I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error

Just diagnosed...T3b Gleason 8(4+4)

User
Posted 07 Jul 2021 at 17:46

Hi 

I had a conversation over in Worried about , titled PSA 28, but thought I should move here as I have received my diagnosis today.

The meeting with the chief urologist confirmed that I have advanced prostate cancer of the aggressive variety.

T3b Gleason score of 8 (4+4)

They took 16 cores and 13 were positive 

6/7 on the right hand side, 4/6 on the left hand side plus 3/3 on the targeted ones...up high on the apex. I think.

 

They haven't had the bone scan results and have requested a CT scan...so more waiting to see if it's spread.

Action if it hasn't is to begin hormone therapy or chemical castration as it used to be called. I even have a kind of prescription sheet to take to my GP for Degarelix. So that can start ASAP.

He is also organising a PSMA PET scan but only if it hasn't spread......so more waiting ...

 

 

User
Posted 07 Jul 2021 at 18:33

Hi Prof, No real need to start a new thread, none of us pay attention to where a thread is most of us just look for new posts.

Yes more waiting, If your PSA was over 100 I would be very worried about spread, but I think you have a reasonable chance it is still locally advanced, in which case cure would be possible. 

Good luck with the bone results.

 

Dave

User
Posted 08 Jul 2021 at 10:20

Sorry to read about your diagnosis. HT will be part of your treatment regardless of spread as it will starve the cancer of fuel. Once your medical team have the rest of the results you will have a clearer picture of what else is on the cards. Worth looking at this if you haven’t already https://prostatecanceruk.org/prostate-information/just-diagnosed

 

Ido4

User
Posted 08 Jul 2021 at 12:37

Prostatectomy is unlikely to be of any use once the cancer is locally advanced. Cancer cells would be left behind and would need blasting with RT. So you may as well just blast the whole lot with RT and do the job once rather than twice.

Physical castration is permanent, chemical castration is temporary. Three years of HT won't be much fun, but a lifetime of castration sounds worse to me.

At the moment you are not classed as incurable. So if you are cured it would be nice to have working testicles at the end of it.

 

Edited by member 08 Jul 2021 at 14:11  | Reason: Not specified

Dave

User
Posted 08 Jul 2021 at 16:12

Some confusion in your results I think. It can't be advanced if there is no evidence of spread - conversely, if he said it is advanced then he must be aware of information that you haven't included in the post? I suspect that what he actually said was that your cancer is locally advanced, which is not the same as advanced.

With locally advanced cancer, surgery is rarely a suitable option as the chance of getting it all is slim. In some cases, the surgeon will recommend surgery with adjuvant RT/HT (e.g. they know you will need the additional treatment before they start cutting you) and some men would go for that while others would see it as rather bonkers to knowingly opt for both sets of side effects. In your case, it seems the surgeon doesn't think that RP with adjuvant RT would be advisable anyway and if you did go down that route, you would want to clarify whether the op would be non-nerve sparing which means almost certain ED and a higher risk of urinary incontinence. If a surgeon doesn't want to get her/his scalpel out, there is usually good reason!

As for castration, yes it still happens although it is more rare now in the UK than in some other countries - orchiectomy is cheaper that having to pay for injections or tablets in countries that don't have an NHS type service and some of the hormones are very expensive - for example, abiraterone and enzalutimide are nearly £3000 per month. We have had a couple of members here who have had orchiectomy rather than take hormones but for quite different reasons - one for whom no hormone was effective so he agreed to castration rather than die quickly (it worked and he was around for a good few years), one who had a fear of needles & hospitals I think and another who had dementia and so the family & medics agreed that orchiectomy was the best option. The downside of just having them chopped off means that if there are terrible side effects, you can't fix them back on

Edited by member 08 Jul 2021 at 20:27  | Reason: typo

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

User
Posted 09 Jul 2021 at 11:52

As you have discovered surgery is almost certainly futile for you, so definitely don't waste your savings on it. Spend those savings on beer instead. 

When you start the hormones the cancer will become dormant, and the pet scan won't be able to find it.

I agree anti-hormone might be a better name. But I expect then phrases like cancer surgery would need to be changed to anti-cancer surgery. One for the linguists I think. 

