Advanced Prostate Cancer and the Expected Life Expectancy

Hi, you raise a good point! I didn't quite realise the difference between urologists vs oncologists - I just double-checked:

29/05: he saw the urologist who put him on bicalutamide for 28 days. It was the Urologist who said they couldn't just remove the prostate or the nodes - even though they are in the pelvis

11/07: he met with the Oncologist for the first time. It was the Oncologist who said he wasn't sure if radiotherapy was possible because of the locations of the nodes and went off to check. I actually don't re-call him mentioning why they can't remove the prostate or the nodes. It wasn't a topic. It was HT and then radiotherapy.

I will ask the question on the 8th August... he did say one of the nodes is higher than the other 2 so maybe that's why it's not up for discussion at this point.

Maybe they are too low and awkward to 'zap' (this is what my mum thinks the Oncologist meant)

The M1a indicates that at least one of the nodes is outside the the pelvic bone so there is some confusion that needs to be sorted out with the oncologist. This is probably what is directing the treatment pathway. My husband has had EBRT to the whole of the pelvic area plus a more targeted radiotherapy to the lymph nodes outside of it. The EBRT was carried out 4 years ago and is successful so far. The targeted radiotherapy to the lymph nodes plus other areas was carried out in April of this year and the first tests show that it is working, but we will have to wait and see as it can take 18 - 24/36 months to get the full results from radiotherapy. 

As for a second opinion you will have to check the guidelines of your health authority but you always have the option to get one done privately for a few hundred pounds, without obligation. It depends how confident you are in your oncologist, but also whether you want reassurance.

Good Morning Perry1919 

I think "Radiotherapy to the Pelvic Lymph Nodes" is a question for the oncologist on 8 August to clarify the matter.

Although I had no involvement with my Pelvic Lymph Nodes (T3aN0M0) my high initial PSA 182 and a "smudge" on my MRI prompted my oncologist to "zap" my lymph nodes. I was lucky as I am under The Christy in Manchester which is a cancer only hospital and I have one of the top consultants.

Just a little bit of "housekeeping" can you please "join" our Prostate Community - here's the link;

Prostate cancer forum 

Thanks and Best wishes.

Brian.

 Perry1919 , not sure I was ever told how many nodes and in those days I thought a node was a nose with a cold.

I have learnt loads since joining this site.  The standard treatment seems to be HT at the start for 4-6 months to reduce the cancer (by starving it of testosterone) then one of the main hits surgery or RT.  After HT started, I then had chemo, followed by RT but that order seems to be out of fashion now.  As more of us survive for longer, the techniques change and each time the survival rates go up (plus other therapies are added).
Your mum sounds to be doing a great job and diet, fitness and attitude all play a big part in successfully combating PCa.  I will remain on HT for life and it is now just normal.  I get hot flushes, but fewer as the years go on, off days and fatigue.  I have grown moobs and a stomach I am not proud of, but overall my weight is up about 9lbs in 7 years.  For those of us on long term HT, the problem is that the cancer learns to adapt and becomes hormone resistant.  I am at that stage and looking forward to my next oncology appointment shortly and fully expect another drug to be added which should suppress growth for another 1-2 years.

Please ask any question, there is such a lot of experience on this site from others who have been in your dad’s position.  Best wishes, David

Hi , I'm new to this forum and have found it quite comforting to read all the positive stories after my husband who is 62 was recently diagnosed with stage 4 prostate cancer gleason 9 , having spread to a couple of lymph nodes and pelvis.  

The oncologist seemed positive about things and said my husband was also eligible to Radiotherapy aswell as Apalutamide and 3 monthly prostrap injections . 

Husband well at present and still working although is feeling tired . 

On the whole we are coping well and trying to  stay positive about this terrible situation . I to struggle with not knowing how my husband is actually feeling as I know he will hide his true feelings to protect me . 

Hi Drifter, I'm now in my 5th year since diagnosis, like everyone here I've had my good and bad times. Radio therapy for me was straight forward, I did my enermas in the hospital.

Feeling down especially when recently diagnosed is quite normal.

Remember we men have to put up with the cancer, our wives have to put up with the cancer and us men, I hope everything goes as it should, looking forward to your post's for many years.

Hello Drifter and welcome from another wife whose husband was diagnosed in July 2020 with stage 4 Gleason 9 prostate cancer but with distant metastases. Fatigue is common but the best way to deal with it is to try and keep as active as possible and introduce weight bearing exercises to combat the muscle loss caused by the hormone therapy which lowers the testosterone levels (necessary to starve the cancer of its food). Your husbands reaction is common, and men have different ways of coping, but this 'walking on eggshells' can leave us partners with all the fears and no way of dealing with them. We were the same to start with but in the end we made a pact to tell each other how we felt so that we could deal with whatever was thrown at us together. 

All these therapies can come with a range of side effects but there is usually something which can help so if he needs help with anything then just come on here and we will try and point you in the direction of how to deal with them. My husband had radiotherapy to the pelvic region which still remains effective after 4 years and generally found it fairly easy going. 

One thing to ask the experts is whether your husband should be taking calcium and vitamin D tablets as long term hormone therapy can lead to osteoporosis.

This is going to be a marathon, not a sprint so I hope you will be posting with us for a long time. Please ask any questions and we will try and help.

Hi Drifter, as you will see my post is after a few years and at that time we were so worried, emotions all over the place so completely understand how you feel.  my OH was diagnosed Gleason 9, aggressive cancer, spread to lymph nodes, pelvis etc, he is non secreting so PSA was only 3.1 at diagnosis.  he had chemo and radio, he is still on 6 monthly injections, but now we are nearly 3 years down the line and are living life to the full, and is generally doing well, obviously he gets tired and the usual symptom but now we understand, living with cancer, not dying from it.   It has taken a  while to get to this stage as we’ve gone through all the emotions attached to this but we enjoying life and that’s a positive.  

I hope this gives you some comfort and wish you all the best x

Thank you so much for your reply . It has given me some comfort . Although only at the beginning of this journey myself and my husband have been so overwhelmed at how kind people have been .

Thank you , I am so glad I have found this forum .

Drifter