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User
Posted 14 Oct 2020 at 10:07

Hi all,


Was diagnosed in September T3B N1M1 Gleason 9 and PSA of 213 after various scans and a biopsy (PSMA PET included).  One hotspot identified in the pelvic bone 2 pelvic lymph nodes affected.    It has been a shocking 4-6 weeks but slowly coming to terms with the battle that lies ahead.


Great forum and some of the comments have made me realise that I am not alone on this journey.


I started Bicalutamide 50mg shortly after diagnosis (in week 4 now) and had my first injection of Decapeptyl 10 days ago.   Will be switching to 3 monthly injections next time.  Also been advised will be on Enzalutamide shortly.


My PSA result from last week is 76.


I am being recommended RT in 5 months time and just wanted to hear whether or not anyone else has followed this path and timelines.


Glad I found and joined this community :)


 


 


 

User
Posted 14 Oct 2020 at 14:14

Hi JayKay, sorry you are here.


i was 49 when diagnosed so not dissimilar to you T4n1m1a, PSA 342.


i has early chemo however due to covid they are avoiding that and giving men either enzaclutamide or abiraterone, they do the same thing. They have same results as chemo but are much more expensive so chemo is the norm apart from covid concerns hence I think why you have enzaclutamide.


as for radiotherapy, I may be wrong but you may get just 6 fractions opposed to what the above post indicates, I suggest you check with your doctor. Usually you have more if you are deemed cureable but then you would not usually have chemo/enzaclutamide so not sure what they have indicated?


to reassure you, I am now 55, running ultramarathons and loving life. I remain on drugs and one day they will fail but 6 years on things are fine. My PSA has been 0.12 for a year. 


My experience with radiotherapy did not include laxatives mentioned above and I had 2 dots not 3 so it’s clear that different hospitals do different things. I suggest you ask next time you have an appointment as it’s better to know than have us lot guess for you .


take care, we are all here for you .

Edited by member 14 Oct 2020 at 14:16  | Reason: Not specified

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User
Posted 14 Oct 2020 at 13:56

Hi Peter,


Yep, offered RT in all 3 places which I was relieved to hear.


 

Edited by member 14 Oct 2020 at 13:59  | Reason: Not specified

User
Posted 14 Oct 2020 at 14:01
A long post - hope it isn't telling you more than you want to know!
I was on hormone therapy for about 7 months (last 3-month injection was September 2019), then started radiotherapy October 16th. The preparation before and during the course of r/t is a bit of a faff - 'planning meeting', where they scan you, take measurements and put 3 small tattoos (dots) on you. For each 'fraction' (dose of radiation) you must have an empty bowel (strong laxative suppositories before each visit) and a full bladder, which means you have to arrive at the hospital around 45 minutes - one hour before your treatment time. Once there you will have to drink about 500 ml of water / squash, then wait for this to reach your bladder. It's important that you are already well hydrated, otherwise it won't get to your bladder but will be absorbed into your tissues, so you must drink around 2 litres of water per day during your treatment. Once in the treatment room (it's sometimes called a 'linac' - linear accelerator) you will be positioned on the table, and the radiographers will move you about until the 3 tattoo dots line up. Then they leave, and the machine starts. It will scan you so they can check your bowel and bladder. The actual dose of radiaton only lasts about 2 minutes, and you are unaware of it, but the machine will move around you a few times. Then the radiographers come back in, help you off the table, you rearrange your clothing then walk steadily to the nearest toilet! You will have either 20 or 37 fractions, Monday - Friday with weekends off. There will be few (if any) side effects at first - these will develop over the duration of your treatment. Oddly, they actually get worse in the 2 weeks after your treatment is over, but are manageable. After 8 - 10 weeks they should pass altogether. So, r/t is a bit of a faff, but doesn't hurt. The side effects can be unpleasant, but not unbearable, and not long-lasting. Six months after my treatment ended, I had my first post-treatment PSA test - less than 0.03, if memory serves! If you don't already have it I suggest you download or order the 'Prostate Cancer Tool Kit' from Prostate Cancer UK. It will tell you evrything you want to know, and more! Also, you should have an assigned specialist nurse who can take your phone calls, or you can call the Prostate Cancer UK specialist nurses if anything is worrying you. My overall impression, from being diagnosed to finishing my treatment, was that I was on a really slick smooth system for helping prostate cancer patients. Best of luck with your treatment.
Hermit
User
Posted 14 Oct 2020 at 14:24

I too intend to continue to live life to the fullest just like you.  It gives me hope that I can continue exercising and riding my bike as long as I possibly can.   The fact that you run ultramarathons fills me with hope that there is life after treatment and I can continue doing the things I love.  


I am so glad I built up the courage to join this forum :)


 


I will certainly ask the consultant at my next appointment, thank you IRUN.

