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Just Diagnosed - confused by treatment options

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User

Posted 07 Sep 2020 at 16:06

I am a 61 year old man just diagnosed with Prostate Cancer. My Gleason score is 3+4=7. The clinical report says, "Peruneurial invasion is seen; no evidence of lymphovascular invasion"

I am now being asked to select a treatment plan (from surgery across the range of alternatives). Where do I begin in making that choice? I would be so grateful to know of the experience of others - particularly those with a similar diagnosis.

Many thanks

User

Posted 07 Sep 2020 at 17:31

Start by downloading the toolkit from this page, lots of information. My husband is 6wks post op today. He was diagnosed with a Gleason 8 with PNI, stage T2b.

However , he just received his histology and first PSA results. He was upstaged to T3a, PSA 0.2 and is being referred to Oncologist for further treatment.

User

Posted 07 Sep 2020 at 18:30

Thank you so much. I wish your husband well and a meaningful recovery.

I wonder if there is any other advice from those reading (beyond the toolkit) based on personal experience of treatment selection. Particularly from those with the same clinical condition as me?

User

Posted 07 Sep 2020 at 18:51

It is different for each man Raphael, not so much because of the small details of the diagnosis but because you will have a different view of a) which side effects are acceptable to you / an absolute no-no and b) how happy you are to risk side effects for a better quality of life.

The tool kit lists the main side effects of each treatment and helps you to prioritise what is important to you.

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

User

Posted 07 Sep 2020 at 19:10

Thank you so much. That is greatly appreciated.

User

Posted 07 Sep 2020 at 19:29

Hi Raphael, the choices are bewildering. If you let us know your PSA and your TNM stage (BTW from what you've posted already I would guess it is T2N0M0, but I may be wrong so please post if you know any other details) it can help members judge how similar your diagnosis is to theirs.

The fact you have been offered a choice of all treatments suggests that the medics think they will all offer you a reasonable chance of survival. So as Lyn says it will probably be a consideration of side effects which will influence your decision most.

My own treatment was HDR Brachy, EBRT and HT. (you'll hopefully pick up the meaning of all these from your other reading).

Once you have read up on a treatment you think maybe appropriate post on here saying "my full diagnosis is xyz, and I'm thinking of having treatment abc?"

Once you have made the question more precise more members will reply with their own experiences. Based on what you hear you can then post saying "OK, I'm thinking of treatment ijk instead" and then you'll get a whole load more opinions. No one on here will object to you asking as many question as you want, and no one on here will mind if you keep changing your mind.

By the time you have to make a formal choice with the medics you will have rehearsed all the arguments here, and be far better informed.

Dave

User

Posted 07 Sep 2020 at 20:32

Thank you so much. I shall try and put below the data that I am drawing from the written diagnosis. Still so very new that Im afraid I understand very little of it but here goes (just copying the report):

PSA 4.18

There is Homogeneous intermediate T2 signal throughout the peripheral zone which is probably inflammatory (PiRADS 2)

small 8mm slightly more pronounced area of low ADC signal and enhancement in the left apical peripheral zone at 4 oclock. this is non specific but could represent low volume disease (P1 RADS 3). The capsule is intact. Seminal vesicles free of disease

Fourteen protstatic biopsies from 2 sites gleason 3+4 overall (Grade Group 2 at 1 site (left PZ), maximum tumour length 6m (35%). Perineureal invasion i seen. No evidence of lymphovascualr invasion.

Thank you so so much for your views as to my situation. I am bewildered and overwhelmed. And to be honest do not understand anything of the implications of the diagnosis above .

User

Posted 07 Sep 2020 at 22:04

Originally Posted by: Online Community Member

There is Homogeneous intermediate T2 signal throughout the... .

Wow that is quite a detailed diagnosis. BTW the T2 mentioned above is nothing to do with the staging, it's about how Mri signals are transmitted. But I'm still fairly confident that from all the rest of your diagnosis.

Your PSA is 4.18

Your gleason 3+4

T2N0M0

In particular the capsule being intact, Seminal vesicles clear, and the reasonably low psa make this sound like a very treatable cancer. It is unlikely to have spread.

Surgery would almost certainly remove this cancer completely, but find out if it would be nerve sparing, if not you won't have a good sex life, if it is, you may have a good sex life but nothing is guaranteed. You may have incontinence.

HIFU may be possible, but may not be available on the NHS. It is not a very invasive treatment but isn't very successful and may need repeat treatments. A few members on here have experience of this and will help you if you are interested in this treatment.

Brachytherapy either LDR or HDR may be possible. Not as invasive as surgery and probably just as successful.

EBRT even less invasive, but will result in radiation dose to bowel etc. Which is not very desirable.

