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TULSA

User
Posted 13 Jun 2020 at 14:45

Hi

I'm new to the forum having recently been diagnosed - 3 cores ("very small") on the left side, largest one 9mm (70% cancerous), T2b. Gleason score of 3+4, although some perineural invasion, so active surveillance is not recommended. 

I've been offered RP and EBRT, the side effects of both do not leave me with a warm cuddly feeling - although I'd admit they are probably better than the alternative.    I'm also a freelancer, so no work, no pay.

Anyone on the forum had TULSA?  I'm interested to hear your experiences.  I've read the posts on here and on the American forum, which together with their referrals have been informative.  I appreciate that opinion is divided on its efficacy, but I'd really like to hear from anyone who has actually had it, or seriously considered it but rejected it.

Thanks

Mark

User
Posted 13 Jun 2020 at 20:17

Mark 

A search of the site only seems to come up with the two conversations that discussed the procedure.

Thanks Chris

User
User
Posted 15 Jun 2020 at 21:07

Originally Posted by: Online Community Member

Hi Lyn

I guess everyone is entitled to an opinion, although "foolhardy" seems slightly emotional.  My opinion differs from your own, but neither of us having had the procedure I was hoping to hear from someone who had.  I'm also guessing that all procedures didn't start out with established curative data - perhaps there's room for different perspectives.

Mark

I can't think of an active member here that has had it - you might find someone on the YANA Now website as that is more international. 

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

User
Posted 15 Jun 2020 at 21:55

There are 371 posts here on TULSA- PRO some of the men having had the procedure on a large mainly American forum where I am a member (Inspire Us Too). I don't know how far you can go without being a member but Doctors names and treatment centres are named.
Hopefully this link will get you to the subject. https://www.inspire.com/search/?group_id=200125&sec=all&query=TULSA-PRO&_=&dd_query=

NB Having tried the link it does not show all the posts but some interesting posts.  A research on that forum also shows also shows a lot on HIFU

 

Edited by member 15 Jun 2020 at 22:04  | Reason: to highlight link

Barry
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User
Posted 13 Jun 2020 at 20:17

Mark 

A search of the site only seems to come up with the two conversations that discussed the procedure.

Thanks Chris

User
Posted 13 Jun 2020 at 23:30

I took the opportunity of asking about Tulsa Pro during my check up appointment with UCLH. I was rather surprised to be told they had not tried it as Professor M E investigates various kinds of focal therapy. If this form of ablation is available anywhere in the UK now Professor M E will know where, so you could contact his secretary. Alternatively, you could contact the manufacturer.

This is a little more on this thread with links and with Andrew casting aspersions. https://community.prostatecanceruk.org/posts/t22926-TULSA--targeted-ultrasound--promising-treatment.

 

 

Edited by member 13 Jun 2020 at 23:31  | Reason: to highlight link

Barry
User
Posted 14 Jun 2020 at 00:41
Mark, there may be men with a tiny T1a G6 cancer who, faced with a choice of focal treatment or active surveillance, decide to give focal treatment a try. HIFU, TULSA-pro, green light therapy, cryotherapy, focal laser ablation ... these are all emerging treatments which look exciting for low risk cases but come with a lack of data and / or with data that suggests they are not yet successful enough to be considered curative. My personal view is that it is to society's benefit that there are men who are willing to give these a go and perhaps contribute to better treatments in the future even if it doesn't work out great for them.

Unfortunately for you, with a T2b G7 and PNI you are not in the low risk category so pursuing anything other than radical treatment would be foolhardy.

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

User
User
Posted 15 Jun 2020 at 20:26

Thanks Barry.

I'm looking at Finland, it has a bit if a track record and good reports.

User
Posted 15 Jun 2020 at 20:46

Hi Lyn

I guess everyone is entitled to an opinion, although "foolhardy" seems slightly emotional.  My opinion differs from your own, but neither of us having had the procedure I was hoping to hear from someone who had.  I'm also guessing that all procedures didn't start out with established curative data - perhaps there's room for different perspectives.

 

Mark

User
Posted 15 Jun 2020 at 20:53
You're pretty young, Mark, so if you're regarding this as a tactic to delay radical treatment that's probably reasonable enough. With your grade of cancer, though, it seems implausible that it'll be an effective primary treatment long term. It seems only suited to small very localised tumours, as I understand it.

Best wishes,

Chris

User
Posted 15 Jun 2020 at 21:07

Originally Posted by: Online Community Member

Hi Lyn

I guess everyone is entitled to an opinion, although "foolhardy" seems slightly emotional.  My opinion differs from your own, but neither of us having had the procedure I was hoping to hear from someone who had.  I'm also guessing that all procedures didn't start out with established curative data - perhaps there's room for different perspectives.

Mark

I can't think of an active member here that has had it - you might find someone on the YANA Now website as that is more international. 

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

User
Posted 15 Jun 2020 at 21:48

Hi Chris

As a plan B the delaying tactic has merit, although it's not my primary aim.

The problem I'm finding is the complexity of the diagnosis, and diversity of individual opinion.  I'm trying not to only hear what I want to hear, and look to my professional training to avoid anecdote alone, and base decisions on sound science.  Your comment on small and localised is interesting - and begs the questions, what is small in this context?  By localised I take it you mean gland contained?

I've read on Inspire:

 the Center(s) of Excellence teaching Surgeons (Klotz University of Toronto, Eggener University of Chicgo, Pavlovich Johns Hopkins, others) and Interventional Teaching Radiologists (Raman - UCLA) are telling us that men with Gleason 7 can be treated with Ultrasound and other modalities rather than Surgery/Radiation/Radiation+Chemical Castration. It would be foolish to ignore this very powerful message from the teaching leaders at the some of the best and major Prostate Cancer managment institutions in the world.

As a G7 that seems to conflict with your view - and the above does seem an unpopular opinion on these forums - but I wondered if you have data that supports your understanding that you can point me to?  As I say,  I'm trying not just to hear what I want to hear.

 

Mark

 

 

User
Posted 15 Jun 2020 at 21:55

There are 371 posts here on TULSA- PRO some of the men having had the procedure on a large mainly American forum where I am a member (Inspire Us Too). I don't know how far you can go without being a member but Doctors names and treatment centres are named.
Hopefully this link will get you to the subject. https://www.inspire.com/search/?group_id=200125&sec=all&query=TULSA-PRO&_=&dd_query=

NB Having tried the link it does not show all the posts but some interesting posts.  A research on that forum also shows also shows a lot on HIFU

 

Edited by member 15 Jun 2020 at 22:04  | Reason: to highlight link

Barry
 
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