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Newly diagnosed so scared

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User
Posted 17 Apr 2021 at 10:39

Any advise appreciated it’s such a Scary time, my husband a very fit man of 58 had a   Routine booodtest at GP surgery last February was advised he had a raised PSA  of 4.2 , he was sent to local hospital for a MRI and nothing unusual was detected in the physical examination , he was then told the MRI hadn’t detected anything significant but was told that if there was a cancer there it was likely to be so slow growing it would take decades to cause him any issue ( I wasn’t with him as it was COVID and they were only allowing patient in )

so they put him on active surveillance, 6 months later PSA was 5.3 they again said one more PSA before biopsy , next PSA in February 2021 6.49 , biopsy arranged March , just had results 3+4 and some 4+3 on Gleason graded as 3 intermediate risk , bone scan clear

we have a meeting  next week to discuss his pathway it has been suggested in the follow up letter assisted robotics surgery And or radiotherapy .

my question is he would ideally want to go Down the focal therapy route and I believe at this moment on the information we have he would qualify, will the NHS offer this ? Has a one here ever had this happen , I understand it’s not available generally but is it a possibility ?

until last year I had never even heard of a PSA test so am having to learn  very quickly and get our heads around a life changing decision in  what procedure would give him the best quality of life , these forums are invaluable and I thank everyone of you for putting your stories out there .

 

 

 

 

 

 

User
Posted 17 Apr 2021 at 13:56

I don't believe that the NHS would provide HIFU as the primary treatment for your husbands situation.

I was diagnosed in December with very much the same diagnosis as your husband and was offered RALP or Hormone treatment and Radiotherapy.  I opted for RALP which took place on the 1st April and am doing fine at the moment (active and pretty much continent already).  The crunch will come when I speak to my surgeon on the 18th May with the biopsy results plus latest PSA test (hopefully ~0). (Whether or not further treatment may be required)

I was told that both options have more or less equivalent outcomes in the longer term.

I would advise downloading the various guides from this site or you can order the complete toolkit and have a good read.  Then when your husband speaks to the surgeon and the oncologist in turn he can make his best judgement.  I am 68 in a week's time and so a little older with perhaps different priorities.

 

Best of luck, you're not alone

 

User
Posted 17 Apr 2021 at 15:27

Dessy, 

Fully appreciate how much of a shock this can be and it takes a while to process it all and get to terms. Your husband has been diagnosed early and that's great news. I was diagnosed in 2017 and had an open prostatectomy in March last year. Feel free to click on my profile but suffice to say life for all intents and purposes is back to normal

Good luck on your journey together

User
Posted 17 Apr 2021 at 14:01
Focal Therapy is not frequently administered for PCa in the UK, particularly as a primary treatment. It may be considered to be more of a nische treatment for suitable men where it may do the job for them or defer surgery or RT both of which can have more severe side effects. In the UK it usually consists of HIFU, or Cryotherapy. I had HIFU for failed RT. It did reduce my PSA and the actual tumour but after 5+ years, consideration is being given to administering HIFU again, which I would far rather undergo than have HT again. (I can't be given further radiation to the Prostate and have been told that difficult surgery now after the RT I had would almost certainly make me permanently incontinent).

I had my HIFU, at UCLH in London which is the leading centre for this treatment in the UK and they also do Cryotherapy. I would seek an opinion from them, although hubby may have to do this through his GP, particularly if he wants the focal therapy on the NHS If they are too far away for your husband to be treated there, UCLH should be able to direct to a nearer hospital as UCLH have been instrumental in teaching the procedure to others. Although HIFU was at one time only done privately outside trials, I believe it can now be done at a few centres as an NHS procedure. I don't know if the same applies to Cryotherapy.

If you wish, I will dig out my thread on my experience of HIFU but as mine was for failed RT rather than as a primary treatment, this would not be truly like for like.

Barry
User
Posted 17 Apr 2021 at 19:25

Here you are, found it more easily by Google which doesn't say much for the search facility on this forum!. It's rather long, mainly due to the appreciated good wishes but you may glean a few things from it.

Best wishes whichever treatment hubby opts for and remember men can respond differently to any treatment, even if they have similar diagnosis. Also, although the incidence of PCa increases with age, for many it does not develop sufficiently to be a cause of death. https://community.prostatecanceruk.org/posts/t10960-HIFU--my-experience

 

Barry
User
Posted 27 Apr 2021 at 16:53

I was diagnosed with the exact Gleason score your husband has been given in May last year during lockdown. I opted for RALP which was completed in September. My life is back to normal and have had two PSA blood tests since both which were 0.05. The surgery is a doddle so don’t let it put him off having the RALP. Best wishes to you both. 

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User
Posted 17 Apr 2021 at 13:56

I don't believe that the NHS would provide HIFU as the primary treatment for your husbands situation.