ADT, also known as HT may be offered at the same time as the other treatments. it can make them more effective.

Fortunately Chemotherapy is irrelevant your cancer is not advanced.

I can't think of any other treatments but there may be some.

Just pick whichever seems best for you post it on here and see what other people have to say. Then choose another one if it doesn't sound right for you. When you see the specialists you will be so much better informed.

Edited by member 07 Sep 2020 at 23:02 | Reason: Not specified

Dave

User

Posted 07 Sep 2020 at 22:34

Originally Posted by: Online Community Member

I am a 61 year old man just diagnosed with Prostate Cancer. My Gleason score is 3+4=7. The clinical report says, "Peruneurial invasion is seen; no evidence of lymphovascular invasion"

Many thanks

Hi Raphael

The best thing for you to do is read up on the options available and, if possible, visit the specialists to see what they advise. For example, I was Gleason 3+4=7 and was offered Surgery or Radiotherapy (+ or - hormones).
From your diagnostics it doesn't sound like there is an urgent rush to decide, so it won't hurt you to take a bit of time to work out the pros and cons.

Younger men are often pushed towards surgery - particularly if they are fit.

Older men are often herded towards radiotherapy.

At 61, you're somewhere in the middle.

At 50, I went to see both oncologist (for radiotherapy) and surgeon. It turned out they BOTH said surgery was probably a better option for me. Since it was already my preference, it was an easy decision.

I hope it will be similarly straightforward for you to decide, once you've absorbed all the information. 😀

_____

Two cannibals named Ectomy and Prost, all alone on a Desert island.

Prost was the strongest, so Prost ate Ectomy.

User

Posted 08 Sep 2020 at 00:20

With perineural invasion, asking the surgeon to clarify whether or not the nerves will be spared seems pretty crucial. The PNI may be well inside the prostate and not affect the decision to save some or all the nerves at all but it would be a shame to make a decision without a key bit of the jigsaw.

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

User

Posted 08 Sep 2020 at 01:10

I and three friends were diagnosed at the same time. We were all aged around 62. Three of us had prostatectomies via top ‘Harley Street’ surgeons, and the other one at his local NHS hospital.

All three of my mates have had recurrence and are undergoing hormone and radiotherapy to kill off any remaining cancer, but they could have had that in the first place and avoided surgery!

You are on the horns of a dilemma pal, so best of luck whichever path you choose.

Cheers, John.

User

Posted 08 Sep 2020 at 06:53

To all of you above who have been so gracious and generous with your replies, I thank you from bottom of my heart. It seems that the "correct" route is not clear cut. So I shall research further and post back.

Thank you again so much

User

Posted 08 Sep 2020 at 17:12

I am 2 years post RP. I had very similar diagnosis to yours.
I used the toolkit to educate myself.
What I found is a lot of my friends have had prostate cancer and so got some very useful insights. Btw it’s can be a real conversation killer at a dinner party hence why many chaps don’t openly discuss.
I was extremely lucky to be in SW London and in the catchment area of the marsden. I was frustrated because the experts wouldn’t make the decision for me. I went for RP because I was ‘young’ and fit, the quality (track record) of my NHS surgeons, HT was a real worry to me (many of my mates said it’s hard work) and in my gut I just wanted it gone.
For me the surgery was a doddle, easy.
Biggest shock happen at 6 week review of histology - I was T3B Gleason 9 - surgeon said my cancer was far more aggressive than normal and what he expected, he changed my prognosis. It certainly was not trivial. I had a very close shave, he told me based on the histology if I had delayed by 6 mths I could have had metastasis into the lymph nodes (he took 23 out and all negative). This made me focus real hard on doing everything right.
6 months post surgery my life was almost normal except ED. I was told I had partial nerve sparing but no action at all. Doc said be patient and put me on Ciallis and a pump.
After 12 months noticeable ED improvement, but still a long way from meaningful.
At 2 years post RP I can now have penetrative sex. I have also undetectable PSA count on every review - next week will be my 2 year result then I am only yearly testing at GP (assuming another undetectable). So in the end I am happy with my decision, no regrets. My life could not be better. I owe a lot to my surgeon.
My key advice: use the tools available to you, use the doctors and nurses to address questions (be careful of the internet), involve your partner to understand what’s going to happen to you, prepare yourself mentally and get physically fit before whatever treatment.
Good luck whatever your choice.

User

Posted 08 Sep 2020 at 18:00

Thank you John. so helpful.

May I ask all a rather innocent question. With my diagnosis,would it be right to say (albeit superficially) that with a diagnosis like mine the more invasive the treatment (notably RP surgery) the more likely I might be to get "clear", but the more likely there is to be meaningful, potentially irreversible long term side effects. Whereas by contrast the less invasive the treatment (most things other than surgery) the less likely the chances of "the all clear" but the less likely to have meaningful, potentially irreversible long term side effects?

