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What to do now?

User
Posted 26 Sep 2023 at 14:43

In April 2017, I was diagnosed with incurable kidney cancer and given a poor prognosis of just months.  Following surgery, radiotherapy, and chemo, I was delighted to be discharged in September 23.  I was told there was now little chance the cancer would return.  However, due to a lab mistake, one of my last blood tests was analysed for psa instead of kidney function.  My psa was 13.1.  I now have an urgent referral for investigation.

 

Despite the previous cancer diagnosis and treatment, I am fit, healthy, highly mentally alert, and young for my age at 77.5.  I am not on any medication.  I can nip comfortably up numerous flights of stairs and frequently do.  I have a good bmi, don't smoke or drink etc.  I would say my biological age is much lower than my chronological age.

 

I had a nephro ureterectomy.  I now only have one kidney and am classified as Stage 3b CKD due to reduced kidney function in the remaining kidney, post-nephrectomy.  This does not impinge on my life, and I have a normal diet and existence.  

 

I had HOLEP 11 years ago in 2012.  In 2018 my psa was 1.49.  In July 23 it was 13.1, two months later in September 23 it is 13.37.  Does the previous HOLEP make this latter psa more significant, even if my prostate appears to have regrown over the past 11 years?

 

Following the inadvertent psa, the oncologist referred to (what was) my final ct with contrast in August 2023.  I was told they saw “heterogeneity enhancement of prostate similar to the ct” from the previous year.  They also said that if it was PCa it appeared to be contained within the prostate.

 

I also had my annual cystoscopy in August 2023, in which my bladder was clear.  Due to a declining flow and a little hesitancy, at the last few annual cystoscopies, I have asked how my prostate was looking.  They said it is growing and you need a redo.

 

I don’t get up more than once in the night, and it is usually after about 6 hours, and I could hold it longer if I choose.  I have no urgency or discomfort.  I don’t fret about toilets when out and about.  Personal dipstick tests show no blood, and all the other parameters are normal.

 

The oncologist said that despite me being a “fit man” surgery would not be offered, and very briefly hinted at the possibility of VMat IMRT with a few months of HT.  Now what to do? 

 

I know it is early days in the process, but want to be as prepared as I can be.  I absolutely don’t want to skew the suggestions and want to leave all options open, but considering my age and medical history Is WW or AS ‘the’ viable option?  I also want to be around for my wife as long as possible, and that is a prime consideration.

 

Having researched all the different options from private focal HIFU to robotic prostatectomy,  I ended up at RT, which having read some personal experiences believe it could potentially significantly impact my QOL.  The same goes for HT.  I have an even greater antipathy towards the latter considering what it could do to my QOL.  Is RT viable without HT?  Could it, would it give more years, or is it just months?

 

I know there is a considerable waiting list at my hospital.  I don’t want to have HT given as a holding option for months.  There is mpMRi at the hospital so I also don’t want to be directly pushed towards a TRUS biopsy as an alternative.  In fact, I worry about multiple biopsies generally in terms of potential infection, prostatitis, and sepsis.  Also, could the ‘genie be let out of the bottle’?  I think they only do transrectal biopsies.  I could use savings for an mpMRI and trans perineal biopsies.  Should I opt for the latter?

 

Apologies for the longish first post.  I welcome advice because I have been going around in circles and getting quite anxious over the whole matter.

 

Jonal



User
Posted 26 Sep 2023 at 15:51
It doesn't sound like you have actually got a diagnosis yet? MPMRI will be key to obtaining one but you can't be diagnosed without a biopsy.

It's not beyond reason that all the fiddling and poking for your bladder cancer has artificially raised your PSA. Only a biopsy can be certain.

Paying for tests privately is a way to get a quicker diagnosis, you are right to be concerned about TRUS biopsies.

User
Posted 26 Sep 2023 at 16:04

Sorry to hear of your second possible cancer battle, but well done on the last one.

I don't think HoLEP will have any impact on your PSA after a few months, and certainly not 11 years later, but a cystoscopy will have temporarily pushed up your PSA.

You haven't yet been diagnosed with prostate cancer as far as I can see - that can only be done with a biopsy, and before that you'd have an MRI scan.

It's premature to start thinking about treatments when you don't know if you have prostate cancer, and if you do, the extent and grading of it isn't known. That's a key factor in choosing treatments.

It looks like you have some agonising weeks while you await the various test results. I hope you have a good outcome, ideally with no cancer found.

Your urinary symptoms are very mild and most likely due to enlarged prostate which is nothing to do with prostate cancer.

Most places do transperineal biopsies now, although I know one place which still does trans-rectal, and have heard they're reappeared in some others because the numbers going through exceed their capabilities with trans-perineal trained clinicians. You should be sent for mpMRI before the biospy as they use the images to guide where samples are needed from. You shouldn't have to pay for either.

HT is used with most types of RT unless the cancer grade is very low. It halves the rate of recurrence, but the benefit to you will depend on your diagnosis. You could refuse it, or you could have it for a shorter period - the 3 months before RT and during RT is probably the most beneficial, and then choose if you are happy to stick with it or stop.

