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Waiting for treatment plans

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User
Posted 29 Jul 2020 at 08:25

hi I'm 48 years old,  and was having bone pain in my chest , this has resulted in various investigations.  The results all are pointing to mets prostate cancer  my psa was 38 and ct and pet scans both show problems with prostate and growth in bones.

I've had zero symptoms re prostate,  so this has come a big shock .

I'm worried and scared and what the future ( if any) holds any advice would be welcome. 

Dan 

 

I'm at the urologist on Friday,  to discuss options.  

 

User
Posted 03 Aug 2020 at 15:56

Hi Dan,

I got diagnosed in Jan this year just before I turned 49. My first course of HT were tablets which immedialty stopped me wearing nappies :-) However shortly after the tablets i got put on a 3 monthly injections, they didnt work and now on monthly injections , on i think dyralex or words to that effect 😀 ... Thing is plenty options out there so if something doesnt work something else will.

I was then referred for chemo but i completed only 1 out of 6 of them due to COVID. I was then put on arbitirone and steroids to compensate. I just completed 8 weeks of this and my fortnightly blood tests are now every 8 weeks. That was due to responding well to current treatment. since Jan my PSA has reduced to 0.1 from 38. Consultant basically said i am currently in remission. Obviously no long term cure but this is managing things for me at present. Again due to COVID an infusion to strengthen bones was missed - At the hospital waiting room now for this just now. Hopefully that will help with back/hip pain. Due to this pain been of work for the last week and prob be off for the rest of the week. This sort of thing may happen so just being aware that things can be done differently is worth remybering and that there will be ups and downs as opposed to a continual downhill struggle.

Overall, I have religiously stuck with the support from GP and the care team at the hospital. If that wasnt available I dread to think where I would be now. 

The NHS are guided by real and valid research based approaches so please let them guide you regardless of how you view the diagnosis. They will do all they can for you so ensure honesty is always there. 

I have not let my diagnosis take over my whole being and just continuing to enjoy life and really do accept what ive been diagnosed with. Not a thing I would wish on anyone but I have it so just making the most of everything.

I hope this helps you.

User
Posted 03 Aug 2020 at 16:32

Thats a big help thank you 

User
Posted 04 Aug 2020 at 20:25
The magic words you want to hear in your situation is treatment “With curative intent”, which means they might be able to “cure” you.

That will depend on your biopsy result and the spread elsewhere.

If you can’t be cured - some say we never are - there are loads of treatments that can delay, stop and kill cancer in its tracks, so your future “if any” may be a long one.

Best of luck.

Cheers, John.

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User
Posted 03 Aug 2020 at 13:49

Hello Dan

What a shock for you. I hope that you’ll get some clarity at your appointment on Friday.

My partner Jonathan was diagnosed with prostate cancer 18 months ago with PSA 38 and Gleason 9.

His treatment has been 3 years of hormone therapy; 6 rounds of docetaxel chemotherapy, high dose brachytherapy and 4 weeks of daily radiotherapy. He now has 18 months hormone treatment left.

He’s also paid lots of attention to his diet and exercise; learned to meditate; had counselling through MacMillan (there’s lots of support out there and lots here on this website). 

At various times he’s been very weary and somewhat down too. He’s experienced a range of side effects from the various treatments, some debilitating but none too long lasting. PSA currently 0.01. 

I hope you’ll update your post after your appointment as I’m sure you’ll get lots more useful replies than I can give you!

very best wishes

Jane

User
Posted 03 Aug 2020 at 14:49

Thanks Jane 

Worst fears confirmed in Friday,  diagnosed as expected with mets prostate.  Not had a biopsy yet so gleason score yet .

I've started on hormone treatment,  which has made my pain worse ( hopefully in the short term) .

Any advice on future treatments and what the future looks like would be appreciated. 

 

Dan

User
Posted 03 Aug 2020 at 15:56

Hi Dan,

I got diagnosed in Jan this year just before I turned 49. My first course of HT were tablets which immedialty stopped me wearing nappies :-) However shortly after the tablets i got put on a 3 monthly injections, they didnt work and now on monthly injections , on i think dyralex or words to that effect 😀 ... Thing is plenty options out there so if something doesnt work something else will.

