What Treatment - Or No Treatment Advice? - Advanced Prostate...

Advanced Prostate Cancer

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What Treatment - Or No Treatment Advice?

Nordman profile image
12 Replies

I am interested in what would be advised for a fit and active almost 78-year-old, In NED from stage 4 UTUC upper tract urothelial carcinoma. Initial prognosis 6 - 9 months in April 2017.

Now only one kidney (GFR 42) No other co-morbidities. Good BMI. Never smoker or drinker. Not on any medication. BP quite good.

PSA 13.2. 14mm T2 tumour seemingly confined to left side of prostate - still awaiting biopsy and thus Gleason - HOLEP 11 years ago. - prostate 36cc.

Considering average lifespan, and QOL issues of treatment what would be advised?

I am in a poorly medically served region in the UK, and what would be on offer is only VMAT IMRT, and HT. I am terrified of HT and absolutely want to avoid it. I have toyed with HIFU but would have to self-pay for it. HIFU doesn't seem to get a good press on this site. TULSA PRO would be even more expensive plus the cost of a European trip to Germany or Finland etc.

Would NHS VMAT IMRT without HT be a good option?

What should I do if Gleason 3+4 or 4+3? is WW a consideration?

I know this is ahead of my biopsy, but I like to have a plan A, B etc.

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Nordman
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GP24 profile image
GP24

If you get 3+3 you can do WW. With a 3+4 I would recommend LDR Brachytherapy, this just takes one day in hospital. With 4+3 I would get surgery, even if I had to travel within the UK for that. With IMRT you will usually have to get ADT after the radiation.

You may want to read this article: nejm.org/doi/full/10.1056/N... If you follow that you can start with WW and get surgery or radiation some time later.

Nordman profile image
Nordman in reply to GP24

Thanks for your reply.

Unfortunately, at a first look, I think prior HOLEP makes Brachytherapy considerably more difficult and challenging. There also seems to be a higher incidence of urinary issues for HOLEP patients.

GP24 profile image
GP24 in reply to Nordman

You will have to discuss this with an RO who offers brachytherapy - not with any other doctor even if that is more convenient.

Tall_Allen profile image
Tall_Allen

Good luck on the biopsy. Let us know what it says. No need to worry about therapies when you don't yet know if you will need therapy. There will be plenty of time.

Nordman profile image
Nordman in reply to Tall_Allen

Thanks Tall_Allen.

I need to have strategies. It helps to settle the anxiety.

Are you still anti HIFU?

I have no choice under the NHS. What is your opinion on what is on offer ie VMAT IMRT?...........and omitting HT?

TFBUNDY profile image
TFBUNDY

Hi Nordman. You are not in a poorly medically served area of the UK, nor will you have to get your hand in your pocket. I am in the Midlands. I have had HIFU in Southampton (free of charge). I have a new local lesions 6 years on. I am offered Cryotherapy or HIFU in London. You can access Cyberknife in London too. Ask your GP or your Urologist to refer you to a specialist centre where they have the facility you prefer. You can message me if you need to. Don't think you are limited to what your nearest hospital can provide. The NHS is country wide and it is fantastic.

Nordman profile image
Nordman in reply to TFBUNDY

Hi TFBUNDY

Thanks for your reply.

I absolutely am in a poorly medically served area of the UK. I am in Scotland. We have no choice of doctor or hospital. You have only the regional hospital which does not do HIFU, Cyberknife or Cryotherapy. In fact I doubt if these modes are available anywhere in the Scottish NHS. It is well behind the curve.

Even if they were available the system does not facilitate other Scottish regional options. You are required to stay in your own region and attend the local hospital. For me it is one hospital only. Scottish hospitals are well behind the curve for PCa treatments and have significant waiting lists across the board. An A&E wait can be up to 24 hours, and is about 5 -6 hours on average!

The English NHS is criticised but it is far superior to the Scottish NHS.

TFBUNDY profile image
TFBUNDY in reply to Nordman

Bloody hell.....

groundhogy profile image
groundhogy

yes many times anxiety is caused by a lack of knowledge. If you study up on the subject, your anxiety will go down because you will discover pathways of possible success out of your situation. Of course high anxiety is normal for all of us as our lives are in danger. Lol

Anyway, here is some stuff you can research in the mean time so you might be prepared.

Here is a good website to compare odds of cure for the major treatment paths. You have to determine your stage, low risk, intermediate, or high risk (risk of recurrence). So if you are intermediate, pull up the intermediate chart and you can see the odds of 10-20 yr survival, etc. based on the treatment you pick.

prostatecancerfree.org/comp...

It is best viewed on computer or just print it on paper. Not so viewable on phone.

To make the graphs easier to read, i drew a dot on the endpoints of the elipses, and then drew a line through the dots. This turns the elipses into lines.

Also be aware the the graphs don’t show any salvage radiation benefit. This would boost the surgery odds up a bit.

Also beware, this is a very dysfunctional industry from my view. Loads of bad info mixed in with the good info. Same with the docs. Some of them are more dangerous than the cancer.

Nordman profile image
Nordman in reply to groundhogy

I now have my biopsy results

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

Grade 2 The consultant said it was Intermediate but at one point used the term Low intermediate. Is this latter term valid given the stats?

T2a NO MO - but I am puzzled about this because although it was mostly all on the left side 1 core of 6 on the right was 3+3 but only 1%. I thought that was T2c but the consultant said it was only a "tiny amount" so T2a. Should I query this further?

6 out of the 15 cores had PCa. 3 out of the 6 cores were on the left side and were 1.3mm, 5mm, and 9mm. 1 out of 6 cores was on the left. I can't account for 3 of the 15 cores! Will have to ask.

Cells - Adenocarcinoma - micro acinar

No cribriform features

No EPE or Perineural Invasion

DRE - normal palpation

PSA before biopsy was 14.32

MRI indicated a 14mm tumour on the left lower quadrant and an indeterminate echo on the right side.

Prostate volume 36cc on MRI

Prostate density at MRI 0.39

PIRADS 4 on MRI

The consultant mentioned Active Surveillance - possibly due to my age (approaching 78) The T2c question mark bothers me. I also read somewhere that AS should not be considered with samples above 5mm. He also mentioned RT + HT, (IMRT) but I want to avoid HT. I am considering LDR Brachytherapy, but my HOLEP 12 years ago might preclude BT.

Was there anything I missed out or should clarify in the biopsy stats?

Any input on the above stats and treatments?

Nordman

groundhogy profile image
groundhogy

I think others will be better at giving advise on this info. I would see if you get some responses here. If no one chimes in, i would suggest just copying your last biopsy post into a brand new thread. Alot of people just take note of the most recent posts.

Nordman profile image
Nordman in reply to groundhogy

Thanks

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