Dave

User
Posted 11 Jul 2021 at 15:54

Hi Prof
I was locally advanced 
Have a look at my profile 
Still here after 10+ years 

Good luck 

Barry

User
Posted 14 Jul 2021 at 12:09
I did not have a lot of confidence in my contacts with urologist. I was unsuccessful in attempts to contact clinical nurse. The oncologist and various nurses are very different. Also my GP is very good and admits where his knowledge is limited. The NHS (Newcastle and Carlisle) worked for me; diagnosed the beginning of February, MRI and bone scans done within 6 weeks, and now in fifth month of zolodox and 7 weeks of enzo. RT programmed for October after oncologist meet in early September - 6 months being what I believe is the minimum time between starting hormones and getting radiation. On Friday I will get up-date on PSA (last month it was 0.33) and testosterone (<0.5). I don't know though if my APC is curable with the three mets.
User
Posted 14 Jul 2021 at 12:57

ProfZarkov

Posted 11 Jul 2021 at 14:39

"Hi

Starting to feel a rant coming on. Had a good one on Facebook.....my friends who live and work in Sicily told me about their father, also a PCA sufferer .. however unlike the UK, he got seen quickly...scan one day, results the next day, third day treatment! With over ten years of austerity and the raping of our NHS plus Brexit (10% of all NHS staff from EU....but not any more) plus Covid or rather the UK's response to it, I feel that I may become a Covid victim.....it's almost 6 months now since my PSA Tests, 45 days to see a consultant, then two weeks between each scan etc then 4 weeks to get biopsy results....still haven't started any treatment....yes, I'm angry...it shouldn't be like this, doesn't have to be like this....I didn't vote for them...I asked followers on Facebook that if they did vote for them....would they care to swap places......?"

This pandemic has put a considerable strain on everybody, some more than others as many have experienced delays in diagnosis and treatment for all sorts of problems.  Cancer patients have in general been given some priority.  It is understood that men will rant here about delays and shortcomings due to inability to progress cases quickly.  This has been the case for as long as I can remember due to underfunding and insufficient staff in the NHS.  However, having said that, it is understood that we keep politics out of what is a cancer support forum.

As regards, Lutetium 177, Lyn has pointed out that it is a treatment for advanced PCa.  We did have a member who had it abroad a couple or so years back.  If I recall correctly, the going rate at the time was circa £12,000 for each course and  typically three courses are given, so quite an expensive treatment, particularly as results do not appear to provide lengthy success that early Prostatectomy and RT can afford.

Barry
User
Posted 20 Aug 2021 at 12:10

I don't understand why they are doing so much diagnosis. I guess the more information they have before treatment the better. As you have no doubt read on this forum psma scans are often delayed because of the tracer. You are in Wales, health is devolved, so they may have different policies to England.

I was diagnosed in 2018 it was psa, mri, biopsy, bone scan in that order and all done within about six weeks. 

Dave

User
Posted 27 Aug 2021 at 09:26

I'm glad you got the scan done. One hears so many stories of it being cancelled at the last minute because the isotope isn't available. 

I agree about all the "if negative"s one too many at the end. I think you can probably start HT, but one or two more days, to confirm with CNS won't make much difference after 7 months.

Accomodation for RT? They are usually very flexible on appointment times, so you may be able to arrange afternoon appointments. If the journey were 1 hour each way I wouldn't book an hotel. If it were two hours each way and the town had a concert hall or a theatre or some other attraction, I might book a few nights in an hotel, but not every night. I guess it depends how much money you have to spend on hotels. 

Dave

User
Posted 27 Aug 2021 at 11:38

When I had my RP operation, the hospital offered my Wife O/Night accommodation in the Nurses block. Basic but quite common at some hospitals. Perhaps that might be another line of enquiry

User
Posted 28 Aug 2021 at 04:34

Re the "if PSMA negative" it means they may change your treatment plan if anything is detected outside the planned treatment area.

 

Are they treating your lymph nodes or just the prostate bed? My onco is suggesting 37 sessions including the lymphs.

