Recent diagnosis low risk localised prostate cancer

User

Posted 16 Feb 2020 at 21:34

Hard call

for me with my knowledge of the histopathology it’s a mess. Without the RS + RP I would have maybe gambled with focal. Not easy outcome and home you can work out what best fits for you, TG

User

Posted 16 Feb 2020 at 22:14

Hi Clare, pleased the recovery of your husband from HIFU is going well. I remember how from the outset one of your/his prime concerns in settling for focal treatment was to try to avoid the risk of over treatment by more conventional Prostatectomy or Radiation. The effects of treatment by HIFU from data so far shows it impacts men less severely and can be repeated in need. It does have it's limitations, as the cancer has to be in a position where the probe can focus the ultrasound and there can be situations where the extent of cancer is such that one of the conventional treatments may be a better alternative.

My situation is more unusual because I have already had RT and salvage HIFU, the latter by the same surgeon as your husband. She has said that if the MRI I am having next month shows the cancer has not spread to the seminal vesicles (or outside the prostate I assume), she would consider treating me again with HIFU. However, due to the small tumour seen on my last MRI being very close to my rectum, she has cautioned that there would be a greater risk of a Fistula forming. (Hopefully, I wouldn't be her first!). HIFU can be considered more of a 'niche' primary treatment for suitable men interested in minimizing side effects but aware that further focal or other treatment is more likely although not always needed in due course. It's more widely used as a salvage treatment for failed RT.

Edited by member 16 Feb 2020 at 22:42 | Reason: Not specified

Barry

User

Posted 17 Feb 2020 at 00:19

Oh Barry

Definitely a hard call ( as Tech Guy said above) for you as well.

As we all know everyone’s journey varies and as you say a slightly different position of what they are treating changes the complexity and therefore the odds.

So A has sailed through the HIFU but it sounds like a higher risk for you ( I only knew about fistula risk from this forum - you guys have been amazing at getting the detail out there!)

But yes since A’s original low risk diagnosis at the end of 2016 we have been attempting (and achieving) to avoid over treatment so his QOL has not been impacted by either of his 2 focal treatments.

However doing nothing would have been an under treatment for sure The HIFU ‘long weekend’ has barely blipped his life. If it hasn’t done the job and something more radical needs doing then he has had time to adjust to the fact he has cancer and has tried to avoid any treatment that could change our lives. I think this will help him mentally if and when that radical door has to be opened.

if we could guarantee the outcome Techguy got the decision would be easy, however John (Bollinge) (if I understand correctly ) had the same procedure by the same surgeon and it’s been goodbye erections (plus his amusing take on his his lost inches!).

A hard call indeed for you both.

Clare

User

Posted 17 Feb 2020 at 16:40

I had Brachytherapy which so far has been successful. I asked my urologist before the brachytherapy if surgery was possible afterwards should it be needed. He told me that he does do surgery after brachy, but not all surgeons will/can do it. The risks are higher and bleeding can be a problem so it is not undertaken lightly. Hopefully I will never need surgery, anyway my urologist has changed so finding him again might be difficult!

John

Gleason 6 = 3+3 PSA 8.8 P. volume 48 cc Left Cores 3/3, Volume = 20% PSA 10.8 Feb '19 PSA 1.2

Jan '20 PSA 0.3 July '20 0.1 Jan. 21 < 0.1 Dec 21 <0.01 June '22 <0.01 April '23 <0.01

User

Posted 17 Feb 2020 at 18:42

I have reconsidered my earlier post, and I would say: take your time researching all options. Gleason 6 suggests that the Tumour is unlikely to do anything dramatic soon, and could just do nothing. There is a danger of overtreatment, and with all treatments you would need to live with the long term effects. Would active surveillance be on option over the next months/years be an option? At least until you have considered all options fully...

My own experience: similar age. Surgery surprisingly easy (for me). Mesh was a challenge for the surgeon, but not a major problem. Continence is 100% (as predicted by the surgeon). But I will have ED going forward. For me, this was a small price to pay for a shot at a long life (I had a Gleason 9 tumour). But with a low risk tumour, then your considerations would be different.

Best of luck whatever you decide. But take your time...

Edited by member 17 Feb 2020 at 18:43 | Reason: Not specified

User

Posted 19 Feb 2020 at 18:28

Thought I would just update that I have decided against HIFU as I had a brief telephone conversation with a London Consultant who believes that due to 7 out of 10 positive cancer samples HIFU would not be the best option as it suggests the cancer is not confined to one area making HIFU less effective and less likely to get the results needed. I am seeing this consultant (who can't be named here) on Friday, he also specialises in the Retzius sparing procedure. I have picked up my histology and mri report today and notice it has been upgraded from Gleason score 3+3 (6) to 3+4 (7) as "two cores (A1 and A2) show foci of fused and small poorly formed glands, amounting to a focal pattern 6". Can anyone help me in understanding this?

User

Posted 20 Feb 2020 at 22:01

Hi Andy

i’d clarify with the consultant. From way I interpret it they are saying two anterior samples show Gleason 6 disease. Basically focal areas of non-normal cells hence the comments on how they are formed. Normal cells tend to looks similar and well differentiated ie similar and connected in the cellular matrix is an ordered fashion on the eye. When the cells mutate and change over time this linear spread becomes more clumped and disorganised. Hope that makes sense. 3+3 ie Gleason 6 look very similar to normal cells (low grade). If you have some type 4 cells then some are more dispersed in the cellular matrix instead of being evenly spread out.

