Making my mind up

Making my mind up

User

Posted 28 Dec 2021 at 11:18

Also, I think don't get too sidetracked by the idea that your PSA is high for a G6 - there is no 'high' or 'low' for a particular gleason grade. We have had men here with PSA of 80 or more and no cancer ... and men with PSA of around 3 and G9. Your PSA is just what your PSA is, and your Gleason score is not directly related to that.

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

User

Posted 28 Dec 2021 at 11:27

Originally Posted by: Online Community Member

thanks Lyn - that has been bothering me - I know I am in a ‘relatively’ good position compared to many with a 3+3 and a tumour that is small, contained and on one side only. But the PSA has been worrying me. If only it were below 10 the medics may have offered AS 😀

regards, GG

User

Posted 28 Dec 2021 at 12:53

Originally Posted by: Online Community Member

I don’t think it was helpful or appropriate to suggest to you that you should request a PSMA scan - you could have got the impression that you were missing out on something that other people get routinely.

Guilty as charged m'lud 😁

User

Posted 28 Dec 2021 at 15:53

Originally Posted by: Online Community Member

a wee reminder of my original post - I am keen to come to a decision whilst I am off work for holidays so would appreciate advice, views of others on preferred option from the two I am offered (RT with 3 month HT preceding, or RP).

Hi GG

I am aged 65 and was G3+3 and PSA of 14.2, but a November biopsy changed it to G3+4 (3 of 11 cores on the right side with one of them being 80% grade 4 cancer, 1 of 9 cores on the left side with that one being 5% grade 3 cancer). My consultant has recommended RP, with RT as a close second and AS as the least favoured option. I am favouring RP as both RP and RT have side effects, but I think RP offers a bit more certainty. My general health is good, so fingers crossed I won't be unlucky and have particularly severe side effects (but am very aware there is no guarantee). My understanding is that if the cancer returns after RP I can then pursue RT, but doing it the other way round is more difficult (i.e. RP after RT).

I have had conversations recently with someone who was aged 67, PSA 7, G3+3 and who decided to skip any biopsies and go for RP. His logic was that the cancer was never going to get any better, so he would have surgery while he was relatively young and in good health, rather than waiting until he was in his 70s and recovery would take longer. In this he was supported by a long term, trusted GP who had himself had RP. Six weeks post OP he is almost fully continent, but still too early to say regarding ED.

Everyone has to consider their own particular circumstances, but as I say, I am minded to opt for RP.

Regards

Paul

User

Posted 28 Dec 2021 at 16:55

I read this thread with interest and, once again, some anguish for the decisions that people have to make.

A few observations and questions:

If there is no ‘high’ or ‘low’ PSA level for a particular Gleeson grade, why is GlasgowGuy being pushed towards treatment and away from AS, mainly because he has a high PSA level?

I despair when people say (in this case in respect of PSMA scans) that they cannot be offered because “it would bankrupt the NHS”. Even using the figures of 45,000 men (not all of whom would require this type of scan) and a cost of £5,000 (which someone who was having the scan says actually costs half that) the total cost would still be less than the NHS spend on ‘diversity managers’.

To GlasgowGuy I would ask - has brachytherapy been offered or discussed? I believe it requires that the prostate isn’t too big (you say yours isn’t) and that it can be completed with an overnight stay in hospital (which might suit your work commitments). I don’t know whether surgery to remove the prostate is an option later, if it proves necessary.

User

Posted 28 Dec 2021 at 17:09

Originally Posted by: Online Community Member

I read this thread with interest and, once again, some anguish for the decisions that people have to make.

A few observations and questions:

If there is no ‘high’ or ‘low’ PSA level for a particular Gleeson grade, why is GlasgowGuy being pushed towards treatment and away from AS, mainly because he has a high PSA level?

I despair when people say (in this case in respect of PSMA scans) that they cannot be offered because “it would bankrupt the NHS”. Even using the figures of 45,000 men (not all of whom would require this type of scan) and a cost of £5,000 (which someone who was having the scan says actually costs half that) the total cost would still be less than the NHS spend on ‘diversity managers’.

