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New diagnosis. Advice about treatment

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User
Posted 03 Feb 2022 at 15:48

Hello everyone.  I’m the wife of a 62 year old healthy and active hubbie.  We’ve been looking through the forum lately whilst waiting for diagnosis (the waiting has been awful to say the least).  This forum has been invaluable.  Thank you to all the contributors.


Anyway, diagnosis through today, here are the stats:


PSA 4.2


stage T2b N0 M0


gleason 3+4 = 7


 14mm length tumor,  left side  (prostate is 37mm in total) 


testosterone 28.9 (high)


6 samples out of 20 tested positive


Pirads 3 and 4 from MRI


symptoms of low urine flow, ED, and some back pain (when trousers are too tight - which is weird!)


No sign of spread anywhere else (so localised)


described as non aggressive, slow growing but treatment advised.


 


That’s a lot of info, but we think we understand it all.  Does anyone out there have similar diagnosis and have any suggestions about treatments?


Hubbie is very active (loves to walk).  We have two hols planned over next three months and not sure whether to go ahead.  MDT meeting tomorrow and will call with more advice etc.


it was what I had predicted given the stats coming in, so actually slightly relieved it’s more positive than it could have been!   Treatment and lifestyle impact the big question going forward………. Any advice would be hugely appreciated.

User
Posted 03 Feb 2022 at 15:48

Hello everyone.  I’m the wife of a 62 year old healthy and active hubbie.  We’ve been looking through the forum lately whilst waiting for diagnosis (the waiting has been awful to say the least).  This forum has been invaluable.  Thank you to all the contributors.


Anyway, diagnosis through today, here are the stats:


PSA 4.2


stage T2b N0 M0


gleason 3+4 = 7


 14mm length tumor,  left side  (prostate is 37mm in total) 


testosterone 28.9 (high)


6 samples out of 20 tested positive


Pirads 3 and 4 from MRI


symptoms of low urine flow, ED, and some back pain (when trousers are too tight - which is weird!)


No sign of spread anywhere else (so localised)


described as non aggressive, slow growing but treatment advised.


 


That’s a lot of info, but we think we understand it all.  Does anyone out there have similar diagnosis and have any suggestions about treatments?


Hubbie is very active (loves to walk).  We have two hols planned over next three months and not sure whether to go ahead.  MDT meeting tomorrow and will call with more advice etc.


it was what I had predicted given the stats coming in, so actually slightly relieved it’s more positive than it could have been!   Treatment and lifestyle impact the big question going forward………. Any advice would be hugely appreciated.

User
Posted 03 Feb 2022 at 17:59

Hello,


We had the same ‘whip it out and get it sorted’ attitude too. My husbands initial diagnosis was worse so we were told he would need radiotherapy aswell, even with that my OH just wanted rid. 


My husband is a bit older too and they thought continence would be more of an issue, but 4 weeks on from RALP he’s doing really well and very few issues with continence. ED is an issue (50% nerves spared) and we have just been prescribed the vacuum pump. He’s currently on HT though so that doesn’t help as he has no libido so not interested in me at all ha….not taking it too personally though. We were extremely happy with our surgeon, but did end up going private as we thought the risks were higher for him and with more covid issues we figured that would mean more delays.


Best of luck with whatever decision you decide to go with.

User
Posted 03 Feb 2022 at 18:54
Those holidays are so important - and if he decides on surgery, the chance to go away and relax and do 'the things that couples normally do' will be so important later. When my husband was diagnosed, the surgeon advised us to go on holiday and have loads of sex just in case it wasn't possible anymore after the op. My husband didn't take that advice on board and in hindsight, it would perhaps have been easier to bear what happened next if we had gone away and done as suggested.

