Recently diagnosed.....

Hi Spicyparsnip welcome to the forum, I know the very people who can help with your queries and by me answering your post it will pop it right into the thread for others to see and respond to.

Sending very best wishes for now . 

Hi SP

Sorry to hear about the PE.

Your stats look quite low so a good contender for active surveillance I would have thought.

Bit puzzled by the MRI though. I am assuming that the low grade cancer is in the prostate capsule and not spread outside. It says TN Mx,  Mx means not known if spread outside to bones possibly.

So that needs clarification.

If Def contained then choice of removal or Radiotherapy.

Do come back if u have more info about any possible spread that they have mentioned 

Best wishes 

Steve 

Hi spicyparsnip, maybe you should consider seeing an oncologist, you being CPG 1 indicates a low risk benign cancer, I understand having cancer increases the risk of clotting, I have heart issues, though my cardiologist see's no need for medication, and I can understand you wanting rid of the cancer but you have time to research your options, learn from others and talk to professionals.

Eddie

Hello spicyparsnip .

Sorry to hear about the PE which can be dangerous but hope you are recovering from it now. Also welcome to the forum.

Firstly, age at diagnosis. I have been trying to find if there is evidence for whether treatment is recommended for men of your age with Stage 1 but with very limited success. There is one recent article which suggests that it should be treated but it defines young as below 40. With your statistics Watchful Waiting or Active Surveillance would normally be recommended but with your PSA bouncing around there is something going on. There is evidence that if you are treated with either a prostatectomy or radiotherapy then the overall statistics on survival and risk of progression are the same as for an older man. If you have a family history of cancer this can increase your risk of also being diagnosed with it. Urologists have their own speciality whereas Oncologists deal with all types of cancer. The problem is that you normally have to be initially assessed by the Urologist before you can get referred to the Oncologist unless you decide to go down the private route. I think your first port of call is to go back to the Urologist and press your concerns about age and get confirmation that there is no spread. If you are not happy with that conversation then you can always ask for a second opinion - each health authority has its own protocol but we can also help point you in the direction of how to ask for it if you want it.

There are several treatment options available to you and choice will depend on your own priorities so to start with I would recommend reading the free book on this link which will give you an idea of what is available. If the cancer is very localised then there could be the option of focal therapies which just target that area with a small margin which reduces the risk of collateral damage. There is also Brachytherapy where radioactive seeds are implanted into the prostate to kill the cancer. This can be done with or without radiotherapy. Radiotherapy on its own is a possibility. Then there is surgery. Not all health authorities can carry out the procedures but should refer you to where it can be done. Have a read of the book, prioritise what is important to you and come back if you have any questions.

https://issuu.com/magazineproduction/docs/js_prostate_cancer_guide_for_patients_ezine

Hi my name is Derek in 48 and recently diagnosed with a Gleason 6 grade 1. 22 biopsy’s and 95% clear. Not had my meeting with the oncologist yet but it’s hard to find any literature on men in their 40’s. Mental battle at the moment and a bit angry at the lack of non evasive treatments available. I’ve been reading about photodynamic therapy and that it looks really positive. Also cryotherapy which is also looking like a good option but rarely available. Partial ablation not being done in Scotland only full removal of the prostate. Why are the NHS dealing with people like ourselves the same as someone older with higher Gleason scores and grades when we are completely different cases.

I wouldn’t worry about the Mx: it just means that they haven’t done a bone scan (and with a grade 1 PCa, they have assessed it as not required).    AW

Good Morning Derek Del 48 

Welcome to the Macmillan Online Prostate Community, although I am so sorry to find you here. 

The "problem" with the NHS is lack of trained staff, each Health Authority having different guidelines and cost! On you personal Prostate Cancer journey you will find it pays dividends to be proactive - know what you want and where you want to go and to be gently persuasive. You will find the rules in the devolved nations are different too.

To enable us to give you the best help and support can I ask you to join the forum (just click on this link)-

Prostate cancer forum 

and add your details to your profile. Gleason, PSA and TNM staging from the biopsy. To do this click on the chair on your home page (top right) then "profile" then "edit". When you have written something don't forget to click on "save" (you can read my profile by clicking on my avatar).

Throughout the UK if they are going to treat you it's usually a choice of Surgery, Hormone & Radiotherapy or Brachytherapy. The choice is usually yours although Brachytherapy isn't offered everywhere.

There are also clinical trials you can consider. Here's the link to the full list of open clinicl trials for Prostate Cancer being run by Cancer Research UK.

https://www.cancerresearchuk.org/about-cancer/prostate-cancer/research-clinical-trials

I do hope the above helps - please come back to me if you have an questions.

Best wishes - Brian.

Hi Del 48 , sorry you have joined our club and at such a young age.  In my experience we are all treated individually and I would hope that your age will play a large part in your treatment plan.  Waiting is the hard part and I hope you get to chat with your oncologist soon.  Best wishes, David

Hi Millibob they haven’t told me the TNM score only the Gleason and grade and biopsy results being 95% clear and 5% not

Good morning Derek (Del 48) 

Thank you for your reply - here's our guide to Prostate Cancer staging-

https://www.macmillan.org.uk/cancer-information-and-support/prostate-cancer/staging-and-grading-of-prostate-cancer

As it's a Grade 1 and Gleason 6 it's slow growing you can go on either "Active Surveillance or Watchful Waiting" details of both are in the link below-

https://www.macmillan.org.uk/_images/Prostate_cancer_Final_English_tcm9-343241.pdf

I do hope this helps, if you have any questions please do come back to us.

Best wishes - Brian.