Just joined the prostate cancer club

User

Posted 12 Dec 2019 at 09:27

Hi,

I'm almost 55yrs of age, I got diagnosed yesterday, so everything is a bit of a blur at the moment,

I am now waiting for a MDT appointment. The consultant yesterday said I will need treatment and the MDT will discuss my options,

He also gave me some figures, but they mean nothing to me, maybe someone could decipher them for me.

R = 1core 3&4 and 1 core high grade pin

L= 2 cores 3+4

I was wondering what people's thoughts were on the treatment they received.

Like everyone I would love not to suffer incontinence or erection problems, but I presume these are just something I have to put up with.

Thanks in advance

Chris

A very confused Chris

User

Posted 12 Dec 2019 at 10:56

Hi mate , you couldn’t go wrong by phoning the specialist nurses. They are AMAZING and immensely knowledgable. They can talk you through the options available to you. Or go to the publications section of the website and download the toolkit which is a great start. With your figures there is no urgency for treatment I suspect and you have time to make your mind up. You could click my picture and read my profile but it’s not the most positive lol. I had surgery but you could have HT and Radiotherapy instead , or you could just monitor it for a while. Any treatment can bring life changing side-effects and some men have better outcomes than others. Call that number and get started. Good luck

User

Posted 12 Dec 2019 at 11:03

Hi Chris,

Sorry about your diagnosis. As Chris J mentioned, the "toolkit" in the publications section is a good place to start. Those figures you quoted look like gleason scores from your biopsy. (Page 10 of "How prostate cancer is diagnosed" has a really good explanation).

Yes, It's all a blur, but talking to a nurse will help make sense of it. And as Chris says, there are plenty of treatment options.

We're all up the same creek but there's plenty of paddles to go around.

Good luck.

Kev.

User

Posted 12 Dec 2019 at 11:26

Hi, You should get an MRI and possibly a bone scan if you haven't already had one. They should have said your overall Gleason score which looks like 3+4.

They then give you a stage and that often determines your treatment options.

Side effects can vsry. Sometimes they're less. There's an element of severity of case and luck.

Most men live on and die of something else.

Good luck. Write down your psa, Gleason and when you get it, staging.

regards Peter

User

Posted 12 Dec 2019 at 11:29

Thanks

User

Posted 12 Dec 2019 at 11:49

Chris

Generally speaking you do not attend the MDT meeting, a collection of consultants , doctors and nurses etc meet each week and discuss each patient's case, they will then put forward a choice of treatments suitable for that person and it is up to you to make the choice. Not all hospitals offer all available treatments.

You may wish to have appointments with a surgeon and an oncologist to discuss the proposed options.

As already said the toolkit and this sites nurse are a good starting point.

Thanks Chris

User

Posted 12 Dec 2019 at 13:40

As suggested 3+4 is likely to be Gleason Score (This signifies the degree by which the cancer removed from non cancerous cells using a scale of 2 to 5 althogh 2 is rarely used now and some view 3 as hardly qualifying as cancer. The first figure given is the grade given to the most numerous number of cancer cells and the second figure the next most commom. L & R would be Left and Right side of Prostate. PIN is a grade given to cells that may remain the same or quite possibly further mutilate into cancer cells.

Other important figures to obtain are your PSA on diagnosis and your staging which is usually given at full diagnosis when results of all tests and scans have been considered.

Some men have a Focal Therapy but this is less likely with cancer in both sides of your Prostate.

Let us know what treatment you are offered.

Edited by member 12 Dec 2019 at 13:43 | Reason: Not specified

Barry

User

Posted 12 Dec 2019 at 13:59

Thanks

User

Posted 12 Dec 2019 at 14:00

Thank you

User

Posted 12 Dec 2019 at 16:22

Hi.

I am sorry that you find yourself here but you will find a tremendous amount of support and useful information. My oh found out his diagnosis 9 years ago at 63. He didn't really have a choice as an operation was not possible so he had ht then radiotherapy and over the next few years several different combinations of treatment which kept him well and he is still active. There were some side effects but everyone is different and the best thing is to discuss everything and ask questions so that you understand. It might be useful to have someone with you because it is easy to miss points when you are still a bit shocked.Good luck.

User

Posted 12 Dec 2019 at 19:27

Originally Posted by: Online Community Member

I was wondering what people's thoughts were on the treatment they received.

Hi Chris,

I should have added my thoughts are written in my profile. This gets asked a lot, I should have a cut and paste ready.

Overall my thought, and it seems the main thought of almost everyone what-ever their treatment choice, is surgery was a good decision I wouldn't change.

That said, there are quite a few treatment paths and different cases are offered different choices. I wasn't encouraged to go for Brachytherapy perhaps because it wasn't readily available. Also robotic surgery at that time was only available at a hospital elsewhere. I didn't want to travel far or wait longer.

Some people travel for novel techniques such as Retzeus Sparing (or something spelt like that).

I could go on but most of it is in my profile.

Regards Peter

User

Posted 17 Dec 2019 at 16:51

Phone the nurses today, after a slight meltdown, wish I'd of spoke to the earlier.

Chris

User

Posted 17 Dec 2019 at 18:18

Hi Chris,

There's no shame in that. I've had some moments myself, and talking to someone definitely helped me.

Good luck.

Kev.

User

Posted 19 Dec 2019 at 19:35

When you have done the research and decide on what treatment you want, remember that if your local hospitals do not offer a particular treatment you can opt to travel to somewhere that does.

That's what I did.

John

Gleason 6 = 3+3 PSA 8.8 P. volume 48 cc Left Cores 3/3, Volume = 20% PSA 10.8 Feb '19 PSA 1.2

Jan '20 PSA 0.3 July '20 0.1 Jan. 21 < 0.1 Dec 21 <0.01 June '22 <0.01 April '23 <0.01

User

Posted 22 Dec 2019 at 18:26

Thanks

Happy xmas

User

Posted 24 Dec 2019 at 22:56

Hi. Sorry you have found yourself in this club. Around this time 5 years ago I found myself in exactly the same place. Please feel free to read my profile to see my progress.

THE CHILD HAS GROWN, THE DREAM HAS GONE

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