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User
Posted 15 Apr 2021 at 16:38

Originally Posted by: Online Community Member
Thanks for that Lyn - what are your thoughts on Atlanta?

 

It's a 30/30/30 risk isn't it.

- 33% chance that you will have RP with all the associated certain and potential side effects but unlikely to be curative

- 33% chance that you will have RT with all the associated certain & potential side effects but unlikely to be curative 

- 33% chance of focal therapy with fewer side effects but very unlikely to be curative

The downside of your proposed treatment plan is that there is no chance at all of it being curative but you can be sure of avoiding many of the side effects that most impact on quality of life - incontinence, for example. 

 

Whichever way you go, you seem to be almost certain of getting targeted RT to the known mets. Your call, and not an easy choice but I think my OH would want to avoid as many side effects as possible. 

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

User
Posted 20 Apr 2021 at 14:24
Lyn - will RT target the prostate or be limited to the mets? I have a telephone consultation with ATLANTA and would like to understand beforehand..

Anyone have any thoughts on apricot kernels??? Last week the oncologist said he had no issue with people taking "natural" remedies at the same time as conventional treatment.

User
Posted 20 Apr 2021 at 17:08

There are three arms to the ATLANTA trial the control arm which is Standard of Care only and two Intervention arms

Intervention arm 1: Focal therapy to the primary prostate tumour 

Intervention arm 2: Either RP or curative dose RT. The choice depends on which they believe would be more successful and also your preference for the potential side effects the different treatments pose. 

 

If randomised to either of the intervention arms then you would also be offered SABR to the metastases you have.

 

I was randomised to Intervention arm 2 and awaiting the MDT meeting following a recent MRI and PSMA PET scan 

User
Posted 20 Apr 2021 at 18:30

Originally Posted by: Online Community Member

Anyone have any thoughts on apricot kernels??? Last week the oncologist said he had no issue with people taking "natural" remedies at the same time as conventional treatment.


If you like apricots, go for it, but there is no reliable data to support the idea that any dietary supplements either help or hinder an existing case of prostate cancer (or any other form of cancer).

Best wishes,

Chris

 

User
Posted 20 Apr 2021 at 20:49

Hi,  I haven't heard of Atlanta before but 2 of the cases are what I'd have dreamt of having if my case had been T4.

I'd have gone for RP with RT to the mets as my first choice.  RT to the prostate then RT to the mets as second.   I wouldn't want HIFU to the prostate with a high grade PCa although I could perhaps be persuaded.   Don't imagine I have any medical knowledge to support my choices though, it's intuition based and intuition can be wrong.

My theory is that getting rid of the prostate is removing the big generator.   If the minors can be dealt with they'll take longer to cause problems. Presumably you'll still get hormones.   You never know how it will work out but that's my personal theory.

I guess you've seen this description of Atlanta, I think it answers some questions you asked though.

http://imperialprostate.org.uk/atlanta/

As others have said the hospital seems to be looking after you well and I can understand them being reluctant.   I would have thought they could be supportive as it sounds a significant trial and lightens their load. 

It's a gamble going on a trial in that it goes out of your hands and into the realms of chance.  It's an interesting thought well worth thinking about in my opinion.

I wish you all the best, Peter

User
Posted 20 Apr 2021 at 21:28
Many thanks Peter - I "enjoyed" reading your blog. I agree with your theory but I don't want surgery. I had looked at HFTU when originally diagnosed but that treatment is restricted to "in-capsule" prostates. Of course, due to randomisation there is no indication of what one may be allocated but it seems to me, perhaps wrongly, that SOC is what I have been offered, and intervention arm 2 seems to be very similar. Cheers.
User
Posted 20 Apr 2021 at 21:45

Originally Posted by: Online Community Member
Many thanks Peter - I "enjoyed" reading your blog. I agree with your theory but I don't want surgery. I had looked at HFTU when originally diagnosed but that treatment is restricted to "in-capsule" prostates. Of course, due to randomisation there is no indication of what one may be allocated but it seems to me, perhaps wrongly, that SOC is what I have been offered, and intervention arm 2 seems to be very similar. Cheers.

 

I think the difference is that SOC would be Chemo and ADT and not normally give the treatment to the mets that you seem to have been offered. What you don’t seem to have on offer is any radical treatment of the primary that the ATLANTA trial does offer. If randomised to Intervention arm 2 you would have the choice between RP or RT so would not have to have an operation. You are of course also able to stop being part of a trial at anytime.

User
Posted 23 Apr 2021 at 13:58
I started on enzalutamide today; I will keep people posted as when side effects are felt. I have not been contacted by ATLANTA so may email them to get a coupe of clarifications. Carlisle is in a bit of upheaval at the moment due to Newcastle recently taking over, to the extent that a second oncologist phoned me unaware that I had met his colleague last week.
User
Posted 24 Apr 2021 at 10:12

It always seems odd when the North Lakes are classed as North East. In reality Carlisle is closer to Newcastle than Preston or Manchester. I noticed when I had my op South Lakes were referred to Blackburn for the op and we were referred to Preston.  I was offered robotic at Blackburn but didn't want the delay as the Preston surgeon gave me a quick assessment then op date, or my wife driving there in mid December.

User
Posted 14 May 2021 at 11:09

I was notified of CT scan appointment for May 26. What are personal experiences of others? My oncologist said it was to confirm screening - is it possible that it will identify other problems? Apologies - I just searched this web site and found the answer

Edited by member 30 Jun 2021 at 12:09  | Reason: Not specified

User
Posted 14 May 2021 at 11:37

Originally Posted by: Online Community Member
I was notified of CT scan appointment for May 26. What are personal experiences of others? My oncologist said it was to confirm screening - is it possible that it will identify other problems?

