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PSA starting to rise after ERBT

User
Posted 03 Jul 2019 at 10:55

Quick precis - more details on my profile - but I was diagnosed with Pca in December 2015. Gleason 4 +3 and PSA at 7.1 - T2B I think.


Opted for 20 sessions of ERBT - this was experimental but being used more widely now. Fewer but higher doses and these targeted by the use of gold implants into the prostate. This was done in May 2016 with 6 months hormone therapy starting in January 2016 and ending in July that year - bicalutamide.


I have had 3 successive rises and the PSA test taken on 13th June was 2.3. At Clatterbridge on the Wirral where I had my treatment, they start further tests/scans/investigations if and when your PSA rises to 2ng above the nadir. I have only half an Ng to play with if that makes sense.


Seems pretty clear, though, that the Pca is back. I am now on 3 monthly PSA checks so will have one in October.


But, hey ho, I reached 70 in October last year. Three score years and ten so, psychologically, I see every day of life now as a bonus. An old friend of mine died in May at 68 of a heart attack after a lifetime of apparent good health so I am counting my blessings.


In terms of my outlook, I guess at some point I'll need to make a choice as to whether to accept anymore treatment. A lifetime on bicalutamide does not appeal.

User
Posted 03 Jul 2019 at 10:55

Quick precis - more details on my profile - but I was diagnosed with Pca in December 2015. Gleason 4 +3 and PSA at 7.1 - T2B I think.


Opted for 20 sessions of ERBT - this was experimental but being used more widely now. Fewer but higher doses and these targeted by the use of gold implants into the prostate. This was done in May 2016 with 6 months hormone therapy starting in January 2016 and ending in July that year - bicalutamide.


I have had 3 successive rises and the PSA test taken on 13th June was 2.3. At Clatterbridge on the Wirral where I had my treatment, they start further tests/scans/investigations if and when your PSA rises to 2ng above the nadir. I have only half an Ng to play with if that makes sense.


Seems pretty clear, though, that the Pca is back. I am now on 3 monthly PSA checks so will have one in October.


But, hey ho, I reached 70 in October last year. Three score years and ten so, psychologically, I see every day of life now as a bonus. An old friend of mine died in May at 68 of a heart attack after a lifetime of apparent good health so I am counting my blessings.


In terms of my outlook, I guess at some point I'll need to make a choice as to whether to accept anymore treatment. A lifetime on bicalutamide does not appeal.

User
Posted 05 Feb 2020 at 15:30

Yes - I'll update regularly Steve. The interesting thing was when the oncologist showed me the results of the PET scan on her laptop. 3 little green points of light. Interestingly the area round the prostate itself was completely clear so the initial treatment had evidently done a decent job. The key thing was this lymph node involvement was all above the prostate so the maximum pelvic dose of radiotherapy didn't apply and this opens the door for the SABR treatment which is similar to cyber knife in that very high doses are aimed at a very small area.


I was reflecting the other day that one's thinking can become a bit fixed. I was in the mindset that radiotherapy was a non starter because of this maximum pelvic dose thing. Clearly that would have applied had the cancer been around the prostate itself but my situation is not uncommon. The dose painting treatment I had was also a factor in that the original treatment was designed to spare surrounding tissue.

User
Posted 03 Jul 2019 at 12:08

My friend was on Bicalutamide for two years before it stopped working - the cancer became resistant to it. His urologist said he did very well on it, as it usually only lasts for 12 to 18 months. So, unless you have a terminal prognosis within that time frame, you are unlikely to be taking it for the rest of your life😉.


My friend (age 87) is now doing very well on Diethylstilbestrol (patented in 1947 for menopausal women).


He must be the luckiest man in Britain, as he had no side-effects whatsoever from his various hormone therapies over the last five years!


Best of luck with your ongoing treatment.


Cheers, John.

Edited by member 03 Jul 2019 at 14:03  | Reason: Not specified

User
Posted 03 Jul 2019 at 18:51

Pete,


The breast problem with bicalutamide is well known. There are a couple of options:
Tamoxifen works for around 70% of people. It is contra-indicated if you are at risk of DVT or have cardio issues. What dose is your brother on? NICE recommends 20mg twice a week. You can go up to 20mg/day, but should get your liver function monitored to make sure your liver is happy with tamoxifen, see https://community.prostatecanceruk.org/posts/t21453-Side-effects-of-bicalutamide-tamoxifen-treatment#post219214
The other is single shot radiotherapy blast to breast buds. Works in 50% of cases.


There are other hormone treatments, such as Prostap and Zoladex.
Breast growth can happen on these, but it's less frequent. (I had it on bicalutamide, but so far, not on Zoladex).