IG-VMAT (image guided volumetric arc therapy) is the standard form of external beam radiotherapy used nowadays, (VMAT replaced IMRT well over 5 years ago, although it is more fancy form of intensity modulated radio therapy). The original IMRT treated from about 5 or 7 stationary positions around you, but VMAT treats you continuously as the LINAC moves around you in a complete circles.

User
Posted 26 Sep 2023 at 20:17

Originally Posted by: Online Community Member
the TP biopsy is usually done under general anaesthetic

This isn't true anymore. There are two different types of TP biopsy.

Most are LATP (Local Anesthetic Transperineal) nowadays, although they can be done under general anesthetic. These have replaced TRUS.

The other type are Transperineal Template Biopsies which are always done under general anesthetic, but have also been mostly replaced with LATP nowadays.

User
Posted 26 Sep 2023 at 22:29

Back in 2018, I had a blind TRUS (i.e. not guided) which found almost nothing, and then a guided template biopsy under GA which found the cancer. That's not how it's usually done nowadays though. Blind TRUS should never be done now - it wasn't supposed to be done for me, but the mpMRI report didn't come back in time.

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User
Posted 26 Sep 2023 at 15:51
It doesn't sound like you have actually got a diagnosis yet? MPMRI will be key to obtaining one but you can't be diagnosed without a biopsy.

It's not beyond reason that all the fiddling and poking for your bladder cancer has artificially raised your PSA. Only a biopsy can be certain.

Paying for tests privately is a way to get a quicker diagnosis, you are right to be concerned about TRUS biopsies.

User
Posted 26 Sep 2023 at 16:04

Sorry to hear of your second possible cancer battle, but well done on the last one.

I don't think HoLEP will have any impact on your PSA after a few months, and certainly not 11 years later, but a cystoscopy will have temporarily pushed up your PSA.

You haven't yet been diagnosed with prostate cancer as far as I can see - that can only be done with a biopsy, and before that you'd have an MRI scan.

It's premature to start thinking about treatments when you don't know if you have prostate cancer, and if you do, the extent and grading of it isn't known. That's a key factor in choosing treatments.

It looks like you have some agonising weeks while you await the various test results. I hope you have a good outcome, ideally with no cancer found.

Your urinary symptoms are very mild and most likely due to enlarged prostate which is nothing to do with prostate cancer.

Most places do transperineal biopsies now, although I know one place which still does trans-rectal, and have heard they're reappeared in some others because the numbers going through exceed their capabilities with trans-perineal trained clinicians. You should be sent for mpMRI before the biospy as they use the images to guide where samples are needed from. You shouldn't have to pay for either.

HT is used with most types of RT unless the cancer grade is very low. It halves the rate of recurrence, but the benefit to you will depend on your diagnosis. You could refuse it, or you could have it for a shorter period - the 3 months before RT and during RT is probably the most beneficial, and then choose if you are happy to stick with it or stop.

IG-VMAT (image guided volumetric arc therapy) is the standard form of external beam radiotherapy used nowadays, (VMAT replaced IMRT well over 5 years ago, although it is more fancy form of intensity modulated radio therapy). The original IMRT treated from about 5 or 7 stationary positions around you, but VMAT treats you continuously as the LINAC moves around you in a complete circles.

User
Posted 26 Sep 2023 at 16:14
Thanks.

Just to clarify. It was kidney cancer I had, and thankfully survived.

The blood test that discovered the high psa was before the cystoscopy which was to check my bladder health.

User
Posted 26 Sep 2023 at 16:42
You need to have a biopsy, Jonal. Scans can indicate the presence of cancer, but only looking at cells under a microscope can confirm and classify it. A biopsy is unpleasant, but not too awful. Discomfort-wise, I’d put it on a par with having a filling at the dentist. There are two types of biopsy done: a TRUS biopsy which goes through the rectal wall, and a trans-perennial biopsy which goes through the perineum. The TRUS is usually done with a local anaesthetic (the same one that dentists use), the TP biopsy is usually done under general anaesthetic.

Best wishes,

Chris

User
Posted 26 Sep 2023 at 20:17

Originally Posted by: Online Community Member
the TP biopsy is usually done under general anaesthetic

This isn't true anymore. There are two different types of TP biopsy.

Most are LATP (Local Anesthetic Transperineal) nowadays, although they can be done under general anesthetic. These have replaced TRUS.

The other type are Transperineal Template Biopsies which are always done under general anesthetic, but have also been mostly replaced with LATP nowadays.

User
Posted 26 Sep 2023 at 21:06

Cheers, Andy. Mine was done under GA so I thought that was the norm. Mine was a template biopsy. I came out in a lovely purple and black rectangular grid of bruises!

Chris

Edited by member 26 Sep 2023 at 21:07  | Reason: Not specified

User
Posted 26 Sep 2023 at 22:29

Back in 2018, I had a blind TRUS (i.e. not guided) which found almost nothing, and then a guided template biopsy under GA which found the cancer. That's not how it's usually done nowadays though. Blind TRUS should never be done now - it wasn't supposed to be done for me, but the mpMRI report didn't come back in time.

 
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