I was diagnosed in December with very much the same diagnosis as your husband and was offered RALP or Hormone treatment and Radiotherapy.  I opted for RALP which took place on the 1st April and am doing fine at the moment (active and pretty much continent already).  The crunch will come when I speak to my surgeon on the 18th May with the biopsy results plus latest PSA test (hopefully ~0). (Whether or not further treatment may be required)

I was told that both options have more or less equivalent outcomes in the longer term.

I would advise downloading the various guides from this site or you can order the complete toolkit and have a good read.  Then when your husband speaks to the surgeon and the oncologist in turn he can make his best judgement.  I am 68 in a week's time and so a little older with perhaps different priorities.

 

Best of luck, you're not alone

 

User
Posted 17 Apr 2021 at 14:01
Focal Therapy is not frequently administered for PCa in the UK, particularly as a primary treatment. It may be considered to be more of a nische treatment for suitable men where it may do the job for them or defer surgery or RT both of which can have more severe side effects. In the UK it usually consists of HIFU, or Cryotherapy. I had HIFU for failed RT. It did reduce my PSA and the actual tumour but after 5+ years, consideration is being given to administering HIFU again, which I would far rather undergo than have HT again. (I can't be given further radiation to the Prostate and have been told that difficult surgery now after the RT I had would almost certainly make me permanently incontinent).

I had my HIFU, at UCLH in London which is the leading centre for this treatment in the UK and they also do Cryotherapy. I would seek an opinion from them, although hubby may have to do this through his GP, particularly if he wants the focal therapy on the NHS If they are too far away for your husband to be treated there, UCLH should be able to direct to a nearer hospital as UCLH have been instrumental in teaching the procedure to others. Although HIFU was at one time only done privately outside trials, I believe it can now be done at a few centres as an NHS procedure. I don't know if the same applies to Cryotherapy.

If you wish, I will dig out my thread on my experience of HIFU but as mine was for failed RT rather than as a primary treatment, this would not be truly like for like.

Barry
User
Posted 17 Apr 2021 at 14:53
I would be very grateful if you would dig out the thread on your experience of HIFU , so ,much information to get our heads around but we know how important it is to be aware of everything out there .
User
Posted 17 Apr 2021 at 15:27

Dessy, 

Fully appreciate how much of a shock this can be and it takes a while to process it all and get to terms. Your husband has been diagnosed early and that's great news. I was diagnosed in 2017 and had an open prostatectomy in March last year. Feel free to click on my profile but suffice to say life for all intents and purposes is back to normal

Good luck on your journey together

User
Posted 17 Apr 2021 at 16:18
Try not to get too stressed about it. I know from personal experience what a shock a prostate cancer diagnosis coming out of the blue can be, but localised prostate cancer is an eminently treatable condition, and although treatment obviously isn't great, it's not too awful either, and your husband will go on to live an entirely normal life after he's been treated.

I'm sure you know that there are two main treatment options: surgery and radiotherapy. They have pretty much the same success rates (both are good), so it's really a matter of which set of side-effects you consider less bad. If you've not already done so, download the information pack from this site which gives lots of information about each type of treatment and what to expect.

Best wishes,

Chris

User
Posted 17 Apr 2021 at 19:25

Here you are, found it more easily by Google which doesn't say much for the search facility on this forum!. It's rather long, mainly due to the appreciated good wishes but you may glean a few things from it.

Best wishes whichever treatment hubby opts for and remember men can respond differently to any treatment, even if they have similar diagnosis. Also, although the incidence of PCa increases with age, for many it does not develop sufficiently to be a cause of death. https://community.prostatecanceruk.org/posts/t10960-HIFU--my-experience

 

Barry
User
Posted 21 Apr 2021 at 08:03

Thankyou so much for that Barry it was an interesting read ... appointment now  had  and they have agreed to referral to specialist for HIFU focal therapy , will now how to wait to see if specialist thinks his case is suitable if not it will be removal off prostate  so more waiting..... thank you 

 

Edited by member 21 Apr 2021 at 15:04  | Reason: Not specified

User
Posted 27 Apr 2021 at 16:53

I was diagnosed with the exact Gleason score your husband has been given in May last year during lockdown. I opted for RALP which was completed in September. My life is back to normal and have had two PSA blood tests since both which were 0.05. The surgery is a doddle so don’t let it put him off having the RALP. Best wishes to you both. 

