I am still struggling with treatment decisions - Help please.

[Nordman]

I am struggling to decide on my treatment. The main point of conflict is HT or not, and LDR Brachytherapy (if I am eligible - because of a previous HOLEP) or IMRT. I also wonder if I should push hard for a 10-day earlier consultation at the risk of bad feeling.

I welcome advice.

In the UK - Referral to treatment has been slow. It will be 24 weeks before I get to meet with the radio - oncologist in 3 weeks time, to discuss treatment.

1. Should I make a fuss and try and be seen possibly 10 days earlier to discuss treatment - will 10 days make any difference to the prognosis? Mark Scholz says waiting 6 -12 months with localised intermediate-grade cancer is ok. I worry about progression - see my stats below

I am 77+ and NED 6.5 years after stage 4 transitional cell kidney cancer. I now only have 1 kidney and a stable 42 eGFR. Fit and active, good bmi, no other comorbidities, no medication, never smoker or drinker.

HT is a significant risk for my solitary low eGFR kidney ie AKI or kidney failure. I therefore don't want HT. There are numerous papers on the risk. There is also QOL considerations being 77+. Mark Scholz not positive about HT for over 75s.

2. Is no HT a sensible decision given my age and kidney situation, or should I risk it given the benefits? There may be a further wait to treatment of at least weeks.

The only treatments available to me are VMAT IMRT and maybe LDR Brachytherapy and A.S. I had HOLEP 12 years ago, and will have to be assessed for LDR Brachytherapy.

My stats.

Gleason 3 + 4 ie 90% of 3 and 10% of 4

Grade 2

T2c NO MO - The urologist said I was T2a but changed his mind and agreed T2c after I queried it.

MRI indicated a 14mm tumour on the left lower quadrant

Transperineal biopsy - 6 out of the 15 cores had PCa. 3 out of the 6 cores were on the left side and were 1.3mm, 5 mm, and 9 mm. 1 out of 6 cores was on the left 3+3 and 1 mm.

Cells - Adenocarcinoma - micro acinar

No cribriform features

No evidence of EPE or Perineural Invasion

DRE - normal

PSA was 13.1 in July 2023, then 13.37 in September, and 14.32 in November - a velocity increase of 1.22 over 4 months.

Prostate volume 36cc on MRI

Prostate density at MRI 0.39

PIRADS 4 on MRI

[Tall_Allen]

The benefit of hormone therapy is clear for unfavorable intermediate risk, but there is no benefit for favorable intermediate risk. Your elevated PSA puts you in the unfavorable category, but that may be due to BPH. T stage is not based on MRI.

Considering your HoLEP history, you may want to speak to Peter Hoskin about high dose rate brachytherapy as a monotherapy. Or Alison Tree about SBRT as a monotherapy.

[Nordman in reply to Tall_Allen]

Thanks Tall_Allen

I am interested in your reasoning on possibly BPH accounting for my elevated PSA. My prostate is 36 cc or ml due to HOLEP 12 years ago so not a large prostate. I also had a 14 mm tumour at MRI and 9 mm, 5 mm, 1.3 mm, 1 mm at biopsy. Would that not generate a PSA of 14.32?

Do you have the reference on HT being no benefit for favourable intermediate?

Unfortunately, under the NHS I can't be referred to those you mentioned. If I wanted to be treated by Dr Alison Tree with SBRT it would have to be self-funded at a cost of £30,000 / $38,000 plus flights and hotel accommodation during the treatment.

It has been 6 months since my elevated PSA was noticed. There have been delays in getting to this point. In your opinion are my stats such that I could wait a further 4 to 8 weeks to commence RT without HT?

Nordman

[Tall_Allen in reply to Nordman]

BPH means that there are deformed cells that put out a large amount of PSA.

prostatecancer.news/2016/08...

prostatecancer.news/2017/03...

prostatecancer.news/2016/08...

[Nordman in reply to Tall_Allen]

Thanks Tall_Allen for those references. They look interesting.

[doc1947g in reply to Nordman]

What is HOLEP.

[Nordman in reply to doc1947g]

Holmium Enucleation Of Prostate which is a TURP using a holmium laser.

[doc1947g in reply to Nordman]

Thanks

[GP24]

"Gleason 3 + 4 ie 90% of 3 and 10% of 4" You can wait three weeks for your appointment, no problem. The way to go is no radiation, no HT but active surveillance. This is a very low risk cancer. See this trial: nejm.org/doi/full/10.1056/N... You will live 15 years and more without doing anything.

[Nordman in reply to GP24]

Thanks for your reply GP24.

You sound very positive and confident over my stats, and your suggestion is obviously very appealing.

HOLEP in 2012. My PSA was 1.49 when tested in 2018. Then PSA was 13.1 in July 2023, and 14.32 in November - a velocity increase of 1.22 over 4 months.

Given the above and a 14 mm MRI tumour in a 36 mm prostate, is there not a chance of PCa escape?