Edited by member 14 Oct 2020 at 14:37  | Reason: Not specified

User
Posted 14 Oct 2020 at 23:42
Your treatment is cutting edge so you are defo getting s good shot at a long remission..

User
Posted 15 Oct 2020 at 16:35

Should be OK to cycle, but each case is different, so consult your doctors. Might be a good idea to get hold of a saddle with a large perineal cutout and/or make sure you sit back on the saddle using your sit bones and not putting too much pressure on the perineum. I use a Specialized sitero (good for time-trial position, but I use it all the time). There are lots of different sorts to choose from. There's a few threads on here where the subject has been discussed.

_____


Two cannibals named Ectomy and Prost, all alone on a Desert island.


Prost was the strongest, so Prost ate Ectomy.

User
Posted 15 Oct 2020 at 19:04

I was diagnosed in March this year at 59 yrs.


T3bN1M1 same as yourself lymph nodes and hip bone PSA 78. 
Due to COVID rearing it’s head didn’t get chemo. Bicalutamide followed by Prostap injections now on abiraterone (no chemo still)


I start radiotherapy 1st week November so a rough idea of timeline depending where you are


Found out lots on this forum, my only symptom was getting up to pee at night otherwise healthy


wishing all the best


 

Edited by member 15 Oct 2020 at 19:05  | Reason: Not specified

User
Posted 20 Oct 2020 at 09:09

Originally Posted by: Online Community Member


As to radiotherapy, I may be wrong but you may get just 6 fractions opposed to what the above post indicates, I suggest you check with your doctor. Usually you have more if you are deemed cureable but then you would not usually have chemo/enzaclutamide so not sure what they have indicated?



 Certainly I believe this was true until very recently but more and more centres seem to be coming to the conclusion that it is worth treating advanced cases with upfront radiotherapy if there are only a few sites where it has spread.


I have mets in pelvis and one rib have been offered chemo followed by 20 fractions total of 55Gy

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User
Posted 14 Oct 2020 at 12:41
Can’t give you any comfort or answers, but how did you come to have a PSA test aged fifty? Did you have any other symptoms?

Cheers, John.
User
Posted 14 Oct 2020 at 12:57

Hi John,


Treated myself to a road bike on my 50th birthday after not riding for about 10 years.  Noticed I had saddle soreness and a week later it still hadn't gone away.  GP referred me to a urologist and I was given a PSA Test, Flexible cystoscopy (not nice), DRE, MRI, BIOPSY (incredibly painful), 2 types of CT Scan followed by the PET scan!


Always been a fit person, super healthy diet and low body fat well within healthy BMI so it all came as a big shock .


No family history and no symptoms prior to the saddle soreness.


Jay


 

Edited by member 14 Oct 2020 at 12:59  | Reason: Not specified

User
Posted 14 Oct 2020 at 13:35

I'm sure someone with knowledge of this course of treatment will answer but my first thought was it's good they're offering you RT.   Have you any indication of what they're offering on RT.  Are they going to treat the prostate, lymph nodes, hotspot and area.   I'd want that, although if you've been reading this forum you'll know treatments vary with condition and patient and often what a doctor is willing to do at a certain hospital.

User
Posted 14 Oct 2020 at 13:56

Hi Peter,


Yep, offered RT in all 3 places which I was relieved to hear.


 

Edited by member 14 Oct 2020 at 13:59  | Reason: Not specified

User
Posted 14 Oct 2020 at 14:01
A long post - hope it isn't telling you more than you want to know!
I was on hormone therapy for about 7 months (last 3-month injection was September 2019), then started radiotherapy October 16th. The preparation before and during the course of r/t is a bit of a faff - 'planning meeting', where they scan you, take measurements and put 3 small tattoos (dots) on you. For each 'fraction' (dose of radiation) you must have an empty bowel (strong laxative suppositories before each visit) and a full bladder, which means you have to arrive at the hospital around 45 minutes - one hour before your treatment time. Once there you will have to drink about 500 ml of water / squash, then wait for this to reach your bladder. It's important that you are already well hydrated, otherwise it won't get to your bladder but will be absorbed into your tissues, so you must drink around 2 litres of water per day during your treatment. Once in the treatment room (it's sometimes called a 'linac' - linear accelerator) you will be positioned on the table, and the radiographers will move you about until the 3 tattoo dots line up. Then they leave, and the machine starts. It will scan you so they can check your bowel and bladder. The actual dose of radiaton only lasts about 2 minutes, and you are unaware of it, but the machine will move around you a few times. Then the radiographers come back in, help you off the table, you rearrange your clothing then walk steadily to the nearest toilet! You will have either 20 or 37 fractions, Monday - Friday with weekends off. There will be few (if any) side effects at first - these will develop over the duration of your treatment. Oddly, they actually get worse in the 2 weeks after your treatment is over, but are manageable. After 8 - 10 weeks they should pass altogether. So, r/t is a bit of a faff, but doesn't hurt. The side effects can be unpleasant, but not unbearable, and not long-lasting. Six months after my treatment ended, I had my first post-treatment PSA test - less than 0.03, if memory serves! If you don't already have it I suggest you download or order the 'Prostate Cancer Tool Kit' from Prostate Cancer UK. It will tell you evrything you want to know, and more! Also, you should have an assigned specialist nurse who can take your phone calls, or you can call the Prostate Cancer UK specialist nurses if anything is worrying you. My overall impression, from being diagnosed to finishing my treatment, was that I was on a really slick smooth system for helping prostate cancer patients. Best of luck with your treatment.
Hermit
User
Posted 14 Oct 2020 at 14:10

