Deja vu!

User

Posted 28 Jan 2020 at 19:21

Hi my name is Ian a new member reliving a journey that I originally started back in 2010, and thought I'd completed in 2011.

Sadly I now have to start the same journey again however the directions taken may well change, however, I'm generally an optimistic Guy so I am hopeful that the outcome whatever that maybe will be more positive than negative.

I was originally diagnosed back in Dec 2010 - ct2c, MRI T3bN0M0, Gleason score of 4+3 & a PSA of 27.9.

Treatment started immediately (Dec 2010) being Hormone treatment (Casodex orally, followed by injections) which stopped 10 months later when I started (Oct 2011) radiotherapy at the Royal Marsden in Banstead, Surrey which concluded in Nov 2011.

Following what I thought had been a successful journey the forward plan was for regular PSA tests (six monthly)

Present-day (new journey)

PSA leaped up to 12.8 (Nov 19) following a PSA test in the previous year (2018) of 1.8 (I have regular blood tests, however, complacency crept in during 2019 and I failed to follow my regime, typical that it came back to haunt me!)

I had a Bone scan and MRI at East Surrey Hospital (early Dec 19) leading to findings of a PI-RADS 4 (possibly 5) area peripherally in the prostate and a suspicious area in the left seminal vesicle. The bone scan was negative. The next step was a choline PET scan which was carried out at Guildford Hospital in Early Jan 20.

The Pet scan confirmed the MRI findings of a T3b recurrence, next step is a template biopsy in Feb (13th) to confirm the grade of cancer which will hopefully lead to a treatment plan.

A urologist has recommended a radical prostatectomy or (dependent on bio) Hormone treatment.

I'll try and keep the details updated and any comments/suggestions are more than welcome as are any questions.

Many thanks

User

Posted 28 Jan 2020 at 20:51

Sorry to hear your news.

Interesting to hear you've been offered an RP. Very few surgeons will attempt an RP for a patient who's previously had RT, because RT basically turns your prostate to mush, making it extremely difficult to surgically separate from the surrounding tissue.

Best wishes,

Chris

User

Posted 28 Jan 2020 at 20:59

Many thanks for the response Chris.

I can't say I'm enthused by the prospect of a RP, and the Urologist has suggested that the chances of success (avoiding incontinence/ED) are vastly different to an RP on first diagnosis.

In hindsight it's a shame I wasn't advised to have an RP back in 2011, however. I do understand that things have moved on.

User

Posted 28 Jan 2020 at 21:26

Hi Ian

sad to hear of your recurrence after such a long post treatment success period.

There is a salutary message there for all of us, especially me as I have just finished 18 months of hormone therapy October 2019 and I have also had 20 fractions of radiotherapy. My current PSA is graded undetectable, or less than 0.1 as the NHS does not search for PSA values less than 0.1

My primary care nurse told me that I was now aiming for five years cancer free to be considered cured!

I was 65 on diagnosis and as I was Gleason 4:5 T2c I was not offered RP as I had too much cancer. Like you I had anti-flare tablets before starting my hormone therapy injection and looking at where I am now, I am actually happy that I did not have the option for RP, because if it had been available for me I might have gone for it.

One of the main points for me was keeping a sex life going after any treatment, so now with sildenafil although I have dry ejaculations and things feel different it’s still just as satisfying (nearly😉)

your post makes me consider what my options would be should I get a recurrence in the next few years so I will watch your updates with interest and of course I wish you all the best in your new treatment regime

User

Posted 29 Jan 2020 at 06:12

Hi there

So sorry to hear of the reoccurrence. Following my husbands reoccurrence we considered and were offered a salvage RP. I think in this circumstance it’s worth ‘head hunting’ a specialist in salvage RP.

They do exist and do volumes of salvage RP’s and we were impressed by the surgeon we saw even though we opted not to go for it at the moment.( much different circs to yours). We consulted via BUPA but he is an NHS surgeon.

Just thought I’d mention.

All the best

Clare

User

Posted 29 Jan 2020 at 07:42

If you do have surgery on what’s left of your prostate after RT, I recommend Professor Whocannotbenamedhere at the Royal Surrey County Hospital, Guildford, as a surgeon.

Best of luck.

Cheers, John.

User

Posted 29 Jan 2020 at 13:49

Hi Pallance

Many thanks for your response it's greatly appreciated.

It is a major disappointment (understatement!) to find myself in this unfortunate situation, the last nine years has been predominantly positive although ED has been a trial, interestingly Sildenafil (along with others) has never really been that successful but on the whole life in that department has been more than satisfactory.

One complication that has arisen since my original RT has been the diagnosis of Myelodysplastic Syndrome which is a blood disorder that my Hematologist has linked to the RT. Blood is produced in the area (Pelvis) that was radiated and the suspicion is that the area has been damaged.

Unfortunately, my original Template biopsy was scheduled for Mon 27th and my pre-op assessment showed a sharp drop in my red blood cell count and I am now on weekly injections to bolster the count and the OP has been put back to the 13th Feb.

I'll try and keep the journey updated

User

Posted 29 Jan 2020 at 13:51

Many thanks Claret, your response is appreciated

User

Posted 29 Jan 2020 at 14:08

Hi Bollinge

Thanks for the response.

I'm guessing naming consultants/surgeons etc is not allowed but I'm intrigued by your reply.

Does the Professors surname begin with an 'R', if so it could well be the same Professor who diagnosed my original PCa back in 2010, although I didn't know he was also a surgeon.

My original treatment was at the Royal Marsden back in 2011, and my preference would be to go back there, although at this stage I'm not sure what the path will be.

My preference would be to see if the seminal vesicle could be removed leaving the prostate intact and see if the single lesion (in the prostate) could be treated on its own (not sure how though), but in truth I don't know if that's even possible?

I think an RP 9 yrs after RT would/could lead to incontinence and impotence forever and personally the quality of life overrides duration of life (could change dependent on prognosis).

Difficult call at the moment and I'll be in a better position to make a call once I get the results of the template biopsy.

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