Newly Diagnosed. Upset, angry and terrified

Good morning John..

I hope you had some answers to your questions yesterday and are a little clearer on what is happening.

Please ask any questions if you need any clarification or just some reassurance.

Take care.

I know I’m ahead of the curve (you messaged me -  great to hear your news) - I’m repeating my advice here for the benefit of others who may have a similar diagnosis to yours.

Your consultants are quite correct - you have plenty of time to decide on your pathway.   As you read my bio, you will know that I had some aggressive features (note the use of the word “had”).  These were AIP, Cribriform (both indicate a tendency to break off and get into the lymph system and round the body - “distant metastasis “ and also some amyloids in there too. So we decided to throw the kitchen sink at it.   Your case is different. You are classic T2 N0 M0 - even “active surveillance “ may have been an option, but I guess you want to cure it ASAP!
Just brachytherapy alone, or brachytherapy boost (external beam to prostate only) would be a good option: but I’m not medically trained and I don’t have your full case notes!  Might be worth asking your consultant though.  In particular, brachytherapy alone would be appealing as you can always go back with external beam and temporary hormone therapy if necessary.

Here’s a new bit of advice that may be useful to consider:   There is a school of thought that the combination of internal and external radiation is best delivered together to knock the cancer out in one fell swoop. The reasoning is that if you just deliver brachytherapy, it kills all the cancer cells inside the gland BUT if a tiny bit has escaped into the pelvic area, it would emit a tiny PSA so would have time to grow and disperse before it is picked up on PSA test (too small to see on scans).  HOWEVER, in your case (with no aggressive features) this is unlikely.

Hope these thoughts help you to formulate questions when you discuss your choice options with your consultant.  As you are relatively young, you need to look carefully at side effects of the various treatment options.  Remember, you have NO aggressive features (think of the cancer as a wart growing - very slowly- in your prostate gland). Prostatectomy is a very big operation (even though people think of keyhole surgery as not too invasive) because the surgeon has to (a) reconnect your urethra after removing the gland (b) the surgeon removes your upper sphincter valve so you rely on the pelvis floor to control urine for the rest of your life, and (c) the surgeon has to move the nerves covering the gland to remove it (these nerves control erections, and are a delicate weave that are tricky to move).  Of course, the removal of the gland - if the cancer is indeed fully contained - will completely cure you.  This would be confirmed once they have the gland in the pathology lab.

AW

Ah - just seen your private message about being T3a after all - so they’re not completely sure if it’s broken out (or bulging the side of the gland). The above thoughts still apply, but AS and focal therapies (nonoknife, HIFU, etc) would not be options.

AW

Hi all. Meeting with nurse last Thursday. The good news is that I am clear on my CT scan. Phew! I only had it 2 days prior. No spread. So my diagnosis is PSI 5.3, Gleason 4+3 N0 M0 and curable pathway. Bone scan on Wednesday next week which nurse said was a tick box exercise as, because of the CT being clear, they’re not expecting any issues. Good news on the one hand but the reality of having this disease is causing me severe anxiety and some depression. I just wished I could feel better and more positive 

So glad to hear the CT was clear. now you're on a curable pathway hopefully the light at the end of the tunnel is starting to show. None of us are happy about having this disease, and anxiety is normal, hopefully it will get better when you see you're not alone in this. You will beat this C.

I am so pleased to hear that you are on a curative pathway and that nothing extra has been found.

Have a word with the doctor about getting something to help you mentally - there are different resources available to help you get through this plus Macmillan might be able to arrange some free counselling with BUPA if you feel this might help you. Here is the link.

https://www.macmillan.org.uk/cancer-information-and-support/get-help/emotional-help/bupa-counselling-and-emotional-well-being-support

Hi John

The news that you have no spread and will be treated with the intention to cure is a massive relief! I  remember that feeling well - I cried with the relief when we heard this!

your emotional reactions have been very similar to my own when my husband was at that early stage of ‘what ifs?’. They will settle!!! 

There is, though, a time and a place for seeking help if it all becomes too much for you to cope with. It seems to me that you are questioning whether you have reached that time and place? This is a question none of us can answer, I’m afraid. We did manage to get through those dark days without resorting to medication but there were days when I wished I could stop my brain whirring round, when I could sleep, when I could stop feeling the pain, the fear, the anxiety, the darned tears etc. 

So, I hope you can now focus this weekend  on this safe haven provided by some good news at last following weeks of  ( as I put it in my diary) continual ‘dollops of bad news’. You have reached the turning point in this PC journey now - the only was is up! Keep hanging on in there - as many of us have said - the diagnostics part of the journey is the worst part!

celebrate your good news and, when you are up to it and start researching the different treatment pathways with a different big C in you’re mind - intention to CURE :)

Glad its good news mate, I have advanced prostate cancer and have accepted it,  getting depressed is not going to change the outcome, live for today, going into depression is going to give you other health problems like heart disease etc studies have shown. We could all die today so living with a treatable condition is a piece of cake, 

Thanks Neil. You make total sense. I suppose it’s getting over the shock of it all, coming out of the blue, and coming to terms with it. I have and am finding it so hard and have sought support. This forum is life saving in my opinion 

Thank you so much WW for taking the time to reply is detail which I have found so helpful and soothing. You make total sense. On the back of this ugly situation there is a positive for me that being a curative pathway. I just feel so low that I just find it hard to see the light. I have a counselling session booked with Macmillan next Tuesday. I’ve also dropped into the Maggies a couple of times last week. They were very helpful. One day at a time. Thank you again