Edited by member 28 Aug 2021 at 08:24  | Reason: Not specified

User
Posted 28 Aug 2021 at 07:43
Most men are offered RT at a hospital within reasonable travelling distance of their home. For me it was about a 45m drive from home to the Clatterbridge Cancer Centre on the Wirral where I had my treatment. I got to know that journey very well over the seven weeks (less 2 days) of my treatment!

For a 2h journey I'd still consider it reasonable as a daily trip, but I appreciate this is a personal judgment. Not sure why the wife and dog would need to go, though?

Best wishes,

Chris

User
Posted 28 Aug 2021 at 16:27

I agree, If they’ve completed all your scans HT should be started now.

Ido4

User
Posted 01 Sep 2021 at 12:15

That’s very reassuring. The wait to start treatment is difficult but the hormone therapy will start kicking the cancer’s ass! I would imagine the radiotherapy beams will be adjusted to include seminal vesicles and a wider field generally to make sure it hits everything it needs to. The radiotherapy will be tailored to you. Glad you’re feeling more positive too. 

Ido4

User
Posted 01 Sep 2021 at 13:18

I don't know what the RT regime will be. No one seems to be talking about Brachy, either HDR or LDR. If the cancer is all organ confined I would have thought Brachy would have been on the table somewhere. If all your RT is EBRT it could either be 37 fractions daily (except weekends), 20 fractions daily (except weekends) or even 5 fractions over 10 days. Obviously the clinical decision as to which is appropriate is what is important, but it is worth asking the onco what is available and perhaps stating a preference for minimal traveling, but only if it has at least as good a chance of a cure as any other treatment.

Another consideration is when to start RT. now you are on HT things will not be getting any worse. So maybe having RT in the middle of winter with a very long journey is better avoided and pushing the RT back to March would be better. Once more it is the clinical decision which is important and changing things to make your life more convenient should have only a low priority.  

The only tiny advantage of LDR brachy is you will be able to play with the Geiger counter for longer and get a precise measurement of the half life of the radioactive seeds.

Dave

User
Posted 01 Sep 2021 at 14:56

I googled to find the latest guidance re brachy. This is the best I can find but it is six months out of date. I am not saying Brachy is right for you. I just want to make sure all options are available and that the final decision is clinical not financial. 

https://whssc.nhs.wales/commissioning/whssc-policies/cancer/brachytherapy-in-the-treatment-of-localised-prostate-cancer-interim-commissioning-policy-cp01-january-2021/

Dave

Dave

Show Most Thanked Posts
User
Posted 07 Jul 2021 at 18:33

Hi Prof, No real need to start a new thread, none of us pay attention to where a thread is most of us just look for new posts.

Yes more waiting, If your PSA was over 100 I would be very worried about spread, but I think you have a reasonable chance it is still locally advanced, in which case cure would be possible. 

Good luck with the bone results.

 

Dave

User
Posted 08 Jul 2021 at 08:40

Hi 

I read that some offer real castration as opposed to a chemical one...is this more effective? Once the cancer gets used to zero testosterone, I understand it begins to slowly grow again....so doesn't really matter how you do it...

I forgot to ask about surgery....I'm guessing that this not an option with advanced prostate cancer, which has gone beyond the prostate capsule?

User
Posted 08 Jul 2021 at 10:20

Sorry to read about your diagnosis. HT will be part of your treatment regardless of spread as it will starve the cancer of fuel. Once your medical team have the rest of the results you will have a clearer picture of what else is on the cards. Worth looking at this if you haven’t already https://prostatecanceruk.org/prostate-information/just-diagnosed

 

Ido4

User
Posted 08 Jul 2021 at 10:32

Hi 

Thanks for that. Where are you at, at the moment?

I recorded the 13 min interview with the urologist.. just playing it back...he didn't seem keen on surgery but he did spell out all the options...3 yrs on HT seems a lot but then it is advanced and aggressive.

If there's no spread, then a PSMA PET scan is scheduled down in Swansea.

So a few more days of waiting...

 

User
Posted 08 Jul 2021 at 12:37

Prostatectomy is unlikely to be of any use once the cancer is locally advanced. Cancer cells would be left behind and would need blasting with RT. So you may as well just blast the whole lot with RT and do the job once rather than twice.