User

Posted 08 Sep 2020 at 18:29

No, it doesn't quite work like that.

All other things being equal (e.g. with a contained prostate cancer at T1 / T2) the outcomes in terms of recurrence at 5 and 10 years is almost identical for surgery, external beam radiotherapy and brachytherapy, and at 10 year point there is still very little difference between these radical treatments and active surveillance. For a man with a T3 prostate cancer, the odds start to look much better at 5 & 10 years post-RT than they do post-surgery.

If there is any suggestion of pelvic / local lymph node involvement, the statistical outcome at 5 & 10 years is better for RT than surgery.

The 'less invasive' treatments that have least risk of side effects (laser / freezing type treatments and HIFU) also have high rates of recurrence so are generally more suitable either for men who can fund multiple attempts or as a salvage option after a recurrence.

On paper, surgery would appear to have the best chance of remission but it won't take you long to realise that this forum is littered with men for whom the surgery was not successful. There are not so many members who have had a recurrence after radiotherapy / brachytherapy. However, it is also important to understand that this forum has a bias - most regular posters are here because either they were advanced at diagnosis OR they have had a recurrence post-op OR they were left with life changing side effects. Men who have had their treatment, don't have many side effects & achieve full remission tend not to need a forum like ours.

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

User

Posted 08 Sep 2020 at 20:56

I am happy with my choice of treatment, even though it has left me with a truncated and flaccid penis. ‘They’ say that in a few years’s time people will laugh at the idea of prostate surgery, because everything will be treated via nuclear medicine.

My fifteen-year prognosis doesn’t look great, with more chance of recurrence than not, but by which time I could be dead of something else!

At least I am not looking at bowel and bladder problems a few years down the line as a side effect of radiotherapy.

Talk to your surgeon, talk to your oncologist, get second opinions if you want. The MDT will discuss your case, and their advice will be useful, but not definitive.

🤞

Cheers, John.

User

Posted 09 Sep 2020 at 01:17

It is a difficult choice. If one treatment was clearly better than the others then you wouldn't have a choice, it would just be the default treatment, and nothing else would be offered.

As Lyn has said once you are dealing with more advanced cancer the RT starts being the clear winner, so in my case I was offered no other choices.

Dave

User

Posted 09 Sep 2020 at 07:06

Thank you all very very much. I am now deep in conversation with the doctors and we are leaning toward surgery. May I please trouble you for any advice on ways to "prepare". Diet, exercise etc. they have said that preparation of certain types will aid the outcome. Is that right?

User

Posted 09 Sep 2020 at 08:09

A couple of things you should do beforehand regardless of which treatment...

1) Pelvic floor exercises - get going on this. Makes a big difference to your continence afterwards.

2) Being fit - makes a significant difference to general surgery recovery times, and reduces fatigue for radiotherapy/hormone therapy.

Also important for surgery...

3) Avoid being overweight if you can (being overweight makes the surgery more difficult).

Wishing you good luck.

User

Posted 09 Sep 2020 at 10:33

Good luck with whatever choice you make.

I went the surgery route and have no regrets at all. ( check my profile)

I'm about 6 months on, undetectable PSA and everything more or less back to normal. I was fit before the surgery and returned to exercise as soon as sensible afterwards which I'm sure helped.

User

Posted 09 Sep 2020 at 11:40

Thank you so much Mike and Andy. I am so grateful for the reassurance. we are feeling fearful as you can imagine.

User

Posted 09 Sep 2020 at 17:51

Hi
Agree with above points preparing for surgery.
My surgeon (who was a very fit person) gave me a routine which included aerobic fitness, core strengthening and pelvic floor exercises. He stressed I was not competing in the olympics so do it in moderation. He joked he didn’t want me having a heart attack before surgery.
I had a passion for Maryland biscuits - he suggested for the 8 weeks leading to surgery reduce or eliminate alcohol and reduce sugar to reduce weight. I think this significantly improved my recovery and help me mentally to prepare for surgery.

User

Posted 12 Sep 2020 at 22:08

So it seems that I am heading toward surgery. Confirmed. Any advice on the best "preparation" for the Op would be so much appreciated

User

Posted 12 Sep 2020 at 22:23

I think Andy has given you the best advice on preparing for RP above ⬆️

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

User

Posted 13 Sep 2020 at 06:54

Thank you Lyn

User

Posted 13 Sep 2020 at 09:05

Get a waterproof mattress protector to avoid a map of Tasmania on your bedding after the inevitable leaks!

Available from everywhere including Dunelm Mills.

Good luck.

Cheers, John.

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