Diagnosis journey continues, not straight forward

Hi Worried wifey, I noticed that nobody had responded after 7 hours, so assume that it is not a usual question.  I guess the question you want to know is can the area near the lymphs be affected without the actual lymph nodes themselves.  Without precise medical knowledge, my gut feel is yes, but not sure what difference it makes.  The issue is presumably ‘is it contained within the prostate gland or not’.  Only the PSMA is going to give you that info I think.  My answer probably doesn’t help but if I am wrong, hopefully someone else will comment or by me giving this answer, we will bump you back to the top of the list.  David

Hi David,

Thank you for your reply. My question is not straightforward so didn’t expect many responses.

My question really was, is there anybody within group with a Gleason score of 3+4 who has had their cancer spread to the lymph nodes outwith the pelvic area,  without the lymph nodes within the pelvic area or close to the prostate being affected.

Thanks

My diagnosis was Gleason 9, with lymph nodes close to the Gland. 

The recommendation was combination hormone therapy and radiotherapy . The radiotherapy was pretty long and I finished a couple of months ago.

Everything suspect in the area has been clobbered with radiation, and over the next months the cancer will wither and die. Hopefully they will have got everything. 

So my case is different.

In your other half's case they at least suspect that the colitis is messing about with the lymph glands,

This I seems to me like one of those situations where "hurry up and wait" is the order of the day. I'm sorry because it's a rotten time.

I don’t see how it could be out of the area without having spread via the local lymphs but that is just my uninformed view.  The PSMA will give you a much better handle on what is happening.  Sadly waiting and worrying is the way forward.  David

Many thanks for your reply.  Yes, the waiting for the test and final diagnosis is very hard and I sometimes wonder if life, even with the worst case outcome will ever return to some normality.

The nurse specialists were very clear that the PET scan had to be done, so that they were clear with what is going on. Yes, the waiting for the test and final diagnosis is very hard and I sometimes wonder if life, even with the worst case outcome will ever return to some normality.

Hello Worried wifey

From one worried wife to another ….!

im afraid I can’t answer your specific medical question because I just don’t know!

However, although chronic inflammatory bowel conditions are considered a ‘no go’ for radiotherapy, I have heard that it is not totally impossible. I think I’ve read somewhere that there is a specialist in Leeds who can manage such treatment? Sorry, this is a bit vague but my comment might jog somebody else’s memory?

i wanted, though, to respond to your comment about whether life will ever be the same.

if you think about it, life events change our lives constantly without us really asking this question : a birth, death, new job, kids leaving home, moving house etc. Any new diagnosis of a long term condition ( including cancer) can be included in that list! 

I think that for us the word ‘cancer’ held connotations of fear, premature death, pain, suffering etc in the initial stages. I think, too, that we were grieving! This grief was brought on by the realisation that our old way of life had been changed by circumstances beyond our control and a sudden realisation of and confrontation with our own mortality. None of us will live for ever!

but , that said, there was an unexpected compensation with this realisation! As a family we all pulled together and in our relationships we all became much closer and appreciative of each other! My husband and I realised that more and more we should make the most of each and every passing day we have together and let tomorrow ‘take care of itself’!

So, yes, life does change - just as other events change things. But, those changes have their positives as well as their negatives - just as other life changes do! 

you are at the worst part of this cancer journey with lots of appointments, questions, fears and anxieties going round and round in your head! I used to feel it was suffocating me. However, try to stay in the here and now and be reassured that, once your medical team has a clear understanding of what is, what is not and what the most effective treatment should be, things do settle down. Life then trundles along in a slightly different way but usually , either prostate cancer, it trundles without a car crash being imminent! 

prostate cancer treatment has progressed significantly over the years and is eminently successful in managing the cancer even if it cannot be cured. Who know what new treatments might be coming down the track?!!! 

through this journey, do look after yourself as well! My own experience is that the NHS does not consider the wellbeing of  the patients’ partner! But, we are key in keeping our husbands as well as possible …. But this can take a toll on us!

I wish you and your husband the best of outcomes !

Thank you for taking the time to reply.  Your comments about grieving have really resonated with me, as I think that is what I am experiencing.  A the moment I can't see past the anxiety and fear that the situation has brought and the tears seem never ending.  

Good morning Worried wifey 

As Worriedwife correctly states, the NHS clearly don't think of the partner on any cancer journey, however support is there but you need to access it yourself.

Worried wifey said:

I can't see past the anxiety and fear that the situation has brought and the tears seem never ending.  

Do you have a "Maggie's" near you? - this is a cancer support charity where you can just drop in, have a brew and talk about "things". Here's a link "Maggie's".

We can also help with anxiety if you need this - I can give you some links to help if you need them and our Support Line is there for both of you on 0808 808 00 00 (8am to 8pm 7 days a week) They are a great bunch and can point you in the right direction.

Nobody should travel the cancer journey without support. I hope the above helps, if you need some further links just let me know.

Best wishes - Brian.

Hi Worriedwife what a brilliant post in reply to Worried wifey and so completely true.  David