Physical castration is permanent, chemical castration is temporary. Three years of HT won't be much fun, but a lifetime of castration sounds worse to me.

At the moment you are not classed as incurable. So if you are cured it would be nice to have working testicles at the end of it.

 

Edited by member 08 Jul 2021 at 14:11  | Reason: Not specified

Dave

User
Posted 08 Jul 2021 at 16:12

Some confusion in your results I think. It can't be advanced if there is no evidence of spread - conversely, if he said it is advanced then he must be aware of information that you haven't included in the post? I suspect that what he actually said was that your cancer is locally advanced, which is not the same as advanced.

With locally advanced cancer, surgery is rarely a suitable option as the chance of getting it all is slim. In some cases, the surgeon will recommend surgery with adjuvant RT/HT (e.g. they know you will need the additional treatment before they start cutting you) and some men would go for that while others would see it as rather bonkers to knowingly opt for both sets of side effects. In your case, it seems the surgeon doesn't think that RP with adjuvant RT would be advisable anyway and if you did go down that route, you would want to clarify whether the op would be non-nerve sparing which means almost certain ED and a higher risk of urinary incontinence. If a surgeon doesn't want to get her/his scalpel out, there is usually good reason!

As for castration, yes it still happens although it is more rare now in the UK than in some other countries - orchiectomy is cheaper that having to pay for injections or tablets in countries that don't have an NHS type service and some of the hormones are very expensive - for example, abiraterone and enzalutimide are nearly £3000 per month. We have had a couple of members here who have had orchiectomy rather than take hormones but for quite different reasons - one for whom no hormone was effective so he agreed to castration rather than die quickly (it worked and he was around for a good few years), one who had a fear of needles & hospitals I think and another who had dementia and so the family & medics agreed that orchiectomy was the best option. The downside of just having them chopped off means that if there are terrible side effects, you can't fix them back on

Edited by member 08 Jul 2021 at 20:27  | Reason: typo

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

User
Posted 08 Jul 2021 at 18:34

Hi Prof, lots of side effects but happy to report my PSA on June 8th was  still <0.1.

Ido4

User
Posted 09 Jul 2021 at 09:09

Hi 

Had my first contact with my Key Worker, clinical nurse. Great guy. Made it clear I can contact him. Very helpful.

Yes, I understand that surgery is not now the first option....which such an object as the prostate, there's probably a lot of intricate carving up...lots of chances of cancer cells to be left behind, wandering off to do their dastardly deeds.

Do they also sever the urethra and reattach? I seem to recall Mr Fry had this.

My urologist said that my cancer had spread into the seminal vesicles...so I'm guessing that lowers chances of surgery. We have savings and I'd happily pay for surgery next week, if it was a good solution. Reviewing a study on PSMA PET scans in Australia, the surgeon described surgery as futile, if it had spread, even locally.

So, more waiting. I was advised not to begin the hormone (surely, anti-hormone?) drugs if I'm to have the PET scan. 

Thanks for all the support, it helps.

I've tried finding local support groups but with no success..I'm on the coast in West Wales, in between Fishguard and St David's.....love to meet up with local guys for a beer or coffee.....

 

User
Posted 09 Jul 2021 at 11:52

As you have discovered surgery is almost certainly futile for you, so definitely don't waste your savings on it. Spend those savings on beer instead. 

When you start the hormones the cancer will become dormant, and the pet scan won't be able to find it.

I agree anti-hormone might be a better name. But I expect then phrases like cancer surgery would need to be changed to anti-cancer surgery. One for the linguists I think. 

Dave

User
Posted 09 Jul 2021 at 12:17

Originally Posted by: Online Community Member
Do they also sever the urethra and reattach? I seem to recall Mr Fry had this.

Yes, that is why for many men the penis is shorter afterwards - it shortens by approximately the amount of urethra that was removed. You also get a vasectomy thrown in for free. 

