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User
Posted 12 Jul 2022 at 17:44

Hi guys, f18 scan happened a few days ago, PSA last week,up to 1.6, Onco appointment today.

They found one lymph node in the right of the groin ( I think) that lit up. Nothing else seen. I did ask if it had 1.6 worth of PSA in it. 

Results go before another team but proposed plan is SABR treatment to the lymph node. Possibly done in the next few weeks. 

Any stories of experiences ,good or bad.

Thanks Chris 

 

 

User
Posted 12 Jul 2022 at 17:59
Always nice to hear from you Chris. I guess it’s good that only one item showed up and they are looking at it as curative. You’re our ultimate soldier so good luck 🤞 from me
User
Posted 12 Jul 2022 at 18:17
Hi Chris

Hopefully they found the only culprit that's producing the PSA and that they can knock it out with focal treatment.

Good luck

Cheers

Bill

User
Posted 13 Jul 2022 at 06:02
That sounds like good news to me! Will be an interesting PSA result when you get the results...
User
Posted 19 Jul 2022 at 15:18

Originally Posted by: Online Community Member

“Hi guys, f18 scan happened a few days ago, PSA last week,up to 1.6, Onco appointment today.

They found one lymph node in the right of the groin ( I think) that lit up. Nothing else seen. I did ask if it had 1.6 worth of PSA in it. 

Results go before another team but proposed plan is SABR treatment to the lymph node. Possibly done in the next few weeks. 

Any stories of experiences ,good or bad.

Thanks Chris”

 

that sounds positive Chris. Just had my consultation and i mentioned your situation  She said the F18 scan is a bone scan. Is that what you had? 

She said my PSA is rising very slowly so was unlikely to yield any results. My PSA has risen from 0.12 to 0.57 from 2019  

So further discussion in 4 months or if i get any significant symptoms

Take care

Bri

 

 

Edited by member 19 Jul 2022 at 15:19  | Reason: Not specified

User
Posted 19 Jul 2022 at 16:46

Hi Chris, have you had an enhanced MRI and a PET scan? When I had my recurrence the enhanced MRI showed up cancer in the prostate bed. The choline F18 scan showed up higher activity in a seminal vesicle remnant but missed the stuff in the prostate bed. Hope SABR does the job. 

Ido4

User
Posted 19 Jul 2022 at 17:37

Wishing you all the best. 

User
Posted 19 Jul 2022 at 17:39
Oh, my!!!

Shall we need a combination of all different tracers and PET TAC modalities in order to catch any probable new cancer spot sensitive to a particular substance?

I know OH"s situation is not extremely serious and I shouldn't complain here, but some psychological break would be appreciated .

Best to all

Lola.

User
Posted 19 Jul 2022 at 18:49

Lola, I think like me you are confused with all the tracers, what is a PSMA and non PSMA tracer, should it be a choline tracer a glucose tracer or a fatty protein tracer. This tracer is better for this area that tracer is better for that area. I share your sense of frustration, take care and relax.

Bri I had a "NM F18 half body PSMA PET/CT scan", I can't find the exact tracer I had but my understanding was it "could" pick up the cells if in sufficient quantity no matter where they were.  Scholars ?

Bri, hope you are doing okay, the medics seem more relaxed with our results than we do. 

Ido4, I had the scan as described above but not sure whether that counts as the pet scan.  I haven't had an MRI scan since my post biopsy one over eight years ago. I have had several bone and CT scans up until the termination of the trial a few weeks ago, they didn't pick anything up. I will have a planning scan before treatment starts. Thanks for your good wishes.

I could do with a Dummies guide to PSMA scans.

DW, CJ,  francij1 & Bill thank you for you continued support.

 

Thanks Chris

 

User
Posted 19 Jul 2022 at 20:29

You've hit the nail , Chris. That's the way many of us are feeling. To be honest, I had the impression that over the last three or four years a gigantic step forward had taken place in terms of image and tracers. We were welcoming what we thought to be the solution for tiny spotted  mets and, thus , go for an early treatment, as well as keep watchful to possible unseen malignant cells at the very moment they became visible. Kind of disappointing?

BTH, would you happen to come across some manual for dummies trying to understand tracers, TAC, PSMA , gallium, f16, bone scan, and life in general, please, make me aware.

Best wishes from my Spanish corner over the ocean, facing America.

XX

Lola

 

User
Posted 19 Jul 2022 at 21:41
Bri, there are different things all referred to as F18 or 18F.