User

Posted 20 Feb 2020 at 23:31

My reading of that is that although the majority of cancerous cells were a G3, you have two small areas where the cell pattern includes what would in the past have been considered a 3 but is now treated like it is a G4.

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

User

Posted 11 Mar 2020 at 19:12

Today I had pre op assessment in London and op is booked in for Wednesday 18th March. Surgeon has seen MRI pictures sent from NHS consultant and confident that he can save all nerves on one side of prostate and most on other side. Fingers crossed everything will go to plan and just hope this coronavirus situation won't affect anything. I feel I am in very good hands and will post my progress over next few weeks.

User

Posted 11 Mar 2020 at 22:11

Best of luck Andy. Hope everything goes smoothly and you can enjoy the recovery with a good outcome. Keep us posted! TG

User

Posted 14 Mar 2020 at 21:49

Good luck Andy.

If you haven't already, buy fybogel to take for several days before and after the op'. It will keep your bowels moving and prevent unnecessary straining.

Neil

User

Posted 14 Mar 2020 at 22:19

Thanks guys. Will keep you posted and good shout re Fybogel will get some tomorrow. Am currently self isolating lol as a bit paranoid I don't get this virus. I live in Swansea and ten more cases identified with it here today!

User

Posted 30 Mar 2020 at 13:54

An update as promised: Managed to have the operation Wednesday 18th March, In fact I was very lucky as informed that Princess Grace Hospital along with other hospitals considering ceasing all operations due to the coronavirus (cv) situation. I didn't think I was going to be fortunate enough but had the call on the Tuesday to say that everthing was going ahead. The surgeon P.S. who cant be named here performed (Da Vinci) a nerve sparing, Retzius-sparing and bladder neck sparing robotic radical prostatectomy. The three and half hour procedure went without any real complications and due to CV I was discharged on the Thursday 19th. Stayed in London with my wife for the week. Managed to persevere with the catheter for the 8 days required, it was more of a nuisance than painful and required emptying on practically an hourly basis throughout the daytime.

Thursday 26th March had a follow up consultation and catheter removed with no real problems and met with consultant who gave histology which showed Gleason 3+4=7, Stage pT3a, there was a 2mm gleason 3=3=6 extraprostatic extension at the base/bladder neck margin. In a nutshell there is a 10% in 10 years or 15% in 20 years of the cancer re occurring and the risk of dying is quite low at 1% in 15 years. He also said that the risk of needing RT in the future is low.

Overall I am pleased with the result and since returning home I am practising the pelvic floor exercises given. Completely dry through the night and 95% in the day so far, a couple of dribbles if I laugh or occasionally when I bend down to pick something up. ED is expected at this stage and will hopefully improve as time goes on. PSA test will be in the next 2 months. Fingers crossed!

User

Posted 30 Mar 2020 at 14:11

Great news and I bet that’s a relief to be on the other side in a timely manner. Plus you had a great surgeon. Hope the continence is fine (dribbles for me resolved almost spot on week 6 when the stitches started to dissolve) and ED issues resolve. I was put on low dose (Daily 5mg) tadalafil A month post op and that’s helped a lot. Onwards and upwards!

cheers

Edited by member 30 Mar 2020 at 14:13 | Reason: Not specified

User

Posted 30 Mar 2020 at 14:26

Thanks TG, I'm feeling confident regarding continence as time goes on and will just persevere with pads for the time being. Onwards and upwards it is lol!

User

Posted 30 Mar 2020 at 14:41

Should be fine. I was dripping on and off up to six weeks even though completely fine on day of TWOC. There is a lot of swelling plus stitches can hold the urinary sphincter open slightly under tension according to the profs post op guidelines/notes. Fingers crossed it resolves as that six week mark was spot on. Other have been dry straight away but varies I guess case by case. I wore pads daily until about week 7 or 8 just for reassurance and since then just carry one with me but not needed at all. Only mishaps I have had were week 12 at the gym I leaked a couple of drops. And after a barrel of beer wet myself while comatosed.. tend to stick with wine these days as less volume. Gym no issues at all. pelvic floor definitely very helpful to manage stress leaks but I don’t get those either now so can cough, sneeze, pass wind without issue. 😀

User

Posted 29 May 2020 at 22:15

I thought I would update my current situation approx 2 months post RP. My psa results came back this week as <0.1 micrograms per litre which I am well pleased about. I am practically dry and wearing a safety pad on occasions (at work in the day or if out walking in the evening) best days I am completely dry and worse case in a day in past month is approx 30ml leakage. Walking for over an hour in the evening seems to be the hurdle as at that time I get sphincter muscle fatigue and can occasionally leak approx 3-5ml which is manageable and have been told by the consultant to up my pelvic floor exercises to 6 times daily to strengthen the muscle. ED is still an issue and was prescribed Tadalafil 5mg daily, however I was intolerant to this so have now been prescribed Sildenafil 25mg daily for the time being. Overall I am pleased with the progress and am always grateful to this group for their sound ongoing support on my journey. Thank you!

Edited by member 29 May 2020 at 22:22 | Reason: Not specified

User

Posted 30 May 2020 at 06:35

I don't know if this will help, but I had my op on the 9th March and was also experiency some difficulty with small leaks at the end of my walks. I found that if I concentrated I could really tighten the pelvic floor while walking and feeling the need to pee. This seems to have done the trick. Not worn a pad the last 4 days and had no leaks.

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