Off the rocks for a while, still on the road - Radiotherapy IMRT,ADT,salvage radiotherapy

Hi Everyone,

I went to see my fantastic oncologist this morning and my PSA is < 0.01 undetectable, I am now on 6 monthly testing for the next 3 years then yearly. I meant to ask him lots of questions about coming off ADT but we ended up talking about the ML Programming Language which I am learning for work!

Cheers

Andy

A positive chronology

For all of you are recently diagnosed with localised or locally advanced prostate cancer or with biochemical failure after prostatectomy there is hope here. Here is my story in a nutshell, it shows even even with knocks there are possibilities

Oct 12 PSA 13

Nov 12 DRE, TRUS Biopsy

Dec 12 Prostate Cancer confirmed, MRI, chose LRP

Jan 13 PSA 18 staging T2c or T3a N0 Mx, Prostate & all local lymph nodes removed - non-nerve sparing because of peri-Neural invasion and cancer near to prostate wall

Mar 13 PSA 0.25 that isn't good, should be undetectable 6-8 weeks post prostatectomy - look for articles on PSA half-life

Apr 13 PSA 0.35

May 13, Scheduled for RT started ADT, joined Radicals Trial

June 13, PSA 0.25

July 13 CT Scans

Aug 13 33 sessions of 2Gy RT started, worked full time right through RT but circumstances allowed it

Sept 13 PSA 0.02

Oct 13 PSA <0.01

Jan 14 PSA < 0.01

May 14 PSA <0.01

Sept 14 PSA 0.02 - oh dear!

Jan 15 PSA <0.01 - phew!

May 15 PSA <0.01 End of ADT

So I am one of those chose RP knowing that RT would be available should the RP fail which it did but the RT seems to have at least knocked it right back.

What were the side effects?

After RP incontinence but recovered full continence after 4 months. Total ED (expected)

After RT slight incontinence (started to come back at the very end of the 33 sessions and slowly got worst over about 6 months) It has been stable for about 1 year. Occasional and sight rectal mucus.

During ADT, mild tiredness hope that will go, may have brought on diabetes.

How am I now?

Still working full time, + part time lecturing. Reasonably healthy, looking forwards to the rest of my life, more inclined to do things now rather than wait.

Edited by member 11 May 2015 at 21:39  | Reason: Not specified

Thanks you 3!

I have no regrets about the surgery, it saw to the vast bulk of the cancer, but not the the tiny invisible amount that had escaped, and I have always found the near certainty that post prostatectomy PSA testing to be sort of reassuring even if frightening when it went up a bit 8 months ago! I don't think I would have been comfortable with the vagueness that you get from PSA tests when RT is the primary treatment.

The next PSA test is the crunch one, it will be after 6 months with no hormone suppression and just over 2 years post salvage RT if that is undetectable then I might allow myself to think of being free from prostate cancer for a good few years!

I think this is a good moment to praise the NHS in my area, run by a trust serving a huge cross border rural area. While there have been some less than satisfactory moments (which also happen the private sector) my treatment has been given by skilled, caring and knowledgeable people. 2 of my close family members have IBD one of them severely and they have both had a similar broadly positive experience, with one of them now on a very costly treatment which has worked marvels, bringing her life back to normal.

I think from discussions with colleagues in the US that with 3 of us with moderate to severe health issues over a period of 3 years then my family would be struggling financially with all the out of pocket expenses and partial insurance cover that seem to be common there. I think it is forgotten sometimes by those who advocate privatising health care that when the insurance money runs out or doesn't cover something the NHS steps in so private care in the UK is essentially backed up by the NHS.

Sorry rant over!

Edited by member 12 May 2015 at 21:29  | Reason: Not specified