F18 sodium fluoride is a bone scan

18F PSMA is a highly sensitive tracer which can pick up small cancer clusters anywhere in the body if the cancer cells are PSMA reactive. It has some disadvantages compared to Ga68 but also performs better in some situations. There is a small number of men whose cancer is PSMA negative and for these, Ga68 and 18F will not pick up the cancer sites.

F18 fluciclovine (previously known as FACBC but also called axumin) is usually better than choline at low PSA readings, not quite as reliable as a PSMA scan using 18F or Ga68 but more stable, easier to produce and transport. 18F FACBC / axumin is not a PSMA scan so may be successful for those men who are not PSMA+

This is an interesting paper published last year

https://www.frontiersin.org/articles/10.3389/fonc.2021.684629/full

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

User
Posted 19 Jul 2022 at 22:41

Originally Posted by: Online Community Member
Bri, there are different things all referred to as F18 or 18F.

F18 sodium fluoride is a bone scan

18F PSMA is a highly sensitive tracer which can pick up small cancer clusters anywhere in the body if the cancer cells are PSMA reactive. It has some disadvantages compared to Ga68 but also performs better in some situations. There is a small number of men whose cancer is PSMA negative and for these, Ga68 and 18F will not pick up the cancer sites.

F18 fluciclovine (previously known as FACBC but also called axumin) is usually better than choline at low PSA readings, not quite as reliable as a PSMA scan using 18F or Ga68 but more stable, easier to produce and transport. 18F FACBC / axumin is not a PSMA scan so may be successful for those men who are not PSMA+

This is an interesting paper published last year
https://www.frontiersin.org/articles/10.3389/fonc.2021.684629/full

Great post Lyn, helps us to understand the scans a bit more.

Not sure if I’ve asked this question before but is there a chance that some cancer cells are PSMA reactive and some aren’t?

Thank you

User
Posted 19 Jul 2022 at 23:22

Lyn,

This is the exact copy from my appointment letter , "NM F18 half body PSMA PET/CT scan" I am fairly confident I had the F18 fluciclovine tracer, my PSA was 1.6.Presumably it was not a PSMA scan.

The scan did light up a single lymph node. 

"18F PSMA is a highly sensitive tracer which can pick up small cancer clusters anywhere in the body if the cancer cells are PSMA reactive. It has some disadvantages compared to Ga68 but also performs better in some situations. There is a small number of men whose cancer is PSMA negative and for these, Ga68 and 18F will not pick up the cancer sites.

F18 fluciclovine (previously known as FACBC but also called axumin) is usually better than choline at low PSA readings, not quite as reliable as a PSMA scan using 18F or Ga68 but more stable, easier to produce and transport. 18F FACBC / axumin is not a PSMA scan so may be successful for those men who are not PSMA+"

Is there a chance that any smaller clusters of cancer cells have been missed by the F18 fluciclovine, that could have been picked up by the 18f or Ga68. I realise the scans are not infallible, as we saw with CJ. I have already had my fair share of adverse effects and apparently now risk bowel damage from the SARB. 

I don't want to go head on into another treatment then finding out I could have had a better investigation.

Thanks Chris 

 

Edited by member 19 Jul 2022 at 23:23  | Reason: Spelling

User
Posted 20 Jul 2022 at 00:13
"Lyn,

This is the exact copy from my appointment letter , "NM F18 half body PSMA PET/CT scan" I am fairly confident I had the F18 fluciclovine tracer, my PSA was 1.6.Presumably it was not a PSMA scan."

You should ask your onco in case I have got it wrong about Axumin but my guess is that you had F18 PSMA 1007 not fluciclovine. I don't think they would have written on the letter that you had a PSMA scan if you didn't.

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

User
Posted 20 Jul 2022 at 00:19
"Not sure if I’ve asked this question before but is there a chance that some cancer cells are PSMA reactive and some aren’t?"

Others here know more than me about this but I think that you are either PSMA+ or you aren't. Some clusters may be too small to show clearly which then leads to equivocal scan results and doctors comparing the images from MRI, bone scan and PET scan to form a view?

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

User
Posted 20 Jul 2022 at 10:17

Originally Posted by: Online Community Member
"Lyn,

This is the exact copy from my appointment letter , "NM F18 half body PSMA PET/CT scan" I am fairly confident I had the F18 fluciclovine tracer, my PSA was 1.6.Presumably it was not a PSMA scan."

You should ask your onco in case I have got it wrong about Axumin but my guess is that you had F18 PSMA 1007 not fluciclovine. I don't think they would have written on the letter that you had a PSMA scan if you didn't.