User
Posted 04 May 2021 at 10:24
hi there are ways of getting HIFU on the NHS usually through a trial.
User
Posted 05 May 2021 at 00:35

HIFU as a salvage treatment for failed RT for suitable men can be administered on the NHS. However, it is much more difficult to find anybody doing it as a Primary Treatment as a procedure on the NHS. This is a link to the best known practitioners in the UK, so it might be worth contacting one or more to find out whether they will do HIFU as a primary treatment on the NHS and if not if they know where it could be available. You will note the comment that the NHS do not sufficiently reimburse the cost of HIFU to support it. However, if you do find somebody to administer it even in a trial on the NHS, please post details as things change and it may be of interest to others. https://prostatematters.co.uk/prostate-cancer/where-to-access-hifu-treatment/

 

Edited by member 05 May 2021 at 00:38  | Reason: to highlight link

Barry
User
Posted 08 May 2021 at 09:38
Hi Dessy,

I'm not an expert but you may find the attached useful.

https://www.prost8.org.uk/best-news-in-20-years-for-prostate-cancer-treatment/

Paul is happy to talk with you.

User
Posted 06 Jun 2021 at 14:49

Update on my husband situation is .... he was referred for HIFU by our local NHS hospital but after a private consultation (I booked it  as it was going to be 2 weeks before he was even going being discussed at an MDT meeting  and I was totally stressed out )but  within 10 minutes of the meeting it was clear it was not an option as all 4 quarters of the prostate had some level of cancer 2 areas being 3+3 1 being 3+4 and 1 being 4+3 and unclear as MRI had been done so soon after biopsy what other tissue is involved hopefully none !
therefore HIFU was not a suitable treatment , so went back to hospital and referred for RALP which takes place next week , radiation therapy was not really discussed they felt in his case RALP would be the best way forward .... so that’s where we are at , it wasn’t what we wanted to hear but we had to trust the experts , I pray it all goes smoothly next week .

User
Posted 06 Jun 2021 at 15:57
Sorry about that but sounds like tumours too great/widespread for HIFI so best go for a more intensive procedure, so hope that goes well.
Barry
User
Posted 07 Jun 2021 at 10:14

Fingers crossed all goes well. Just make sure he takes it easy for a while afterwards. Also have a look at some of the tips post surgery. I really wish I'd but the night catheter stand in a bucket as others have suggested. One of the taps leaked one night !!!

User
Posted 07 Jun 2021 at 10:23
Good to hear that there's a definite plan in place.

All the best,

Chris

User
Posted 07 Jun 2021 at 10:47

Thanks guys , my anxiety is pretty high at the moment can’t wait for  it to be over now seems such a journey of ups and  downs , as he’s an extremely fit man I’m hoping he will have a good recovery , I shall be making sure he doesn’t overdo it as he is always on the go so will come pretty hard to him ... prior to this he has never been ill Or in hospital in his 59 years so will be a very strange time....

User
Posted 07 Jun 2021 at 13:01
You can read my account of my virtually pain-free prostatectomy, three years ago if you click on my name tag above this post..

I have been cancer-free since then.

Best of luck to you both.

Cheers, John

User
Posted 07 Jun 2021 at 14:30

Hi John have just read that Thankyou really good to know about others journey through this , and it sounds like you had a long journey ! So glad to hear you are doing so well

I have never heard of a retzius sparing robotic prostectomy , how different is it to nerve sparing I honestly thought I had done my homework but that was never a word I came across or was mentioned even with the Professor we met privately in London , I can only assume my husband wasnt suitable , as we had clearly said at all consultations the most important part of the procedure would be that nerve sparing was paramount if at all possible .

well we are in the surgeons hands now on Thursday ......

User
Posted 07 Jun 2021 at 16:48
https://www.santishealth.org/robotic-radical-prostatectomy/?gclid=Cj0KCQjwh_eFBhDZARIsALHjIKeXbyd0XjTanGUB0VPolMrwP3TjjJhR1dJl380HdEBqRtZR8YnhjZwaAvFmEALw_wcB
User
Posted 07 Jun 2021 at 20:33
There are only two or three hospitals offering retzius sparing RP on the NHS, and only 4 or 5 trained surgeons in the UK. Also, if you had impressed on the various medics that nerve sparing was of paramount importance to you because or erectile function, you may have ruled yourself out of retzius sparing - while the data is excellent for recovering bladder control, retzius sparing at the moment is no better than other forms of nerve-sparing RP for regaining erectile function.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 07 Jun 2021 at 21:07

Thankyou , that has made me feel better about not knowing about retzius as yes it was more about nerve saving for erectile dysfunction, but I am learning everyday about this cancer and the treatments available, I shall keep educating myself as my aim when my husband has been treated is to bring awareness to others as until this happened I had no idea what a PSA Test was I had never heard of it and what it might mean in regard to prostate cancer  , I have since found out that in my group of girlfriends all around 55 years old only 2  of 9 of them had heard of a PSA test an it’s relation to prostate cancer so I wasn’t  alone , they are now encouraging their husbands to have a test ! 

 
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