Edited by member 03 Jul 2019 at 18:52  | Reason: Make link work

User
Posted 16 Jul 2019 at 15:34
Some oncos would put you back on HT at 5.0 while others would wait until it gets to 10 or 20. I went with dad a few months ago to discuss his pA rise again, but the specialist's view was that the rate of increase is more indicative than the actual number - since dad's PSA doubling time is about 18 months, he is not going to have HT unless it gets to 6 months or less.

As already said above, you shouldn't assume you would be put on bicalutimide anyway - it is more likely to be Prostap or Zoladex when you do get to that stage.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 17 Jul 2019 at 14:08

Hi Pete,


I'm now having to have HT again - see link below and check out my profile how my PSA results have risen.


Arthur


https://community.prostatecanceruk.org/posts/t21462-Oh-dear---back-on-Hormone-Therapy

Edited by member 17 Jul 2019 at 14:41  | Reason: Not specified

User
Posted 24 Sep 2019 at 16:22
I think if you were my dad I would be supprting you all the way on this - for the time being at least. If and when you do get to the stage of reintroducing hormone treatment, just make it clear that you want Prostap, Decapeptyl or Zoladex and will only agree to bical for the inital tumour flare.

No-one can say how long until you become terminal, particularly without the details of the dates / numbers of the tests prior to this June when you hit 2.3 - as I said above, it is when the doubling time goes to less than 6 months that treatment becomes a good idea and a doubling time of 6 weeks or less is generally very bad news. Conversely, my father-in-law died with a PSA that was falling rather than rising so it isn't an exact science.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 09 Oct 2019 at 15:57

Sorry to read your PSA is still rising. Are you more than 2 above nadir now?


I would have thought an mpMRI would be in order soon?


Best wishes,


 

Ido4

User
Posted 09 Oct 2019 at 17:05

Originally Posted by: Online Community Member


Sorry to read your PSA is still rising. Are you more than 2 above nadir now?


I would have thought an mpMRI would be in order soon?


Best wishes,


 



Yes I am. Oddly enough I had a severe episode of back pain late last year although it was induced by movement rather than being present all the time. My GP said he didn't take chances with anybody with a Pca diagnosis so I had an MRI scan of the spine - it was clear. I'll have to see what the oncologist says. I gather different oncologists take different views about when to resume treatment and whether any spread would show up on a scan. In my older brother's case it was when he got to over 7 ng but he was treated at a different centre. It's hard to know what to feel. I can't say I feel fear or that I am deeply emotional - more a sense of weary resignation. Others have to put up with far worse and I've made it into my 70s.

User
Posted 09 Oct 2019 at 19:47

Hi Pete ,
My psa started to rise 2 and 1/2 years ago and when it got to 3.1 I had a PET/CT SCAN in the Royal Marsden
Turned out I had three small tumours ,by now it was 4.6 a friend on here suggested early Chemo I had six sessions as well as going back on Prostap that was two years ago they are now talking about IHT in the New year 
Please read my Profile 
Good luck ,  Pete you think like me three score and ten
Regards Barry

Edited by member 09 Oct 2019 at 19:49  | Reason: Not specified

User
Posted 10 Oct 2019 at 11:55
Good luck Pete. I too am off for full body CT and Bone scan end of this month. My psa is now 190 on zero treatment. Don’t over worry it yet as I’m 4 1/2 yrs post op with constantly rising psa , yet 2 PET scans and multiple CT and Bone scans have shown zero progression. Technically I’m still only locally advanced. Good luck

If life gives you lemons , then make lemonade
User
Posted 18 Oct 2019 at 15:33

There is a major shortage of radiologists who do mpMRI prostate scans.


The hope is that AI (Artificial Intelligence) will take this over in time. It is already taking over some other radiology areas.

User
Posted 18 Oct 2019 at 17:10

Originally Posted by: Online Community Member


I am having my bone scan this Monday (21st) - hadn't fully appreciated that it is a 4 hour job although once the dye has been injected they say I can leave the hospital for 2 hours and come back for X Rays. MRI scan is not until 19th of November and I also await a date for the CT scan.



When I had my bone scan, they injected me with the radioactive tracing agent, and we repaired to the nearby pub where the parking is free, unlike the NHS hospital.


I returned after two or three hours, and the whole body scan took about twenty minutes, and Her Loveliness was allowed to sit next to me, as I was radioactive, not the whole room!


Best of luck.


Cheers, John. 

