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Focal Therapy and night time trips to the bathroom

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User
Posted 23 Apr 2021 at 11:51

Hi I have been offered and want to accept focal therapy. my only concern is that  I have the nightime trips to the bathroom which aren't solved by this.  Are there other  solutions?

User
Posted 25 Apr 2021 at 01:57

 I did read the paper in your link and others before it.

If you consider men with early stage PCa, most are unlikely to die due to it within 5-8 years regardless of what treatment they have or indeed no treatment. But in the longer term many of those treated would have had their cancer knocked back if not eradicated so it would be interesting to make these comparisons in 15-20 years time to be able to make more meaningful comparisons.   

I would just emphasize a few things which among all the plethora of data in reports and trials may not be taken on board as regards Focal Therapy. It is only used to treat what is/are considered to be significant tumour(s) within the Prostate leaving any insignificant ones untouched. In time, one of these 'insignificant' tumours may become 'significant' or a new tumour may start in another part of the Prostate. Certainly in the case of HIFU, the procedure can be repeated if the tumour is accessible and calcification is not an obstacle. Where the cancer is too great to be dealt with by further HIFU, a Prostatectomy or Radio Therapy can be done. (I am not sure about whether salvage Prostatectomy or RT can be given after Cryotherapy but this would be something for anybody contemplating this procedure to ascertain).

Focal therapy is generally given only to men with early stage PCa where the cancer is Prostate contained, the volume low and the ablation treatment considered appropriate. The therapy can also be given as salvage treatment for failed RT.

There are other forms of Focal Therapy, some of which are only available abroad or in trials but the main ones in the UK are HIFU or Cryotherapy, where side effects are milder than Surgery or Radiation .

Edited by member 25 Apr 2021 at 22:11  | Reason: correction

Barry
User
Posted 25 Apr 2021 at 11:05
Focal therapy may be as good as radical treatment in terms of the patient still being alive in 8 years - the fact is that having no treatment is just as good at the 8 year point if you are a T1 / T2 N0M0. But in that 8 years, recurrence and salvage treatment is much higher for those in the focal therapy group.

From my observations on here, it seems to me that treatments like HIFU, FLA and cryotherapy are a good option for a man who would otherwise be considering active surveillance or who desperately wants to avoid radical treatment and is emotionally robust. The problem seems to be if a man goes into focal treatment ill prepared for the possibility of recurrence and is distressed when the treatment fails or needs to be repeated. For those paying privately, you also have to consider how many times you could afford to have the focal therapy - clearly, if it is on the NHS that isn't an issue.

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

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User
Posted 23 Apr 2021 at 22:20
With your T3A diagnosis EBRT may be an alternative. However, it is very likely with RT that frequent visits to urinate may be necessary. Did you not discuss treatment options with your consultant when you were given your diagnosis? What form of Focal Therapy were you offered? When I had HIFU I had a catheter in place for a week which obviated the need to keep visiting the bathroom. However, when I had RT, I had to get up up to 8 times a night for a few days until visits gradually reduced to my pre RT treatment frequency of once or twice a night maybe a couple or so months after RT ended.
Barry
User
Posted 23 Apr 2021 at 22:38
i did discuss options - offered RP or EBRT and told to make my own decision. Each consultant gave a good description of their practice but there was no one to discuss the overview. Its complex I am waiting for a prostatectomy but I have very recently been offered focal therapy. Because of the location of my cancer I have been offered cryotherapy.

My night time trips to the loo are, I'm told a result of a large prostate and not the cancer. I'm reluctant to have EBRT but I am having a PET scan to check it out. after a very slow start its all happening very quickly now.

you will understand why I am keen to explore FT. recent papers state that the 8 year outcomes compare with RP.