It will be essential to speak to an oncologist as well as a surgeon - I think if it was my husband or brother, I would be leaning towards brachytherapy if available.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 03 Feb 2022 at 22:14

HimSusieCatherine


 


I had identical diagnosis last summer aged 57 and chose to whip it out with a high volume surgeon at LBH. Check out my main thread for the complete journey. I have no regrets and am 100% continent and with no ED problems to speak of. Its a very personal decision so do your research and trust your gut. Make sure you get an onco and a surgical opinion and then make up your mind. This forum is a godsend and everyone was so helpful to me. Check out TechGuy thread too as his really helped me understand the surgical route.

User
Posted 04 Feb 2022 at 08:34

Hi Susie, The figures in that diagnosis make it a mere pussy cat of a cancer.


Get on holiday and have some fun. MDT team may come up with a strong recommendation, but it is more likely they will give you a choice. It is much easier if they don't give you a choice, you just do what they say.


Given the choice most people choose the most aggressive treatment, I would suggest go for the least aggressive treatment, a focal one if possible (not very common in UK), Brachytherapy either low or high dose next , normal RT next, and Surgery as the last option as it has the highest chance of unpleasant side effects.


Some of the options may come with the added complication of HT, I didn't have much problem with it, but if it is for two years, it may be too inconvenient. Some people would choose surgery to avoid HT.


 

Edited by member 04 Feb 2022 at 23:23  | Reason: Not specified

Dave

User
Posted 04 Feb 2022 at 11:22

My  prostate cancer figures were very similar to your husbands and I decided after 3 months on Active Surveillance to have my prostate removed. History/findings etc can be found detailed under my profile and in my narrative page.


My prostate was removed at Addenbrookes on 21/12 last year and feedback from my consultant yesterday has confirmed that all the cancer was removed ( Though, of course, one can't be 100% sure as one stray prostate cancer cell could still be lurking somewhere). It was also confirmed that the grade of cancer was the same as that found when I underwent 2 biopsies ( June and September 2021) but that the cancer was bulging out of the prostate and was likely, at some stage,to have broken out and infected other areas.


Good luck with your decision


 


Ivan

User
Posted 04 Feb 2022 at 22:48

My husband was operated on within two weeks of seeing the consultant on the NHS . We are in Kent. This was July 2021. He opted for prostate removal , he wanted to be radical as his father had died of prostate cancer. My husband had been on active surveillance for about 8 years so we always thought time would catch up.


The  incontinence side was a worry but it hasn’t been as bad as we feared. He was back running after 12 weeks albeit with Tena 3 pads. Now I think  the pads are ‘just in case’.


Both his follow up blood tests have seen psa undetectable , so for us it has been the right decision and a relief not to have to continue with worry and additional treatment plans. He was Gleason 7 and was 67 when operated on .

User
Posted 05 Feb 2022 at 11:25

Hi


I am 74, fit and otherwise healthy and my diagnosis last September was very similar. Gleason 3+4 and T2b. My lesion was shown as close to the capsule. I was steered towards the RALP route and had the op in November. I must confess that after making my decision, doubts surfaced as to whether I should have more thoroughly evaluated less invasive focal options. What  vindicated my decision, in my mind, was that the post op pathology on the extracted gland revised the staging to T3a and I am happy I am rid of it. I may not have known that without the op. That said, 13 weeks after the op, my continence is only now showing slow improvement but this may be hindered by a previous surgical procedure and my age. As long as you have consulted, considered and agreed on a decision, be at peace with it and don't let doubts creep in. I did and it only served to cause me further stress. Enjoy your holiday!! 


 


 

User
Posted 05 Feb 2022 at 20:56
Many thanks for your message Music Man -( I couldn’t send a private message yet).
User
Posted 12 Feb 2022 at 07:20
Thank you guys - very reassuring. Will update in a few weeks with any news
User
Posted 12 Feb 2022 at 16:40

Originally Posted by: Online Community Member


Just starting on the prostate cancer diagnosis, 69 years old, my PSA is 412, had an MRI scan & nuclear bone x-ray, waiting for the results.



David,


Wishing that your results are favourable and that a treatment plan if formulated soonest.


This forum is really supportive and full of knowledgeable people.


