Advanced Prostate Cancer and the Expected Life Expectancy

If I attend any more funerals this year I'll have no mate's left.

Hi everyone,

I have not posted on here in a while - I think the last time I did, was 2 months ago when my dad was first diagnosed with prostate cancer. Whilst the last 2 months have been unbearable for everyone (but mostly my dad) - I wanted to thank everyone on here who told me that things would slowly start to get better once his treatment begins. It's true - he is now 1 month 17 days into his hormone therapy and his PSA has dropped from 26.1 to 0.65 in that timeframe.

I wanted to ask, for those who have been fighting prostate cancer - is it a good sign for the PSA to drop below 1 over what I would call a relatively short time frame? The nurse said she was amazed but did not really explain why. Why is it so important for the PSA to come down? I'd like to improve my understanding of that.

I've added more information to my bio since we last spoke about his diagnosis & treatment plan but I also wanted to ask a question around nodes as his has spread to 3 near his pelvis (it's not spread to his organs or his bones). I saw an article and it was about Stephen Fry and he said that he battled prostate cancer in 2018  and had 3 nodes removed. I wanted to understand why they can do that in some cases vs not others. I'm trying to wrap my head around the '3 nodes'. Any thoughts welcome.

And lastly, just wanted to say I'm thinking of everyone on here. Some of your comments in those very early days massively helped me. It's rather beautiful how complete strangers can support one another in the darkest of times. I would love my dad to join this forum at some point as well - he's doing better but is really struggling with his sleep (no wonder!) - if anyone had any thoughts there, I'd also welcome those.

Many thanks all x

Hello Perry1919 

Welcome back. It's great to see dad's treatment is working. The general rule of thumb, the better you are with a low PSA reading. Depending on your treatment this indicates the cancer is either dormant or dead. Here's a link to our guide on PSA

https://www.macmillan.org.uk/cancer-information-and-support/diagnostic-tests/psa-test

As to the Lymph Nodes, these are the entry points to the body's own "internal motorway system". Once the cancer gets into these it can turn up anywhere in the body. They only tend to remove them if they are near the cancer - otherwise they attack them with targeted radiotherapy.

As for sleep here's a link to the best guide I have for sleep issues.

https://www.mind.org.uk/information-support/types-of-mental-health-problems/sleep-problems/tips-to-improve-your-sleep/

I hope the above helps, If I can do anything else for you just give me a shout.

Best wishes - Brian.

Hello Perry1919 

Thanks for the update on dad and so glad that he is responding so well to the Hormone therapy. There has been quite a bit of analysis done on the rate of PSA drop, as well as the level that it drops to in relation to how likely your dad is to have a recurrence further down the line. Basically, the faster it drops the better and if you can get it below 0.5 within 6 months of starting HT then this is better.

Many men have their lymph nodes removed at the same time as the prostate, and in fact many more than 3 can be removed during the procedure. If your dad has opted not to have surgery then there are other options to deal with them such as radiotherapy. These are discussions that your dad needs to have with the oncologist and the surgeon to see if he is eligible for them. Some oncologist like to see how their patient responds to the HT and like to shrink the cancer before recommending Radiotherapy as this makes a smaller target and can help reduce collateral damage to the bowel and bladder. The decision to offer surgery is based on many things like whether the cancer is contained within the capsule, how close it is to other organs, patients health........ 

Insomnia is common, and not only for the person with the cancer (I still suffer with it 4 years after my husband's initial diagnosis). The usual tricks are to avoid caffeine and alcohol after about 6pm as well as large meals in the evening. Avoid using computers close to bedtime. Have a routine of going to bed at the same time. Try reading a good book, particularly if you find that you are waking in the middle of the night but get up and have a little walk around first. Unfortunately for me only the reading seems to work but anything is worth a go.

Hi Perry1919.

Welcome back it's great to meet you both today 

It's great to see that your father's HT is working well and that his PSA numbers have dropped considerably 

My numbers also dropped dramatically following starting HT. 

From 1000+ in June 2023 to 1.79 last week which is "crazy"

With regards to the nodes if the cancer hasn't escaped from these then yes they will think about taking them out.

But if they have escaped let's say to the bones like mine then they won't take out the nodes & prostate.

With regards to his sleeping then sorry but I will have to leave that to others to comment on as I have been on very strong medication since my Stroke in 1998 which knocks me out completely at night time.

Prostate Worrier.

Hi Perry1919 , thanks for adding your dad’s diagnosis to your profile.  I was also T3bN1M0 and Gleason 9 with PSA 74 at the start of treatment over 7 years ago.  Treatments have advanced since then and it sounds like his team have a plan.  Others have given you some great advice but please come back if you have any questions.  Best wishes, David.

Just to add that when the cancer has spread to the lymph nodes outside the pelvic area then this makes it more difficult to remove because it has already started spreading along the super highway and, once they go in, they could find that a larger operation is needed with more risk to the patient. Also, my understanding and I could be wrong, is that an operation in itself can promote the spread of the cancer. Targeted radiotherapy is normally the preferred option to deal with them.

Thank you for your messages Alwayshope , that makes sense! However, this is why I am a little confused as they told us the 3 nodes are in the pelvis area. Initially when we asked about having the prostate and the nodes removed they shook their head and said 'not with this stage'... I assume that's because of a combination of factors including his age, PSA, Gleason score etc. HT then radiotherapy sounds like what they have in mind.

But then, on the other hand during his last appointment (which was last week) - the consultant said 'he wasn't sure if radiotherapy was an option because of the location of the nodes' - and left the room to check! I'm glad he went off to check - which was a bit scary to be honest with you. When he came back into the room, he said radiotherapy is still an option... 

Clearly on the next appointment (8th August) - we need to ask more questions around the location of the nodes.

Do you think it is worth seeking a second opinion? Seems as though a few others of on here were offered the option to have the nodes removed? Not sure, just thinking out loud.

Hi David2017 thank you for taking the time to respond. I have just read through your profile. Can I ask how many nodes were effected at the beginning of your journey (and where?) Did they give you hormone therapy prior to your radiotherapy & chemo treatments? Wishing you the very best as well - it sounds as though you have the right people around you and your consultant has been very good. Definitely resonate with your comment about your wife - in my case - that's my mum - she is our rock. She has got my dad eating more tomatoes, pomegranate seeds, and god knows what else! He calls it 'rabbit food' but I truly believe it's helping. Lots of love.

Hello Perry1919 

Just a couple of points I picked up on there:

* My urologist consultant wasn't for doing anything with my pelvic lymph nodes. My oncologist consultant was happy to leave them where they were and "zap" them so my radiotherapy was to the prostate and pelvic lymph nodes. (I am a Gleason 9 and T3aN0M0).

* From your post, it sounds like you have spoken to the Urology consultant and the appointment on 8 August will be the Oncology consultant. They both have different specialities.

I hope this helps.

Best wishes - Brian.