I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error

Pathology report Node positive, terrified. - nodes,Diagnosis (Dx)

Email this conversation Print this conversation
User
Posted 29 Aug 2016 at 12:13

After Robotic RP on July 26 2016 - (preop T3a, G8, M0) my pathology report (over the phone) told me I have been upgraded to T3b, G9, negative margin but with SV involvement and 2 positive nodes out of 12 (removed, but one with "significant cancer") - after I hang up the phone, I realized there were a lot of questions I meant to ask, but with shock didn't. Now they are spinning around my head - as I researched there is a lot of conflicting prognostic papers on Node positive PC - some much better than others, some terrifying. has anyone any experience / insights with similar pathology?

Is there a chance, since negative margin was achieved and local nodes were removed, I  might still be cured? Is that naive? They say it is likely I will be put on Hormone therapy?  Could this be precaution - can local removed nodes be the end of it? I have been feeling really low since the pathology call (just a few days ago) and have been self medicating with alcohol. Just turned 50 a few weeks ago, and have so much to live for. Everything feels tinged with death, sorry to be so negative but I am trying to be as honest as I can about how I feel - any insights very welcome.

  Have a PSA test and appointment in a few weeks

Many thanks

User
Posted 01 Sep 2016 at 00:07

It could be even better than you outline here - some men diagnosed with local lymph node involvement are offered potentially-curative treatment - either by removing the offending node(s) or by planning the RT to include the pelvic nodes. Others are only aware of the lymph node involvement after the event but as long as it is the very local nodes, already being in a petrie dish is a good thing or, in some cases, adjuvant RT may sort it out. Much will depend on your first post-op PSA.

even with node disease that involves more than the immediate area, we have had members go for more than 10 years. Stay strong :-)

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 29 Aug 2016 at 19:10

Hi William66 get prepared for your next appointment with all your questions wrote down take some one with you as you may forget the answers . I do not have the answers to your questions someone may answer you whom has had similar results . I would be asking about what treatment options are available ,try not to panic I think giving you this news over the phone was not the correct way to hear this news ,you may want to say this at your appointment it could stop them telling someone else this way, all the best Andy

User
Posted 29 Aug 2016 at 19:53

Hi William
So sorry to hear your outcome. Very similar to mine and you might want to click my picture and read my profile. I had no symptoms at all , and it took them forever to see anything on any of my scans. I was 48 yrs old. Even the day of the op he said my prostate was small and he couldn't see anything strange. But it had spread to my bladder and 5 of 18 lymph nodes were cancerous , so I ended up T4G9N1MXR1. I was offered RT but declined it as they insisted it would not cure me. I have been on HT ever since the op. Let's see what your post op PSA is. Mine was 1.5 and hit 2.4 just weeks after. Even so , I've been told 4 to 6 years and things are advancing all the time cure-wise. I still have RT and all the fancy drugs in the bag and am living life to the full. I get the self-medication thing totally. Been struggling with that myself tbh. Please keep in touch and best wishes
Chris

User
Posted 30 Aug 2016 at 08:46

Hello William and welcome

So sorry your news wasn't better for you

Thoughts tinged with death, feeling negative?

Who wouldn't under the circumstances BUT that is your initial reaction.

There are men on here (as Chris above proves) who have results like yours and they are still with their families years after diagnosis.

You may end up in the no cure camp but that doesn't mean that you are a done deal and goodbye William !!!!

You must have been given a specialist nurse number (who was it who gave you this news over the phone?) so ring them back (with your questions prepared) and ask for an explanation.

Failing that, use the same questions and ring one of the specialist nurses on here. Now their advice will only be general since they will not have your medical records, but they might be able to reassure you somewhat.

You will get advice on here and lots of support. We do the listening ear and shoulder to lean on bit very well so please remember that when things feel like they are sliding downhill.

All the best

Sandra

****

We can't control the winds - but we can adjust our sails
Show Most Thanked Posts
User
Posted 29 Aug 2016 at 19:10

Hi William66 get prepared for your next appointment with all your questions wrote down take some one with you as you may forget the answers . I do not have the answers to your questions someone may answer you whom has had similar results . I would be asking about what treatment options are available ,try not to panic I think giving you this news over the phone was not the correct way to hear this news ,you may want to say this at your appointment it could stop them telling someone else this way, all the best Andy

User
Posted 29 Aug 2016 at 19:53

Hi William
So sorry to hear your outcome. Very similar to mine and you might want to click my picture and read my profile. I had no symptoms at all , and it took them forever to see anything on any of my scans. I was 48 yrs old. Even the day of the op he said my prostate was small and he couldn't see anything strange. But it had spread to my bladder and 5 of 18 lymph nodes were cancerous , so I ended up T4G9N1MXR1. I was offered RT but declined it as they insisted it would not cure me. I have been on HT ever since the op. Let's see what your post op PSA is. Mine was 1.5 and hit 2.4 just weeks after. Even so , I've been told 4 to 6 years and things are advancing all the time cure-wise. I still have RT and all the fancy drugs in the bag and am living life to the full. I get the self-medication thing totally. Been struggling with that myself tbh. Please keep in touch and best wishes
Chris

User
Posted 30 Aug 2016 at 08:46

Hello William and welcome

So sorry your news wasn't better for you

Thoughts tinged with death, feeling negative?

Who wouldn't under the circumstances BUT that is your initial reaction.

There are men on here (as Chris above proves) who have results like yours and they are still with their families years after diagnosis.

You may end up in the no cure camp but that doesn't mean that you are a done deal and goodbye William !!!!

You must have been given a specialist nurse number (who was it who gave you this news over the phone?) so ring them back (with your questions prepared) and ask for an explanation.

Failing that, use the same questions and ring one of the specialist nurses on here. Now their advice will only be general since they will not have your medical records, but they might be able to reassure you somewhat.

You will get advice on here and lots of support. We do the listening ear and shoulder to lean on bit very well so please remember that when things feel like they are sliding downhill.

All the best

Sandra

****

We can't control the winds - but we can adjust our sails
User
Posted 31 Aug 2016 at 23:40

Thanks Sandra, Chris and Andy 

All this can just be so vague - I am working hard on positivism. as a lecturer, back to work next week (hopefully) - having read many posts on here some people taking about getting a range of prognosis anything from a few years to over 10 with local node positive, one saying after scans he thanked God that it was "only lymph nodes and SV" rather than anything else, which helped me give myself a shake.

Also on research papers the figures vary with survival rates sometimes quoted as close to 80% living for 10 years or more (I'd sign for that!) other less optimistic, however, I do have an appointment now very soon (i phoned today to chase that up).

Again thanks for the time you kindly took to reply,

William

User
Posted 01 Sep 2016 at 00:07

It could be even better than you outline here - some men diagnosed with local lymph node involvement are offered potentially-curative treatment - either by removing the offending node(s) or by planning the RT to include the pelvic nodes. Others are only aware of the lymph node involvement after the event but as long as it is the very local nodes, already being in a petrie dish is a good thing or, in some cases, adjuvant RT may sort it out. Much will depend on your first post-op PSA.

even with node disease that involves more than the immediate area, we have had members go for more than 10 years. Stay strong :-)

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

 
Forum Jump  
Email this conversation Print this conversation

Join the online community now.

Click through to become a member and gain access to support, information and real time replies.




MenuTop ▲
©2024 Prostate Cancer UK