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3 years post RP, one lymph node positive.

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User
Posted 23 Jan 2020 at 10:25

Hi all. My last post "Biochemical Recurrence What Next?" details our journey to where we are now, but briefly RP 2016, aged 53, T2C Gleason 6 with some of tumours upgrade to Gleason 7 after OP. Supposedly no break through (but close to wall so obviously did jump) and rising PSA since 0.3 last January with no joy from PSMA Pet Scan in the spring. We now have PSA of 0.6 (doubling time 8 months??) and received confirmation of cancer in just one Lymph Node in the pelvic region last week, after a (successful) PSMA Pet Scan in Heidelberg.


This seems to be better than having it in more than one (though maybe it is as yet undetectable in further nodes???) And definitely a lot better than having a bone metastases. From what I've read its not really considered a metastases any more in the sense that it's much more treatable and possibly curable. I'm a bit afraid to go digging too deeply! (Newer articles are definitely more optimistic but...!)


Has anybody else had this and what was the treatment?


We have our appointment on Tuesday and for the first time in this whole saga my husband is admitting to being worried. I'm seeing ADT mentioned all over the place, but my OH (and his Surgeon it seems) averse to this for him as his job is highly technical/mathematical and he can't afford any slowing down of cognitive ability which wouldn't affect most people in their jobs but it seems would affect what he does! Are there any other men here who were in this situation and how did it affect them?


Apart from ADT to shrink it, what are the other possible treatments? Can lymph nodes be surgically removed at this stage?


Do they do SRT on lymph nodes? And what sort of RT would be involved?


Is Chemo going to be mentioned?


Anybody else have this situation?


Any pertinent questions we should ask?


Thanks in advance! (Try not to scare me!!😏😏)


 


Misty


 

User
Posted 23 Jan 2020 at 13:52
In all likelihood they will offer salvage external beam IG (image guided) RT to the prostate bed and pelvic area, covering the lymph node if possible. He can have RT without HT but since all the research shows RT is more successful in combination with HT, it seems daft to put him through the RT with its side effects while not giving it the absolute best chance of working. Even 6 months would be worth doing.

John had a very technical fast paced job but I didn't see the HT have any impact on this apart from he needed a nap in the office a couple of times towards the end of the RT.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 23 Jan 2020 at 23:25

Misty


I,ve replied to your pm.


Your husband is relatively young.  With successful salvage treatment, he could have a lot more than ten years!


ulsterman

User
Posted 23 Jan 2020 at 13:51
Sounds like you will get salvage radiotherapy to the prostate bed + lymph nodes (depends where it's is?)

To have the best effect and chance of durable remission he will need short term ADT and possibly Chemo.
User
Posted 23 Jan 2020 at 15:17

I had ADT for 2 years 3 months or so plus salvage radiotherapy in March/April 2018.


My job was very demanding, I must admit it did affect my concentration levels but I could still teach up to 1st year University Physics with no real hassles due to the ADT.


I tired more easily and was exhausted by each weekend though.


 

Ido4

User
Posted 23 Jan 2020 at 17:30

Misty


A year after my prostatectomy, I had a slowly rising PSA and had a PSMA scan.  Cancer was found in 2 lymph nodes in the pelvic region.  I immediately started bicalutimide and three months into the bicalutimide, I started 33 cycles of radiotherapy.  I was on bicalutimide for 18 months altogether.


i got the results of my latest PSA test today - still <0.006, the lowest level the machine can measure.


I didn’t enjoy RT and HT, had a few complications, but look at the PSA - that’s a potentially curative result.  Your other half has every reason to fight.


As much as I disliked bicalutimide, I’d insist on it.  Recent trials seem to indicate that it can benefit men in your husband’s position.


ulsterman 

User
Posted 23 Jan 2020 at 17:52
The men on here that have recurrence after RT recently tend to be those whose oncologist said they didn’t need HT. There has been one research report suggesting it doesn’t make any difference. In the meantime, there are years and years of combined expertise and experience that RT is more successful if given with HT. In the meantime, research on breast cancer has shown that the longer the person has HT the less likely the breast cancer is to return; as a result, NICE is recommending women have up to 10 years of hormones. I know they are not the same cancer but they are closely related and since far more is spent on BCa research than PCa research, it does make me wonder what we are missing.