To GlasgowGuy I would ask - has brachytherapy been offered or discussed? I believe it requires that the prostate isn’t too big (you say yours isn’t) and that it can be completed with an overnight stay in hospital (which might suit your work commitments). I don’t know whether surgery to remove the prostate is an option later, if it proves necessary.

hi Ian,

It seems AS is deemed not to be suitable purely on the PSA level. Although i have a low grade tumour which was described by my urologist as ‘very low grade’, ‘possibly the beginning of a tomour’ ( on viewing MRI prior to biopsy ). But the PSA being > 10 puts me into an intermediate risk group for which AS is not recommended.

i did ask about Brachytherapy but it wasn’t recommended ( I think again due to PSA )

regards , GG

User

Posted 28 Dec 2021 at 17:22

Hi having read about your diagnosis read my treatment selection on IRE which offers lower side effects

happy to chat to you if u wish

paul

User

Posted 28 Dec 2021 at 17:43

The info from my hospital eight years ago was you should be back at work within 2-6 weeks after RARP. I think 2 weeks is very optimistic, I was back at work but confined to the office after five weeks after surgery, at seven weeks l was traveling all over the uk visiting sites. My job didn't involve manual work. I was lucky to be 99 percent dry when I returned to work. I imagine someone doing a manual job and leaking like a sieve would find it challenging being back at work.

We all recover in different rates, and no one can guarantee what your post op situation will be.

Success rates for RP and RT are often quoted at 70 percent. I had to have salvage RT, so had to endure the side effects of surgery and RT. I didn't have HT.

I am sure the guys who had RT and HT will give you thier experiences. Fatigue is often mentioned as a effect of HT.

Good luck with your choice.

Thanks Chris

User

Posted 28 Dec 2021 at 17:49

Originally Posted by: Online Community Member

We all recover in different rates, and no one can guarantee what your post op situation will be.

Success rates for RP and RT are often quoted at 70 percent. I had to have salvage RT, so had to endure the side effects of surgery and RT. I didn't have HT.

I am sure the guys who had RT and HT will give you thier experiences. Fatigue is often mentioned as a effect of HT.

Good luck with your choice.

Thanks Chris

thanks for sharing your experience Chris. I can work from home ( office job - have been wfh for last 20 months due to pandemic ) so I am hoping I could return to light duties quite quickly given it only means turning in laptop in home office )

regards, GG

User

Posted 28 Dec 2021 at 17:51

Thanks Paul , IRE seems quite new and not sure how widely available it is - again, my PSA may rule out this option - but I’ll take a read

regards. GG

User

Posted 28 Dec 2021 at 18:50

Hi GlasgowGuy

sorry to hear about your diagnosis. Its not an easy decision. I was faced with the same this year and opted for RP. Check out my main thread for the details. I could not face going through RT over several weeks and just wanted it out having monitored my PSA for 15 years. Its more difficult for you as youve only just discovered you have a problem and in my case (T2BN0M0 multifocal PSA 6.3) both oncologist and surgeon said they would opt for surgery if they were me. At 60 you are relatively young so surgery is often suggested . all I can say is that if you go with a high volume surgeon with good stats your continence should be ok after a few months (I was dry almost immediately) and regarding ED if they can do nerve sparing then that improves your chances of a relatively normal sex life. Albeit without ejaculation which I do miss. Apparantly SRT is an option after RP if you do get a recurrence and was another reason I went with surgery. Good luck with your decision and make sure its your decision. Trust your gut having done all the research. You will feel much better when youve made a decision.

User

Posted 29 Dec 2021 at 02:41

Originally Posted by: Online Community Member

I read this thread with interest and, once again, some anguish for the decisions that people have to make.

I despair when people say (in this case in respect of PSMA scans) that they cannot be offered because “it would bankrupt the NHS”. Even using the figures of 45,000 men (not all of whom would require this type of scan) and a cost of £5,000 (which someone who was having the scan says actually costs half that) the total cost would still be less than the NHS spend on ‘diversity managers’.

