Possible biochemical recurrence.

User

Posted 20 Sep 2021 at 20:22

There are also some prostate cancers that don't show up in a PSMA, choline or any other scan even at very high PSA levels.

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

User

Posted 20 Sep 2021 at 20:27

Well it showed up pre-surgery, so presumably it's the "right" type.

User

Posted 20 Sep 2021 at 22:57

You would hope so but ChrisJ's showed up pre-op - post-op his PSA reached 100 and still his scans were clear. Micromets have a nasty ability to make themselves invisible :-(

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

User

Posted 20 Sep 2021 at 23:02

If it is any consolation, your PSA is behaving like classic cells left behind in the prostate bed rather than micromets. However, I find it shocking that your urologist hasn't referred you to oncology yet - he is dragging his heels and I would not be happy if you were my man.

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

User

Posted 21 Sep 2021 at 07:31

So where were his metastasese Lynn?

If I were referred to an onco now, what dialogue would there be? There would only be guesswork as to where the cells are surely.

User

Posted 21 Sep 2021 at 10:27

His eventually turned up in PCs favourite places, suggest you read his bio if you want chapter and verse.

There are only 2 ways a positive scan can change your SRT treatment:

1 If it finds mets outside the pelvis your SRT won't happen as you would be incurable.

2 If it finds mets in your lymph nodes the treatment could be extended beyond the prostate bed to include lymph nodes too.

So waiting to detect stuff on a scan may cost you a 2nd chance at a cure. You could also request they zap your lymph nodes anyway as due to the proximity to the prostate bed this is more effective if done at the same time.

The best person to discuss these risks and issues with is on ONCO not a Urologist

User

Posted 21 Sep 2021 at 10:55

I’ve had a quick look through Lynn’s profile and cannot see the answer readily, but I am viewing it on my phone.

Any tips on how I find a good oncologist? When I was looking for a surgeon it was fairly easy to research them. Not so much with oncologists.

User

Posted 21 Sep 2021 at 16:04

It is ChrisJ she was referring to to. You need to check out his profile but remember his case is nothing like yours.

You want an ONCO that specialises in prostate oncology, I had a second opinion from The Royal Marsden. Interestingly it was almost the opposite of my first opinion! No one said this was easy!

User

Posted 21 Sep 2021 at 19:32

Originally Posted by: Online Community Member

It is ChrisJ she was referring to to. You need to check out his profile but remember his case is nothing like yours.

You want an ONCO that specialises in prostate oncology, I had a second opinion from The Royal Marsden. Interestingly it was almost the opposite of my first opinion! No one said this was easy!

Ah yes, I see now that I have re-read the thread on a PC.

I have a BUPA GP calling tomorrow, may also see if I can speak to one of their onco nurses and will get a consultation with a prostate oncologist. Even if I don't act on their advice, at least I have had it.

User

Posted 22 Sep 2021 at 00:25

Piers

Saw this earlier today, no personal experience of them, but I perhaps should.

"At Guy's hospital in London, a number of prostate cancer clinicians with a specialist interest in recurrent prostate cancer have founded the Recurrent Prostate Cancer (RPC) clinic in order to offer men with recurrent disease access to the latest in diagnostic and therapeutic techniques for the treatment of their disease."

Thanks Chris

User

Posted 22 Sep 2021 at 02:20

Originally Posted by: Online Community Member

So where were his metastasese Lynn?

If I were referred to an onco now, what dialogue would there be? There would only be guesswork as to where the cells are surely.

Onco don't use guesswork - they rely on years of experience and data from thousands of men. They look at your diagnostic results, post-op pathology, and your post-op PSA to assess what is likely to be happening. A low post-op PSA which climbs steadily is classic for cells left behind in the prostate bed. A positive margin indicates where cells are most likely to have been left behind. Seminal vesicle invasion does the same. A high post-op PSA that climbs rapidly indicates that the cancer had already escaped before the op.

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

User

Posted 22 Sep 2021 at 07:51

Originally Posted by: Online Community Member

Piers

Saw this earlier today, no personal experience of them, but I perhaps should.

Thanks Chris

Sorry, I missed this. I am going to look into it.

User

Posted 26 Sep 2021 at 09:06

OK so I've booked an onco appointment for Wednesday.

My main questions will be

1. "What course action do you suggest?"

2. "When would you start?"

3. "Is ADT necessary?"

4. What will the side effects be, short and long term?

Additional questions:

a. Should I get a PSMA PET scan now?

b. What happens if I do nothing?

Is there anything else I should be asking?

Edited by member 26 Sep 2021 at 09:30 | Reason: Not specified

User

Posted 26 Sep 2021 at 09:27

Is it worth a PSMA scan?

What happens if I do nothing?

User

Posted 27 Sep 2021 at 21:05

Okay, I've just had a chat with an onco.

These are the answers he has given me:

1. "What course action do you suggest?" - Start on bicalutamide and tamoxifen immediately.

2. "When would you start?" - Radiotherapy to start in 3 weeks.

3. "Is ADT necessary?" - Yes, very much so

4. What will the side effects be, short and long term? - Tiredness, aches and pains (from the bicalutamide). Urgency, frequency and rectal problems.

5. What about long-term? - 10% chance of worsening my current situation regarding continence, EF and gut.

Additional questions:

a. Should I get a PSMA PET scan now?- No, waste of time and money.

b. What happens if I do nothing? - You'll have metastatic disease after about a year, potentially.

What are my chances of survival?

Because I am quite young and had acinar adenocarcinoma:

Life expectancy - 90% 5-year.

10-year chance free from cancer. 65%

10-year 85-90% still alive but with cancer.

User

Posted 27 Sep 2021 at 21:23

I want to obtain at least one additional opinion, can anyone recommend someone please? Ideally someone "progressive" if that makes sense. I want someone who understands that I am quite young and quality of life is paramount.

User

Posted 27 Sep 2021 at 22:22

I am in a similar situation ( see my profile). PSA has been rising steadily since RARP in August 2020. I spoke to my onco who suggested a PSMA scan to see what they could find out. Turns out that the cancer has spread to one of my lymph nodes. He suggests ADT followed by SRT.

He seems to be "on the ball". I tried PMing you but I don't have the necessary post count. I'm not sure whether he does Private but his online profile seems to suggest he may have done so in the past. PM me if you want any more details

User

Posted 27 Sep 2021 at 22:32

Sent.

User

Posted 27 Sep 2021 at 22:35

I have to say that the onco tonight played down the sides of bicalutamide. Not quite to the point where he was recommending it as a party drug, but he would have it that it isn't bad news.

Would anyone care to comment, who has been on it?

User

Posted 28 Sep 2021 at 00:24

How long are you to be on ADT in total? My guess would be six months to two years, but have you heard a more precise timescale from the onco.

ADT (nearly) always starts with bicalutamide, but then after two weeks it is often switched to a one month or three month injectable. However some oncos just keep you on bicalutamide for the whole course of ADT. You really need to find out what the whole plan is for ADT, so the person with the most relevant experience can post their comments.

Mind you I don't think you are in a position to worry about side effects, this sounds like the last roll of the dice and I think you need to take your chance whilst you can.

If this fails you may still survive 15 years with metastatic disease, but that will need life long ADT and later chemo, etc.

Dave

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