 

User
Posted 12 Feb 2022 at 17:05

Hello David


It might be useful if you started your own thread so that postings about your treatment etc will be all together.


 


Ivan 


 

User
Posted 17 Feb 2022 at 16:52

Hi Susie


its best to research yourself as well as take advise from your doctor. 
Sadly many doctors are not aware or want to explore other options other than what they have in their local hospital on the NHS. Good to have a range of discussions and evaluate outcomes and side effects before you make your final decision. Remember it’s your choice ! 

User
Posted 25 Feb 2022 at 17:40

Hi Sue,


My husband had his RALP in December. He had lymph node dissection…they only took 14 nodes to try to reduce the chances of lymphoedema. Cancer had shown up in one node on the CT scan and PSMA pet scan so that’s why they were removed. I think it does happen where they take them if even no cancer….just in case of micro mets. 


Hope you’re husband recovers well from the op, so far it has all gone really well for Rob and much easier than we ever imagined. 


Elaine x

User
Posted 25 Feb 2022 at 17:57
Thanks Elaine. I’m still surprised they didn’t do PET scan or bone scan as common practice. Maybe it’s because his PSA is only 4.2?

So glad to hear that it went well for your husband and recovery is better than expected - that’s the news we need!
User
Posted 26 Feb 2022 at 00:43
Some hospitals do a bone scan for all diagnosed men while others only do it if they have reason to suspect mets.

Hardly any hospitals offer PET scan to all diagnosed men - they are expensive, PET machines are under great demand for more urgent situations, tracers can be difficult to produce and have a very short shelf life and, in terms of prostate cancer, seem far more effective at picking up recurrence at very low PSA levels than at initial diagnosis.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 26 Feb 2022 at 01:39
As the cancer is Positive to the PET tracer (proven by the + lymph node) it is highly unlikely to give false negative for any significant tumour.
He could have undetectable micro matastisis but only time will tell, hence he will be followed up for years.
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User
Posted 03 Feb 2022 at 16:57

Hi Susie
I expect Hubby, will be given the choice of Having his Prostate removed, or a combo of Hormone therapy & Radio therapy..


I was PSA 27 back in 2018, by the time all the tests were done, it was Jan 2019 & they decided it was 3 + 4 - slow growing. 
I went for the latter treatment - which takes a lot longer, but no surgery involved. I'm pretty well OK now, though I did get & still suffer a bit with Rectum damage, from the Radio therapy. Not really a major problem. It is probably a 2 year stint, all in all.


E.D., may well be anxiety - very understandable, HT will cause it too - but treated with Tadalafil - it can get better !
In that respect, I'm virtually back to normal now - though pretty dry ! Less mess I suppose, looking on the bright side.


My HT was started in the spring of 2019, & RT was Oct - Nov the same year - 20 visits to Addenbrooks, Cambridge. (Thankfully, just before Covid got started as a huge fear) My PSA went pretty low, & has stayed there - latest PSA 0.25, Dec 2021 - which they say is not a concern.


None of it, is very pleasant - but ignoring it, is probably not an option, either. As the quality of life, after you have kicked the bucket, is an unknown quantity !😪

Edited by member 03 Feb 2022 at 17:28  | Reason: Not specified

User
Posted 03 Feb 2022 at 17:26
I too went down the HT/RT route and found it all very tolerable. Surgery and RT have the same long-term success rates, so it's basically a matter of which set of side-effects one finds less objectionable. In my case RT was the recommended treatment, but it's also what I would have gone for given a choice.

Best wishes,

Chris
User
Posted 03 Feb 2022 at 17:31
Irrespective of the MDT I would suggest that you get on those holidays! The diagnosis is that the cancer is slow growing, deferring treatment for a few months shouldn't make a huge difference.
User
Posted 03 Feb 2022 at 17:37
Thank you both for your replies. The “whip it out and get it sorted” seems to be ahead slightly at the moment, but HT/RT options definitely worth investigating if offered.
User
Posted 03 Feb 2022 at 17:38
Yes music man, I tend to agree, that we should still go on hols!
User
Posted 03 Feb 2022 at 17:59

Hello,


We had the same ‘whip it out and get it sorted’ attitude too. My husbands initial diagnosis was worse so we were told he would need radiotherapy aswell, even with that my OH just wanted rid. 


