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User

Posted 21 Mar 2023 at 10:24

PSA now up to 4.6, having telephone call with oncologist this afternoon. From 1.8 to 4.6 in six months.

Following telephone conversation, I am seeing the oncologist privately, another PSMA scan on the cards , the problem is sooner or later ? Do it now and then something shows up later or do it later and risk further spread. Then told we may never get rid of it

Thanks Chris

Edited by member 21 Mar 2023 at 18:33 | Reason: Not specified

User

Posted 21 Mar 2023 at 19:26

Hi Chris, Sorry to read that. If it was me I'd have the scan now and decide what's best.

Does hormone or chemo do any good with SABR. Could it set back any others you worry about. All the best Peter

User

Posted 21 Mar 2023 at 20:23

Ahh Chris, Im deflated just reading that post so can only begin to imagine how low your shoulders have dropped.My fingers and toes are all well and truly crossed for you.

Youve got this.

Fist pumping my chest at you mate.

Love and warmth.

Jamie.

User

Posted 21 Mar 2023 at 20:33

Hi Chris.

I'm very sorry to hear that.

Are you concerned that if you have the scan too early that it may show nothing, and then you won't be offered another one later, when you might need it more? Sorry if I've misunderstood your dilemma.

Take good care of yourself.

JedSee.

User

Posted 21 Mar 2023 at 21:36

Gutted for you CC - I think I would be going PSMA now but if it doesn't show anything, I would also possibly ask for more traditional scans just in case you are simply PSMA-

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

User

Posted 21 Mar 2023 at 22:25

All , thanks for the replies, bit of history,I had a PSMA scan at 1.4 in July 2023, that picked up a pelvic lymph tumor and I had 5 SABR sessions in August 2023. I am fairly confident another scan will pick up something. The rise in PSA was described as a small rise.

A PSMA scan on the NHS will be around 3 months, so I asked about going private and then got mixed messages. You can have a PSMA scan in two weeks, treat the tumors (if possible) and then if the PSA rises later we may find something else. Or you could wait 3 months and see what develops, I asked is that risking further spread , answer, now you are asking questions I can't answer. Followed by, I can't discuss private treatments in a NHS environment.

My frustration is not understanding if or why the SABR treatment didn't seem to work. I even asked if they could have missed the tumor, which didn't go down well

In 2010 my GP missed a PSA of 6.9 three years later my PSA was 7.7, that was a rise of 0.8 in three years. I have just had a rise of 1.0 in 34 days.

Still optimistic, and would prefer to go down the possible cure or at least delay route rather than the HT control route.

Franci,177 is not an option as it has to preceded by treatments I haven't had.

Lyn ,sorry didn't quite understand about being PSMA.

Thanks Chris

User

Posted 21 Mar 2023 at 22:45

I think by PSMA-, Lyn means PSMA negative. i.e. your cancer does not have the PSMA protein, so will not show on a PSMA scan.

However as you did have a PSMA scan which did show the cancer in July 2023¿ your cancer is almost certainly PSMA+ (positive).

If you were psma negative, the cancer would still show up on the older scans

I guess it is possible you could have two varieties of prostate cancer, though I'm told that is incredibly unlikely.

I'm sure Lyn will correct anything I have misinterpreted, I just wanted to get a reply to you ASAP.

Dave

User

Posted 21 Mar 2023 at 22:48

Dave, thanks for that, it makes sense now.

Thanks Chris

User

Posted 21 Mar 2023 at 22:52

That's a bugger Chris.. Think Lyn has forgotten you have already had a PSMA + scan.

Think I would want another PSMA scan, it would certainly show if they hit the right lymph node with the SABR as that should be crispy after SABR.. May flag some other targets too.

Ask your ONCO about the bullseye trial for early use Lutetium he may have preliminary info on how successful it has been at avoiding HT.

https://clinicaltrials.gov/ct2/show/NCT04443062

User

Posted 21 Mar 2023 at 23:03

Sorry to read this Chris. Hope you can get the scans you need and find out what is going on x

User

Posted 21 Mar 2023 at 23:13

Franci, I will ask about the trial. I was discussing the 177 treatment with my insurance company and they also said they would not cover it because I had not had some treatments.

Elaine, getting the scans should not be an issue, it is just trying to get one at the optimum time, thanks for your reply.

Thanks Chris

User

Posted 22 Mar 2023 at 01:34

Hi Chris

Sorry to read your thread. You can get Lu-177 early privately in Finland, India and Germany if the trial isn’t an option

Good Luck

User

Posted 22 Mar 2023 at 02:00

No, I was thinking that perhaps the lymph node was PSMA+ but that other mets weren't picked up because they are PSMA- ... I didn't know that you couldn't have + and -

I think if there is a worldwide shortage of Lut177, you will need a plan B anyway so best to get the scan and understand whether the SABR worked, in which case you have other mets and should perhaps bite the bullet and go for systemic treatment

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

User

Posted 22 Mar 2023 at 05:58

I had a PSMA scan prior to surgery which was clear but 6 mths later after surgery two pelvic lymph nodes showed up together at 0.5cm. My onco explained that was about as small as they can see and there is a good chance it is also in other local nodes. As I understand it, that's why full pelvic radiation and a course of HT is often recommended in such cases as they also need to kill off the invisible stuff. Best wishes.

User

Posted 22 Mar 2023 at 08:24

Wishing you the best Chris x

User

Posted 22 Mar 2023 at 09:00

Sorry to hear this Chris.

Hubby had scans after SABR, 2 new lesions shown.

So seems SABR worked, but systemic treatment now needed as SABR not possible on new mets.

Best wishes xx

User

Posted 22 Mar 2023 at 09:54

Hi Chris sorry to hear things not going to plan. I just wanted to reassure you that systemic HT isn’t always as bad as you think. You know as well as anyone that I’m a huge advocate of QOL. I’ve been on Decapeptyl just over 2 yrs now. Zero weight gain , no moobs , hot flushes annoying but no big deal tbh , and my libido may be lower but still healthier than my wife’s. Tablets and pump still work just fine but orgasm can be elusive. Don’t hesitate if they tell you to start ( they told me I may only have a year to live ) , and ask for Decapeptyl maybe. It just seems to have less effects. Take care friend

User

Posted 22 Mar 2023 at 10:04

Originally Posted by: Online Community Member

Sorry to hear this Chris.
Hubby had scans after SABR, 2 new lesions shown.
So seems SABR worked, but systemic treatment now needed as SABR not possible on new mets.
Best wishes xx

Mrs Fish, I have just read your profile, some similarities there , especially the pattern of the PSA after scans and treatment. Useful to compare similar situations, but a little disappointing. I have been told further SABR treatment is possible but all depends on what and where.

Thanks Chris

User

Posted 22 Mar 2023 at 10:41

Sorry to hear this Chris, I hope you can find a resolution quickly

Best wishes, Arthur

User

Posted 22 Mar 2023 at 11:06

Claret, just looked at some Germany and India sites, I will have to look into what my health insurance covers. They all seem to have the requirement that you are castrate resistant and I don't know that. As Lynn mentioned there is a shortage of the 177 and I wonder what the travel insurance would work out at.

Lynn, thanks for the info , I didn't pick up on the - sign. An early scan makes sense to me, even if I delay treatment until after a further scan.It is the sudden rapid PSA rise that is confusing, unless it is death cry of the cells. I did notice the PSA of Mr fish had a rapid rise after treatment.

Jellies, I don't think the full pelvic treatment was considered when I had salvage RT. In hindsight perhaps the addition of HT with SRT would have been beneficial.

JayneP, thanks.

Thanks Chris

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