Another one bite the dust

User

Posted 11 Aug 2021 at 20:03

@TechGuy/Simon & @Jeremy,

Did you take up on the physiotherapy offer?

It's covered by my insurance but the travel is going to be a pain so wanted to know if the physiotherapy session is a must have.

One day at a time...

User

Posted 11 Aug 2021 at 20:14

Hi Bob

No I didn’t as asked around at the time and folks plus others said pelvic floors should do the job and it has. I took up light Pilates/yoga after 12 weeks then returned to the gym.

User

Posted 11 Aug 2021 at 22:12

Hi Bob

I wasnt offered any physio I dont think so not sure what you were referring to. Except for the somapump which they recommended and which Im trying to get around to trying again.

as for the first PSA test I will definitely be telling the lab I just had RP and will enquire as to how many decimal points they can measure.

did you get your histology report yet ? I had to ask for a copy of mine but they were happy to email it to me. I found the report reassuring and in my darker moments when I worry about the upcoming PSA test i take some comfort that this was positive.

good luck with everything.

User

Posted 12 Aug 2021 at 12:02

I guess I will attend the first session and see what it's all about. They may want to check if I'm doing the PFE properly...

Is the VED pump something you buy with your own money? I'm thinking of buying one now but maybe best to wait for the appointment when they remove the catheter.

I have not had my histology report yet. I'm only 1 week post op.

One day at a time...

User

Posted 12 Aug 2021 at 12:46

Bob

Check the santis website if you registered as everything comes to there super quick. I got my histology before the prof saw it as he was working. It’s very efficient and works like a dream.

yeah recommend waiting for 4 week review before doing anything. I didn’t bother with a pump as didn’t find I need it but it’s self funded if you do. ~£200 I think.

User

Posted 18 Aug 2021 at 12:35

@TechGuy,

Yep, you were right, the report was already uploaded on the system. It's very quick, efficient and convenient. As far as I can tell, there seems to be no nasty surprises (i.e. pathology match clinical), which is reassuring. Will discuss with the Prof in a few weeks' time.

Got myself a VED to work on penile rehabilitation as soon as the catheter is out.

One day at a time...

User

Posted 18 Aug 2021 at 15:26

You must not use the VED until the surgeon has given you the okay - usually at the 6 week post-op review when he has seen that your inners are healing correctly.

In most (but sadly, not all) areas of the country, you can get a proper VED on the NHS if your surgeon or ED nurse writes to the GP to request it.

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

User

Posted 19 Aug 2021 at 11:39

Thanks LynEyre, I will make sure to double check with my surgeon first.

One day at a time...

User

Posted 03 Sep 2021 at 21:13

Well, I had my final histology consultation and it turned out to be a mixed bag. On the plus side, the cancer grade (3+7) and stage (T2) remain unchanged.

On the not so plus side, there is one positive margin (8mm) on the left apical anterior. I discussed the matter with my consultant and he did not seem to think it was significant and would impact biochemical recurrence (BCR) as he used cautery in that area (hot knife). His view is that the heat will have taken care of cancer cells on either side of the margin. I would like to share his optimism but I am rather anxious and find myself having to wait for the dreaded first PSA test in 6 weeks time.

His prognosis is 90% to 95% chance of being disease free in 10 years' time which I find positively high. I did ask him to confirm as I could not believe it. I also asked him to confirm if the nomograms he used took into account the positive margin. He said yes.

Anyway, I wonder if that positive margin business has happened to others... Would be good to share/exchange.

On the plus side I have 40~50% erection at week 4 post op and continence is good.

One day at a time...

User

Posted 04 Sep 2021 at 08:40

I must confess I am really feeling down and could do with some support...

This positive margin business is really dragging me down...

One day at a time...

User

Posted 04 Sep 2021 at 08:49

Very sorry about the positive margin issue. I dont know enough about the issue to offer an opinion im afraid but we are all rooting for you.

I also found the consultants optimism slightly disconcerting. How could he be so sure? But in the meantime I would try and put the upcoming psa test to the back of your mind. There really is no point in worrying as there is nothing you can do. Of course Thats easier said than done! Good luck

User

Posted 04 Sep 2021 at 09:07

@Jeremys,

Thanks for your kind message. I too cannot understand why my surgeon consultant is so optimistic. I will drop him an email and ask him to elaborate as his answers over the phone can be very dry. He is very good at responding to emails.

One day at a time...

User

Posted 04 Sep 2021 at 09:23

Plug your to numbers in here to work it out for yourself
https://www.mskcc.org/nomograms/prostate/post_op

What the surgeon has described is correct and not unreasonable. The big test will be that first post op PSA. Unfortunately you have to grin and bear it until then.

User

Posted 04 Sep 2021 at 10:05

Hi Francij1 and many thanks for the link. It's a good one. I was aware of it and did plug in my data which gave me a 10-year disease free survival rate of 61%, much lower than the 90%-95% quoted by my surgeon. My surgeon may have mixed up 2-year and 10-year probability, which is why I asked him to confirm the probability he gave me were for 10 years. I will get back to him and ask him which nomograms he is using...

One day at a time...

User

Posted 04 Sep 2021 at 11:22

I wonder if there are different types of positive surgical margins with some significant than others...?

One day at a time...

User

Posted 04 Sep 2021 at 12:33

The size of the margin and the Gleason grade at the the margin. TBH the recurrence rate of positive and negative margins is very similar and this supports your surgeons assertion that the trauma of the op and the hot knife fatally damages cells beyond the excision.

The good news for positive margins is should you have a recurrence it makes salvage RT more successful.

Try to forget about all this sh*** until your next PSA!

User

Posted 04 Sep 2021 at 13:13

Jonathan, thanks for the insight! I know I suffer a lot from health anxiety and wish I could approach things differently but it's hard. I have emailed my consultant surgeon and asked him some detailed questions. I'm hoping he will come back with some more elaborated answers that substantiate his optimism.

I really hate this cancer business...

One day at a time...

User

Posted 04 Sep 2021 at 22:26

Originally Posted by: Online Community Member

I must confess I am really feeling down and could do with some support...

This positive margin business is really dragging me down...

If the surgeon thinks you're probably alright, try to accept it. None of us have cast-iron guarantees, even those with negative margins.

I also had a small positive margin. My surgeon said it was "diathermied" which pretty much means it would have been fried by the heated snippers of the DaVinci robot.

If your PSA is low and stays low, you're OK - for now. It's a bit sad, but that's about as solid as the reassurance gets. But your attitude of 'one day at a time' is spot-on and is the right approach.

_____

Two cannibals named Ectomy and Prost, all alone on a Desert island.

Prost was the strongest, so Prost ate Ectomy.

User

Posted 04 Sep 2021 at 22:45

Hi Bob!

As Alex says there are no guarantees in this game. But so far the stats and data are on your side. It’s very much a roller coaster ride through and through. I pretty much expect mine to come back at some point but the longer I can push that back gives the science more time to evolve. Chin up and enjoy the bubbly as you defo have had a good outcome so it’s celebration time 🍻🥂

User

Posted 05 Sep 2021 at 09:25

@alex_cycles, you're right, I should accept my surgeon's explanation and go with the flow. After all, why waste energy on something that cannot be changed? I just need to accept the hand I have been dealt with and make the best of it. It's the PSA test that will tell me how successful the RP has been.

One day at a time...

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