My husband is a bit older too and they thought continence would be more of an issue, but 4 weeks on from RALP he’s doing really well and very few issues with continence. ED is an issue (50% nerves spared) and we have just been prescribed the vacuum pump. He’s currently on HT though so that doesn’t help as he has no libido so not interested in me at all ha….not taking it too personally though. We were extremely happy with our surgeon, but did end up going private as we thought the risks were higher for him and with more covid issues we figured that would mean more delays.


Best of luck with whatever decision you decide to go with.

User
Posted 03 Feb 2022 at 18:54
Those holidays are so important - and if he decides on surgery, the chance to go away and relax and do 'the things that couples normally do' will be so important later. When my husband was diagnosed, the surgeon advised us to go on holiday and have loads of sex just in case it wasn't possible anymore after the op. My husband didn't take that advice on board and in hindsight, it would perhaps have been easier to bear what happened next if we had gone away and done as suggested.

It will be essential to speak to an oncologist as well as a surgeon - I think if it was my husband or brother, I would be leaning towards brachytherapy if available.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 03 Feb 2022 at 19:31
Thank you Elaine and LynEyre. The ED issue is already an ongoing problem I’m afraid (one of his symptoms!). Doesn’t mean we can’t have a super holiday anyway … lol. Will research brachytherapy some more (radioactive seeds implants I believe?).
User
Posted 03 Feb 2022 at 20:52

Hi Susie. I can fully empathise with the waiting for diagnosis. I found the wait a nightmare. You may get a recommendation from the MDT on a preferred treatment route, although it's your choice in the end. I followed the recommendation and opted for surgery (later this month). If you OH still works then the surgery option would mean more time off work. Also there could be some waiting time for surgery, whereas HT/RT could start straight away. Certainly worth finding out what the local surgery waiting times are as it seems to be a postcode lottery. It's not an easy decision but once you have spoken with both the urologist and oncologist (and asked every question you can possibly think of) then you will be much better placed to make a decision. I would certainly want to avoid foregoing any holidays already booked and this may well be possible in your husband's case. Good luck. Chris

User
Posted 03 Feb 2022 at 22:14

HimSusieCatherine


 


I had identical diagnosis last summer aged 57 and chose to whip it out with a high volume surgeon at LBH. Check out my main thread for the complete journey. I have no regrets and am 100% continent and with no ED problems to speak of. Its a very personal decision so do your research and trust your gut. Make sure you get an onco and a surgical opinion and then make up your mind. This forum is a godsend and everyone was so helpful to me. Check out TechGuy thread too as his really helped me understand the surgical route.

User
Posted 03 Feb 2022 at 22:28

Hi,


The back pain is likely to be unrelated.


After surgery he should be walking as if nothing happened within 3 months probably much earlier.  In the early days there is a good chance of leaking with each step and not realising but it's no reason not to walk, just carry a spare pad or two. It improves every day with dryness lasting longer.


If he has hormones, I've no experience but have read the best plan is to step up exercise/ diet adjustment immediately to hold back body changes which are harder to turn back than hold back.


All the best,


Peter

User
Posted 04 Feb 2022 at 06:31

Hi susie


As you will have now discovered there is no one silver bullet treatment method


if I was you I would certainly open up your choice to involve less invasive focal therapies. I had IRE which most doctors in the U.K. have no knowledge of. My operation was quick, no incontenance  or erection issues - see my post on IRE


best of luck 

User
Posted 04 Feb 2022 at 08:14
Go on your holidays. I was diagnosed in November, and didn’t have surgery until the following June.

Ask his Doctor for either Tadalafil (Cialis) or Sildenafil (Viagra) tablets, to hopefully help with ED, and make your two hols like second honeymoons!

Best of luck going forward.

