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6 Months in and time to say hello :)

User
Posted 22 Jul 2019 at 20:29

Hi All,

I’ve been poking about on the forum for the last six months or so following tests, diagnosis and surgery; so thought it appropriate to start engaging properly. Not least as it seems highly likely that I’m not entirely done with Prostate Cancer!

I’m 54, consider(ed) myself fit & healthy. Before this, my biggest health stress was varicose veins!

PSA was 20 in January 2019 having being 13+ for the previous four years (don’t ask!). Following a biopsy, Multi-parametric MRI and bone scan, I was staged T2 possible T3. Gleason 9 (4 + 5). MRI and Bone Scan were negative for spread.

Had a meeting with a surgeon in March and for me, surgery was a no brainer. Partly because I wanted the best possible shot at getting the cancer out, and partly because I wanted some certainty over whether it had spread. The intention was for partial nerve-sparing.

The surgery went well. A couple of return visits to hospital, but down to using just one pad a day from about week 3. Have to say that the effects of surgery on my general energy levels and the recovery from extended lymph node dissection took me by surprise.

The good news; Post-op PSA in June was <0.1 so undetectable. Although the pathology report had some bad news:
Peri prostatic lymph node involvement
Positive margins
Extensive spread around the prostate including three sites of Extra Prostatic Extension
Seminal Vesicle involvement
Lymphovascular invasion

Restaged to T3B N1 M0


Gleason Score confirmed as 5 + 4

Meeting with oncologist in early July was frank in terms of likelihood of PSA increasing. In fact, she said there had been some surprise that my PSA was undetectable. Anyway, it’s a case of what to do when the PSA starts to go up, rather than if.

At the moment I’m not on any follow-up treatment and just playing a rather frustrating game of wait & see.

Sorry if that was long-winded, hopefully, answered the obvious questions. Happy to discuss aspects of surgery if anyone considering it wants to know more. Otherwise, it’s nice just to say hello :)

User
Posted 23 Jul 2019 at 08:45
Thanks all, and sorry, I probably wasn't particularly clear; the plan is to review after my next blood test in September. The oncologist was very clear that any increase in PSA and we'd start treatment immediately. And may reconsider in September even if PSA remains undetectable.

I felt that another couple of months to get over surgery would not make a difference either way. As an aside, I find it hard to believe that some microscopic disease has not already got out anyway.

So in a way, the short answer is yes, we did discuss adjuvant RT along with HT. I've taken a decision that I'd rather not start RT unless there's evidence of cancer that they can target.

I realise that there is an active debate about the benefits of adjuvant treatment and that it will be some time before the RADICALS trial is known.

Not trying to persuade anyone that this is the right way, it just feels like the right way for me.

User
Posted 23 Jul 2019 at 18:25

Hi Chris,

Thanks, yes I had actually read your profile before.  Looks like you had a rough time post-surgery.  I'm grateful that I have had a relatively easy time.  

If I can wing it I don't want to make decisions until I've had some more scans, as I don't trust the pathology - the surgeon only managed to get 4 lymph nodes and one was positive.  Seems to me that 4 does not really give a very full picture.

C

 

User
Posted 15 Aug 2019 at 20:44
Well that was Ā£75 well spent - great news šŸ‘šŸ¼
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 28 Sep 2019 at 11:18
Had my September review (4 months post-surgery). PSA is still undetectable (<0.1) which is obviously very good. However, the oncologist, their boss and the surgeon who carried out the operation are all apparently convinced that my PSA will increase sooner rather than later.

In fact so much so that they're doing the PSA every 6 weeks rather than 3 months. With a Chlorine PET Scan when things move and then a decision about what treatment to start. RT is not recommended at this stage without knowing where any residual disease is.

Not sure if anyone else has experienced this, but I was quite concerned about lack of strength etc. following surgery so had a couple of blood tests for testosterone levels. Both tests came back at around 5nmol/l (which is below the reference ranges for that assay).