Thank you Hermit for the reply.  I have read loads but receiving a post from someone who has been through it means a lot. It certainly sounds like a well oiled machine.   I have downloaded the toolkit which is brilliant. 

User
Posted 14 Oct 2020 at 14:14

Hi JayKay, sorry you are here.


i was 49 when diagnosed so not dissimilar to you T4n1m1a, PSA 342.


i has early chemo however due to covid they are avoiding that and giving men either enzaclutamide or abiraterone, they do the same thing. They have same results as chemo but are much more expensive so chemo is the norm apart from covid concerns hence I think why you have enzaclutamide.


as for radiotherapy, I may be wrong but you may get just 6 fractions opposed to what the above post indicates, I suggest you check with your doctor. Usually you have more if you are deemed cureable but then you would not usually have chemo/enzaclutamide so not sure what they have indicated?


to reassure you, I am now 55, running ultramarathons and loving life. I remain on drugs and one day they will fail but 6 years on things are fine. My PSA has been 0.12 for a year. 


My experience with radiotherapy did not include laxatives mentioned above and I had 2 dots not 3 so it’s clear that different hospitals do different things. I suggest you ask next time you have an appointment as it’s better to know than have us lot guess for you .


take care, we are all here for you .

Edited by member 14 Oct 2020 at 14:16  | Reason: Not specified

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User
Posted 14 Oct 2020 at 14:24

I too intend to continue to live life to the fullest just like you.  It gives me hope that I can continue exercising and riding my bike as long as I possibly can.   The fact that you run ultramarathons fills me with hope that there is life after treatment and I can continue doing the things I love.  


I am so glad I built up the courage to join this forum :)


 


I will certainly ask the consultant at my next appointment, thank you IRUN.

Edited by member 14 Oct 2020 at 14:37  | Reason: Not specified

User
Posted 14 Oct 2020 at 14:46
Good job you bought that pushbike!

Loads of us here lobby for regular prostate cancer testing over 50, including all our medics, but it falls on deaf ears at the NHS, who would sooner pay for treatment to medical migrants who pitch up here from wherever and the NHS pays the bill!

Cheers, John.
User
Posted 14 Oct 2020 at 15:46

That bike certainly has paid for itself!


In my case I think screening at 45 would have been more beneficial as they may have caught it earlier on.

User
Posted 14 Oct 2020 at 21:38

Originally Posted by: Online Community Member


No family history and no symptoms prior to the saddle soreness.



We're twins. I found out exactly the same way and also at the age of 50. Severe perineal pain led to a week out of the saddle, during which time I decided to get checked out "just in case". Still T2, but was getting very close to the edge by the time they removed my prostate in June.


Hope your treatment works out well. And enjoy the bike. What did you get?

_____


Two cannibals named Ectomy and Prost, all alone on a Desert island.


Prost was the strongest, so Prost ate Ectomy.

User
Posted 14 Oct 2020 at 23:42
Your treatment is cutting edge so you are defo getting s good shot at a long remission..

User
Posted 15 Oct 2020 at 07:55

Thanks alex_cycles, thought I was the only one with the cycle story.  Unbelievable that we were both 50 at the time! Twins we are :)  I am a bit nervous getting back on the bike now, missus just wants me to get rid of it, but that's just not going to happen :)


I am confident that I will build up the courage soon enough to get back on the saddle.


 


b.t.w.  Its a Giant TCR Advanced

User
Posted 15 Oct 2020 at 16:35

Should be OK to cycle, but each case is different, so consult your doctors. Might be a good idea to get hold of a saddle with a large perineal cutout and/or make sure you sit back on the saddle using your sit bones and not putting too much pressure on the perineum. I use a Specialized sitero (good for time-trial position, but I use it all the time). There are lots of different sorts to choose from. There's a few threads on here where the subject has been discussed.

_____


Two cannibals named Ectomy and Prost, all alone on a Desert island.


Prost was the strongest, so Prost ate Ectomy.