 

Lyn, thanks for the reply, I have just had it confirmed that the tracer was the 1007 as you said. Is there a better scan that may pick up things the 1007 may have missed ? 

I know these are things to discuss with the Onco but I have been told there is a risk of bowel damage from the SARB , why risk that if there are other things lurking elsewhere. I really don't want HT and I have given it my best shot so far, there is a time to go for quality over quantity.

Thanks Chris 

 

 

 

User
Posted 20 Jul 2022 at 11:55
"I have just had it confirmed that the tracer was the 1007 as you said. Is there a better scan that may pick up things the 1007 may have missed ?"

No, comparison trials suggest that Ga68 and F18-1007 are just about the best you can get and fairly equal. 1007 may be slightly better at picking up activity in lymph nodes.

I am surprised that they are saying there is a risk of bowel damage - SABR is so precise. Maybe they are just doing the usual worst case scenario thing?

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

User
Posted 20 Jul 2022 at 13:06

Lyn , thank you for your reply, that is quite reassuring. Just watching some Dr Kwon videos who talks about SARB, surgery or cryotherapy for treatment to a single lymph node. 

I will go through the bowel damage scenario with the Onco.

CT and planning scan appointment arrived today for tomorrow.

Thanks Chris.

 

Edited by member 20 Jul 2022 at 16:39  | Reason: Not specified

User
Posted 21 Jul 2022 at 21:42

Hi , I had my meeting with the oncologist (J) today. Perhaps because of my history of adverse effects ,  he did paint quite a grim picture of possible adverse effects, he did qualify it with, they only affect around 1percent of SARB patients. He also said further scans would not reveal anything else. 

So the planning CT scan went ahead 2 of the three almost faded tattoos were redone along with a fresh one at the front. 

Treatment in 3 to 4 weeks time, a  maximum of five sessions on alternate days.

He did say the area of interest was around 8mm, I don't think he likes my engineering type questions.

Now I have got my dispute with the dentist resolved I am hoping to get that treatment out of the way before the SARB treatment.

Still interested to hear from any guys who have had SARB treatment in a similar situation.

Thanks Chris 

Edited by member 21 Jul 2022 at 22:59  | Reason: Not specified

User
Posted 22 Jul 2022 at 09:23

Hope it all goes well Chris. 

Ido4

User
Posted 27 Jul 2022 at 11:46
Good luck
User
Posted 30 Jul 2022 at 09:52

Scholars, my recent scan only proved one site of cancer in a pelvic lymph. How do I describe my cancer ,i.e , metastatic , advanced or something else. Provisional date for  SABR treatment 8/8/22. 

Thanks Chris 

User
Posted 30 Jul 2022 at 10:50
It is advanced with spread to lymph nodes only at the moment Chris , so technically curable although the lymph system is a super-highway. That is I only had 2 lymphs in abdomen but now one up in shoulder and one near my lungs. Hopefully after zapping your psa will stay down a good while. Insurance wise you are good to go. They normally happy with spread to local lymphs only. It’s when the bones get involved …….

Good luck friend

User
Posted 30 Jul 2022 at 13:27

Sorry you’re having to deal with this Chris. Here’s hoping the SABR sorts it. 

Ido4

User
Posted 11 Aug 2022 at 10:55

I had session 2 of 5 yesterday, I am having 30gy over 5 sessions. The treatment room is lovely and cool , pity the treatment doesn't last longer. Perhaps coincidence but my skin felt like it was burning for a couple of hours about two hours after treatment, nothing to see on the skin and all back to normal now.  As usual the RT staff are absolutely brilliant.

Thanks Chris 

 

8/8/2022 to 17/8/2022, 30gys over 5 sessions of SABR treatment to a pelvic lymph node. 

 

 

 

.

Edited by member 18 Aug 2022 at 23:04  | Reason: Not specified

User
Posted 11 Aug 2022 at 19:52

A nice cool room in the middle of a raging heatwave. As they say, every cloud has a silver lining. I hope the SABR does the trick. Chris

User
Posted 11 Aug 2022 at 20:02
Hope it all goes ok Chris. I ended up with 3 squares of red skin when I had my spine and ribs done , but it wasn’t sore and went away in the end. It did cause some internal issues with Oesophagus and lungs etc but yours is down below so to speak. I got piles 2 weeks after for the first time in my life but that sorted too. They gave me a bottle of Morphine in case I got tumour flare but that never happened either. It has been opened for the odd dabble though 😊

Good luck

User
Posted 30 Sep 2022 at 16:55

Hi. My PSA had been rising by roughly 0.1 per month for the last few months.

My last PSA on the 5/8/22 was 1.8.