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

User
Posted 11 Jul 2021 at 14:39

Hi 

Starting to feel a rant coming on. Had a good one on Facebook.....my friends who live and work in Sicily told me about their father, also a PCA sufferer .. however unlike the UK, he got seen quickly...scan one day, results the next day, third day treatment! With over ten years of austerity and the raping of our NHS plus Brexit (10% of all NHS staff from EU....but not any more) plus Covid or rather the UK's response to it, I feel that I may become a Covid victim.....it's almost 6 months now since my PSA Tests, 45 days to see a consultant, then two weeks between each scan etc then 4 weeks to get biopsy results....still haven't started any treatment....yes, I'm angry...it shouldn't be like this, doesn't have to be like this....I didn't vote for them...I asked followers on Facebook that if they did vote for them....would they care to swap places......?

 

User
Posted 11 Jul 2021 at 14:46

On a more positive front I'm keen to investigate the new 177 Lutetium treatment...what has been other guys experience? Looks like there aren't any trials, i.e. free treatments going.

Has anyone had this? Is it really effective? And how much?

User
Posted 11 Jul 2021 at 15:43
Not sure why you are asking about L177 it is a treatment for men who are advanced / metastatic and castrate-resistant and have already had chemo and / or abiraterone or enzalutimide.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 11 Jul 2021 at 15:54

Hi Prof
I was locally advanced 
Have a look at my profile 
Still here after 10+ years 

Good luck 

Barry

User
Posted 11 Jul 2021 at 16:41

Sorry, didn't know that....only a newbie here....just heard this breakthrough, guided missile type treatment!

Seems strange to me that the Lutetium procedure is not a first choice as it targets all prostate cancer cells...or is it expensive/tricky and is held as last resort?

Edited by member 12 Jul 2021 at 11:46  | Reason: Update

User
Posted 14 Jul 2021 at 10:23

Well, back to the waiting game.. a week now since I got the official diagnosis. No multi disciplinary team, just the urologist. Might get an oncologist, who knows 

The bone scan results were due "in a few days", that was 10 days ago.

Made contact with my clinical nurse but he's gone quiet and hasn't answered any email/text.

Six months now .. ..just waiting to start treatment.......any day now......

User
Posted 14 Jul 2021 at 12:09
I did not have a lot of confidence in my contacts with urologist. I was unsuccessful in attempts to contact clinical nurse. The oncologist and various nurses are very different. Also my GP is very good and admits where his knowledge is limited. The NHS (Newcastle and Carlisle) worked for me; diagnosed the beginning of February, MRI and bone scans done within 6 weeks, and now in fifth month of zolodox and 7 weeks of enzo. RT programmed for October after oncologist meet in early September - 6 months being what I believe is the minimum time between starting hormones and getting radiation. On Friday I will get up-date on PSA (last month it was 0.33) and testosterone (<0.5). I don't know though if my APC is curable with the three mets.
User
Posted 14 Jul 2021 at 12:57

ProfZarkov

Posted 11 Jul 2021 at 14:39

"Hi

Starting to feel a rant coming on. Had a good one on Facebook.....my friends who live and work in Sicily told me about their father, also a PCA sufferer .. however unlike the UK, he got seen quickly...scan one day, results the next day, third day treatment! With over ten years of austerity and the raping of our NHS plus Brexit (10% of all NHS staff from EU....but not any more) plus Covid or rather the UK's response to it, I feel that I may become a Covid victim.....it's almost 6 months now since my PSA Tests, 45 days to see a consultant, then two weeks between each scan etc then 4 weeks to get biopsy results....still haven't started any treatment....yes, I'm angry...it shouldn't be like this, doesn't have to be like this....I didn't vote for them...I asked followers on Facebook that if they did vote for them....would they care to swap places......?"

This pandemic has put a considerable strain on everybody, some more than others as many have experienced delays in diagnosis and treatment for all sorts of problems.  Cancer patients have in general been given some priority.  It is understood that men will rant here about delays and shortcomings due to inability to progress cases quickly.  This has been the case for as long as I can remember due to underfunding and insufficient staff in the NHS.  However, having said that, it is understood that we keep politics out of what is a cancer support forum.

As regards, Lutetium 177, Lyn has pointed out that it is a treatment for advanced PCa.  We did have a member who had it abroad a couple or so years back.  If I recall correctly, the going rate at the time was circa £12,000 for each course and  typically three courses are given, so quite an expensive treatment, particularly as results do not appear to provide lengthy success that early Prostatectomy and RT can afford.