Cheers, John.
User
Posted 04 Feb 2022 at 08:34

Hi Susie, The figures in that diagnosis make it a mere pussy cat of a cancer.


Get on holiday and have some fun. MDT team may come up with a strong recommendation, but it is more likely they will give you a choice. It is much easier if they don't give you a choice, you just do what they say.


Given the choice most people choose the most aggressive treatment, I would suggest go for the least aggressive treatment, a focal one if possible (not very common in UK), Brachytherapy either low or high dose next , normal RT next, and Surgery as the last option as it has the highest chance of unpleasant side effects.


Some of the options may come with the added complication of HT, I didn't have much problem with it, but if it is for two years, it may be too inconvenient. Some people would choose surgery to avoid HT.


 

Edited by member 04 Feb 2022 at 23:23  | Reason: Not specified

Dave

User
Posted 04 Feb 2022 at 08:40
Some evidence emerging that surgery gives better long term control than EBRT. You also get the benefit of a complete pathological exam of the removed prostate.

The relief of a "less than" at the 3 month appt should not be underestimated either!

Cancel your holidays and get it sorted!



User
Posted 04 Feb 2022 at 10:13
Oh wow - thank you so much guys. Lots and lots to think about! Been chatting to hubby and we are still very 7 decided - more research needed (haven’t spoken to MDT yet though.). Thanks all xxx
User
Posted 04 Feb 2022 at 11:22

My  prostate cancer figures were very similar to your husbands and I decided after 3 months on Active Surveillance to have my prostate removed. History/findings etc can be found detailed under my profile and in my narrative page.


My prostate was removed at Addenbrookes on 21/12 last year and feedback from my consultant yesterday has confirmed that all the cancer was removed ( Though, of course, one can't be 100% sure as one stray prostate cancer cell could still be lurking somewhere). It was also confirmed that the grade of cancer was the same as that found when I underwent 2 biopsies ( June and September 2021) but that the cancer was bulging out of the prostate and was likely, at some stage,to have broken out and infected other areas.


Good luck with your decision


 


Ivan

User
Posted 04 Feb 2022 at 15:12
Thank you Oh Dear, sounds similar to my husband’s diagnosis.

I am hearing today, from a couple of people going through cancer treatments and an oncologist at UCLH, that cancer treatment is a bit chaotic in the NHS right now (timeline for diagnosis is good though). Has anyone experienced trouble recently trying to organise treatment once diagnosed? I’m sure the NHS is under huge strain at the moment.

User
Posted 04 Feb 2022 at 16:47

Hi Susie,


I had a diagnosis in January with levels of much higher that your husband.


Was given the option of surgery or EBRT with HT.


I chose the EBRT route. The consultant said even if I went for surgery, they would still carry out radiation treatment anyway. I am 71 years old, fit and active and have no symptoms, I only knew something was wrong when I 'happened' to go for mass testing and the results came back high.


From the initial suspicion, I was seen pretty rapidly through the whole process and once I saw the oncologist, he started me on a 28 day course of tablets to limit the 'spike' of the first injection there and then. I had the first injection yesterday and will continue every 4 weeks or switch to 3 months if all ok.


My EBRT will be starting in about 3 months . I live in Sussex.


I too was concerned about NHS under pressure etc. but I have found no problems in getting dealt with at all levels.


There is no wrong choice and each route could have its challenges.


Be at peace in what you decide and enjoy each day as a gift.


There is much wisdom on this forum which I truly appreciate.


With every blessing,


Ian

User
Posted 04 Feb 2022 at 18:59
Thank you Ian for your kind words and advice. So glad to hear the NHS has been on top of things for you and your treatment so far. Long may that continue and best wishes. Loving the support on this forum!
User
Posted 04 Feb 2022 at 21:08
This is the first I've heard about PCa causing ED. I was diagnosed just over 2 years ago at 68, with a slightly more advanced cancer, a bigger prostate and PSA of 9, but had absolutely no problems getting an erection at the time.