My recent PSA rise was discovered 5 months ago. It will be another 3 weeks until I meet with the RO just to discuss treatment, then maybe 1 to 2 months or possibly longer to be treated.

Are my stats still good enough to accommodate this overall delay.

[GP24 in reply to Nordman]

You are almost a Gleason 3+3 and these low risk cancers do not spread. Read the study I provided a link for, it was done in the UK. You are 78 years old, plus 15 years means you will have no problems until the age of 93. And if you want, you can get radiation any time during these 15 years. Even if you had a high risk tumor, studies show that you can wait for up to a year to have it treated without making your survival any shorter.

[Nordman in reply to GP24]

Thanks again GP24 for your positivity.

Yes, that was an interesting and encouraging study although it is essentially about survival. A good outcome of course, but does not avoid the possibility of mets that could wreck your health and life. Possibly more easy to consider in a country that is at the forefront of advanced treatments.

There were 2 interesting points in the study that caught my attention. "In earlier findings released in 2016, the researchers found that, after ten years follow up, men whose cancer was being actively monitored were twice as likely to see it progress or metastasise than those in the other groups".

Also "some of the men who subsequently died of their prostate cancer had been assessed as low risk at diagnosis, which the researchers highlight as an issue of concern".

Even in light of this study and my stats, I don't think I have the courage to do AS. I think I would prefer to try the least harmful of treatments. Hence my consideration of avoiding HT.

Nordman

[timotur]

Your PSA-DT is 2.7 years which makes a good case for AS. However, PSA > 10 and the size of the tumor (14mm) indicates elevated risk. I would consider RT (SBRT or BT) + 6 months ADT. Consider starting with a one-month Lupron shot and check your kidney numbers. If tolerable, consider time-dose reduction by stretching out the one-month shots to five week intervals (I did that to minimize SE's over 18 months). Your main goal here is to prevent PNI or worse.

[Nordman in reply to timotur]

Thanks Timotour

Unfortunately, only Vmat IMRT is available to me unless I am prepared to self-pay £30,000 / $38,000 plus flights and hotel accommodation. There could be a possibility of LDR Brachytherapy if I am considered a suitable candidate. It has something to do with available margins for seed implants following previous HOLEP. My PSA also has to be below 15.

Thanks for your advice over Lupron. Although a bit scared of HT. I will bear that in mind if I subsequently have the courage to accept HT.

Nordman

[timotur]

Nordman, ok, with those constraints, I would consider LDR-BT while your PSA is < 15. If you do so, start your Lupron a couple of months before the procedure to help sensitize the PCa cells to radiation. In the meantime, you could help limit increasing PSA by going to plant based diet if you haven't already. Best-- Tim

[Nordman in reply to timotur]

Thanks timotur

Does a plant based diet actually lower PSA?

Are you talking Vegan?

What about a pill like beta sitosterol instead?

Nordman

[timotur in reply to Nordman]

This is anecdotal, but I was able to level off increasing PSA during the six months I was waiting for treatment by switching to plant-only diet. My first PSA in Sept'18 was 23, and was 29 when I retested one month later. Switching to a plant-based diet, it was still 29 when I got my first Lupron shot in April'19. There's been others who have reported the same effect on this site, and in the literature.

[onemichael01]

Look into Tulsa Pro Ultrasound.

[Trying-Times in reply to onemichael01]

I also lost a kidney to cancer in 2007. They found my prostate cancer and I was treated with HD-BT in 2012 with no HT prior or after procedure. In November 2023 they found cancer in both Seminal Vessels. January 2024 I started 6 month hormone therapy and then had HDR-BT in May. My PSA currently is undetectable. I am 71 years old now and lone kidney works ok after both radiation treatments.

[Nordman in reply to Trying-Times]

Hi Trying-Times

Your experience is very interesting because of the similarities.

Your dates are a little confusing.

I would be interested to know your current eGFR and former Gleason etc

Thanks

Nordman

[Trying-Times in reply to Nordman]

Hello Nordman

Sorry for the confused dates. Original Prostate cancer found in 2012 and treated with LDR brachytherapy. November 2022 cancer found and hormone therapy started January 2023. Monthly Firmagon injections for 6 months. Here is some additional info.

eGFR 12/23

81 mL/min/1.73 m2

[>=60 mL/min/1.73 m2]

11/22

Prostate, Left Seminal Vesicle: Adenocarcinoma:

Prostatic Adenocarcinoma Prostate Cancer Grading:

Primary Gleason grade: 4 Secondary Gleason grade: 4 Total Gleason score: 8 Grade Group: 4

Tumor Quantifications:

The total number of cores identified is 5

The total number of cores with carcinoma is 1

The percentage of tissue with carcinoma is 5%

The linear amount of tissue with carcinoma is 4.5 mm

Prostate, Right Seminal Vesicle:

Prostate Cancer Grading: Primary Gleason grade: 4 Secondary Gleason grade: 3 Total Gleason score: 7 Grade Group: 3

Tumor Quantifications:

The total number of cores identified is 3

The total number of cores with carcinoma is 2

The percentage of tissue with carcinoma is 23%

The linear amount of tissue with carcinoma is 7 mm The percentage of Gleason grade 4 and/or 5 is 90 %

It took several biopsies and scans over months to find the SV cancer.

