Only 1 Treatment being offered

Paul

Typically, but not always the surgery and RT with or without HT are offered. Have you had any previous Radiation therapy.

The scan will either be bone,CT or possibly both.

There is some useful information in the download kit and the nurses on here are very helpful.

Thanks Chris

Hi Paul,

I'm sure its all a bit of a shock (as it was for any of us) but you should get plenty of help on here.

Have you already had an MRI scan?

Assuming that the cancer is all contained within the prostate then nerve sparing surgery may well be a very viable option.

However, RT with possibly HT may be another option. Have a look at my profile for a bit of background. And ask away on here

Edited by member 06 Aug 2020 at 16:11  | Reason: Not specified

RT and HT as you have summised

It is the whole prostate out and with it hopefully the whole of the cancer.

Operation is OK and expect several weeks of recovery but nothing too bad ( considering its a major operation)

Main concerns generally are 

incontinence- for many this is short lived

erectile disfunction- slower recovery but can be achieved depending upon a number of factors

Edited by member 06 Aug 2020 at 16:54  | Reason: Not specified

Some of things you will want to know

Is it Gleason 4+3 or 3+4

From the biopsy how many cores had cancer, on which side(s) and what percentage

What stage is the Cancer T1 then a letter, T2 then a letter , T3 then a letter 

Anything spread out side of the prostate or close to the prostate edge

Is he looking at nerve sparing? Both sides or just the 1

Hi, 

Most people don't recall exactly what was said.  It can be better to go with someone else or to have a Macmillan Nurse/Specialist Nurse who you can ask.

Some doctors can make you more worried using the term aggressive.   Perhaps the 4+3 is the reason.   Although that is the 5th level out of 7.  The same grade mine was diagnosed as.

Being offered an op is good.  Presumably subject to a bone scan, unless they're doing something else.    They fit me in for a bone scan with a few hours notice.  You have a nuclear injection a few hours before then go away and come back.  I think they were having lunch while I was being scanned, it takes about half an hour no messing about with fancy dress.

You could ask why they didn't offer RT or alternatives like Brachytherapy.   Although I'd have been happy just to be offered the op if it was being done quickly or you particularly wanted RT.   Sometimes if you see a surgeon they might offer you surgery and you have to ask for something else although there should be a full team, The MDT or multi-disciplinary team, who have reviewed your case from all perspectives.   Perhaps with Covid they're more limited.

You could ask if he'll save any nerves and roughly where the lesion is located.  He did a little drawing of mine.

Some people are willing to wait and look at options but I wasn't.  Largely because it was near the edge of the prostate.

All the best, Peter

"Regarding your options, my understanding is this, if you are still fairly young offering HT and RT is not the best option as side effects of these treatments can manifest and cause problems. HT and RT are usually offered to older gents. The general opinion is that Robotic Assist Prostecomy is deemed to offer the best chances of getting rid of the cancer."

This isn't right, Carlos. It may have been true for you but that doesn't make it true for everyone.

"RT can manifest and cause problems" - there is a small chance that it can increase the risk of bowel or bladder cancer some 15 / 20 years later but I think the increase is 4% or something like that, so negligible when deciding on a treatment to prevent you dying of prostate cancer rather sooner than 15 / 20 years.

It is also not right to say that surgery gives the best chance of getting rid of the cancer. A large scale European research project published last year (or the year before, I am not sure now) showed that all things being equal, surgery, radiotherapy and brachy have almost identical remission rates at 10 years ... it is the side effect rates that vary, not the success rates. Having said that, another research project found that AS has almost the same remission rate as active treatment.

Hi John can you clarify is that "no erectile function" -or- "no erectile disfunction" it could make a big difference to the decision?

Thanks Guys, This is All very helpful. feel a lot better today....

I had a follow up call. The Gleason score was 4+3 and I was a T2, NO letter, as they wanted a 2nd scan. 

I had 10 biopsys done (The surgeon at the time told me 12???). Was told, that 5 were positive which was 60% 4 and 40% 3, 5 negative. ????

The scan  is being done on Thursday at the Royal Marsden, Sutton and the consultant is based in Chelsea. Not sure I I am allow, or should put his name down...He did say, I think that RT/HT was not appropriate in my case.

Thanks again

Paul

Thanks Mike...

As John says, you are likely to lose some length of your penis due to cutting and rejoining the pipe during the op. However, a combination of HT and RT can also lead to a reduction in your penis. It is therefore important that you take measures at the appropriate time to maintain size and function after treatment.

Are you going private or on the NHS? There are only a handful of places that do Gallium scans in Britain, one being the Paul Strickland charity centre in London.

The radioactive Gallium tracer is very difficult to produce with a short half-life, so don’t be too upset if at the last minute you are told your appointment has been rescheduled.

Cheers, John.

Thanks John, Barry.

I am on the NHS, maybe I only live about 4 miles away from Royal Marsden in Sutton that I am being offered it, plus age??????

Take your point about getting all the tests done before knowing which one to go for but not heard of Cryotheraapy, will look up thanks.

Paul

Well. Had by PET scan and got results.

Seems its gone to both sides of the prostate, and is "touching" a small lymph node. No sign of Metastasis.

Next meeting is next Thursday as there "bumping" me up. With a Consultant specialising in radiotherapy, although I have been told nothing has been decided with out going though all the options.

Didnt want to say anything about my T level, other than we lets get you booked in ASAP...but I guess T3 now.

Very worried, but one step at a time i suppose....

Paul

He said it was "touching a lymph node". Can it be doing that if it's still contained in the prostate?

(I would think not, but don't know for sure.)

Sometimes, doctors make comments without realising that patients or their families will analyse every word afterwards. The doctor may have been speaking literally, in which case yes it sounds like you will be upgraded to T3. Or he may have been speaking figuratively, in which case you are still a T2. 

Well glad you are making progress with the diagnosis.

I went the surgery route based on being told that it was at least 80% likely that I wouldn't need any further treatment.

If its 90% likely you will then I don't know why they would go the surgery route? Will be interesting to see what the surgeon has to say.

Good luck

Hi All,

Saw Surgeon on Wednesday.

Was happy to do the surgery, but told me that I had only a 40% chance of the nerves being save (It might have been he could save only 40%, mind was a blur, to be honest, even with the wife there) , and that in his view it was 50/50 that I would have need HT/RT anyway.. Said he could the lymph node out, but there was no evidence that it would help in my case, as I was a N1.

A follow up letter from the radiologist to my GP stated that the PSMA PET scan showed a 9 mm low grade PSMA avid distal left common iliac node suspicious for involved nodel disease.

So with that, I decided that Surgery was out, and that HT/RT is the way to go… The surgeon did say that he could do surgery at a later date, but would be a more difficult operation, and I suspect I will lose all the nerves.

Started the HT on Friday, (Tables 1st), Injection on the 7th. I do however feel strangely “happy” that I am on this route, I just didn't fancy taking my chances with surgery.

Thanks for all you input

Paul

Hi I had diagnosis at end of March with a Gleason 3+3 confined to the prostate. I  was offered Prostatectomy in time due to Covid. But given Hormone tablets for 3 months with option of Prostatectomy or Radiotherapy. Not wanting either of these I looked into HIFU which wasn't doable and then Focal Cryotherapy. I t took a while but I  got a referral from GP and had the treatment in August. Still have Catheter which I hope to have removed soon . Hoping for a low PSA in 11 weeks time. 2 hour procedure under general anaesthetic  No pain 👍My PSA was 5.2 at highest.