Now on to SHT/SRT

User

Posted 01 May 2018 at 19:12

Hi all

Entering a new world here so starting a new thread.

The Road So Far...

RP Surgery July 2017 with a G7 (4+3) with 3% tumour.

PSA OK until about a month to six weeks ago when I got a 0.16 and 0.17. Result from last week 0.24. Onwards and upwards.

Saw the urology onco today.

No beating about the bush - I will be on 6 months of HT with 6 weeks of RT during the last stages of that treatment.

Very professional but to me a little brisk.

Absolutely refused to discuss PSADT, nomograms, probabilities, outcomes etc. His position was that regardless of the statistics. everyone is unique so predictions are worthless and he treats at the time according to circumstance.

Didn't care what I ate, drank or otherwise did apart from cutting back on the volume of alchohol,

So I have an initial 28 days of Bicalutamide / Dasodex, an intial jab up the bum (a hiuge needle!) with Triptorelin / Decaptyl and then another jab in three months then RT planning.

All the usual side effects explained but he really dismissed the potential of gyno.

Pretty fed up and mentally choosing my headstone right now which is daft but I feel the dice are rolling against me at every step.

Overall I felt I was in a sausage factory, unlike with the surgery.

I may of course be projecting my own fears onto the sitiuation so I will just shut up and soldier on. Not a lot of choice really.

Any advice or rays of sunshine welcome.

P*ssed off Pete

User

Posted 01 May 2018 at 19:53

Pete

I started hormone therapy two months ago and started radiotherapy yesterday. Apart from tiredness, I'm doing fine. A few mini hot flushes, but nothing too bad. I'm to be on HT for six months in total.

Ulsterman

User

Posted 01 May 2018 at 20:08

Hi Pete,

Sorry to read this, but glad that they are not fannying about and are cracking on with the treatment.

Rays of sunshine - that they are treating you and quickly. You might be dessip off now, understandably so, how much more dessip off might you be if there was no treatment offered?

Cut down on the alcohol eh? Not a bad idea for many of us. But sometimes only a few beers will do. And they can be happy beers or sad beers.

I can't comment on your treatment plan, I'm not there. Yet!

I do know and can comment on what an improvement to the life being lived a "sorted" mindset can be. If only someone knew of a way to enable others to achieve this?

Reading other people's stories may help a bit. Always people worse off and better off than you. Does not detract from what you are going through though.

And treatment options are still improving.

atb to you and your family

dave

Do all you can to help yourself, then make the best of your time. :-)

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User

Posted 01 May 2018 at 19:53

User

Posted 01 May 2018 at 20:08

Hi Pete,

Sorry to read this, but glad that they are not fannying about and are cracking on with the treatment.

Rays of sunshine - that they are treating you and quickly. You might be dessip off now, understandably so, how much more dessip off might you be if there was no treatment offered?

Cut down on the alcohol eh? Not a bad idea for many of us. But sometimes only a few beers will do. And they can be happy beers or sad beers.

I can't comment on your treatment plan, I'm not there. Yet!

I do know and can comment on what an improvement to the life being lived a "sorted" mindset can be. If only someone knew of a way to enable others to achieve this?

Reading other people's stories may help a bit. Always people worse off and better off than you. Does not detract from what you are going through though.

And treatment options are still improving.

atb to you and your family

dave

Do all you can to help yourself, then make the best of your time. :-)

User

Posted 01 May 2018 at 20:19

@Ulsterman - its not a big club but an elite one :) Knowing that other people are in the same boat really helps! I am on target for 6 months too. Going to be interesting trying to hold contract work down in the latter half of treatment if I still am on one. Still, like the treatment, worry about it when it comes!

@Dave - you are right - fast off the bat (paranoid me says "do they know something I don't!" but sensible me knows I hit the threshold mark so all good. More than thinking "it could be worse", I am working to help others with my thesis / counselling and trying to shift to that positive "strive unto death" mindset. I do have plans for acheiving a "sorted" mindset, but it will take some persistence and some bold steps. Carpe Prostatum :)

User

Posted 01 May 2018 at 20:21

Hi Pete, if you look at my profile I had prostatectomy July 2015, PSA undetectable until a reading of 0.3 1st September 2016 and on to 0.7 by mid November 2016. Started bicalutamide December 2016 and been on PROSTAP injections since end December 2016, salvage radiotherapy March/April 2017.
If it’s any consolation I have felt blindsided, scared, unsure if the doctor had fully read my notes, looked at my scans.
They are unbelievably busy and I think sometimes lose sight of us as individuals.
I asked questions, also didn’t always get answers but when my oncologist told me he wasn’t prepared to risk major side effects of SRT in my instance I asked for a second opinion.
After recurrence the urological surgical professor referred me for a pelvic MRI.
My oncologist also sent me for an F18 choline PET scan, both scans showed problem areas which were targeted during radiotherapy. He told me my recurrence was high grade and that SRT had a 40% chance of cure. He told me my PSADT was 1,2 months.
A year post radiotherapy I am still on PROSTAP as my oncologist initially decided to treat me like I was a new patient going through the EBRT route.
I had 20 treatment fractions rather than the 30 you seem to be getting.
It is incredibly difficult dealing with recurrence and all it means. I am so sorry you are another person facing this.
But here I am a year post SRT, I don’t know how it will all go but right now I am enjoying life, thankful to be here and enjoying the company of my family and friends. I even went to Calgary in Canada for a holiday 6 weeks after RT with full insurance and my wif3 and I had a great time.
Do I have dark moments, yes but mostly I am happy and fulfilled.
Stay positive my friend, you will get through this with the support of family, friends and communities like this.
Ian.