I couldn't have RT due to suffering from colitis, and surgery was only partially nerve-sparing, so I do have ED now. However, I have an undetectable PSA and practically no incontinence, so overall I'm pretty happy with how things have turned out.

I would ask for an honest opinion about whether hubby is ever going to get full function back whichever option he takes. After all, if he is going to suffer from ED anyway, it isn't worth worrying about that particular side effect.

However, I agree with Lynn; there are other options to surgery/RT these days and I would see if one of those is possible.
User
Posted 04 Feb 2022 at 22:48

My husband was operated on within two weeks of seeing the consultant on the NHS . We are in Kent. This was July 2021. He opted for prostate removal , he wanted to be radical as his father had died of prostate cancer. My husband had been on active surveillance for about 8 years so we always thought time would catch up.


The  incontinence side was a worry but it hasn’t been as bad as we feared. He was back running after 12 weeks albeit with Tena 3 pads. Now I think  the pads are ‘just in case’.


Both his follow up blood tests have seen psa undetectable , so for us it has been the right decision and a relief not to have to continue with worry and additional treatment plans. He was Gleason 7 and was 67 when operated on .

User
Posted 05 Feb 2022 at 00:06
Hiya, the diagnosis is near identical to mine; I ended up going the HT/RT route which side effect wise, besides the obvious impact on 'downstairs functionality', has been pretty good to date compared to some of the 'journeys' you read about; all details in Bio. Whichever path you end up choosing all the very best of luck! Any Qs plse ask away. Cheers.
User
Posted 05 Feb 2022 at 11:25

Hi


I am 74, fit and otherwise healthy and my diagnosis last September was very similar. Gleason 3+4 and T2b. My lesion was shown as close to the capsule. I was steered towards the RALP route and had the op in November. I must confess that after making my decision, doubts surfaced as to whether I should have more thoroughly evaluated less invasive focal options. What  vindicated my decision, in my mind, was that the post op pathology on the extracted gland revised the staging to T3a and I am happy I am rid of it. I may not have known that without the op. That said, 13 weeks after the op, my continence is only now showing slow improvement but this may be hindered by a previous surgical procedure and my age. As long as you have consulted, considered and agreed on a decision, be at peace with it and don't let doubts creep in. I did and it only served to cause me further stress. Enjoy your holiday!! 


 


 

User
Posted 05 Feb 2022 at 15:39
Thanks everyone again. We’re are really appreciative of all the comments. Feels like we’re still edging towards RP but it’s early days yet with lots more info and advice to come I’m sure.
User
Posted 05 Feb 2022 at 20:56
Many thanks for your message Music Man -( I couldn’t send a private message yet).
User
Posted 11 Feb 2022 at 16:36
Hello everyone. Just a quick update from last week. Hubbie has been talking to the team at UCLH all week, as well as a top consultant (friend of a friend) and a private consultation too.

He has many treatment options open to him (he is very lucky in that respect). The tumour needs to be treated but was quite close to being “Active Survellience”.

He narrowed treatment down to either RP or focal treatment (HIFU). After chatting to all the various consultants today, he thinks he’s going with HIFU.

It’s very him - something slightly experimental and “high tech sounding”! It’s a bit more risky I believe as it’s only been around a few years, slightly more recurrence etc. but quality of life is what is driving his decision, and he’s happy with that. He’ll worry about recurrence if/should it happen down the line.

If anyone on here has any knowledge of HIFU I’d be very grateful for any advice.

Thanks all for your wonderful advice and support. Will let you know how it goes later on.
User
Posted 11 Feb 2022 at 18:00

Hi Susie,


I have a good friend who had it some time ago, no problems with it and I believe he is sorted now!


I did enquire of it for myself but my psa and gleason is too high.


Look into it and every success!