User
Posted 15 Oct 2020 at 19:04

I was diagnosed in March this year at 59 yrs.


T3bN1M1 same as yourself lymph nodes and hip bone PSA 78. 
Due to COVID rearing it’s head didn’t get chemo. Bicalutamide followed by Prostap injections now on abiraterone (no chemo still)


I start radiotherapy 1st week November so a rough idea of timeline depending where you are


Found out lots on this forum, my only symptom was getting up to pee at night otherwise healthy


wishing all the best


 

Edited by member 15 Oct 2020 at 19:05  | Reason: Not specified

User
Posted 15 Oct 2020 at 19:15

Was covid the only reason you were not offered Chemo?  I was told that chemo is a treatment that could be used further down the line if and when needed?

User
Posted 15 Oct 2020 at 19:52
My Onco told me the main reason they are substituting abiraterone for chemo is because chemo drastically weakens the immune system, consequently heightening the risk of a fatal Covid19 infection.
User
Posted 15 Oct 2020 at 19:56

Yes COVID was given as the reason, my oncologist put me forward for abiraterone it had to be decided by a panel as was commented earlier it’s costly. It had only recently been passed to use as an early treatment option I believe.


My Psa is at 0.1 now

User
Posted 16 Oct 2020 at 07:58

Hi CBR


PSA of 0.1 is excellent.  Thank you for providing your timeline, it gives me a good idea of what is coming my way.


Loss of Libido is becoming an issue for me in the last couple of weeks, I will speak to Oncologist at next meeting for some help.

User
Posted 19 Oct 2020 at 23:12

Yours sounds similar to my case although Your PSA much higher and I am N0M2. Treatment options offered very similar


Started decapeptyl 2 months ago and Chemo due to start in next week. This will be followed by RT next summer. I’m interested that you are offered Enzalutamide as my Onco was not sure when best to do RT if I went down that route.


I have also been accepted on the ATLANTA trial which I think you may be eligible for If interested


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


 

User
Posted 20 Oct 2020 at 09:09

Originally Posted by: Online Community Member


As to radiotherapy, I may be wrong but you may get just 6 fractions opposed to what the above post indicates, I suggest you check with your doctor. Usually you have more if you are deemed cureable but then you would not usually have chemo/enzaclutamide so not sure what they have indicated?



 Certainly I believe this was true until very recently but more and more centres seem to be coming to the conclusion that it is worth treating advanced cases with upfront radiotherapy if there are only a few sites where it has spread.


I have mets in pelvis and one rib have been offered chemo followed by 20 fractions total of 55Gy

User
Posted 20 Oct 2020 at 18:44

Originally Posted by: Online Community Member


I have also been accepted on the ATLANTA trial which I think you may be eligible for If interested


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



 


I thought that was closed to new trialists?


 


Damn, just seen one of the eligibility factors is 6 months or less since dx 😕

Edited by member 20 Oct 2020 at 18:51  | Reason: Not specified

Good luck to everyone coping with the insidious big C

User
Posted 20 Oct 2020 at 19:21

Thank you, I will speak to the Oncologist at my next meeting which is less than 3 weeks away to see what her thoughts and views are on the trial.

User
Posted 20 Oct 2020 at 19:40

Originally Posted by: Online Community Member


Originally Posted by: Online Community Member


I have also been accepted on the ATLANTA trial which I think you may be eligible for If interested


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



 


I thought that was closed to new trialists?



 


All of the local centres are closed due to Covid but they are still recruiting at Imperial College I believe unless it has changed in the last fortnight. I contacted them directly to get information.

User
Posted 22 Oct 2020 at 09:52

Originally Posted by: Online Community Member
All of the local centres are closed due to Covid but they are still recruiting at Imperial College I believe unless it has changed in the last fortnight. I contacted them directly to get information.


My reading of it (and I may be wrong) is up front chemo excludes acceptance? I will email the contact address just to confirm, unless one of the PCUK folks knows for certain?

Good luck to everyone coping with the insidious big C

User
Posted 22 Oct 2020 at 11:02
Jay Kay and JasperM my oh was diagnosed in March with advanced pc aged 53. He was offered the option of chemotherapy or enzaclutamide. I think they were unsure about whether the chemo would be disrupted and said that the Nice guidelines were offering the latter as an alternative at that moment in time. We did a lot of research and went for chemo. He’s just finished his sixth and final and they’ve now said they’ll do six rounds of ‘Low-dose’ radiotherapy before Christmas. The oncologist said this is the current thinking with treatment for advanced disease.
User
Posted 22 Oct 2020 at 11:14

Thank you Skye28. I feel like I am now armed with quite a few questions for my next meeting with the Oncologist.

Edited by member 22 Oct 2020 at 11:16  | Reason: Not specified

 
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