SABR treatment to a single lymph node was 5 sessions between 8/8/22 and 17/8/22.

PSA yesterday 30/9/22 was again 1.8.

Perhaps yesterdays blood test was a bit too soon and based on previous trends there would normally have been a rise, but I was expecting a fall.

Has anyone else is got experience of PSA trends after SABR. Are PSA trends after SABR the same as after RT and SRT.

I see the oncologist on Tuesday. 

Thanks Chris 

User
Posted 02 Oct 2022 at 06:41
Thought the matron always said it can actually go up because of cell death releasing PSA?
User
Posted 02 Oct 2022 at 12:01
It may just be a bit too soon; PSA isn't really a reliable indicator of the effectiveness of RT in the early days after treatment so it's possible that the same applies to SABR. Alternatively, it may be that the node that was zapped is not where the PSA is being generated
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 02 Oct 2022 at 12:20

Originally Posted by: Online Community Member
It may just be a bit too soon; PSA isn't really a reliable indicator of the effectiveness of RT in the early days after treatment so it's possible that the same applies to SABR. Alternatively, it may be that the node that was zapped is not where the PSA is being generated

Lyn, I think I prefer the first option 😃.

My post SRT PSA  dropped from 0.27 to 0.08 in a matter of weeks, so I am hoping for the same.

Thanks Chris 

User
Posted 02 Oct 2022 at 16:06
Hope it starts to drop Chris. Logic tells me if the scan did not reveal anything else then surely the lymph node is generating the PSA. Either way fingers all crossed for you

Bri

User
Posted 03 Oct 2022 at 22:31

Hi Chris,

If I had a psa record like yours one thought would be it was slow to react to RT before and that it hasn't changed at this time might be a sign it's turning.  All the best Peter 

User
Posted 04 Oct 2022 at 12:33

Originally Posted by: Online Community Member

Hi Chris,

If I had a psa record like yours one thought would be it was slow to react to RT before and that it hasn't changed at this time might be a sign it's turning.  All the best Peter 

Pete

Some time ago I started recording my PSA in a spreadsheet, only because it was an easy format to use. I progressed to adding formulas and analysing data, not because of anxiety, I just like to know where I am going. 

Based on my data , without treatment my last PSA would have been between 2.1 and at worst 2.5, so no rise is obviously promising.

I will see an oncologist this afternoon.

Thanks Chris 

 

User
Posted 04 Oct 2022 at 16:46

Hope your PSA starts to fall soon Chris. 

Ido4

User
Posted 04 Oct 2022 at 18:44

Thanks guys, went to see my oncologist today, he said the blood test was too early. He also said PSA will fall slower because I had RT without HT. Next appointment 3/4 months, but he expects the lowest reading to be in six months time.  What did surprise me slightly was if the PSA does start to rise and hits 2.5 we would repeat the process again.

Thanks Chris 

User
Posted 04 Oct 2022 at 19:24

That must take some weight off your mind. It's great to have a back-up option of trying again plus four interesting points. 

If I can repeat them   1. The test was too early. 2. Psa lowest at 6 months.  3. The slower fall without hormones. 4. That they'll try again. 

Let's hope it's fine. Peter

 

User
Posted 04 Oct 2022 at 20:21

Originally Posted by: Online Community Member

Thanks guys, went to see my oncologist today, he said the blood test was too early. He also said PSA will fall slower because I had RT without HT. Next appointment 3/4 months, but he expects the lowest reading to be in six months time.  What did surprise me slightly was if the PSA does start to rise and hits 2.5 we would repeat the process again.

Thanks Chris 

Relief! 

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

User
Posted 04 Oct 2022 at 22:10
Good news Chris

Cheers

Bill

User
Posted 05 Oct 2022 at 05:26
Repeat which process? Scan and treat other areas or re treat the same node?
User
Posted 05 Oct 2022 at 07:47

Originally Posted by: Online Community Member
Repeat which process? Scan and treat other areas or re treat the same node?

Francij, a very good question, I took it to mean scan and treat other areas. I really must start writing questions down before the meeting. I meant to ask," had they actually hit the target", but I got distracted by other subjects  ☹️.

In hindsight, the meeting was more a check to see if I was suffering any side effects from treatment rather than the outcome of the treatment.

Thanks Chris 

 

User
Posted 05 Oct 2022 at 10:12

Originally Posted by: Online Community Member

Thanks guys, went to see my oncologist today, he said the blood test was too early. He also said PSA will fall slower because I had RT without HT. Next appointment 3/4 months, but he expects the lowest reading to be in six months time.  What did surprise me slightly was if the PSA does start to rise and hits 2.5 we would repeat the process again.

