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That was not in the plan.

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 

 

.

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

 
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