Hope this helps.

[Nordman in reply to Trying-Times]

Thanks for sharing your stats Trying Times. It is useful to compare notes with someone who also had kidney cancer.

I wish you well going forward.

Nordman

[Nordman in reply to onemichael01]

Hi onemichael01

I don't think Tulsa Pro is available anywhere in the UK.

[maley2711]

The use of ADT for certain men does increase the success rate. However, that is not to say that RT with little or no ADT will not work in your case. I think the use of the word "need" is questionable when it comes to many PCa treatment options. I suppose your PSA puts you into unfavorable intermediate risk as now defined, but researchers realize that this classification system is FAR from perfect !!!!!!!!!!!!!! Indeed, if BPH is causing some of this PSA, what is your "true" PSA for purposes of classification.

How many months of ADT have been suggested? Google will pull up many studies on intermediate PCa and the use of RT +/- ADT....then you can make a more informed choice.

THere is also this recent restrospective meta-analysis by some respected researchers....Docss are well aware of the negatives of ADT, and so are making many efforts to further understand which men will more probably benefit from more, and which men may do quite well with much less, or none.

urotoday.com/conference-hig...

[Nordman in reply to maley2711]

Thanks maley2711 for the thoughtful reply. You make some salient points.

Ar first glance that looks an interesting paper. I will have to read it carefully.

I have been waiting almost 24 weeks to meet with my RO so no discussion about ADT has taken place. I have expressed my no HT preference to the urologist.

BW

Nordman

[Teacherdude72]

Best of luck with your treatment options and your choice.For the Americans: take note on his slow Dr appointments, treatment options and slowness of treatments/follow up. That's what Single Pay Insurance looks like.

[maley2711 in reply to Teacherdude72]

Not necessarily....Britain spend just approx 10% of GDP on medical, whereas we are 17%.....so hopefully of course your get more "care" with 70% greater spending. Not necessarily a function of who the insurer is......in fact, my guess is barely a factor>are you saying we should not have Medicare insurance????? Or VA? By the way, perhaps Britain's per capita GDP is less than USA, so that would make their spending even less per capita. British taxpayers evidently don't support a tax increase to address this lesser "care" ?

[Teacherdude72 in reply to maley2711]

I am not saying stop medicare or the VA. What I am saying is that disassembling the entire mishmash of a system and having big government be the insurance company would be a big mistake. Limits for treatments, increasing times to get those treatments available and limiting doctor compensation resulting in fewer doctors available would result. Can our existing system be better? Oh heck Yes! I am covered by a Medicare Advantage Plan, one of five available to me where I live. If I lived in the next county to the east, five miles, I would have 12 plans to choose from. Then if I lived in the county to the north of me, 12 miles, I would have even more and with better coverage. My plan is $0.00 but each county I mention does also. Why not have all those plans available state wide?

The absolute in efficiency of all those plans scattered across the state with slightly different coverage's is where the 7% comes from.

[maley2711 in reply to Teacherdude72]

what 7 %? I don't follow your logic AT ALL? If Medicare is fine, and VA is fine.....your argument makes no sense!! Medicare is a single insurer for those 65+....so the only difference would be the arbitrary age limit.

So, Docs who take Medicare are starving???? The "fact" is......Brits seem to be opposed to spending more of GDP for medical. If they wanted to, I'm sure they would convey that to the Parliament.

I have never seen any analysis that claimed private insurers add less administrative cost to our medical system...indeed, just the opposite. Does Medicare have executives making multiple millions $$$$?????

[Teacherdude72 in reply to maley2711]

Since you have significant trouble understanding my writing; Have a nice day.

[maley2711 in reply to Teacherdude72]

Indicating you have no good answers.

[Teacherdude72 in reply to maley2711]

Wrong.

[maley2711 in reply to Teacherdude72]

but secret...not to be revealed. Just your unsourced opinions.

[Teacherdude72 in reply to maley2711]

Roses are red violets are green I like peanut butter do ride the bus or swim

[lowT163]

personally in 52 weeks I went from a (nodule) with no cancer showing on a biopsy to a tumor out of the prostate against my rectum. My guess is that it is all about how aggressive a cancer you have. My urologist had no clue and at the time I couldn’t have told you what a prostate was.

[j-o-h-n]

Would you be kind enough to update your user bio?....All voluntary but it helps you and helps us too. Thank you!!!

Good Luck, Good Health and Good Humor.

j-o-h-n

[Sandy752]

I have had one kidney since 1989 as the other was removed because of kidney cancer. I was diagnosed with prostate cancer in 2010 and had 40 doses of radiation which failed to cure me. I have been on hormone therapy (Lupron every 4 months) for 10 years. Current PSA is .39.

[Nordman]

Thanks for replying Sandy752.

Good to hear frpm someone who also had KC.