.

There can problems from the HT, particularly hot flushes, but these can be overcome with treatment. I take Evening Primrose Oil and Sage Leaf capsules and the hot flushes have almost gone away. There can also be problems from RT, the worst of which is tiredness, but others can easily be treated by the team at the RT centre. I would suggest you should download the Prostate Cancer Toolkit from the Prostate Cancer UK website.

Encourage your Dad to keep exercising as much as he can, the fitter he is when RT starts the easier it will be.

At the time of my RT treatment we lived on a Scottish island so I had to stay in an hotel through the week but managed to get home for the weekends. Some hairy ferry journeys but we got through it. My wife and both my sons managed to visit for a day at different times which relieved the boredom, but a day each was enough for me. I also spent a lot of time at the Maggie's Centre adjacent to the treatment centre which was a great support.

It sounds as though your Dad is getting the best treatment for his case and fingers crossed the PC will be cured.

Keep well and stay safe.

There is usually a delay of a few months before the radiotherapy; this is to allow the hormones to shrink the tumour to allow better targeting for the radiotherapy.

T3N1M0 is by no means a 'bad' diagnosis (relatively speaking!). Because the cancer has begun to spread, few doctors would describe the treatment as 'curative' - though with very local spread, he could get lucky. But even so, with fair winds and general good health, he's likely to have many years ahead of him, mostly disease free: Prostate cancer is a slow cancer, and can be 'managed' for many years in most people.

The Hormone Therapy can be draining, both physically and mentally, and he will probably be taking it for 18 months, quite possibly more. The radiotherapy itself adds to that, so expect him to be fatigued and in a low mood. After the radiotherapy has finished, he could well feel a lot better, though still affected by the hormones.

Take look at The PCa ToolKit

You can download a PDF.

the tablets and injections are probably hormone therapy - the tablets stop a flare of testosterone when the injections are started - prostate cancer apparently feeds on testosterone.  The Hormone Therapy (HT) may make him more fatigued, give him mood swings, put on weight, hot flashes and losing muscle mass.  Your Dad may get none of these, some of these or all of these to a greater or lesser extent.  It is basically the same effects as menopause.  The best thing is that after stopping the HT these effects eventually fade away.   The best thing for all these is to continue to exercise throughout.  There is usually a wait of 6 months sometimes longer from the beginning of HT and Radiotherapy (RT).  Apparently the HT weakens the cancer cells and shrinks the tumour so that RT can have the greatest effect on the cancer so the longer the HT it would seem the better.  I know a person who was on HT for 9 months before RT but for most of us it is 6 months.

The side effects of the RT can be more fatigue and there can be at about half way through RT some bowel and bladder problems - depends on how close the tumour is to the bladder and bowel I think.  Mine was close to my bowel but I had no problems and only had one night half way through RT when I needed to get up over a dozen times to pass urine.  Talking to the men in the waiting room for RT everyone had a different experience. 

I can honestly say that the best thing is to try and carry on as normal all the way through the treatments.  I was 73 at diagnosis and carried on going to the gym at least 4 days a week all the way through my treatment - I just took it easy and listened to my body.  Had I still been working and could have arranged my RT in the evenings - which my cancer centre did do I would have carried on working and had my RT in the evenings.  As I was not my wife and I moved to the City where my cancer Hospital was - about 3 hours drive from home and had a great time meeting up with friends, going to the theatre and cinema etc. 

Hope all goes well for you with your baby and your Dad's treatment.  Whether you decide to visit and stay during his treatment or not I can't comment on as it depends entirely on how you and your Mum and Dad feel.

Hi, I had a very similar diagnosis to your dad, please feel free to view my profile for more details.

best regards 

Hi

I had very similar 'numbers' as your father's on diagnosis and would encourage you to think of these as FAR from the worst! (As people gave said).

I've not long finished my 39 RT sessions and a few weeks ago had my third three monthly hormone injection.

Re RT. Yes, bowel and bladder problems but not major. Tiredness can really sneak up but a 20 minute nap worked wonders! Let's hope the cancer has been really hammered by the RT. Hormone injections are very odd. Painless on the day but the next day it feels as though Mike Tyson has whacked me in the abdomen! But it wears off after a week and is starving any remaining cancer cells of testosterone. Can affect the emotions I've found. But then there is a huge amount of support from do many people undergoing RT at the same time. 

So that's me sitting back until late February for my first PSA check up and appointment with specialist cancer nurse. Here's hoping.

As has been said, the magic word cure is rarely heard but there's tremendous optimism about plenty of years left. And for me at 74 that's pretty reassuring!

I wish your father the absolute best and I'm sure lots of calls/video calls will buck you both up no end.

Hi Pusskin,

Thank you for your reply, at the time it was reassuring to read, but it all still felt too scary to reply. In the meantime, after 1 month of radiation therapy and 1 month of waiting after that, test results came back and PSA levels are super low, so now it's hormone therapy, life as normal (ah, as if, with Covid), and monitoring. I think it's as good an outcome as one could hope for!  :)

I hope you and your husband are doing well, and thank you again!

Thank you, Steve (a very delayed thank you...)!  It was reassuring to read, but at the time it all still felt too scary to reply.

In the meantime, after 1 month of radiation therapy and 1 month of waiting after that, test results came back and PSA levels are super low, so now it's hormone therapy, life as normal (ah, as if, with Covid), and monitoring. I think it's as good an outcome as one could hope for!  :)

I hope you are doing well, and thank you again!

Hi Seamus,

I wanted to say thank you for your detailed reply, it was really good to read, I think for me more information always helps. After 1 month of radiation therapy and 1 month of waiting after that, test results came back and PSA levels are super low, so now it's hormone therapy, life as normal (ah, as if, with Covid), and monitoring. I think it's as good an outcome as one could hope for!  :)

My dad followed the "keeping fit" advice really closely, and I dare say he is now more fit than at the start of this! He takes 3 walks a day and climbs up and down the stairs of the 14-floor apartment building where they live twice a day!

I hope you are doing well and I wish you all the best in this... journey?