Barry
User
Posted 15 Jul 2021 at 12:36

Thanks for that. It's probably not "political" to point the finger at who is to blame for the lack of treatment...

But some good news...

My key worker clinical nurse phoned me last night....bone scan came back negative...no bone mets...so far.

So that's the first piece of good news in 6 long months. No treatment started yet as I've got a CT scan booked next month....and if also clear...a PSMA PET scan after that.....

Buoyed up ....a bit!

User
Posted 18 Aug 2021 at 15:15

There's a great series of webinars running now and thru January! By prostate cancer research...

https://www.prostate-cancer-research.org.uk/living-well/

Past webinars are recorded,

This one, coping with advanced prostate cancer was very good.....

 

https://youtu.be/A4tNunF3was

 

Edited by member 19 Aug 2021 at 10:22  | Reason: Update

User
Posted 19 Aug 2021 at 16:38

Thanks Prof,

And good bone scan result on St Swithens day, must have missed that message.  

Dave

User
Posted 19 Aug 2021 at 16:41

We'll both bone and CT scan negative

Now back in the waiting game for a PSMA PET scan.... 2 months since my diagnosis... Keen to start treatment.  

 

User
Posted 20 Aug 2021 at 10:58

This waiting game is killing me...over 7 months since this all started...2 months after my official diagnosis...I'm "high risk" but still unable to get thru to anyone .even my CNS ! Supposed to be getting this PSMA PET scan but no news....

User
Posted 20 Aug 2021 at 12:10

I don't understand why they are doing so much diagnosis. I guess the more information they have before treatment the better. As you have no doubt read on this forum psma scans are often delayed because of the tracer. You are in Wales, health is devolved, so they may have different policies to England.

I was diagnosed in 2018 it was psa, mri, biopsy, bone scan in that order and all done within about six weeks. 

Dave

User
Posted 20 Aug 2021 at 13:14

Yes I can see there's method here ...high risk patient...let's check for the worst case...spread to bones....ok, negative, let's check next worst...soft tissue, ok negative. Good. Let's do the PSMA PET scan...this is really to check the negatives (CT scan only 65% good at showing no cancer) and I guess to get a nice 3D piccie of the actual cancer location for future treatment, ie radiotherapy some months later. My CNS did phone today and got thru to the Swansea hospital, they have the referral and hopefully I'll get the scan next week. I'll go straight on to the Degarelix the day or so after . That's under my control at my local GP surgery!

So some good ish news today....off to pick wild rock samphire now, as you do...

 

Edited by moderator 20 Aug 2021 at 15:58  | Reason: Not specified

User
Posted 27 Aug 2021 at 08:27

Hi.

Had the PSMA PET scan yesterday. Bit of an ordeal - 4 hour round trip. The radioisotope is pretty lively, they inject it and then run away, leaving you in a lead lined room for two hours! Take a book.

The scan itself is easy, quick CT scan first then an odd 6 stage slide thru the scanner. 25 mins all done ....I measured the radiation at over 90,000 counts per minute and total dose around 12 mSv.... biggest yet!  With a half life of only 109 mins, it decays away pretty fast.

My question now is...what next? 

I'm supposed to go on to degarelix and I thought immediately after this scan...it's been 7 long months and no treatment. But re reading the consultants letter it says...bone scan, if negative, CT scan, if negative, PSMA PET scan, then if negative.... hormone therapy

Just wondering why he would say the "if negative" about the PET scan...may dictation error? For surely it don't matter what the PET scan shows....HT would surely follow.....will contact my CNS..

Any thoughts?

Plus RT will be the next treatment and it should be back at Singleton hospital. If it's a long course, say 20  sessions, do most guys book accommodation nearby?

 

User
Posted 27 Aug 2021 at 09:26

I'm glad you got the scan done. One hears so many stories of it being cancelled at the last minute because the isotope isn't available. 

I agree about all the "if negative"s one too many at the end. I think you can probably start HT, but one or two more days, to confirm with CNS won't make much difference after 7 months.

