Is it me or is it them?

Hello Mstev

Hmmm. I think what you are asking is what are the treatment options and the chances of cure and whether or not your treatment pathway should actually be ‘treatment to cure’ or ‘treatment to manage’? Please forgive me if I have misunderstood. I will try to give some response but please note - I am no expert in prostate cancer surgery or medicine so may be wrong!

I know at least one person on this forum who is Gleason 9 with lymph node involvement and is being treated with the intention to cure with RT and HT. I am sure that person will reply to you!

my understanding is that no scans can be absolutely guaranteed to pick up microscopic cancer cells in the body. Treatment with the intention to cure is just that - an intention but not a guarantee, unfortunately, for all of us. That said both surgery and the RT/HT pathways have good survival rates if the cancer has been caught early - far better than no treatment - unless, that is,  doctors think active surveillance is an appropriate option to offer.

i also understand ( but I’m not sure!)  that surgery may not be an option if the cancer has spread outside the prostate but I don’t know whether they can do surgery and remove one lymph node? The problem, it seems to me, is that they could be leaving behind microscopic, undetectable cancer cells lurking elsewhere. I’m not sure! This leads me to think that if there is intention to cure, RT and HT might be the preferred option - again, I don’t know for certain.

Your nurse is right in one sense - the cancer is either contained or it is not! But my own experience with my husband also conflicts with this! The MRI showed a bulging prostate wall. They were not sure whether the tumour was just making the wall bulge or whether it had broken through the wall into nearby tissue. The biopsies of the nearby tissue were all clear, but, going back to my earlier comment, we were told that this meant they had not picked up any cancer cells that might be there. He was thus assigned as T3A and treated accordingly. We were told they always treat to the highest possible level - just in case!

so, I’m sorry I haven’t been able to give you definitive answers but perhaps my ramblings might give you some ideas for further research?

best of luck

Hi mstev

Not quite sure what you're asking but here are my thoughts about your situation.

So escaped the gland and in local node(s).

Gleeson 9 so quite aggressive however  you have started HT which will help keep it from growing and further mets.

Still potentially curable but obviously more difficult than if was just outside the gland or think I 'm right in saying, in the seminal vesicles.

Not sure how long you've been on HT for but hopefully Radiotherapy will be starting soon.

If u have any other specific questions please ask

Best wishes 

Steve 

Hell0 mstev2  

Yes I have seen your post in "Ask a Nurse" - I am a little confused - do you want:

* Clarification of your condition? - Yes to me it's "locally advanced!

* Are you on a "Curative Pathway" or "Treatable" - You are in that grey area but from personal experience I would say it's probably "Curative".

I am a Gleason 9 T3aN0M0 - Initial PSA 182 - I am on a curative pathway. 

Worriedwife said:

Worriedwife said:

I know at least one person on this forum who is Gleason 9 with lymph node involvement and is being treated with the intention to cure with RT and HT. I am sure that person will reply to you!

I have a feeling that's me!!

The only difference between us is you have Seminal Vesicles involvement!

I have lymph node involvement and had them "zapped" at radiotherapy - all is good - I am 30 months into my journey and life is good (click on my avatar for the full details).

Yes I am on a curative pathway - but the initial PSA 182!! and the Lymph node involvement!! - My team have done what they can - I trust them - my journey may not be over  - BUT - I have trust in my team.

Personal advice - stop trying to work the odds and let your team get on with treating you - I have now got to the stage where my strap line may have to change to Doris Day's "Que Sera Sera".

As you say you are 

mstev2 said:

worry guts.

Try and relax - anxiety is not good - would you like me to point you in the direction of a little bit of extra help here?  Just let me know - We are all here for you,

The Hormone therapy will be doing it's job  - so all is as good as it gets.

Let me know what I can do for you - I have lots of resources and anything I can do for you I will.

Best wishes - Brian.

Thank you.

There is a wisdom here which I am trying to get to.

It does occur to me that I have not yet met the same person twice when discussing this.

Hopefully that will change when I meeting the/an oncologist on 02/07.

My main problem is that I like things in order, and this just isn't.

I am going to get my head around this.

Thank you again.

Steve

Should have said "not met the same person twice at the hospital". Brain is no longer functioning. Going to retire for the night.

If I can add in to Brian's excellent post, I have tagged BarryW whose husband has T3b prostate cancer (seminal vesicles involvement) but without lymph node spread. Her profile gives a good picture of treatment pathway with one set of hormone therapies and radiotherapy. My husband had a similar initial pathway but with a different set of hormone therapies. Brian's route has been different again but we all have a radical form of EBRT in common with the aim to eliminate the cancer, and for what it is worth I would agree that the locally advanced diagnosis is correct. I am a research scientist mstev2 , used to dealing in facts, but what I have learnt after being on this rocky cancer journey with my husband for 4 years is that there are too many variables to even be able to predict initial treatment pathway or treatment after recurrence. In the end you have to rely on the experts and do what feels right for you. The things you do have control over like diet and staying as fit as possible both physically and mentally will help deal with the side effects of the treatments and aid recovery and, in my mind, prolong life. My husband is T4, Gleason 9, who was initially given a possible 6 months prognosis, so each day is a bonus together and we live every one to the full and just take one day at a time. Your outcome should be a lot better but positive attitude really does help.

As an aside, from one worry guts to another, it is important to look after yourself. I have just had a severe telling off by my doctor. I have a very healthy diet, do my 10000 steps plus swimming, but have had problems with insomnia for the last 4 years. This has affected my cholesterol levels and pushed me into pre diabetes so it looks as if I am going to have to adjust eating patterns to get my insulin switch working properly - yet more research for the nerd in me. And, of course, get more sleep.

Thank you so much.

I will be aiming to stay fit. I do a 30 minute walk each day (brisk, even where i live there are hills).

Now I am trying to get back to 10,000 steps.

I keep my mind active by working for Citizens Advice which is quite possibly where I get this worrying over detail from.

My next aim is to find gentle exercises to mitigate the muscle wastage that might occur with hormone therapy.

Your advice to take each day is great, and it is gradually happening.

Morning mstev2,

There were excellent replies here from AH WW MIllibob. All these wonderful people have different diagnosis and in different stages of their journey to fight the bastard. You have to relax into it until you see your oncologist early July. It is not far away and you twisting your mind and your guts. I know the situation only so well, we have been there last November. Enjoy the weekend with the thought that you are taking HT now and your treatment started and it is working as we speak! 

Lots of love

Dafna

Morning Mestv2 keep the faith as others have said keep doing what your doing exercise wise,I know it’s not easy at times,xxx Robert

Hi mstev2 , you have had lots of great advice from the gang already and I can’t add much.  My diagnosis at the start at age 68 was T3bN1M0 Gleason 9 PSA 74  and put on a treatable path and given 5 years.  That was 7 years ago.  We are all different in our original start point, treatment tolerance and the way our own journeys go.  One thing that is happening is the advance in our understanding of PCa, drugs available to me now, were not around or licensed 7 years ago.  It is hard to imagine where treatment will be in another 7 years time.  I think what I am trying to say, but badly, is don’t worry about trying to put yourself in a pigeon hole as outcomes and boundaries are shifting all the time.  Concentrate on keeping fit, eating well and staying positive to give yourself the best chance possible.  Please ask any questions you like and as you have already seen, Brian and his flock are an awesome team.  Best wishes, David