Thanks Chris 

Hi Chris,

Really interesting point that PSA will fall slower because you had RT without HT..

I have a daft question; what is the optimum time to test PSA post RT, and what is it about RT that kills cancer cells?

Regards, 

Kev.

 

User
Posted 05 Oct 2022 at 13:03

Kev T , interesting questions not daft, I am afraid they are above my pay grade,😀. I am sure the scholars will have the answers. 

Thanks Chris 

User
Posted 07 Oct 2022 at 17:47
Sounds positive Chris 🤞

Kev T they usually test 6 months after RT. Having said that it took about 2.5 years for my PSA to hit its lowest point after RT

Bri

User
Posted 07 Oct 2022 at 17:56
Reassuring for Chris and for many others others here, like mi oh.
User
Posted 08 Oct 2022 at 21:36

I'm no expert.  My basic understanding is that EBRT destroys all cells it comes into contact with.  The important thing is that the healthy cells killed will regenerate.  For some reason, which remains a mystery to me, the cancerous cells won't.  Once they're dead they're dead in other words.

User
Posted 08 Oct 2022 at 21:47
As long as I know radio damages DNA. For some reason I ignore, malignant cells are not able to recover from that damage and over time they will die whereas the normal cells can fight and defeat the harm caused by radio.
User
Posted 08 Oct 2022 at 23:15

Originally Posted by: Online Community Member

I'm no expert.  My basic understanding is that EBRT destroys all cells it comes into contact with.  The important thing is that the healthy cells killed will regenerate.  For some reason, which remains a mystery to me, the cancerous cells won't.  Once they're dead they're dead in other words.

The RT is not intended to destroy cells. A necrotic prostate would be a seriously life threatening condition.

The RT exploits a property of cancer cells, in that they became cancer cells because their DNA got corrupted and they failed to repair it. Cell DNA gets regularly corrupted, so cells have a variety of ways of correcting it depending on the corruption. While the DNA is corrupt, the cell disables dividing and multiplying (which is its reproduction mechanism, although reproduction is the wrong word). Cancer cells generally have 4 faults, 1) the DNA is corrupt, 2) the DNA repair mechanism isn't working, 3) the corruption is not bad enough to prevent the cells dividing and multiplying, 4) the programmed cell death (apotosis) which happens in healthy cells before a cell reaches old age stops working.

The radiotherapy sets about to corrupt the DNA in all the cells, mainly by splitting water molecules into highly reactive free radicials, which react with parts of the DNA chain, corrupting it. Healthy cells will invoke their DNA repair mechanism and repair this damage. Cancer cells generally can't do this because their DNA repair mechanism is broken. Then next day, you hit them all with another round of RT. This corrupts all the DNA again, and healthy cells repair their DNA again. Cancer cells couldn't, and now have two lots of corruptions to their DNA. As the RT continues over time, you can see that damage is cumulative in the cancer cells, but the healthy cells are repairing themselves each time. By the end of the radiotherapy, the cumulative damage to the cancer cells should be enough to make them incapable of dividing and multiplying any more, i.e. they're no longer malignant. They may not be dead yet, and can take a couple of years to die, but providing they can no longer multiply, the cancer cannot grow and spread, and eventually all the cancer cells will die of old age.

This is why (if you aren't on HT) it takes time after the RT for the PSA to drop to a minimum as the cancer cells die over that period. The prostate is capable of some regeneration. So, as the cancer cells die, some will be replaced with healthy cells, and PSA will likely rise a bit. You can get PSA bounces, and this is thought to be due to your immune system occasionally spotting there are a lot of dying cancer cells and attacking them, although the cause of PSA bounces isn't well understood.

The RT does also cause collateral damage to some healthy cells, and this is what causes the various RT side effects.

User
Posted 09 Oct 2022 at 09:15

Andy , brilliant and  interesting reply. In my situation the SABR treatment was applied to a lymph node after surgery and salvage RT , the latter was 4 years ago and no HT. 

Do you have an explanation on how RT works on  single or multiple sources.

Thanks Chris 

User
Posted 23 Jan 2023 at 13:51

Hi, a bit of a disappointing result, PSA gone upto 3.1 from.1.8 in September. The biggest rate of rise in the last nine years. See the oncologist tomorrow to see what the plan is.Do you get a bounce with SABR treatment, are the cells screaming ?

Thanks Chris 

Edited by member 23 Jan 2023 at 13:55  | Reason: Not specified

 
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