Your OH must do what he and his oncologist think best but I would not be particularly interested in what the urologist thinks as RT/HT usually isn’t his or her area of expertise.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 23 Jan 2020 at 22:33

In answer to your question I am just getting back to a kind of normal now, one year after my last PROSTAP 3 injection. (3/1/19)
It’s taken a while to clear from my system. I was on it for over 27 months.

Ido4

User
Posted 25 Jan 2020 at 11:49

Although much of the NHS is staffed by Indian doctors I am sure there are still clinicians left in India capable of reading and analysIng any scan.


Fortunately I am in no need of one presently, but if in future I do need one I will be having a holiday in India including a scan, sooner than pay £2600 to some place in England.


Cheers, John.

Edited by member 25 Jan 2020 at 11:55  | Reason: Not specified

User
Posted 26 Jan 2020 at 07:10

I had a full body MRI scan at Paul Strickland.


Because I was so interested in it, my consultant setup for me to meet the radiologist, and the radiologist went through it all with me again, explaining how he analysed it. I was fascinated, as you might imagine, and he liked that he actually saw a patient (from the outside) which they normally never do.


At the start, he checked back which scanner I'd been done on, because he said they all behave differently, and he takes that into account when analysing the scan. That's the sort of thing a radiologist wouldn't be able to do if just presented with a scan from somewhere else. When I asked about this, he also commented that if they scan me again, they will try to do it on the same scanner for better comparisons.


This was an MRI, not a PET scan, but it does not surprise me radiologists understand and account for the quirks of specific scanners they use when analysing the results.

User
Posted 18 Mar 2020 at 16:24
Your doubling time at the minute is about 13 months.

Stereotactic RT is also referred to as SBRT or SABRE - if the search function is working, you should be able to find a number of other members here that have had this.

Best to remove the consultant's name from your post :-/
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 19 Mar 2020 at 09:35
I put your results from Jan 19, April 19, Aug 19, Nov 19 and Jan 20 into a doubling time calculator - you can just google these.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 19 Mar 2020 at 10:46
Take the treatment of you can, and make sure he self isolates.
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User
Posted 23 Jan 2020 at 13:51
Sounds like you will get salvage radiotherapy to the prostate bed + lymph nodes (depends where it's is?)

To have the best effect and chance of durable remission he will need short term ADT and possibly Chemo.
User
Posted 23 Jan 2020 at 13:52
In all likelihood they will offer salvage external beam IG (image guided) RT to the prostate bed and pelvic area, covering the lymph node if possible. He can have RT without HT but since all the research shows RT is more successful in combination with HT, it seems daft to put him through the RT with its side effects while not giving it the absolute best chance of working. Even 6 months would be worth doing.

John had a very technical fast paced job but I didn't see the HT have any impact on this apart from he needed a nap in the office a couple of times towards the end of the RT.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 23 Jan 2020 at 15:17

I had ADT for 2 years 3 months or so plus salvage radiotherapy in March/April 2018.


My job was very demanding, I must admit it did affect my concentration levels but I could still teach up to 1st year University Physics with no real hassles due to the ADT.


I tired more easily and was exhausted by each weekend though.


 

Ido4

User
Posted 23 Jan 2020 at 16:03

Did you find once you completed the ADT that everything returned to normal?

User
Posted 23 Jan 2020 at 16:08

Hi Lyn. I thought there was an increasing belief that ADT while keeping the numbers down, could not be proven to prolong life? Is that in relation to ADT on it's own or all ADT do you know?? Our surgeon/urologist seems to be wary,, and loathe to use it on my husband but maybe things will change when we see him next week!

User
Posted 23 Jan 2020 at 17:30

Misty


A year after my prostatectomy, I had a slowly rising PSA and had a PSMA scan.  Cancer was found in 2 lymph nodes in the pelvic region.  I immediately started bicalutimide and three months into the bicalutimide, I started 33 cycles of radiotherapy.  I was on bicalutimide for 18 months altogether.


i got the results of my latest PSA test today - still <0.006, the lowest level the machine can measure.