Of course the NHS could use extra money to help encourage people to fill clinical vacancies and the situation has been made worse with the pandemic diverting some staff to help deal with it. But even before the pandemic, the number of radiographers and radiologists fell well short of what was needed. It takes time to train these, more so to do the more advanced scans and with an ageing population demand will further increase. One has to remember the scanners are used for many other reasons than for PCa. Aso, it's not just the cost of the scan but the capital cost of all the extra linacs that would be needed.

People have different views on the cost and need for 'Diversity Managers', so best not debated here.

Edited by member 29 Dec 2021 at 02:45 | Reason: Not specified

Barry

User

Posted 29 Dec 2021 at 10:49

Originally Posted by: Online Community Member

hi Ian,

i did ask about Brachytherapy but it wasn’t recommended ( I think again due to PSA )

regards , GG

A T2 staging will not usually be considered suitable for AS unless the cancer was in less than 5% of the cores taken. I am surprised that you were told brachy wasn't an option - there are two kinds of brachy depending on how advanced the cancer is. Did an oncologist rule it out for you or was it just the urologist's view? The cynic in me wonders whether it was ruled simply because your hospital doesn't offer it?

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

User

Posted 29 Dec 2021 at 12:19

I'm biased, because it happened to me, but upstaging is very common: MRIs are not very sensitive for EPE etc. What they can tell you is your free urethral length. The bigger the better/quicker in UI terms. There's a "pivot" in the 12mm area. I was 19 and immediately almost totally continent*. I think the risk of UI is a huge consideration in whether to have surgery. So is surgeon volume.

*I'm in London and there's a lot of hoopla about Prof hewhomustnot... and Retzius. "Normal" RALP has evolved for most high-volume people where the difference is really minute (and in my case zero). I asked my surgeon who he would have do his (LBH based, HCA, and Marsden (not Guildford). I will not be able to reply to IMs but can edit here if anyone wants to play guessing games).

<ADD>I guess from your username the London people are not that relevant. I guess there are high-volume people up there. Before having surgery, find them (the NHS is doing a good job of focussing cases on a few surgeons, but do make sure). The Stateside horror stories seem to come from low-volume people.</ADD>

Edited by member 29 Dec 2021 at 12:25 | Reason: add

User

Posted 30 Dec 2021 at 21:55

Thanks to all for sharing their views and experience - I have made my decision and elected for RP (robotic) - it is by far my preferred option compared to HT/RT.

Unfortunately there’s a bit of a waiting list and it will be several months before I get a theatre slot. In some ways that worries me since I obviously don’t want too long a delay but I am assured that with a contained Gleason 3+3 there is no pressing urgency.

I can now step into a new year with a firm plan of action and with gratitude and relief that my treatment option is a curative one.

I will use the time productively to ensure physically and mentally prepared but will avoid too much online reading since I could end up obsessing over the pros and cons of my decision.I just lab to stay focused and look forward.

This is a great resource and I can’t commend highly enough the specialist nurse I spoke to.

I’ll keep you posted on my journey in the hope I can help others as I have been helped (and since I’ll probably need occasional reassurance when the inevitable worries creep up on me).

Regards, and wishing all of you a happy new year when it comes. GG

User

Posted 30 Dec 2021 at 22:11

Yes: well done making a decision. I promised myself never to second guess my own: OK so far. Now for Kegels and if needed a trimming up: as you say, far better than reading!

User

Posted 30 Dec 2021 at 22:29

Things usually look far better once you have made a decision. Others will advise you to do the kegels and get fit and lose weight, etc, etc. My advice is to get a holiday or a couple of weekends away (covid permitting), have loads of sex and just take joy in doing normal couple things. That was the advice our uro gave John and I know that he later wished very much that he had listened.

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

User

Posted 31 Dec 2021 at 01:23

Good decision GG.

Prof, I'm slightly perplexed as to why the PET scan came up negative in the various places you're going to receive RT but all the best for your treatment.

Jules

User

Posted 31 Dec 2021 at 13:17

i cant add Much so just wishing you all the best with it!

User

Posted 31 Dec 2021 at 16:58

As Lyn says it is always better once you have made your decision.

The rest of her advice is spot on too!

Ido4

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