It's been a while!

User

Posted 17 Jun 2016 at 16:44

Hello folks

It has been a while since I posted last, but I thought I would let you all know about my Radicals journey.

I got the result of April's HSPSA 2 weeks ago (lots of cancelled appts) it was 0.02 (after about 1 year or so of <0.01). Oncologist asked for next test in 4 months rather than 6 just to make sure and threw in a load of other blood tests. I had a 0.02 a year or so ago and that went back down so drawing no conclusions about the minute rise.

Had my knee replaced last month (injury induced arthritis in left knee), had it done with spinal block and no sedation, the op theatre was nothing like the telly! The surgeon and a few others were wearing what looked like space suits.

Good luck every one

Batholith

There are lots of new people around so here is quick precis of my prostate cancer experience.

Diagnosed Nov 2012 with a PSA of 13 and a hard prostate border line T2/T3

Surgery Jan 13

Follow up Mar 13 PSA 0.25 Post surgery staging T2c N0 MX. Gleason 3+4 nurse asked for another PSA test

May 13 PSA result 0.35 - probably microscopic spread referred to oncology, Advised RT to prostate bed.

Went on radicals trial - Hormone therapy duration branch, randomised to 2 years. Started HT

June 13 PSA drops to 0.25

Aug Start RT 66Gy 33 sessions

Oct 13 - Jun 16 PSA either <0.01 or 0.02 (twice)

May 2015 Off HT

Next blood tests in 4 months HSPSA, Full bloods, LFT, Urea & electrolytes, Bone

Side effects:

Post surgery improving incontinence for about 4 months, some deterioration after RT bur have been dry for many months now

Post RT after about 6m developed slight Cistitis and Proctitis, nothing else.

Total ED since surgery (nerves removed)

During HT

complete loss of libedo (which was actually a probably positive in hindsight)

hot flushes for about 6 months which went away

tiredness

put on a lot weight until I went on a low carb diet

lost mucularity

Coming off HT

Libedo slowly returned

Energy came back

muscles slowly coming back

Like many on here I have contined to work full time.

Edited by member 17 Jun 2016 at 17:08 | Reason: Not specified

User

Posted 18 Jun 2016 at 09:21

Hi Joshan,

Knee healing very well thank you. Got up to 120 degrees flex at the last physio

I had a rise to 0.02 some time ago just for one reading but it went back down on the next one so hopefully it was just a blip - have to wait and see.

The cancelations were after the blood test and the knee itself wasnt very painfull like some people's, just unstable and slowly deforming, bone on bone one side. It was only really painful if I walked more than 1/2 a mile or when it wobbled.

I did want to talk to the oncologist before I had the knee done but the cancellations stopped that happening.

Best wishes

Andy

User

Posted 18 Jun 2016 at 09:49

Hi Brian

Glad to read that you are doing well too.

Yes you are probably right, I had a similar rise a while back which went away again. Maybe I am just bumping along the bottom and these fluctuating readings are effects of measurement errors on my "no prostate" base level PSA, Lyn keeps telling us that other glands produce small amounts of it.

good luck

Andy

Edited by member 18 Jun 2016 at 09:50 | Reason: Not specified

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User

Posted 17 Jun 2016 at 20:26

Hope the knee is healing well Batholith.

I don't know much about it but is it possible that the stress of living with the knee pain (not to mention cancelled appointments) could have affected the PSA readings?

It is only a small rise so hopefully it can be put down to just one of those things. Hope so anyway.

We can't control the winds - but we can adjust our sails

User

Posted 17 Jun 2016 at 21:32

Good to see you posting Batholith - and food for thought for those wobbling about whether the possibility of unidentified microscopic spread makes RT a pointless exercise

Stay well x

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

User

Posted 18 Jun 2016 at 09:21

Hi Joshan,

Knee healing very well thank you. Got up to 120 degrees flex at the last physio

I had a rise to 0.02 some time ago just for one reading but it went back down on the next one so hopefully it was just a blip - have to wait and see.

I did want to talk to the oncologist before I had the knee done but the cancellations stopped that happening.

Best wishes

Andy

User

Posted 18 Jun 2016 at 09:30

Hi Andy

At those levels its probably nothing to be concerned about...time of day....calibration of m/c...who analysed it etc etc

Otherwise hope you are well

Bri

User

Posted 18 Jun 2016 at 09:32

Hi Lyn

Whatever happens the Salvage RT / ADT was beneficial. My PSA after the op had a doubling time of maybe 12 weeks, those were some pretty active cells. The pathology showed contained tumour about 1mm away from the capsule near the apex, so the oncologist targeted the RT the pelvic floor in that area.

The only doubt I have is whether the reduction in PSA was due to the RT, the ADT or both, either way if I hadn't had salvage treatment I would be pretty ill by now.

Will see what the next tests bring, if the PSA is on the up I guess I will be pushing for ADT and Chemo before bulky tumours develop, if my onco and the health boards are willing, perhaps I have used my allowance by now (poor joke)!

best wishes

Andy

Edited by member 18 Jun 2016 at 09:49 | Reason: Not specified

User

Posted 18 Jun 2016 at 09:49

Hi Brian

Glad to read that you are doing well too.

good luck

Andy

Edited by member 18 Jun 2016 at 09:50 | Reason: Not specified

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