I didn’t enjoy RT and HT, had a few complications, but look at the PSA - that’s a potentially curative result.  Your other half has every reason to fight.


As much as I disliked bicalutimide, I’d insist on it.  Recent trials seem to indicate that it can benefit men in your husband’s position.


ulsterman 

User
Posted 23 Jan 2020 at 17:50

Originally Posted by: Online Community Member


Misty


A year after my prostatectomy, I had a slowly rising PSA and had a PSMA scan.  Cancer was found in 2 lymph nodes in the pelvic region.  I immediately started bicalutimide and three months into the bicalutimide, I started 33 cycles of radiotherapy.  I was on bicalutimide for 18 months altogether.


i got the results of my latest PSA test today - still <0.006, the lowest level the machine can measure.


I didn’t enjoy RT and HT, had a few complications, but look at the PSA - that’s a potentially curative result.  Your other half has every reason to fight.


As much as I disliked bicalutimide, I’d insist on it.  Recent trials seem to indicate that it can benefit men in your husband’s position.


ulsterman 



Hi Ulsterman. That sounds very positive! What side-effects did bucalutimide have on you? Did it impair cognitive function? And did it cause gynaecomastia which my OH already has on one side and is terrified of exacerbating further. He really is of the opinion that life as himself for 10 years would be preferable to longer life with ADT side effects. Is it really as bad as it sounds?? As a woman in my 50s I put up with so much of that stuff...I feel like telling him to grow a pair....and I dont mean moobs😂😂. But I say nothing and let him figure it all out for himself....as a supportive partner should! I guess theres only so much you can take in at a time....at least he's progressed from his "I'm inclined not to have any treatment" phase😏😏🥴.

User
Posted 23 Jan 2020 at 17:52
The men on here that have recurrence after RT recently tend to be those whose oncologist said they didn’t need HT. There has been one research report suggesting it doesn’t make any difference. In the meantime, there are years and years of combined expertise and experience that RT is more successful if given with HT. In the meantime, research on breast cancer has shown that the longer the person has HT the less likely the breast cancer is to return; as a result, NICE is recommending women have up to 10 years of hormones. I know they are not the same cancer but they are closely related and since far more is spent on BCa research than PCa research, it does make me wonder what we are missing.

Your OH must do what he and his oncologist think best but I would not be particularly interested in what the urologist thinks as RT/HT usually isn’t his or her area of expertise.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 23 Jan 2020 at 17:56
I should have asked; now that recurrence has been confirmed, he is being referred to oncology, isn’t he?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 23 Jan 2020 at 18:35

Originally Posted by: Online Community Member
I should have asked; now that recurrence has been confirmed, he is being referred to oncology, isn’t he?


I dont know about oncologist! He did mention a radiologist before but that's not the same thing. We will see the urologist on Tuesday. Doesnt help that he agreed with my husband when he said he didnt want HT! My husband is adamant about that! We have been attending a private hospital but it's an hour away. I think the RT would be better conducted in our local university hospital. I will update here after Tuesday.

User
Posted 23 Jan 2020 at 22:33

In answer to your question I am just getting back to a kind of normal now, one year after my last PROSTAP 3 injection. (3/1/19)
It’s taken a while to clear from my system. I was on it for over 27 months.

Ido4

User
Posted 23 Jan 2020 at 23:25

Misty


I,ve replied to your pm.


Your husband is relatively young.  With successful salvage treatment, he could have a lot more than ten years!


ulsterman

User
Posted 24 Jan 2020 at 13:03
I trust you have a disc of the PSMA scan for scrutiny at the hospital where you are likely to have salvage RT. This might be by normal External Beam or SBRT depending on what they have and how they see it. When UCLH were presented with my PSMA scan they arranged for an MRI to follow it.

