Just been diagnosed, need more info please!

Hi Jake,

From your PSA, staging and biopsy result, I find it very queer that you've been offered only one option - the complete removal of the prostate. With figures like that, most of us seem to be offered, what can be, a bewildering number of treatment choices. So I would strongly suggest you ask to speak to both a urologist (for surgery options) and a radiologist (for IRBT options).

If you do have some peri-neural invasion, than a radiation related option might be a better course of action.

Flexi

Hi Flexi, Hi Ezza,

Thank you both very much for your quick responses. I was surprised too to only be offered one option. In addition to the Gleason score etc, the nurse seemed to be taking my age into account when recommending surgery. I think the thrust of it was 'you're only 42 so it's quite likely you'll need your prostate removed at a later date, and since that becomes very tricky after radiotherapy, it's best we just take it out now'.

I'm trying to make an appointment to see the oncologist at the hospital (to discuss radiotherapy options) as well as the surgeon but it's really useful to get any other advice in the meantime. Thank you for the info on the toolkit - I'll look into that now.

Thanks again

Hi Jake,

Gleason 7 is classed as intermediate, the most aggressive cancers are G9 and G10.

You can instantly download a PDF of the Toolkit information folder, but I would also order a hard copy as it contains several comprehensive booklets covering all aspects of the disease, some of which may not be pertinent to you. It’s useful to have just the relevant ones to hand.

I am pretty sure there will have been an oncologist present at the Multi Disciplinary Team meeting, but it’s well worth talking to an oncologist face-to-face to discuss hormonal and radiological options instead of surgery.

If you opt for surgery, do research the results of whichever surgeon you choose. High-volume surgeons (more than 100 prostatectomies a year) tend to have better outcomes in terms of recovery, continence and preservation of erectile function than those who carry out fewer.

My own surgeon does 3-400 ops a year, and I am very satisfied, as are several others here who had the same guy.

Best of luck.

Cheers, John.

Edited by member 15 Mar 2019 at 13:21  | Reason: Not specified

Thanks again, everyone. I spoke to my cancer nurse again today and she's making me an appointment with an oncologist as well as the surgeon. She still says she'd bet on the oncologist strongly recommending surgery as the best option for me. She insists it's my age that is the driving force behind that recommendation.

As you've all said, I need to arm myself with info and lists of questions before I have my appointments.

Bollinge - Good idea to check the data of the four surgeons working at my local hospital.

Lyn - yes, I'll need to consider sperm banking. Unfortunately it is going to be costly as we have two children already and therefore we would have to pay for the banking/IVF etc ourselves.

Thanks again, and best of luck to you all too.

At best guess, with surgery being the only option will be based on your family history of prostate cancer.
Yes you are at a young age to be staged at that level. But remember, you only get one shot at radiotherapy.
The multidisciplinary team are suggesting the best route for you.
If you have a prostatectomy, you do have the option of radiotherapy if you find a few cells have already moved.
The staging can only be be accurately defined by a whole biopsy.

Just remember the cancer specialist nurse at prostate cancer does NOT have all the information for her to make a valid comment. The only people with all the relevant info is the multidisciplinary team. I would go with the advice of the oncologist, readiologist, surgeon etc rather than a nurse.

Edited by member 07 Apr 2019 at 19:55  | Reason: Not specified

Just wanted to add one thing. My husband has a large prostate and they discourage radiation here in guys with larger prostates because it can be harder to do radiation without damaging the nearby organs. Thus, the side effect risk is greater.

Edited by member 11 Apr 2019 at 03:09  | Reason: Not specified

I am surprised that the Mayo are saying this, Sally as it is not what they have published in relation to research they have undertaken. It may be causing you additional stress that you don't really need right now. 

Very few prostate cancers are thought to be genetic (less than 5% according to EU data) although it may be higher in the US? Where PCa is prevalent in a family, it is more likely to be environmental - they have eaten the same foods cooked the same way, drunk the same water & breathed the same air. Whether or not a man will develop prostate cancer is probably determined in boyhood. 

The most recognised genetic line is the BRCA genes 1 & 2, although there are a number of others. The BRCA cancers do tend to be more aggressive. What also seems to make a massive difference to outcomes is age & race - black African / African Caribbean men seem more susceptible to aggressive forms, as are very young men (in their 30s or 40s). Most hereditary prostate cancers will not just present through male relatives with PCa; there will also be evidence of early onset PCa (in their 50s or younger), at least 3 direct male relatives in the same line, female relatives with breast cancer diagnosed before the age of 45, close female relatives with ovarian cancer, male breast cancer cases, etc. 

The biggest risk factor is being male, which a man will have in common with his father, brothers, uncles, etc - 60% of men in their 60s and 80% of men in their 80s have some cancer in their prostate.