User
Posted 04 Dec 2019 at 11:21

Great news Pete. Hope you and your loved ones have a fantastic festive period. :-)


simon

User
Posted 04 Dec 2019 at 11:28
Good news Pete. I’ve been compartmentalising my life too into 6 month blocks between full scans. And I’m 4 1/2 yrs treatment free now. I’ve loved the six month breaks and almost forget I had cancer at all until the next lot. I’m in the sh*t now though and in permanent panic I guess. But still I have Xmas clear , repeat scans end Jan and then treatment start at last Feb it seems. And I still feel 100%. I hate this disease ! Enjoy every minute.

If life gives you lemons , then make lemonade
User
Posted 04 Dec 2019 at 11:46
That's really good news, Pete. Have a great Christmas!

Best wishes,

Chris
User
Posted 04 Dec 2019 at 16:12

Good news Pete. Enjoy the festivities.


 

Ido4

User
Posted 22 Jan 2020 at 14:08
In the circumstances, I think that is absolutely the best news you could have hoped for. It is the same route John's onco has said he will take in this situation.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 22 Jan 2020 at 18:46

I agree this is the best outcome in the circumstances. Hope the SABR does the job.

Ido4

User
Posted 31 Jan 2020 at 14:27

Hi Pete


Sorry to read about your journey and your current situation, on the flip side things don't seem quite as bad as you might have first feared (I think?), although the failure with the original RT is, of course, a major disappointment.


Your story and original diagnosis are similar to mine (cT2c, MRI T3bN0Mo, Gleason 4+3, PSA 27.9), although your subsequent treatment differed as I had 7.5 wks of RT following 8 months of Casodex.


I am in a similar situation with a failure some 9 yrs after my original journey started in 2010 with a PSA reading of 12.8 taken in Nov last year (interestingly it has subsequently risen to 13.2 since).


Bone scans, MRI & PET scan thankfully show no spread outside the Prostate but a recurrence of T3b with two areas one in the Prostate & the other in the left seminal vesicle (sounds like a contradiction but that's how the Urologist described it, RE spread outside the Prostate.)


PS: I sympathise and empathise RE: HT, it sucks!


Anyway I don't want to derail the thread so I will be following with interest and lets hope things turn out in a positive way, all the best


 


 


 


 

User
Posted 05 Feb 2020 at 21:48
It all sounds quite hopeful, Pete. Keeping my fingers crossed for you. I've seen entirely too much of Clatterbridge myself!

Very best wishes,

Chris
User
Posted 06 Mar 2020 at 20:36

So today was the final SABR session of 9 over 3 weeks. 3 lymph nodes treated. Quick update on side effects. From the SABR treatment, although I was warned about possible bowel issues, nothing so far. Tiredness? Well OK except yesterday, about 2 pm, I felt that massive tiredness that so many will be familiar with. In short it hit me like a train. I retired to the bedroom, lay down and was out for 2 hours. 


In the background, of course, there is the hormone treatment (150 mg Bicalutamide Daily). Libido? That's gone after about a month. The other issue is the Tamoxifen - this is covered in more detail in a thread about exercise that I started in the Living With Prostate Cancer section. My oncologist prescribed 1 x 20 mg tablet daily. Spooked by reports of fatty liver disease, the one tablet a week NICE guidelines and reports of side effects, I have been taking one every 2 or 3 days but the dreaded breast pain is starting so I have gone on to one a day for now. Slight metallic taste which is quite common but, otherwise, no issues.


My brother was prescribed one per week as per NICE guidelines - as much use as a chocolate fireguard and all the evidence indicates that this is the case.  He is suffering badly from gynecomastia. How we deal with this issue really needs gripping. The daily dose of tamoxifen works according to any number of studies.


4 weeks now to first review and PSA test.


To be continued.

User
Posted 08 Jul 2020 at 12:06
Great update Pete
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 08 Jul 2020 at 12:07
Great result Pete, delighted for you.
User
Posted 08 Jul 2020 at 13:31

Great news Pete. 

Ido4

User
Posted 16 Dec 2020 at 15:19

That’s great to hear Pete.  Enjoy Christmas and all the best for 2021.


Angex

User
Posted 17 Dec 2020 at 16:31

Great to hear Pete. 

Ido4

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User
Posted 03 Jul 2019 at 11:50
Sorry! Should be EBRT not ERBT!!
User
Posted 03 Jul 2019 at 11:58

I would push to get a PET scan, and maybe a bone scan, to try and find out where it is.


If it's just one or two lymph nodes outside the area previously radiated, then you might be able to have some targeted radiation and remain on a curative path (I think it depends if they can do that without any areas exceeding max lifetime radiation, which the previous RT will have already given you in the targeted areas).