It's pretty common for these cancer scans to show up other issues: think of it as a "body MOT". When I had my scans for prostate cancer, the scan also found an unrelated kidney tumour AND an aneurysm that I apparently could have dropped dead from at any moment. All three now sorted, thankfully. 

Chris

 

User
Posted 21 May 2021 at 17:18
CT scan postponed until June 3. Went today for second month supply of Enza. Result of blood test done on Monday - PSA at 0.33 and liver and kidney functions within the range. Lowering of red cell count to 4.3 from 4.5 and HCT at 0.381 from o0.395. Neiltrophis from 4.5 to 2.7.

I think that is positive?

User
Posted 08 Jun 2021 at 11:06
Yesterday my oncologist phoned with the results of the CT scan carried out last Friday. I am happy to report that no spread to lymphs, and confirmation that spread limited to the three mets identified in the bone scan. She was happy that PSA had reduced to 0.33. The next meeting I have with her or her colleague will be face-to face in 3 months to talk about the planned radiation treatment scheduled for later in the year.
User
Posted 21 Jun 2021 at 11:06

After 2 months of "up front" Enzalutamide and 3 months of Zolodox.

No adverse side effects.

I'm happy to report PSA down to 0.19 (20/1/21 = 64.7, 18/5/21 = 0.33) and first testosterone measure <0.5 (normal range 7 - 26).

All other blood indicators in normal range except red cell (4.11 v. 4.5 to 6.5), estimated GFR (69 v 90 to 120 but compares to 61 0n 7/1/19).

Can I expect PSA to go down further (next blood test 15 July)?

Oncologist appointment early September to discuss local radio therapy (36 gy in 6 factions). Does anyone know what that means?

So all systems go for Spanish holiday July 21.

Plus I bought a dog - walking about 30 km a week.

Edited by member 21 Jun 2021 at 11:07  | Reason: Not specified

User
Posted 21 Jun 2021 at 15:38

Hi Cayambe,

PSA looks good. I think mine dropped to 0.8 from 24 in the first three months and went on to become <0.1. I don't know if yours will keep dropping it's looking like it is levelling out, but I would say it is good.  

36 Grays in 6 Fractions. Well the total dose they intend giving you is 36 Grays. I can't remember the exact definition of a Gray, but it is just a unit of radioactivity. More interesting is how much they are giving you. I think in the old days they used to give about 80gy then it went down to about 50gy and it looks like they are trying to reduce it further. (they can do this because it is better targeted, in the past half of those Grays were missing the cancer and damaging other organs instead).

The 6 Fractions just means you will have 6 treatments and each will be 6 Grays each. Quite interesting because in the past they only gave between 2 and 3 Grays at a time. Giving fewer more intense doses is a topic of debate, it is certainly more convenient to only have to go to hospital 6 times rather than 20.   

Dave

User
Posted 21 Jun 2021 at 16:24

Thanks for that. Do you know if they will target the prostate or that and the three mets? Side effects? I suspect if it is stronger than usual these may be exaggerated. 6 times over 6 weeks or 6 times over a shorter period? (I am thinking about what I may plan for Xmas)

User
Posted 21 Jun 2021 at 22:02

I don't know if they will target the mets. If they are very close to the prostate they may be zapped at the same time.

If they don't treat them then they will presumably become the site from which further cancer cells will spread.

If they do treat them they really need to be zapped more than once, as they are only giving you 6 fractions I can't see how or when they will do the mets unless they are done at the same time. 

If RT starts in September, I think it is most likely you will be fine by Christmas. I think the side effects are proportional to the total dose not the strength of each fraction (unless they gave you all 36 grays in one go, in which case I think you would come out the machine smelling like a bacon sandwich).

Side effects are worse towards the end of RT and a few weeks after, so early November may be when they are at the worst, it could involve fatigue, or minor bleeding from bowels. I wouldn't book an expensive holiday just in case you can't go, but you might want to book a cheap holiday and accept you may lose the money if you do have side effects.

Hope the July holiday goes well pandemic permitting. 

Dave

User
Posted 21 Jun 2021 at 23:45
It is called hypofractionated radiotherapy and this may seem counter-intuitive but the higher the dose & fewer the fractions, the less side effects (up to a point - go too high with the dose and as Dave says, bacon sandwiches). 30 years ago, they were giving 36Gy in 6 fractions over 3 weeks (so a visit to the hospital twice each week) as a radical (curative) treatment regime. More recently, the Stampede trial has tried 36Gy over 6 weeks for men who are metastatic - the RT was only targeted to the prostate and not the mets, I think. Data suggested that it didn't provide any great benefit over 55Gy / 20 fractions but had fewer side effects than 74Gy / 37 fractions.

Has the onco said anything about it being part of a trial? It may just be their preference but if a trial, that should be explained to you & your consent sought.

Christmas looks good, then, but if going somewhere sunny, you will need to use factor 50 around your midriff or keep your shirt on.

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

User
Posted 22 Jun 2021 at 10:06

Hi. I don't think it is part of a trail - my oncologist was dubious about ATLANTA. I guess all will be explained early September.   

User
Posted 30 Jun 2021 at 11:45
Hi. I just looked at quotes for travel insurance for 2 week trip to Spain. It comes out (various suppliers) at an average of about £2500; or more the double the cost of the holiday! Advice?
 
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