PALN 30 cm mets from prostate

Hello Molleym65 

I have noticed your post has gone unanswered for 24 hours, so by me replying it will be "bumped up" back to the top of the page and I hope seen and read by someone who can answer your specific question.

Before I replied I did run a quick search to see if I could find anyone on the Community who has a similar diagnosis but I drew a blank.

I was wondering as it's affected the bladder tissue if a post on the Bladder Group may draw some answers - here's the link you need:

Bladder cancer forum 

I hope this helps.

Best wishes - Brian.

Hi Mollym65, though we are all different, we do have a few similarities, my PCa had metastasized to seminal vesicles, bladder neck and bowel, as well as peri rectal, mesorectal, and iliac lymph nodes left and right.

Diagnosed May 2022, aged 56, treatment HT for life and 29 fractions of RT, 75gy of aggressive prostate in total, targeting the whole pelvic floor area, in April 2023, which did amazingly well in getting rid of the cancer in all but 1 lymph node.

You haven't really mentioned symptoms my friend, other than a broken rib, which when you have cancer, especially an aggressive one like ours it's easy to think it's behind everything, but all his treatments can weaken bone, so it's important a bisphosphonate, or similar is taking to strengthen bones.

Best wishes for your CT results.

Eddie xx 

Thanks Eddie for your response, OH has just finished six rounds of chemo and is also on hormone &  prednisone, which as of Monday he’s been told to wean off the prednisone  , he had a CT scan last Monday and we get the results on 16/7 which we’re obviously anxious about … he has no real symptoms at all and apart from the hair loss and smoother skin, he doesn’t have anything else apart from a bit of reflux two or three days after and tiredness but tbh he’s always slept well .. , I’m not sure whether that’s a good sign that it’s working or not ?? I 
think my main concern is the size of the PALN 30cm sounds huge as well as all the other areas … 

how did you respond may I ask how your doing ? 

Hi Mollym65, that's great he's got through  chemotherapy, it can be tough to finish every cycle, so well done to your OH, and with relatively few side effects too is wonderful, and I don't believe having a tougher time through treatment is a sign of effectiveness.

I must say a 30cm sounds unbelievable, a 3cm is considered very large, and a 5cm extreme, I would be seeking clarification from your oncologist, I would have thought  such a huge PALN would be causing all sorts of issues.

As I said earlier, my treatment HT & RT worked better than hoped, scans showed no evidence of disease NED, in 11 of the 12 infected areas, I wasn't as fortunate as your OH regarding side effects, but I was, and am, still living a pretty normal, enjoyable life, it wouldn't be right to run off my side effects as we are all different, and my treatment options are limited due to co-morbidities, so no chemo or surgery for me.

We all worry in the beginning about scan results, scanxiety, as it's known, but you do get used to it, the important thing is to get on with living, as a friend said to me,"I have cancer, cancer doesn't have me," I  will have everything crossed for the 16th for you both.

Eddie xx 

Oh bless you that’s so very kind of you to say, the last meeting we had with the oncologist I actually posed the question as there was conflicting information on nhs website and his hospital portal, and the Dr said ok well let’s take a look at his scan and when looking made my OH stand and he pointed to his stomach area and said yes her and it’s a good 30 cm .. 

we do live a good life we’re both lucky to have each other and I thank god for him every day (not that I’m particularly religious!) 

I guess we just wait and see what the results are I just wish things were more streamline and quicker there’s a whole lot of anxiety waiting.

I wish you all the best Eddie and thank you so so much for your kind thoughts and wishes and responding xx

Thank you my friend, your good wishes are appreciated, I'm just sorry I couldn't be more helpful,  but it's good to hear your still enjoying life, as being positive is half the battle, and sadly the shortcomings of the NHS are familiar to quite a few of us, as are contradicting medical reports, I applied for all my hospital records and scan results and ask for the minutes and scan results after every appointment.

As for the waiting, and anxiety it comes with, keeping busy, doing the things you enjoy, is what most of us do, from any form of exercise, just walking is good, it really lifts your mood, up to, if you can, getting away for a few days, and there are many guys on here Gleason 4+3, doing very well, many years after diagnosis. I'm 5+5, and doing well, over 3 years on, we've been on 5 holidays already this year and have 6 more lined up, as well as being blessed with my 11th and 12th grandkids, and hoping to get married/exchange of vows, in Australia at the end of the year.

Life goes on my friend.

Eddie and Sheila xx 

What a kind soul you are. We have just welcomed our first granddaughter after 7 Grandsons and she’s just a joy.

Enjoy your trips away as much as your able and congratulations on renewing your vows 

I wish you the best of health and luck to you both … sincerely x

Awww how wonderful, a granddaughter, I  feel truly blessed to have 12 grandkids, 6 of each, and as luck would have it, we're looking after my youngest daughter's baby daughter, her 1yo little angel for 16 days, a wonderful remedy for the darkest days.

love Eddie and Sheila xx 

How wonderful enjoy the time with your angel granddaughter

Thank you my friend, how could I not.

Sleep well.

love Eddie and Sheila xx