If you don't might saying, what is the present going rate for a PSMA scan in Heidelberg? It can be a bleak place in winter, although beautiful and inviting city in summer but perhaps you only briefly saw part of the hospital complex which is a couple or so miles from the city centre.
Barry
User
Posted 24 Jan 2020 at 13:28

Originally Posted by: Online Community Member
I trust you have a disc of the PSMA scan for scrutiny at the hospital where you are likely to have salvage RT. This might be by normal External Beam or SBRT depending on what they have and how they see it. When UCLH were presented with my PSMA scan they arranged for an MRI to follow it.

If you don't might saying, what is the present going rate for a PSMA scan in Heidelberg? It can be a bleak place in winter, although beautiful and inviting city in summer but perhaps you only briefly saw part of the hospital complex which is a couple or so miles from the city centre.


Yes Barry we have a disc, which we have forwarded to the urologist in advance of our appointment on Tuesday.


Heidelberg is a beautiful city. We stayed this time for 3 nights and went to an opera with the local orchestra/opera chorus which was fantastic!! We also walked the legs off ourselves (well by my standards which are pretty low in fairness😂😂). The weather was amazing and we drove to see some places nearby including a fabulous ancient fortified town called Dilsberg. Last time we went to see the castle but only stayed 2 nights.


I'm thinking it cost about €1500 for the scan but last time we got some of that refunded despite them doing it twice. This time they only needed to do it once as it finally showed up! We were told we had a 74% chance of seeing it this time at PSA of .6. Last time was 54% odds at 0.4. It's kind of weird that we had such a good time there....despite our reasons for travelling...but we decided to make the most of the excuse to go away!!

User
Posted 24 Jan 2020 at 16:40

That's a lot cheaper than The London Clinic - I paid £2600


Ulsterman

User
Posted 24 Jan 2020 at 18:12

Oh my goodness!! Can you get tax relief on that??

User
Posted 24 Jan 2020 at 19:04
I read a G-68 PET-PSMA scan is four hundred quid in India.

Cheers, John.
User
Posted 25 Jan 2020 at 01:28

If that is correct John, it is very reasonable but you have to remember the cost of labour there is very different to the advanced European countries and in the USA where medical treatment is more expensive. If I need another PSMA scan outside the NHS, I will seriously consider renewing my acquaintance with Heidelberg making it part of a holiday, as the scan is apparently much less expensive there now than in the UK.


Reverting to an earlier post, I had 8 months of HT which ended during my RT (in Heidelberg), I know I will be offered HT again shortly due to my rising PSA but will resist this for as long as I can by having more radical treatment instead if I possible. So I empathise with anybody who wants to avoid HT but at some stage, either in conjunction with something else or of itself it can be needed. I have wondered whether had I continued HT after my RT I would have been in a different situation to the one I am in now ('What if'?) but will never know. At least I have had some 12 years without some of the side effects of it!

Edited by member 25 Jan 2020 at 01:31  | Reason: Not specified

Barry
User
Posted 25 Jan 2020 at 01:50

Originally Posted by: Online Community Member


If that is correct John, it is very reasonable 



Here’s one for INR 14,000 = 150 quid! One can only think that scans at the likes of the Paul Strickland Centre, supposedly a charity, and costing £2600, charge what they think they can get away with!


Cheers, John.


https://www.houseofdiagnostics.com/product/psma-pet-ct-ga-68-psma/

Edited by member 25 Jan 2020 at 01:55  | Reason: Not specified

User
Posted 25 Jan 2020 at 10:29
The Indian price quoted will just be for the scan, the cost in England will usually include other things as well, such as the ‘reading’ and analysis of the scans. I suspect that once the report is emailed from India, the patient then has to find someone to interpret it?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 25 Jan 2020 at 11:49

Although much of the NHS is staffed by Indian doctors I am sure there are still clinicians left in India capable of reading and analysIng any scan.


Fortunately I am in no need of one presently, but if in future I do need one I will be having a holiday in India including a scan, sooner than pay £2600 to some place in England.


Cheers, John.

Edited by member 25 Jan 2020 at 11:55  | Reason: Not specified

User
Posted 25 Jan 2020 at 13:01

I am sure they can. My point was only that the analysis / diagnostics does not appear to be included in the base price.