I was then referred for chemo but i completed only 1 out of 6 of them due to COVID. I was then put on arbitirone and steroids to compensate. I just completed 8 weeks of this and my fortnightly blood tests are now every 8 weeks. That was due to responding well to current treatment. since Jan my PSA has reduced to 0.1 from 38. Consultant basically said i am currently in remission. Obviously no long term cure but this is managing things for me at present. Again due to COVID an infusion to strengthen bones was missed - At the hospital waiting room now for this just now. Hopefully that will help with back/hip pain. Due to this pain been of work for the last week and prob be off for the rest of the week. This sort of thing may happen so just being aware that things can be done differently is worth remybering and that there will be ups and downs as opposed to a continual downhill struggle.

Overall, I have religiously stuck with the support from GP and the care team at the hospital. If that wasnt available I dread to think where I would be now. 

The NHS are guided by real and valid research based approaches so please let them guide you regardless of how you view the diagnosis. They will do all they can for you so ensure honesty is always there. 

I have not let my diagnosis take over my whole being and just continuing to enjoy life and really do accept what ive been diagnosed with. Not a thing I would wish on anyone but I have it so just making the most of everything.

I hope this helps you.

User
Posted 03 Aug 2020 at 16:32

Thats a big help thank you 

User
Posted 03 Aug 2020 at 20:22
Hi Dan.

Sorry you find yourself in this situation. It can really mess with one’s head until one adjusts to the reality of it. I’m the Jonathan that Jane2000 described in her reply to your post. I’ve now been living with prostate cancer for one and a half years having endured a full year of intensive treatment initially. Our initial PSA scores were identical at 38 but I have the very good fortune that no spread of my cancer was detected beyond the prostate. Mine was such an aggressive form of the cancer however that it was felt that some undetectable spread of the cancer was likely to have taken place and my treatment plan reflected that. I was deemed to be young enough and fit enough for my oncologist to throw literally everything at my disease: hormone therapy, chemotherapy, brachytherapy, then radiotherapy. I would imagine that your own treatment plan will feature two or more of these treatments, as the other well-known treatment of prostate removal is generally not the course of action followed if there is any suspected or identified spread of the disease. Please don’t despair at your diagnosis. There are a wide range of treatment options for the management of prostate cancer even if absolute elimination of the disease is not necessarily an available option at the moment (prostate cancer treatment is a rapidly evolving art and new treatment options are constantly in development). The immediate availability of hormone therapy upon diagnosis is a real blessing, as it generally halts any disease progression during the phase when one is awaiting the formulation of a detailed treatment plan tailored to your particular cancer, personality, physical characteristics and treatment preferences. You are likely to be offered a degree of choice in terms of your treatment plan although it is equally likely that your oncologist will make recommendations. For some it would appear that making these choices is a particularly stressful experience. For me personally it wasn’t. I had great trust in my oncologist and felt happy to follow his recommendations having been presented with all the relevant statistics relating to the outcome probabilities of each treatment. I am neither cured nor in remission at the moment, as I have at least 18 more months of treatment ahead of me. I am however entirely happy with the course of my treatment thus far, and as far as coronavirus restrictions will allow me to, I am getting on with my life, and living it to the full. Please get back to me should you feel that there’s anything that I can help you with in terms of my own cancer experience in relation to yours. Where you are at present is a very uncomfortable place to be. Once you have decided on a course of action and embarked upon it however you should begin to feel a little better.

Very best wishes,

Jonathan.

User
Posted 04 Aug 2020 at 13:58

Thanks very much for the comprehensive updates .

I had my biopsy today , not the greatest feeling , but required for treatments moving forward.

Got the news today that due to having no symptoms re prostate but the cancer has spread very quickly,  that its most likely to be an aggressive form. Docs say this shouldn't effect the treatment and the outlook is still a positive one. 

Got to honest,  descriptions of , advanced and aggressive make feeling positive difficult. 

Due an appointment with the ornacoligist some time over the next week or so where further to hormone treatment im on will be discussed. Any advice appreciated. 

 

Dan 

User
Posted 04 Aug 2020 at 20:25
The magic words you want to hear in your situation is treatment “With curative intent”, which means they might be able to “cure” you.

That will depend on your biopsy result and the spread elsewhere.

If you can’t be cured - some say we never are - there are loads of treatments that can delay, stop and kill cancer in its tracks, so your future “if any” may be a long one.

Best of luck.

Cheers, John.

 
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