The oncologist is going to discuss with colleagues why my testosterone levels would be so low, and whether I should be concerned about it. Wondered if anyone else had had a similar experience. (not on HT or any other medication)

User
Posted 28 Sep 2019 at 23:20

I Pete.  I had two done.  One via a London walk-in clinic.  And the other via a company called Medichecks.  Medichecks offer a choice of a finger-prick text at home.  Or venous test at a local centre.  I opted for the venous check. 

 

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User
Posted 22 Jul 2019 at 23:33
Have they discussed ajuvant radio therapy?

User
Posted 23 Jul 2019 at 00:28
I am surprised that you haven't been recommended for adjuvant treatment; I can't see any benefit to 'wait and see' in this case.

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

User
Posted 23 Jul 2019 at 03:51
Sometimes consultants wait for PSA to rise to a certain point but I agree with what they found it would seem sensible to have the salvage RT very soon. Suggest you ask about this without delay.
Barry
User
Posted 23 Jul 2019 at 08:45
Thanks all, and sorry, I probably wasn't particularly clear; the plan is to review after my next blood test in September. The oncologist was very clear that any increase in PSA and we'd start treatment immediately. And may reconsider in September even if PSA remains undetectable.

I felt that another couple of months to get over surgery would not make a difference either way. As an aside, I find it hard to believe that some microscopic disease has not already got out anyway.

So in a way, the short answer is yes, we did discuss adjuvant RT along with HT. I've taken a decision that I'd rather not start RT unless there's evidence of cancer that they can target.

I realise that there is an active debate about the benefits of adjuvant treatment and that it will be some time before the RADICALS trial is known.

Not trying to persuade anyone that this is the right way, it just feels like the right way for me.

User
Posted 23 Jul 2019 at 08:58
I think you are a prime candidate for RT because you had positive margins so long as lymph nodes are targeted too.

Re PSA I also think you would be a good candidate for ultrasentive testing. If you got a < with that you would have a better idea if it was safe to wait. It could be that your positive margins were killed by the surgery trauma and they have already got your lymph spread in the surgeons bucket.

User
Posted 23 Jul 2019 at 09:10

Good idea about the ultra sensitive test. I did ask, but my local hospital don't offer them.  Guess I could do it privately.

User
Posted 23 Jul 2019 at 10:01

Chris

I had extra prostatic extension and and positive margins. It took just over 2 years for my PSA to reach 0.13. I was fortunate that my hospital tested to 2 decimal points and from about 6 months post-op I could see a steady but slow increase in the PSA and could anticipate where I was heading.  Three years post op, PSA was 0.23 and I started salvage RT.

Thanks Chris

 

User
Posted 23 Jul 2019 at 10:22

Hi Chris,

Thanks for that, really good to know.

User
Posted 23 Jul 2019 at 13:54
Maybe click my picture and read my profile. Quite similar pathology. Iā€™m four years post op

If life gives you lemons , then make lemonade

User
Posted 23 Jul 2019 at 18:25

Hi Chris,

Thanks, yes I had actually read your profile before.  Looks like you had a rough time post-surgery.  I'm grateful that I have had a relatively easy time.  

If I can wing it I don't want to make decisions until I've had some more scans, as I don't trust the pathology - the surgeon only managed to get 4 lymph nodes and one was positive.  Seems to me that 4 does not really give a very full picture.

C

 

User
Posted 23 Jul 2019 at 19:42
I was Gleason 4+5, and also had positive margins and cancer found in the lymph node haul. I was advised at the 6 week review to start HT and book in asap for adjuvant RT to prostate bed and pelvic lymph area. There didn't seem to be a sensible alternative, given the pathology report.
User
Posted 23 Jul 2019 at 20:09

Hi Graham,

Thanks.  I think if they suggest that at the next meeting then it's exactly what I'll do.  I was happy with the idea of waiting a bit longer to give me more time to get over the surgery.  Hopefully giving me a better chance of coping with the side effects of RT etc.

But good to see that you're through it and climbing.  I used to go climbing up in the peak district, but gave up when I realised that I'm not actually very good at it :) 

C

 

User
Posted 24 Jul 2019 at 23:45

hi Chris, 

Are you getting a more sensitive PSA test organised ASAP? 