Edited by member 25 Jan 2020 at 13:41  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 25 Jan 2020 at 17:42

Some countries keep their prices for scans and medical procedures low to attract International business, some becoming well known for specialising especially in specific areas, for example Hungary (where I had dental implants) and the Czech Republic, both countries being noted for dental procedures and the latter also for Proton Beam in Prague, where at least one of our forum members had treatment, I don't know how things are in India but I expect conditions have improved greatly since I was there many years ago. Then at the other end of the scale you have very expensive medical treatment in the USA varying considerably in cost throughout the country. When one hospital there was asked "why do you charge so much more for a xxxxx scan", the answer was "because we can".


This is a pitch by Heidelberg University where mention is made of it attracting patients Internationally. https://www.youtube.com/watch?v=2cRYaIJXbvI


 

Edited by member 25 Jan 2020 at 17:43  | Reason: Not specified

Barry
User
Posted 25 Jan 2020 at 20:05

Thanks all on the advice so far. Just to let you know that I was a bit under on the Heidelberg price!  We had to pay €1900 last time in advance but we got about €150 back even though they did two scans. This time we actually paid €2100 but will get some refunded when they make up the bill. Sorry I got it wrong!!

User
Posted 25 Jan 2020 at 23:21
Still cheaper than in the UK and from the originators of the 68 Gal PSMA scan. I am not surprised you are having a refund. They work on a system that stops health tourists skipping off without paying the full cost and is one that should be considered in the UK! It works like this. A department dedicated to the purpose establishes what the cost to the hospital is likely to be of various treatments to include just about everything the patient may need, down to x-rays, blood, bandages etc etc . They would then add to this admi, clinical and other costs which would include wear and tear on buildings and equipment. A total amount is paid by the patient up front so they have fully covered their costs. However, usually a patient does not require all that has been allowed for, so then receives a refund. The bringing together of all these costs and invoicing was and probably still is done by 'Orgamed'.
Barry
User
Posted 26 Jan 2020 at 07:10

I had a full body MRI scan at Paul Strickland.


Because I was so interested in it, my consultant setup for me to meet the radiologist, and the radiologist went through it all with me again, explaining how he analysed it. I was fascinated, as you might imagine, and he liked that he actually saw a patient (from the outside) which they normally never do.


At the start, he checked back which scanner I'd been done on, because he said they all behave differently, and he takes that into account when analysing the scan. That's the sort of thing a radiologist wouldn't be able to do if just presented with a scan from somewhere else. When I asked about this, he also commented that if they scan me again, they will try to do it on the same scanner for better comparisons.


This was an MRI, not a PET scan, but it does not surprise me radiologists understand and account for the quirks of specific scanners they use when analysing the results.

User
Posted 18 Mar 2020 at 15:18

Hi All. Not sure if I should start a new thread. Will do so if you think I should!


Stereotactic Body Radiation Therapy and Covid-19


I think our figures below represent a doubling time of 10 months if one can base it on so few readings...yet the 0.4 in April 19 was still only 0.6 in January 20 so we will see in April. Our window of treatment before we reach 1.0 is shrinking.


Finally saw our Surgeon on 28th February....what a long wait from our diagnosis in mid January and made worse by the fact that my husband misread the letter and we hightailed up to his unoccupied rooms on the 28th of January, not having slept well and all jizzed up with worry to know what was going to happen....only to have to wait another 4 weeks!


He was quite reassuring regarding the single lymph node recurrence and bearing in mind my husband's complete antipathy to androgen deprivation therapy, plus the fact that we had a definitive PSMA scan, suggested that he though he would be suitable for Stereotactic Body Radiation Therapy. He was to refer him to a radiotherapist in Dublin; The only place that does it in Ireland and about a 2.5 to 3 hour drive each way from our house.