Blessings


 


Ian

User
Posted 11 Feb 2022 at 19:58
Hi Susie,

HIFU is a niche treatment for suitable men that have not reached the stage where the more radical treatment of Prostatectomy or Radiotherapy of one type another is required. It is also used as a salvage treatment for failed Radiotherapy. HIFU can also be repeated (which is what I had - 2015 and 2021). It is most usually a day procedure that enables a man to have it and very shortly be able to walk away, although he is asked to be accompanied and not to drive for 24 hours due to the possible long term effects of the anesthetic. I found there was some initial pain which was less on my second treatment, as I took some of the provided pain killers. My catheter was removed after 8 days and with it the irritation it caused. Also, as soon as the catheter was removed urine frequency was back to normal with no leakage. It has not caused any side effects. (I had RT as primary treatment in 2008 and it led to ED, so I cannot say whether or not it would have been a factor if HIFU had been my primary treatment.)

I had my HIFU at UCLH where they are the leading exponents of Focal Therapy in the UK. The risk of a fistula forming is now far lower, the Professor who did my treatments had not had one in over 900 treatments she administered.

In short, the side effects are less with HIFU than for RT or Prostatectomy but the chances that you may need further treatment in due course, more Focal treatment or more radical treatment are generally thought to be more likely than having Prostatectomy or RT as primary treatment.





Barry
User
Posted 12 Feb 2022 at 07:20
Thank you guys - very reassuring. Will update in a few weeks with any news
User
Posted 12 Feb 2022 at 16:07

Just starting on the prostate cancer diagnosis, 69 years old, my PSA is 412, had an MRI scan & nuclear bone x-ray, waiting for the results.

User
Posted 12 Feb 2022 at 16:40

Originally Posted by: Online Community Member


Just starting on the prostate cancer diagnosis, 69 years old, my PSA is 412, had an MRI scan & nuclear bone x-ray, waiting for the results.



David,


Wishing that your results are favourable and that a treatment plan if formulated soonest.


This forum is really supportive and full of knowledgeable people.


 

User
Posted 12 Feb 2022 at 17:05

Hello David


It might be useful if you started your own thread so that postings about your treatment etc will be all together.


 


Ivan 


 

User
Posted 13 Feb 2022 at 08:33

Hi I was diagnosed in September 2016  at 70 with PSA 2.19 Gleason 3+4=7 with 5 cores out of 20 positive and had the choice of Robotic surgery or Brachytherapy and went for the Brachytherapy as i felt it less invasive option and possibly less side affects.


I am 5 years on with PSA 0.05 and signed off by Specialist in 2021.Click on my Avatar for my journey so far.


It was difficult to decide on what option to take at the time but i think it was the right decision for me. I don't think i am cured and take one yearly PSA test at a time and try to get on with life but i am more worried about catching Covid than the Prostate cancer.


Good luck John.

User
Posted 13 Feb 2022 at 16:51
Thank you john. Very similar diagnosis to my husband. Very difficult decision, but he seems happier now it’s made. I’m still a little on the fence……I’m still a “whip it out and hopefully cure it” kind of girl! I think of HIFU as a bit more of a “treatment” than a cure - but time will tell. Good luck.
User
Posted 13 Feb 2022 at 16:58
In reality, they are all 'treatment' rather than cure - about a third of men have recurrence after surgery. The benefit of something like HIFU is that the men tend to go into it with a realistic expectation so if it works, brilliant, but if it needs to be repeated, it's no big deal. Men who go for radical treatment may struggle much more when there is a recurrence because they hadn't anticipated it or the surgeon perhaps glossed over the risks ... or just emotionally, they really desperately wanted it to work.

Oncologists will tell you that there is no cure for cancer - all any of us can hope for is a very, very long remission.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 13 Feb 2022 at 17:28

This is giving me hope for my hubby, thank you xx

User
Posted 14 Feb 2022 at 08:16
Thanks Lyn. You’re absolutely right - he does expect more treatment down the line with HIFU and is OK with that (especially as the after effects aren’t quite as invasive).