The PET scan is more likely to find it the higher your PSA is, so in that sense, there's no hurry, although you don't want to wait so long it moves further afield. Having only had 6 months on HT (which is very short by current standards for primary RT treatment), it's unlikely to be anywhere close to being castrate resistant.


Anyway, wishing you all the best.

User
Posted 03 Jul 2019 at 12:08

My friend was on Bicalutamide for two years before it stopped working - the cancer became resistant to it. His urologist said he did very well on it, as it usually only lasts for 12 to 18 months. So, unless you have a terminal prognosis within that time frame, you are unlikely to be taking it for the rest of your life😉.


My friend (age 87) is now doing very well on Diethylstilbestrol (patented in 1947 for menopausal women).


He must be the luckiest man in Britain, as he had no side-effects whatsoever from his various hormone therapies over the last five years!


Best of luck with your ongoing treatment.


Cheers, John.

Edited by member 03 Jul 2019 at 14:03  | Reason: Not specified

User
Posted 03 Jul 2019 at 12:37

I was talking with a senior research nurse at The FOPS support group. She said bicalutamide as an addition when cancer becomes resistant to an LHRH drug usually doesn't last 6 months, and they tend not to bother with it anymore, and go straight to the more advanced drugs.


However, bicalutamide as a primary HT - that lasts much longer than the 6 months, but she didn't say how long.


Pete48, if they put you back on HT, it might not be bicalutamide, but a LHRH HT instead. Although side effects are broadly similar, the ones you actually get may be different. Bicalutamide seems to be particularly potent at causing breast growth, more so than the other HT drugs, but they can all do it.

User
Posted 03 Jul 2019 at 14:25

Thanks for the input so far guys. My desire to avoid bicalutamide (if/when it comes to that) follows on from my brief experience in 2016 but also my brother. He's been on it for 2 years now after his PSA started rising after high dose brachytherapy. It's the breast enlargement and soreness that is getting to him only partially relieved by tamoxifen. 


Purely by co-incidence, he is going to see the oncologist next week to discuss progress.

User
Posted 03 Jul 2019 at 18:51

Pete,


The breast problem with bicalutamide is well known. There are a couple of options:
Tamoxifen works for around 70% of people. It is contra-indicated if you are at risk of DVT or have cardio issues. What dose is your brother on? NICE recommends 20mg twice a week. You can go up to 20mg/day, but should get your liver function monitored to make sure your liver is happy with tamoxifen, see https://community.prostatecanceruk.org/posts/t21453-Side-effects-of-bicalutamide-tamoxifen-treatment#post219214
The other is single shot radiotherapy blast to breast buds. Works in 50% of cases.


There are other hormone treatments, such as Prostap and Zoladex.
Breast growth can happen on these, but it's less frequent. (I had it on bicalutamide, but so far, not on Zoladex).

Edited by member 03 Jul 2019 at 18:52  | Reason: Make link work

User
Posted 16 Jul 2019 at 14:59

Just thinking a bit more about my latest PSA reading, I reread some of Patrick Walsh's book "Guide To Surviving Prostate Cancer" and he devotes some time to the issue of bio chemical recurrence and at what stage you start a fresh round of treatment - especially hormone treatment. He seems to be arguing that there is no need to leap straight back into this, or into it for the first time. Given the QOL issues, and on the assumption that it hasn't yet shown up on any scans, he argues that, if the cancer is slow growing, then hormone therapy can wait.


Would I be right in thinking that a period of "active surveillance" would follow the first sign of treatment failure?

User
Posted 16 Jul 2019 at 15:34
Some oncos would put you back on HT at 5.0 while others would wait until it gets to 10 or 20. I went with dad a few months ago to discuss his pA rise again, but the specialist's view was that the rate of increase is more indicative than the actual number - since dad's PSA doubling time is about 18 months, he is not going to have HT unless it gets to 6 months or less.

As already said above, you shouldn't assume you would be put on bicalutimide anyway - it is more likely to be Prostap or Zoladex when you do get to that stage.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 17 Jul 2019 at 07:32
I doubt anyone can be more active at surveying than yourself. Make sure you are happy with your medical professionals but keep researching and questioning.
User
Posted 17 Jul 2019 at 14:08

Hi Pete,


I'm now having to have HT again - see link below and check out my profile how my PSA results have risen.


Arthur


https://community.prostatecanceruk.org/posts/t21462-Oh-dear---back-on-Hormone-Therapy

Edited by member 17 Jul 2019 at 14:41  | Reason: Not specified

User
Posted 24 Sep 2019 at 15:30
Update. I went to the hospital today for another PSA test. I have a telephone appointment with the Advanced Nurse Practitioner at Clatterbridge on the 9th of next month when the result will be known.

