Prostate cancer

A support group for anyone affected by prostate cancer to come together, share experiences, and ask questions.

Just diagnosed with Aggressive Prostate Cancer

Posted by

I was diagnosed with prostate cancer in June this year, my Gleason is 9 and T4. I have started the Zoladex injections and waiting to see the Oncologist on the 19th July.

Mixed emotions but very positive in my outlook, I have been told that there is no chance of an operation as it has spread to 3 or 4 Lymph modes and superficially on my bladder.

Has anybody any experience with PC the same as mine?


“Nobody made a greater mistake than he who did nothing because he could do only a little.” 
Edmund Burke (1729 – 1797)

Posted by

hi my hubby has g9 t3b in 2 lymph nodes bladder seminal vessals etc....his psa was 92.

 Sorry to hear your diagnoses, I feel that in the beginning we all panic as hubby and I did believe me...the hormone therapy is a god send bar the side effects and although at the moment they can't cure it they can treat it for many years, every case is individual and I can only say about my hubbys cancer not any other case.

listen to all the info that will be thrown at you and make your decision about treatment based on what you believe will be best for your particular situation, my hubby has joined the stampede trial and gets looked after really well, however he is on hormone therapy only and we are not sure if this is best in the long run...we will see

all the best

Posted by

Hi Shaz,

Many thanks for responding, I will update this post with the oncologists findings after the meeting.

I have changed my diet, and generally feeling well. As you said I will make decisions as the options are presented to me, but I take each day as it comes and will continue to do so.


“Nobody made a greater mistake than he who did nothing because he could do only a little.” 
Edmund Burke (1729 – 1797)

Posted by

Hi WB,

Firstly welcome to the Macmillan community - the club you didnt really want to join - but hopefully you will glad you found us.

 I was diagnosed with metastatic prostate cancer, with secondaries in lymph nodes in Feb.’10. I've been on hormone treatment (Triptorelin) since January ‘10. 

PSA on diagnosis in Dec 09 was 1,100, Gleason 4+5=9 and PSA s dropped 55% per quarter and now 4 - (T3 N2M1 G9 )

Tow lymph nodes close to prostate and two near kidneys effected. The largest node was 55mm on the first scan and two yars later back almost to normal at 8mm.

I was put on decapetyl ( triptorelin ) - the sam as zoladex and after a few month I got hot flushes so GP put be back onto cyposterone acetate ( anti-androgen similar to casodex ) - so this is what they call the total androgen block - the decapetyl stops the teste producing testosterone ( that feeds the cancer ) and the cyprosterone acetate - stops any remaining tstosterone in the system from bonding with and feeding the cancer.

Sorry for the technical details - you'll pick it up soon !.

So thats me - 3 and a half years on - and PSA still low and sort of under control. But sadly the hormone therapy fails at some stage and then the oncologist puts us onto the next phase - maybe chemo and then the other drugs - many new ones around now.

SO - although it is a shock and frightening - i assure you that most men settle dwn once treatment is underway and they see good progress.

I strongly recommend you phone the Prostate Cancer UK charity nurse led helpline - For help and support from specialist urology nurses call 0800 074 8383 (free from UK landlines - Mon-Fri 9am-5pm Wed 7pm-9pm - ask for Toolkit of booklets and leaflets – it is excellent.

They also have an excellent forum - where you can discuss with many other men and their womenfolk all manner of issues relating to PCa -

good luck on your journey - it should be a long one what with recent drug advances and others in the pipeline.

Come back with any questions - no matter ow silly they may seem - there are no silly questions here.


Macmillan helpline no. is 0808 808 00 00 (Monday to Friday, 9am–8pm).

Posted by


I am sorry to hear about your diagnosis.  My boyfriend was diagnosed with PC, a Gleason of 8 and T4. He was told that surgery was not an option as it had spread superficially to his bladder and to his lymph nodes, but his hospital didn't say how many.

This was in November 2010.  He started hormone therapy and this brought his PSA back down to 1.2 and so he asked to try intermittent treatment.  When his PSA started to rise his hospital responded with watchful waiting instead of going back to hormone therapy.  As it continued and his symptoms increased he changed hospitals and they put him back on hormone therapy immediately and have just started radiation therapy which they believe will get the PC back in control.

The hormone therapy was amazing and if he had stayed on that, I don't think he would be in this situation.  I do not know why his first hospital allowed his PSA to rise so dramatically without doing anything.

He has had a bone scan and it hasn't spread there - thank God - but the cancer is active and painful at the moment.

Another group member mentioned her husband being treated for this type of cancer at the Dattoli Clinic in Sarasota Florida.  They were very happy with the treatment.  I have spoken with the clinic and found out that they have some of the best, if not the best, imaging equipment.  This allows them to radiate cancer found in lymph nodes as well as the prostate.  They use conventional radiation therapy followed by brachytherapy on the prostate and then lymph node radiation treatment.  

They seem to be having a great deal of success.  The problem is of course that no one else in the world does this and it certainly isn't covered by the NHS.

We are considering going to Florida once my boyfriend's cancer is under control.  

I wish you all the best.  This is hard, but not impossible.

Posted by


I appreciate that this is an old post but me and my husband are just setting out on this journey and they aren't many posts from people with lymph node involvement. We have our first appointment with oncology this afternoon.

How have you been? X

Posted by


I hope everything goes well when your husband sees his oncologist this afternoon.

As you've noticed this is a very old post and none of the people who contributed to the thread have been active on the Macmillan site for over 2 years so you quite possibly won't get a reply. 

It would probably be better to start your own post by clicking on 'Start A Discussion' at the top of the page and asking for people with experience of lymph node involvement to tell you how they've got on. I know you've said that you can't find many posts mentioning this but there are probably other people with lymph node involvement who just haven't posted yet.

Wishing you all the best


 "Never regret a day in your life, good days give you happiness, bad days give you experience"

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Posted by

Hi Gemma

If u can give more details that will enable people on here to help you. Ie, psa, Gleeson score, What does mri report say, general health and age.

U can reply directly to this but it may be better to start afresh with a new post.