Accomodation for RT? They are usually very flexible on appointment times, so you may be able to arrange afternoon appointments. If the journey were 1 hour each way I wouldn't book an hotel. If it were two hours each way and the town had a concert hall or a theatre or some other attraction, I might book a few nights in an hotel, but not every night. I guess it depends how much money you have to spend on hotels. 

Dave

User
Posted 27 Aug 2021 at 10:01

Hi, thanks for that. Yes, I was a bit early and had to wait an hour for the F18 to turn up....it's very hectic and a lot of juggling goes on to fit patients in....you wouldn't believe how much hassle they from patients....the ones who need treatment!

Yes, it's over two hours each way..Trefin to Swansea. With wife and dog. So if it's a long course, say a month, we could get accommodation in the Mumbles. I heard from friends in Cardiff that their hospital can provide accommodation.... so I'll enquire nearer the time.

Yes, I'll hang on.....

 

User
Posted 27 Aug 2021 at 11:24

I remember going to Ireland via Fishguard. The M4 finishes at Swansea, and then you trundle along some coutry roads, it doesn't look far on a map but I quite agree that is not a journey you want to do often.

I was initially thinking Premiere Inn (other hotels are available) type accomodation, but if you start HT now then RT will be about 6 months time. That would be out of holiday season, so a holiday cottage with a long booking off season might be affordable. 

Edited by member 27 Aug 2021 at 13:05  | Reason: Not specified

Dave

User
Posted 27 Aug 2021 at 11:38

When I had my RP operation, the hospital offered my Wife O/Night accommodation in the Nurses block. Basic but quite common at some hospitals. Perhaps that might be another line of enquiry

User
Posted 28 Aug 2021 at 04:34

Re the "if PSMA negative" it means they may change your treatment plan if anything is detected outside the planned treatment area.

 

Are they treating your lymph nodes or just the prostate bed? My onco is suggesting 37 sessions including the lymphs.

Edited by member 28 Aug 2021 at 08:24  | Reason: Not specified

User
Posted 28 Aug 2021 at 07:43
Most men are offered RT at a hospital within reasonable travelling distance of their home. For me it was about a 45m drive from home to the Clatterbridge Cancer Centre on the Wirral where I had my treatment. I got to know that journey very well over the seven weeks (less 2 days) of my treatment!

For a 2h journey I'd still consider it reasonable as a daily trip, but I appreciate this is a personal judgment. Not sure why the wife and dog would need to go, though?

Best wishes,

Chris

User
Posted 28 Aug 2021 at 08:04

Hi.

Thanks for that.

It's about 74 miles and takes about 2 hours...each way.

I could drive myself.

If my wife shares the driving...the dog comes too, as he can't be left that long.

Since the RT will probably be around feb- march, then a months rental of some holiday place may be cheap and a good holiday for us, as we've been unable to plan or do anything holiday wise for 7 months.

I'm still thinking I should instigate the HT next week...the PET scan results shouldn't change whether or when I do the HT??

 

User
Posted 28 Aug 2021 at 09:16

To be honest I don't know what the plan is...from the MDT meeting, end of June, I wasn't there but seeing the letter sent by my uro...7th July...."if bone scan and CT scan negative, organise a PSMA PET scan. Following that, if negative, start on androgen deprivation therapy and a referral for consideration of radical radiotherapy"

The CT scan was negative, so I'm guessing the lymph nodes ok....I never see any documents just a call from CNS each time... weeks later!

Tbh I can't see why HT can't begin now...

 

User
Posted 28 Aug 2021 at 16:27

I agree, If they’ve completed all your scans HT should be started now.

Ido4

User
Posted 29 Aug 2021 at 11:30

I'll chase this up next week.....

User
Posted 01 Sep 2021 at 08:29

Hi.

Good news. PSMA PET scan confirmed the previous scans, in that the cancer has not spread...looks like T3b N0 M0.

With only a "possible" spread to right seminal vesicle.

And my GP has sent me copies of the reports too. Excellent.

I'm to start the Degarelix tomorrow!

Talk about London buses ...I had 4 phone calls...my CNS, then my GP, then the chief urologist and finally a Macmillan volunteer!