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

User
Posted 23 Apr 2021 at 23:55
As you are most probably aware, Focal Therapy is not widely used in the UK and Cryotherapy is an even lesser used focal type. In my 12 or so years on this forum, I think the number of men that have had Cryotherapy, certainly as a primary treatment, could be counted on one hand, so there is not a lot of feedback here on the procedure and it is not one I have researched extensively. Long term success of Focal Therapies has still to be assessed. However, Cryotherapy is more widely given in the USA so more info from that country. Always a good idea to research all your options. I thought it more likely that you were considering Cryotherapy with your enlarged Prostate. Are you able to have Cryotherapy on the NHS or would this have to be a private/Insurance procedure? A Prostatectomy removing your enlarged Prostate should drastically reduce your visits to the bathroom if you go this route.
Barry
User
Posted 24 Apr 2021 at 14:29
Thank you for your help it great to get something direct. I attached a reference to a paper you may find interesting about the survival rates of focal therapy,
User
Posted 25 Apr 2021 at 01:57

 I did read the paper in your link and others before it.

If you consider men with early stage PCa, most are unlikely to die due to it within 5-8 years regardless of what treatment they have or indeed no treatment. But in the longer term many of those treated would have had their cancer knocked back if not eradicated so it would be interesting to make these comparisons in 15-20 years time to be able to make more meaningful comparisons.   

I would just emphasize a few things which among all the plethora of data in reports and trials may not be taken on board as regards Focal Therapy. It is only used to treat what is/are considered to be significant tumour(s) within the Prostate leaving any insignificant ones untouched. In time, one of these 'insignificant' tumours may become 'significant' or a new tumour may start in another part of the Prostate. Certainly in the case of HIFU, the procedure can be repeated if the tumour is accessible and calcification is not an obstacle. Where the cancer is too great to be dealt with by further HIFU, a Prostatectomy or Radio Therapy can be done. (I am not sure about whether salvage Prostatectomy or RT can be given after Cryotherapy but this would be something for anybody contemplating this procedure to ascertain).

Focal therapy is generally given only to men with early stage PCa where the cancer is Prostate contained, the volume low and the ablation treatment considered appropriate. The therapy can also be given as salvage treatment for failed RT.

There are other forms of Focal Therapy, some of which are only available abroad or in trials but the main ones in the UK are HIFU or Cryotherapy, where side effects are milder than Surgery or Radiation .

Edited by member 25 Apr 2021 at 22:11  | Reason: correction

Barry
User
Posted 25 Apr 2021 at 11:05
Focal therapy may be as good as radical treatment in terms of the patient still being alive in 8 years - the fact is that having no treatment is just as good at the 8 year point if you are a T1 / T2 N0M0. But in that 8 years, recurrence and salvage treatment is much higher for those in the focal therapy group.

From my observations on here, it seems to me that treatments like HIFU, FLA and cryotherapy are a good option for a man who would otherwise be considering active surveillance or who desperately wants to avoid radical treatment and is emotionally robust. The problem seems to be if a man goes into focal treatment ill prepared for the possibility of recurrence and is distressed when the treatment fails or needs to be repeated. For those paying privately, you also have to consider how many times you could afford to have the focal therapy - clearly, if it is on the NHS that isn't an issue.

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

User
Posted 25 Apr 2021 at 20:06

You sound very experienced. I'm finding very difficult to make the decision of which way to go when there is no one to talk to about the overview. Each specialist provides information about their specialism only. 

User
Posted 25 Apr 2021 at 20:38

Originally Posted by: Online Community Member
when I had RT, I had to get up up to 8 times a night for a few days until visits gradually reduced to my pre RT treatment frequency of once or twice a night maybe a couple or so months after RT ended.

I too had to pee about every 45m all night long towards the end of my RT, but the resulting tiredness was greatly alleviated by buying a plastic urine bottle (Amazon) so I didn't have to get out of bed. The symptoms peaked about 10 days after the end of RT and quickly subsided thereafter. 

Chris

 

User
Posted 25 Apr 2021 at 22:55

Originally Posted by: Online Community Member

You sound very experienced. I'm finding very difficult to make the decision of which way to go when there is no one to talk to about the overview. Each specialist provides information about their specialism only. 

 

If you ring the PCUK nurses at the number on top of this page, they will be able to put you in touch with one or two men who have been in your situation and now volunteer to act as peer mentors. 

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

 
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