He was genuinely shocked to hear that a RP has a recurrence rate even when tumour is localized.
User
Posted 16 Feb 2022 at 18:06

Susie if your considering more less invasive focal therapy look at IRE


I posted my experience on here so have a read. I go to Germany in two weeks for my first post operation MRI checkup


best wishes snd good luck 

User
Posted 17 Feb 2022 at 12:28
Thank you Paul, will look into that (although I think he’s not been offered it). He’s got consult with surgeon next week - still in two minds what to do!
User
Posted 17 Feb 2022 at 16:52

Hi Susie


its best to research yourself as well as take advise from your doctor. 
Sadly many doctors are not aware or want to explore other options other than what they have in their local hospital on the NHS. Good to have a range of discussions and evaluate outcomes and side effects before you make your final decision. Remember it’s your choice ! 

User
Posted 19 Feb 2022 at 15:33
It’s a difficult decision and as so many have said previously, it’s a personal choice whilst weighing up the pros and cons. My hubby goes in for surgery on 22nd March. We are keeping everything tightly crossed. X
User
Posted 19 Feb 2022 at 15:38

That’s great


Wishing you all the best 

User
Posted 25 Feb 2022 at 17:04
Evening all.

Quick update. Hubby has decided to go for RALRP after having final chats with HIFU and a surgeon today. A different HIFU consultant (from the last one he spoke to) said the tumour is close to being a bit too big to treat. That finally made his mind up for him.

He’s disappointed (as he really fancied the HIFU) but resigned to working on making a good recovery from RP. I’m still in the “whip it out and sort it” camp - so I’m feeling positive!

He’s also having a “robot assisted laparoscopic pelvic lymph node dissection” apparently. We’ve never heard of this. Is this common practice with an RP? I presume they do this to remove any chance of mets hiding in the lymph nodes?

Hope everyone is well.
Sue xx


User
Posted 25 Feb 2022 at 17:40

Hi Sue,


My husband had his RALP in December. He had lymph node dissection…they only took 14 nodes to try to reduce the chances of lymphoedema. Cancer had shown up in one node on the CT scan and PSMA pet scan so that’s why they were removed. I think it does happen where they take them if even no cancer….just in case of micro mets. 


Hope you’re husband recovers well from the op, so far it has all gone really well for Rob and much easier than we ever imagined. 


Elaine x

User
Posted 25 Feb 2022 at 17:57
Thanks Elaine. I’m still surprised they didn’t do PET scan or bone scan as common practice. Maybe it’s because his PSA is only 4.2?

So glad to hear that it went well for your husband and recovery is better than expected - that’s the news we need!
User
Posted 25 Feb 2022 at 18:28

They didn’t do the pet scan as standard practice. We paid for that after our second opinion didn’t agree about the bone mets so wanted it confirmed.


He was sent for the bone scan though as a slight something showed up on his MRI. I think some seem to do the bone scan as part of the diagnostic process but like you say maybe when PSA is higher x

User
Posted 26 Feb 2022 at 00:43
Some hospitals do a bone scan for all diagnosed men while others only do it if they have reason to suspect mets.

Hardly any hospitals offer PET scan to all diagnosed men - they are expensive, PET machines are under great demand for more urgent situations, tracers can be difficult to produce and have a very short shelf life and, in terms of prostate cancer, seem far more effective at picking up recurrence at very low PSA levels than at initial diagnosis.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 26 Feb 2022 at 00:52

Originally Posted by: Online Community Member
Evening all.

He’s also having a “robot assisted laparoscopic pelvic lymph node dissection” apparently. We’ve never heard of this. Is this common practice with an RP? I presume they do this to remove any chance of mets hiding in the lymph nodes?


Not really - if the cancer has metastasised in the lymphatic system, removing a few pelvic lymph nodes isn't going to solve it. 


Some surgeons remove a couple of lymph nodes in every RP to check whether there is any sign of cancer - if so, adjuvant RT might be offered rather than waiting for the PSA to rise. Other surgeons take a number of nodes routinely but this is becoming less common because of the increased risk of lymphodema later. And some surgeons will only take nodes where the diagnosis is T3 and nodes looked suspect on the scans. 

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