Prostate.....

Finally formally diagnosed today with prostate cancer. Petty obvious 13 months ago on basis of mpMRI and psa levels. At that time I declined biopsy, for various reasons including having no wish to spend time in hospitals as starting to overflow with covid cases.

I re-referred myself 8 weeks ago. Seems a lack of referrals from GPs as people not attending surgeries, so v quick progress through mpMRI, consultations, biopsy, results and bone scan -  latter booked and then performed while I was still discussing results today!

Only slight annoyance was automatic assumption that I  WOULD want treatment. Gleason 4 + 5 (better than 5 + 4 apparently!) but all within unless bone scan says otherwise.

As expected on age and expectancy grounds surgery not an option. For reasons which I have not yet established, brachytherapy not appropriate. So decided to start 28 day hormone treatment today, external RT sometime following that, IF I so choose. 

What was on offer was pretty much what I would have chosen, I can step off the pathway if I want and be no worse off.

Any and all comments welcome!

Doesn't seem like nearly 3 years since I was last "here" as my wife was dying with secondary liver cancer. Would have preferred not to be a returner....

 

  • Thanks again, Billy. 

    Just one more thing to look forward to (not) then!

    dj 

  • So  far ..... had the 3 month version of the injection 10 days ago, 28 day tablets (Bicautamide) end in 3 days time. Consultation re next steps due 5 May. Once I know "plan" will be better placed to decide whether or not to continue.

    Absolutely nil side effects yet. Still racking up 120 -  140 miles cycling a week. Nurse practitioner who gave the injection reckonedbeing "fit" helps with side-effects, but I am not sure any evidence for this.

    Correction  -  only side-effect an improvement in urinary habits, sleeping much longer without having to wake for the loo.

    For now, onward .....

  • Good to hear you've only had a positive effect so far, long may it continue.

    My husband is going to have a mini-TURP soon, followed in due course by brachytherapy, which he seems to be suitable for.

    He's very calm and positive, but I feel as though I just got on an escalator going in the wrong direction and I can't get off.

    Good luck with your next step.

  • Thank you. Hope your husband proceeds as well as possible. Calm and positive (and for me at least a strong dose of realism) the only way. 

    All of life is an escalator I'm afraid.

    Good luck to you both.

  • Update. 4 weeks post-tablets, 6 weeks since 1st injection, 2nd due 23 June. Had been preparing for ERT some time after that.

    However, having received a mass of information in respect of ERT in advance of "planning" consultation on 5 June I am seriously reconsidering whether or not to have it.

    It's difficult to find hard stats on risks of various side effects  -  what percentages are meant by "some" or "many"?!

    More worryingly the demanded dietary regime even leading up to "planning" (presumably relating to defining and mapping the targets) will adversely effect my ability to take the exercise that keeps my copd at bay and also worsen my bowel function.

    So, accept treatment that MAY prolong my life by preventing cancer spread but which will CERTAINLY shorten it by hastening the inevitable decrease in my ability to breathe? 

    How to choose between the 2 is a tricky one! Stretching my powers of rational, logical, decision making to the limit.

    I don't expect any "answers", just clarifiyimg my thinking by writing it down!

    A bit miffed that consultant didn't really point out this dichotomy before seeking my agreement to treatment!

  • Had planning mri and scan. Still no meaningful adverse effects from hormone treatment. ERT scheduled to begin 7 July. Still wavering as to whether or not I shall proceed. 

    Vote NOW!

  • OK, I did decide to proceed, started ERT last Thursday. Bad mistake. After only 4 (of 20) sessions my urinary problems, apparently not related to prostate, much worsened. I shall continue until my first "review" on day 8, but then probably quit.

    Should have gone with my first reaction and chanced spread, hoped for maybe 6 months of an acceptable quality of life rather than a POSSIBILITY of a few years of life not worth living.

    The "gut reaction" is sometimes the right one!

  • Well .... for various reasons I did continue. Day 19 of 20 today. "Review" yesterday less informative than I had expected  -  seems that success or otherwise in eradication cannot be judged for some months and then largely by psa levels. Hormone treatment to continue for 2 years. 

    A "yes" to my "gone as well as could be expected?" the only reassurance!

    Additional medication minimal effect on urinary problems, but then that not directly linked to the cancer tumours.

    On the plus side little impact on general fitness. Set myself target of cycling at least 10 miles every day of treatment course (29 including weekends). 27/27  so far and  over 320 total so achieved  -  limited by time constraints of treatment slots rather than energy!

    Guess I will only know if ert has "worked" when it doesn't! Remain unconvinced that treatment was worthwhile, but will now put it all to the back of my mind until tests etc in 3-4 months.

     

  • Offline in reply to dj48

    So, 18 months on from ERT .. .... little change for good or bad. Most recent of PSA tests in right direction. The elimination of testosterone has had inevitable effects on sex life, but we can cope with that. Lingering effects on bowels erratic and can be awkward, although difficult to distinguish from Covid medium term symptoms in my case.

    On balance, the treatment was worth the effort. Still cycling, average over 100 per week for year despite some poor weeks while gf recovering from hip replacement!

    Some very early symptoms of a new "site", a rarity which GPs refuse to recognise ..... but I shall pursue via the private sector. Once it's got in somewhere it'll always find a new home!

    Onward and downward.

  • Offline in reply to dj48

    Just for completion, last of supposedly 6 mthly PSA tests (altho GP failed to hit the schedule). But near enough 3 year milestone and level an entirely satisfactory 0.26. Now annually for ever! 

    Obviously expert ERT plus hormone treatment did the business as well as is possible.

    Some urinary and bowel problems ( both intensifly tested) remain, but overall a "good result".

    Onward and downward....

    Dave.