So, I'm a much happier bunny now. And guys, you were right. Once treatment starts your mental health improves.... hopefully no more constantly carrying my phone, on case someone calls, no more What Ifs.....

The uro said that RT should start after 3 months....anyone got any experience of what RT I'll get for my stage? The IMRT linac kit at Singleton, Swansea looks pretty good.

User
Posted 01 Sep 2021 at 12:15

That’s very reassuring. The wait to start treatment is difficult but the hormone therapy will start kicking the cancer’s ass! I would imagine the radiotherapy beams will be adjusted to include seminal vesicles and a wider field generally to make sure it hits everything it needs to. The radiotherapy will be tailored to you. Glad you’re feeling more positive too. 

Ido4

User
Posted 01 Sep 2021 at 12:39

Thanks for that.

The Degarelix HT seems to effect guys differently....we'll just have to see...

Be nice to be able to get in touch with local guys who've had the same and who've also been thru RT at Singleton

User
Posted 01 Sep 2021 at 13:18

I don't know what the RT regime will be. No one seems to be talking about Brachy, either HDR or LDR. If the cancer is all organ confined I would have thought Brachy would have been on the table somewhere. If all your RT is EBRT it could either be 37 fractions daily (except weekends), 20 fractions daily (except weekends) or even 5 fractions over 10 days. Obviously the clinical decision as to which is appropriate is what is important, but it is worth asking the onco what is available and perhaps stating a preference for minimal traveling, but only if it has at least as good a chance of a cure as any other treatment.

Another consideration is when to start RT. now you are on HT things will not be getting any worse. So maybe having RT in the middle of winter with a very long journey is better avoided and pushing the RT back to March would be better. Once more it is the clinical decision which is important and changing things to make your life more convenient should have only a low priority.  

The only tiny advantage of LDR brachy is you will be able to play with the Geiger counter for longer and get a precise measurement of the half life of the radioactive seeds.

Dave

User
Posted 01 Sep 2021 at 13:54

Hi.

Yes, brachy has never been mentioned....I'm guessing that I'll get assigned an onco soon ...as you say it's a breathing space now for the NHS...give the firmagon time to shrink the cancer.

They seem to be opting for fewer sessions - there's papers stating that it's better all round doing this. The prostate cancer seems particularly vulnerable to larger x-ray doses and it means higher throughput of patients! We were considering renting a nice cottage in the Mumbles....winter time would mean cheaper rates. And we could do with a kind of holiday...it's been over 7 months of anguish and not being able to get away....

I feel a lot easier now...the overbearing weight of all the waiting has almost vanished....not sure how I'm going to cope with three years of HT....maybe one?

 

User
Posted 01 Sep 2021 at 14:56

I googled to find the latest guidance re brachy. This is the best I can find but it is six months out of date. I am not saying Brachy is right for you. I just want to make sure all options are available and that the final decision is clinical not financial. 

https://whssc.nhs.wales/commissioning/whssc-policies/cancer/brachytherapy-in-the-treatment-of-localised-prostate-cancer-interim-commissioning-policy-cp01-january-2021/

Dave

Dave

User
Posted 01 Sep 2021 at 15:42

Hi,

Thanks for that.

Their conclusion is.

What NHS Wales has decided

WHSSC has carefully reviewed the evidence of brachytherapy for patients

with localised prostate cancer. We have concluded that there is enough

evidence to fund the use of brachytherapy

But I'll ask my onco....when I got one!

 

User
Posted 05 Sep 2021 at 11:50

Just started the HT

Quite painful at the injection site which seems to spread out quite a bit...hot sweaty nights..no sleep but third night, getting better. Should be down to almost zero testosterone now....posting over on the Degarelix thread now...

User
Posted 13 Sep 2021 at 11:30

Hi.

I thought I should keep a record of events, procedures and treatments.

I used to do a blog when we lived on a narrowboat, so why not continue:

http://prostatecancer.vivatek.co.uk/

It's not finished but hopefully may be a guide for other guys . . . .urging them to get regularly tested.

The older blog, same address, just remove first bit...

 

 

 
Forum Jump  
©2021 Prostate Cancer UK