I just thought I'd share a few thoughts. I am, by nature, a pessimist and I think I always expected the treatment to fail. The fact that the PSA has risen time after time without ever stabilizing confirmed me in that view even if the team treating me were unconcerned initially. Not only that but my older brother's treatment has failed as well (although he was gleason 9).

On the other hand, I suppose one could argue that failure might be a bit harsh. It will certainly have kicked the can down the road for a bit and I've had 3 years treatment free.

I'm 71 next month and I am not at all sure I would accept further treatment. Certainly not bicalutamide and this is what my brother was put on by his oncologist at the Christie (in Manchester) when his cancer recurred. I would have to do some sort of cost benefit analysis. How soon would it become terminal if untreated for example?

I think quality of life is so important at this stage so that's the decision I will have to make along with every other prostate cancer patient who doesn't get cured.
User
Posted 24 Sep 2019 at 16:22
I think if you were my dad I would be supprting you all the way on this - for the time being at least. If and when you do get to the stage of reintroducing hormone treatment, just make it clear that you want Prostap, Decapeptyl or Zoladex and will only agree to bical for the inital tumour flare.

No-one can say how long until you become terminal, particularly without the details of the dates / numbers of the tests prior to this June when you hit 2.3 - as I said above, it is when the doubling time goes to less than 6 months that treatment becomes a good idea and a doubling time of 6 weeks or less is generally very bad news. Conversely, my father-in-law died with a PSA that was falling rather than rising so it isn't an exact science.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 09 Oct 2019 at 15:02

Unfortunately the steady rise in my PSA continues. It is now 3 ng. I spoke to the advanced nurse practitioner at Clatterbridge just 30 minutes ago and my oncologist will look at the upward trend and decide where to go from there. I'll get another call in a couple of days. We are now on 4 successive rises so it doesn't look good.


What the nurse said, and this chimes with my reading of this and other sites that any recurrence might not be immediately visible so it wasn't a given that I'd be having scans.


Watch this space as they say.

User
Posted 09 Oct 2019 at 15:57

Sorry to read your PSA is still rising. Are you more than 2 above nadir now?


I would have thought an mpMRI would be in order soon?


Best wishes,


 

Ido4

User
Posted 09 Oct 2019 at 17:05

Originally Posted by: Online Community Member


Sorry to read your PSA is still rising. Are you more than 2 above nadir now?


I would have thought an mpMRI would be in order soon?


Best wishes,


 



Yes I am. Oddly enough I had a severe episode of back pain late last year although it was induced by movement rather than being present all the time. My GP said he didn't take chances with anybody with a Pca diagnosis so I had an MRI scan of the spine - it was clear. I'll have to see what the oncologist says. I gather different oncologists take different views about when to resume treatment and whether any spread would show up on a scan. In my older brother's case it was when he got to over 7 ng but he was treated at a different centre. It's hard to know what to feel. I can't say I feel fear or that I am deeply emotional - more a sense of weary resignation. Others have to put up with far worse and I've made it into my 70s.

User
Posted 09 Oct 2019 at 19:47

Hi Pete ,
My psa started to rise 2 and 1/2 years ago and when it got to 3.1 I had a PET/CT SCAN in the Royal Marsden
Turned out I had three small tumours ,by now it was 4.6 a friend on here suggested early Chemo I had six sessions as well as going back on Prostap that was two years ago they are now talking about IHT in the New year 
Please read my Profile 
Good luck ,  Pete you think like me three score and ten
Regards Barry

Edited by member 09 Oct 2019 at 19:49  | Reason: Not specified

User
Posted 10 Oct 2019 at 10:40

Things moving quite quickly now. Just received a call from the nurse at Clatterbridge. They are organizing a CT scan and a bone scan. I will then see the oncologist in 4 to 6 weeks to get/discuss the results. I've also been asked to have another PSA test ahead of my appointment.

User
Posted 10 Oct 2019 at 11:55
Good luck Pete. I too am off for full body CT and Bone scan end of this month. My psa is now 190 on zero treatment. Don’t over worry it yet as I’m 4 1/2 yrs post op with constantly rising psa , yet 2 PET scans and multiple CT and Bone scans have shown zero progression. Technically I’m still only locally advanced. Good luck

If life gives you lemons , then make lemonade
User
Posted 18 Oct 2019 at 15:02

I am having my bone scan this Monday (21st) - hadn't fully appreciated that it is a 4 hour job although once the dye has been injected they say I can leave the hospital for 2 hours and come back for X Rays. MRI scan is not until 19th of November and I also await a date for the CT scan.