PCa is very unpredictable , let's consider despite path. report everything has been removed ? . or cells damaged ..   another PSA test in 6 weeks then 12 weeks as same lab (you might need to fund) would give 3 data points.  I do realise these still can be variable, even at same lab.

At the moment all you have is <0.1

So the next value is <0.1 then what ?

I do realise Ultra sensitive may not be accurate.. however looking at those profiles on here with 3 dec. places they seem pretty good to me. 

 

Yes statistically you look high risk, however everyone is unique..

 

 

Edited by member 24 Jul 2019 at 23:53  | Reason: Not specified

User
Posted 25 Jul 2019 at 08:00
It's important to have time to jeal post surgery as the RT will effectively stop further healing and probably make any surgery effects worse.

So taking some time is OK just don't let your medical team drop the ball.

User
Posted 25 Jul 2019 at 10:41
I've decided to pay for an ultra-sensitive PSA test. I'm aware that there are limitations in testing to this degree of accuracy. But for the sake of Ā£75 seems worth it.

User
Posted 25 Jul 2019 at 10:46

Exactly.  And given that it didn't seem to matter that it took 4 months from diagnosis to surgery, I don't see why taking 4 months the other side would make a difference.

"So taking some time is OK just don't let your medical team drop the ball

 

Edited by member 25 Jul 2019 at 10:47  | Reason: Not specified

User
Posted 15 Aug 2019 at 20:12

So after a fashion I finally managed to get a sensitive PSA done.  And happily it’s come back at <0.003.  

I do understand the scepticism around sensitive testing, I was only after an idea whether I was just under the standard <0.1 or a long way below it.

Accepting that it’s highly likely to rise again, but in the meantime somewhat reassured that I can wait for a definite rise rather than starting any adjunctive treatment.   Interested if anyone has a view on that point ?

User
Posted 15 Aug 2019 at 20:44
Well that was Ā£75 well spent - great news šŸ‘šŸ¼
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 15 Aug 2019 at 23:51
Yes great news,
User
Posted 28 Sep 2019 at 11:18
Had my September review (4 months post-surgery). PSA is still undetectable (<0.1) which is obviously very good. However, the oncologist, their boss and the surgeon who carried out the operation are all apparently convinced that my PSA will increase sooner rather than later.

In fact so much so that they're doing the PSA every 6 weeks rather than 3 months. With a Chlorine PET Scan when things move and then a decision about what treatment to start. RT is not recommended at this stage without knowing where any residual disease is.

Not sure if anyone else has experienced this, but I was quite concerned about lack of strength etc. following surgery so had a couple of blood tests for testosterone levels. Both tests came back at around 5nmol/l (which is below the reference ranges for that assay).

The oncologist is going to discuss with colleagues why my testosterone levels would be so low, and whether I should be concerned about it. Wondered if anyone else had had a similar experience. (not on HT or any other medication)

User
Posted 28 Sep 2019 at 18:17

Some men have low testosterone, and it might just be that you do and it's not related to the PC.

I would say it's a good thing at the moment, as it will slow the PC growth (although it's not down at HT levels).

I was going to suggest you talk about starting hormone therapy, ready for the RT.

User
Posted 28 Sep 2019 at 21:28

Chr1s, as a matter of interest where did you get your ultra sensitive PSA test done ?

User
Posted 28 Sep 2019 at 23:20

I Pete.  I had two done.  One via a London walk-in clinic.  And the other via a company called Medichecks.  Medichecks offer a choice of a finger-prick text at home.  Or venous test at a local centre.  I opted for the venous check. 

 

User
Posted 28 Sep 2019 at 23:43

Hi Andy

We did discuss starting HT now, but the plan is to see what shows on the scan as/when the PSA goes up.

I realise that’s not the conventional plan, but I’m happy with it.  

This might be of interest with regard to the adjunct RT debate 

https://www.esmo.org/Press-Office/Press-Releases/ESMO-Congress-prostate-cancer-surgery-radicals-artistic-Parker-Vale

 

 
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