Possible mistakes on diagnosis

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  1. I was diagnosed this week wit PC T2cN1 M0 gleason 4+5 , with 5 lymph nodes positive, in the ct scan 10 lymph nodes were suspicious but now urologist say it's five ,does any one experienced a mistake in diagnosis? It's possible that instead of 5 it's 4 ,u ask this because hier in the netherlands they say till 4 lymph nodes positive it's still curable but 5 don't, my mind is so confused about this .
  • Hello  . I do not know what your system is in the Netherlands but once cancer has been diagnosed in the UK and here in Greece the Urologist passes all the information over to an Oncologist who, with their team, come up with a full diagnosis and treatment plan. It is also possible that they will interpret the data differently but they are in a better position to advise you. The issue of how many lymph nodes can be treated is variable but generally 3 to 5 is still classified as oligometastatic whereas numbers above this do not offer such a good prognosis. My husband has just had 10 distant lymph nodes plus other mets treated with SBRT (a targeted radiotherapy) in April 2024 and according to an email from his oncologist last night everything is good and under control so far. Keep positive and show them that you are determined to do whatever it takes to beat this disease as attitude can also play a part in your treatment. 

  • Mijn 5 lymph nodes are all near the prostate, thanks for your support, I wish you an specially yor husband all the best ,hope we can still be here talking in a long time ,God bless you both. 

  • We have been on this journey for over 4 years now and my husband's initial prognosis was pretty dire but we are fighters and the experts have taken that on board and despite having 3 recurrences so far they say they still have more tools in the toolbox. You are in a lot better position than us in that you are T2c but with regional met involvement (apparently 5-15% of men exhibit this). Treatment options and extent will be determined by the size of the lymph nodes and their proximity to other organs but I would still be pushing for curable intent.

  • They say with curable intent is max 4 lymph nodes, I just don't know what to think 

  • If the lymph nodes are in the same chain then there is a debate as to whether they are classified as 1 or multiple. Don't overthink it at this point in time, no matter what, there will be a plan. Your part in this is to get, and stay as fit as possible.

  • Perhaps you would like to watch this video on treating lymph nodes and their take on the number which can be treated with radiotherapy.

    https://youtu.be/WvPHrEmoBnE?si=6PgZWTZh5v7LniM2

  • Hi !

    From my understanding; if the affected lymph nodes is near the prostate (regional pelvic lymph nodes) then you’re locally advanced with N1. If the lymph nodes are distant from prostate/ non-pelvic lymph nodes then you’re metastatic (M1) and then you start to talk about oligometastatic or metastatic

    Anyway, if you are locally advanced with N1, if you are to have external beam then they normally add WPRT (whole pelvic radiation therapy) and then you also radiate the affected pelvic lymph nodes harder (eg with higher dose per fraction)

    But I’ve never heard of that there is a upper limit of pelvic lymph nodes. However, the more they see probably the more they don’t see on any scans and it’s considered more agressive and prognosis is not helpful the more lymph nodes are involved but I assume the radiation is the same.

    Anyway, treatment of locally advanced is considered with ’curative internt’ but I might be wrong.

    Best wishes - Ulf