Just a little comment on scans generally. Little item in the "I" newspaper today. The UK has a problem with a lot of ageing equipment in the radiology field but also, and more importantly, a lack of radiologists. Here we have 7 radiologists per 100,000 people compared to 12 per 100,000 people as an EU average. Admittedly the article was written in the context of lung cancer and the tragic early death of Leah Bracknell (ex Emmerdale star) at 55.


Not something that gets a lot of headlines and I certainly wasn't aware of it. Might drop an email to my MP. It's a vital issue for all cancer patients.

User
Posted 18 Oct 2019 at 15:33

There is a major shortage of radiologists who do mpMRI prostate scans.


The hope is that AI (Artificial Intelligence) will take this over in time. It is already taking over some other radiology areas.

User
Posted 18 Oct 2019 at 17:10

Originally Posted by: Online Community Member


I am having my bone scan this Monday (21st) - hadn't fully appreciated that it is a 4 hour job although once the dye has been injected they say I can leave the hospital for 2 hours and come back for X Rays. MRI scan is not until 19th of November and I also await a date for the CT scan.



When I had my bone scan, they injected me with the radioactive tracing agent, and we repaired to the nearby pub where the parking is free, unlike the NHS hospital.


I returned after two or three hours, and the whole body scan took about twenty minutes, and Her Loveliness was allowed to sit next to me, as I was radioactive, not the whole room!


Best of luck.


Cheers, John. 

User
Posted 04 Dec 2019 at 11:08

To the oncologist appointment this morning. All scans, bone, CT and MRI completely clear. I'll take that for now. My PSA is 3.3 ng. No treatment indicated at this stage but they are arranging for me to have a PET scan which should be able to find the thing (possibly some lymph node involvement) and I will see the oncologist again in February to discuss the results. Not many of these scanners around apparently so I'll have to go to the Royal Liverpool for this.


Don't know if this is a self defence mechanism but I've become quite good at compartmentalizing things. I see the next 2 months (including Christmas of course) as a bit of a free hit - no treatment so extending my treatment free period to almost 4 years.

User
Posted 04 Dec 2019 at 11:21

Great news Pete. Hope you and your loved ones have a fantastic festive period. :-)


simon

User
Posted 04 Dec 2019 at 11:28
Good news Pete. I’ve been compartmentalising my life too into 6 month blocks between full scans. And I’m 4 1/2 yrs treatment free now. I’ve loved the six month breaks and almost forget I had cancer at all until the next lot. I’m in the sh*t now though and in permanent panic I guess. But still I have Xmas clear , repeat scans end Jan and then treatment start at last Feb it seems. And I still feel 100%. I hate this disease ! Enjoy every minute.

If life gives you lemons , then make lemonade
User
Posted 04 Dec 2019 at 11:46
That's really good news, Pete. Have a great Christmas!

Best wishes,

Chris
User
Posted 04 Dec 2019 at 16:12

Good news Pete. Enjoy the festivities.


 

Ido4

User
Posted 14 Jan 2020 at 11:42

So I had my PET scan at the Royal in Liverpool on Friday 3rd January. To recap, this is the 4th scan I've had since my PSA became a cause for concern (more than 2 above nadir - 4 successive rises). Bone, MRI and CT were all clear.


Just reflecting how you become hypersensitive to anything out of the ordinary. My next onco appointment arrived in the post today (at which I will find out the extent of the recurrence assuming the PET scan has done its job). It's next Wednesday at 08.45 am.


I'm thinking "hey, all my other appointments were mid morning, what is the significance of this early one?"


I'm sure I'm not alone in this. Anyway, it will be interesting to see what treatment is proposed. Will I be "persuaded" to start HT immediately, will they hold off until it reaches double figures?


I'll report next week.

User
Posted 22 Jan 2020 at 11:39

So, early appointment with the oncologist this morning. I knew the bad news because they had primed me to expect that the cancer had returned despite the bone, MRI and CT scans all being clear.


So the better/good news is that the PET scan has detected involvement in 3 lymph nodes at a very small level - the tumours are tiny. The better news still is that she thinks there is a treatment pathway that will push the cancer back and possibly even cure it at the second time of asking. The lymph nodes are all above the prostate so maximum dose to the pelvis is not an issue (I also had dose painting radiotherapy which minimises the dose to peripheral areas anyway). I will now have planning scans (MRI and CT) and then 3 extremely high doses of radiotherapy directed at the lymph nodes. The downside is that she wants me to resume Hormone Therapy (I had 6 months in 2016 around the original EBRT). Recommendation is bicalutamide rather than injections. An Australian study had shown better outcomes if the RT was accompanied by HT. I don't start the HT until after the planning scans because they might shrink the tumours too much and they wouldn't be able to see them.