Ido4

User

Posted 01 May 2018 at 21:42

Pete, John was in the almost identical situation - even down to the PSA of 0.17 and the onco's refusal to provide RT or tablets for the man boobs. Here we are, 6 years this month after salvage RT, and John is tootling along with a PSA of 0.1 and feeling like that was a different part of his life now firmly in the past. There is hope!

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 01 May 2018 at 22:17

Pete - I forgot to say my GP prescribed tamoxifen to prevent man boobs.

And I'm having 33 VMAT treatments. I don't totally understand the differences in delivery methods, but I was told VMAT is more accurate and less likely to hit healthy organs.

And today they wouldn't treat me - my bladder wasn't full enough and my rectum was too full. They sent me away for an hour to get it all sorted. They also warned me about my weight saying I had put a little on and that my calculations would need to be redone if this continued.

Ulsterman

User

Posted 01 May 2018 at 22:39

Survey completed.

dave

Do all you can to help yourself, then make the best of your time. :-)

User

Posted 02 May 2018 at 06:48

I completed your survey too Pete.

Ido4

User

Posted 02 May 2018 at 08:35

Hi Pete
I started from a slightly different place as following my RP in 2015 I didn't achieve an undetectable PSA. The PSA went on rising so we decided on 37 sessions of salvage RT in 2016. Still didn't get an undetectable so in 2017 started on 3 monthly Prostap. Guess what - first PSA test following first injection PSA undetectable and has remained that way since.
Life is good.I won't pretend that things haven't changed a bit due to side effects but although retired there just aren't enough hours in the day to fit everything in.
I have to admit that having the cancer has never been a cause for concern to me. I have every faith in my onco and the team have always been very honest with me about side effects of treatments so I have been able to deal with them.
I am still working part time, walking a lot, gardening, riding the motorbike in all weathers and enjoying holidays.
I know that this me and you are you but I hope this will encourage you.

All the very best to you.

Kevan

User

Posted 02 May 2018 at 20:42

Hi everyone

Just a quick note as I am having a last blast on the red as this is my first day on the HT tablets so anything more than this will be a ramble.

I just wanted to thank everyone for the kind words and support.

Knowing that there are other people in the same boat to talk to is better than any anti-depressant tablet!

Carpe Prostatem!

Pete

User

Posted 02 May 2018 at 20:53

Good heavens - you aren't thinking of giving up alcohol are you????

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 02 May 2018 at 21:12

Pete,

If you give up alcohol, you probable wont live any longer?

But it just may seem that way?

atb

dave

and for me, tonight is happy beers night!

Do all you can to help yourself, then make the best of your time. :-)

User

Posted 03 May 2018 at 06:42

Survey completed.

User

Posted 06 May 2018 at 20:56

Well I am on holiday so the alcohol embargo is off the books for a week 😂

I am on day 5 of the pills and so far the main change is that my sweat smells different - less teenagery.

I am also more up and down emotionally but that may be just my head playing games

One minute I am thinking the fact that I was t2c n0 m0 is a good thing and the next (based on a comment on another forum about the fact that I had a very small tumour volume means it has escaped and may be aggressive) I am updating my will.

I have tried to park the obsessive research as on one hand I find research that says that even with srt the chances are poor and on the other the standard gp update letter I got from the hospital suggest that even with bcr the chance of avoiding clinical reoccurrence is quite good.

Going to have to grit my teeth and press on.

Pete

User

Posted 06 May 2018 at 22:28

survey submitted

Barry

User

Posted 10 May 2018 at 08:48

Thanks to everyone responding to my survey. I am getting enough data to make some interesting interpretations!

Regarding my situation, I have been pondering what could have led me here with a t2c n0 m0 and I wonder if the fact that I had two biopsies and after the second one I bled like a stick pig might have had a bearing, by allowing cells to escape. Either that or just random chance that one snuck out. My daydream is that this is just a result of a tiny amount of benign prostate tissue being left behind.

Whatever, it is sort of sinking in now that what is done is done, and I need to look forward.

I do have a lot to be thankful for. Caught early, both sets of treatment (first RP and now SRT) happening quickly, a loving and supportive family, a job (for the time being as I am a contractor) and something of a rainy day pot. Focusing on these thinks is going to be critical for my state of mind going forward, whatever happens. I also have the opportunity to put something back, in terms of my thesis.

Carpe prostatem

User

Posted 10 May 2018 at 18:59

Not trying to say “how lucky am I” but rather express my need to concentrate on the positive aspects or end up by default thinking “oh ship, I am ducking ducked! Gonna be gone by Xmas,”

User

Posted 10 May 2018 at 19:03

Good to see such a positive post PP :-)

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 14 May 2018 at 20:24

Hi all

Quick update. Saw one of the nurse specialists today and had my horse jab.

Had to do my usual “explain where I am in the journey” as the handover is usually a bit patchy but we ended up on the same page. Not her fault, I just think they don’t join up departments as well as they could.

My bum is now very sore but I feel fine otherwise.

No sign of man boobs yet!

P

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