We went away quite pleased with this outcome but with no information only that there are fewer sessions and its more targeted so will protect the other areas in the Pelvic Region, that normally suffer the side effects of RT. We also told the kids that night that the cancer had come back but that there was great treatment and prognosis was good. (They are 22, 19 and 15 all still studying and living at home)


Since then we haven't heard back from the radiotherapist yet and they have not heard from the Urologist who did the original surgery yet! I phoned his secretary for the 2nd time today....:-(


I don't think anybody can answer definitively whether we should go ahead now or wait with Covid-19 all around us but if you have been there you might have more of an inkling whats involved generally. My friends are all stressed about their jobs and elderly relatives and the economy generally, not to mention being stuck in our houses with our kids all day! I want to scream at them that I have all that AND am wondering if my husband is going to die from cancer much younger as a result of this because his radiotherapy is put off, or die from Covid-19 because it isn't!! But I don't because he is self employed and we don't talk about it outside the family. (Which is why this site is great!)


-Has anybody here had Stereotactic Body Radiotherapy?


-How many sessions are normal and how far apart are they?


-Any idea if it would put him at serious risk for complications with Covid-19?


-Which might be the greater risk, having it or not having it? (Assuming they are even able to go ahead with new patients!)


I have laid out the progression below. So far we think we have a doubling time of approx 10 months


Thanks in advance!!


Misty


Brief History of Progression


PSA of 4 Jan 2016, 4.8 in February 2016. Biopsy May T2C. Gleason Score 6. After RP in September 2016 revised to Gleason 7 (don't know which way around 3+4 or 4+3) Margins Clear (Supposedly!)


Post Op PSA was <0.1 (They don't seem to do it as precisely as the 0.01 at our hospital which could have masked rises right from the start)


PSA <0.1 every 3 months until June 2018 and then he missed the next one (despite my continuous nagging for 6 months. Any other men on here have "I am invincible syndrome"??) :-)


PSA January 2019 0.3.            Same in February 2019.


PSA April 2019 was 0.4         PSMA scan in April was negative (They did 2 just in case)


PSA in August 0.4


PSA in November 0.6


PSA January 0.6 PSMA reveals cancer in one pelvic lymph node. 


 


 

Edited by member 19 Mar 2020 at 01:19  | Reason: Doctors name removed

User
Posted 18 Mar 2020 at 16:24
Your doubling time at the minute is about 13 months.

Stereotactic RT is also referred to as SBRT or SABRE - if the search function is working, you should be able to find a number of other members here that have had this.

Best to remove the consultant's name from your post :-/
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 18 Mar 2020 at 20:39

Our member Roy had Stereotatic RT. Here is his Bio:- https://community.prostatecanceruk.org/default.aspx?g=profile&u=12848


 

Edited by member 18 Mar 2020 at 20:41  | Reason: to highlight link

Barry
User
Posted 19 Mar 2020 at 01:20

Hi Lyn. Thank you . I will look that up. How do you make the doubling time to be 13 months? Is it because it was still 0.6 in January?

Edited by member 19 Mar 2020 at 01:21  | Reason: Not specified

User
Posted 19 Mar 2020 at 09:35
I put your results from Jan 19, April 19, Aug 19, Nov 19 and Jan 20 into a doubling time calculator - you can just google these.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 19 Mar 2020 at 10:04

Oh wow. Didnt know they existed! Thanks Lyn. That's much better than 10 months!
Any opinion on our situation? I'm sure there must be lots of others in the same boat. Xx

User
Posted 19 Mar 2020 at 10:46
Take the treatment of you can, and make sure he self isolates.
User
Posted 20 Mar 2020 at 22:34

The update is the surgeon/urologist has been on to the radiotherapist so we sent on PSMA scan today by express post. She will video call my OH next week and is keen to treat him. He is unusual in that he is the first either doctor has come across to have a negative PSMA scan followed by a positive one and only in one lymph node so she wants to treat him asap. Not sure how many zaps he'll need but they will be very high powered targeted sessions. They have cut down a lot on radiotherapy unless it's very urgent, with the current situation so I imagine she wont be doing many sessions and he wont be too immune compromised. I may be wrong on that but we have no choice really but to go ahead. And then be super careful!


Hope all managing ok and getting used to catching up with us in Ireland over in the UK with the new measures brought in. Stay safe everybody!


 

Edited by member 20 Mar 2020 at 22:35  | Reason: Not specified

 
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