This form of radiotherapy is called SABR (it's not cyber knife) but has a similar purpose.


I'll take this. I was becoming resigned to the rest of my days on HT with no end in sight. Have to say I haven't seen or heard of this precise form of treatment following EBRT before.

User
Posted 22 Jan 2020 at 14:08
In the circumstances, I think that is absolutely the best news you could have hoped for. It is the same route John's onco has said he will take in this situation.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 22 Jan 2020 at 18:46

I agree this is the best outcome in the circumstances. Hope the SABR does the job.

Ido4

User
Posted 31 Jan 2020 at 11:17

So, everything is now in motion. Good news is that a PSA test done on 20th January shows it is steady at 3.3. I have a planning scan at Clatterbridge on Monday 3rd February - the onco did mention CT and MRI so not sure if both will be done on the same day but I have been advised to allow for being there for several hours.


The full plan is 30 Gy of radiation to each positive node (there are 3 on the left pelvic side) and 2 years on Bicalutamide with a side order of Tamoxifen for gynaecomastia (I did get this back in 2016 when I had six months on bica). She will tell me when to start the pills. She doesn't want me to start until after planning as the bica might shrink them too much and make accurate targeting impossible.


Interesting point is that there was no recurrence in or directly next to the prostate. It looks like the first raft of treatment did a good job. I'm just wondering if, technically, this isn't recurrence but evidence that a tiny amount of prostate cancer cells had escaped before my main treatment in 2016.


Forgot to mention in a previous post but she has advised me to cut down on carbs and up my exercise levels. She thinks I am "a little bit overweight" and I am just in the type 2 diabetes area.


Might have a "last supper" type celebration over the weekend to mark the end of dry January (only 2 small lapses - a half pint of beer and one glass of wine) - this will involve good food and wine! Bootcamp regime can start on Monday.

User
Posted 31 Jan 2020 at 14:27

Hi Pete


Sorry to read about your journey and your current situation, on the flip side things don't seem quite as bad as you might have first feared (I think?), although the failure with the original RT is, of course, a major disappointment.


Your story and original diagnosis are similar to mine (cT2c, MRI T3bN0Mo, Gleason 4+3, PSA 27.9), although your subsequent treatment differed as I had 7.5 wks of RT following 8 months of Casodex.


I am in a similar situation with a failure some 9 yrs after my original journey started in 2010 with a PSA reading of 12.8 taken in Nov last year (interestingly it has subsequently risen to 13.2 since).


Bone scans, MRI & PET scan thankfully show no spread outside the Prostate but a recurrence of T3b with two areas one in the Prostate & the other in the left seminal vesicle (sounds like a contradiction but that's how the Urologist described it, RE spread outside the Prostate.)


PS: I sympathise and empathise RE: HT, it sucks!


Anyway I don't want to derail the thread so I will be following with interest and lets hope things turn out in a positive way, all the best


 


 


 


 

User
Posted 03 Feb 2020 at 22:28

Couple of little snippets from today's planning session at Clatterbridge. I established that SABR stands for Stereotactical Ablative Radiotherapy. It is similar to Cyber Knife and is used in similar situations. I gather true Cyber Knife requires a specialized machine whereas SABR can be done with a conventional machine presumably cranked up to full volume and narrowly aimed.


An innovation today was the "bean bag" - This device, and it is indeed a bean bag but an inflatable one, helps to stop you moving. You lie on it and the team pull you and it about a bit until they've got you where they want you. They then let some of the air out and it become hard and shaped to your body. Ingenious.


They also used my old tattoos from 2016. I can't see them at all but the trained eye evidently can.

User
Posted 05 Feb 2020 at 00:46

Hi Pete, 


Just wanted to wish you the best of luck with this form of Radiotherapy.  


I'll be very interested in how it goes for you as it maybe something which could help me. 


Keep in touch with us. 


Steve 


 

User
Posted 05 Feb 2020 at 15:30

Yes - I'll update regularly Steve. The interesting thing was when the oncologist showed me the results of the PET scan on her laptop. 3 little green points of light. Interestingly the area round the prostate itself was completely clear so the initial treatment had evidently done a decent job. The key thing was this lymph node involvement was all above the prostate so the maximum pelvic dose of radiotherapy didn't apply and this opens the door for the SABR treatment which is similar to cyber knife in that very high doses are aimed at a very small area.


I was reflecting the other day that one's thinking can become a bit fixed. I was in the mindset that radiotherapy was a non starter because of this maximum pelvic dose thing. Clearly that would have applied had the cancer been around the prostate itself but my situation is not uncommon. The dose painting treatment I had was also a factor in that the original treatment was designed to spare surrounding tissue.

User
Posted 05 Feb 2020 at 21:48
It all sounds quite hopeful, Pete. Keeping my fingers crossed for you. I've seen entirely too much of Clatterbridge myself!

Very best wishes,

Chris
User
Posted 28 Feb 2020 at 15:27

I have now done 6 of the 9 SABR treatments. In terms of side effects from the RT I would say minimal so far although I am getting more tired. I learned a bit about how the treatment is planned and delivered on Monday this week. Each affected node is treated as a one off so node number one has 3 blasts of RT then, the following week, they move on to node number two. This means that there is a bit of last minute planning each Monday session so you are on the bed for a bit longer. They also call in "the physicists" presumably to check everything is ready to go. 


Final week starting next Monday so "the physicists" will be called in again. A lot more scribbling on your torso than I remember from my original treatment back in 2016 but I guess the treatment is more complex in terms of delivery.


I haven't noticed any massive side effects from the bicalutamide yet apart from tiredness. 

User
Posted 06 Mar 2020 at 20:36

So today was the final SABR session of 9 over 3 weeks. 3 lymph nodes treated. Quick update on side effects. From the SABR treatment, although I was warned about possible bowel issues, nothing so far. Tiredness? Well OK except yesterday, about 2 pm, I felt that massive tiredness that so many will be familiar with. In short it hit me like a train. I retired to the bedroom, lay down and was out for 2 hours. 


In the background, of course, there is the hormone treatment (150 mg Bicalutamide Daily). Libido? That's gone after about a month. The other issue is the Tamoxifen - this is covered in more detail in a thread about exercise that I started in the Living With Prostate Cancer section. My oncologist prescribed 1 x 20 mg tablet daily. Spooked by reports of fatty liver disease, the one tablet a week NICE guidelines and reports of side effects, I have been taking one every 2 or 3 days but the dreaded breast pain is starting so I have gone on to one a day for now. Slight metallic taste which is quite common but, otherwise, no issues.


My brother was prescribed one per week as per NICE guidelines - as much use as a chocolate fireguard and all the evidence indicates that this is the case.  He is suffering badly from gynecomastia. How we deal with this issue really needs gripping. The daily dose of tamoxifen works according to any number of studies.


4 weeks now to first review and PSA test.


To be continued.

User
Posted 08 Jul 2020 at 11:35

Bit of an update. Covid 19 put paid to an early post treatment PSA test. My first review was by phone and I was able to report that side effects from both the SABR treatment and the Bicalutamide were manageable. It was slightly odd not knowing what my PSA was.


Fast forward to a phone review with Clatterbridge this morning. PSA 0.1 so happy days although I am acutely aware that the  bicalutamide is a big factor here. The oncologist did say that the PSA result was "better than expected." I will now go back on to 6 monthly reviews with the advanced nurse practitioner (and, of course, regular PSA tests).


Side effects from the SABR are really minimal - flatulence being the main one but no diarrhoea or pain. The bicalutamide is causing the occasional mild hot flush and tiredness is an issue resolved by a mid afternoon nap. Gynaecomastia is very mild but I guess the tamoxifen is doing the job here.


I'll be on the Bicalutamide until January 2022. 

User
Posted 08 Jul 2020 at 12:06
Great update Pete
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 08 Jul 2020 at 12:07
Great result Pete, delighted for you.
User
Posted 08 Jul 2020 at 13:31

Great news Pete. 

Ido4

User
Posted 16 Dec 2020 at 14:58

Not posted on here for about 6 months but today is one of those good ones that everybody needs from time to time. It's 5 years since my original diagnosis and my PSA is 0.1 so no movement at all since July. I am halfway through a 2 year course of bicalutamide after SABR treatment in March this year to treat a recurrence in the lymph nodes (3 small lumps). Allowing for the fact that bicalutamide can disguise any growth in hormone resistant cells, I am still pretty chuffed.


Best wishes for the holiday season to everybody on these forums and to all the wonderful staff at Cancer Centres and Hospitals throughout the UK.

User
Posted 16 Dec 2020 at 15:19

That’s great to hear Pete.  Enjoy Christmas and all the best for 2021.


Angex

User
Posted 17 Dec 2020 at 16:31

Great to hear Pete. 

Ido4

 
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