Mind relief question

  • 26 replies
  • 175 subscribers
  • 1090 views

I know this is ,probably, a stupid question, but I'm doing it because e need a bit of hope in my mind , I'm 54 T2c N1 M0 with 5 pelvic lymph nodes positive, anyone have an idea how many years would be a reasonable gues for me ? I know no one can tell me exactly one number but I'm really terrified that my oncologist next Friday, first appointment, tell me I have less than a couple years.

  • I also saw Dr mark scholz videos about lymph nodes treatment and he says till 5 is the number that is manageable, and even if a bit more and if they are close 6 or 7 can be possible ,more difficult but still possible, and mark scholz it's not a common curious, he is one of top doctors in prostate cancer, that's my mind confused, if Dr scholz say 5 is the number why it's here in the netherlands 4 ,possible cure it's different that no cure ,even if it is small chance .

  • it’s just my opinion but if there was no M1 in my husbands stats I would be looking for Dr who were willing to throw everything at a cure especially if those nodes are local to the prostate! 

    I follow Dr Scholtz  and he offers great advice. 

    If your cancer had been breast cancer and five lymph nodes affected you would still be treated for cure? I’m not sure if different cancers affect the amount of nodes it says before a cure cannot be given but to me if the cancer is only locally advanced then I would push for the full works to be thrown into cure! 

  • The definition of locally advanced is also not the same everywhere, some consider locally advanced when the pelvis lymph nodes are also involved, and some countries don't, the netherlands don't even have that definition or its locally or distant. 

  • Hi  , I think the answer is none of us know.  I was diagnosed G9 T3bN1 7 years ago.  Still hanging on! I think you shouldn’t look to the end but look at what you do before the end, be that in 10 or 20 years time. David

  • Good evening .

    On the one hand I can't provide you with any more reassurance than my friends above have done.

    To set against that, I went through a similar phase (and still do from time to time) of seeking reassurance.

    I am not a medic, thank heavens, and so I am only telling you what I can find out myself. The web pages I use are primarily British - none of us can really speak to treatment and attitudes in the Netherlands.

    You should not take my word for this, but do your own digging, because that in itself will bring aid.

    So this appears to be your staging:


    T2c: - The tumor is present in both lobes of the prostate but is still confined within the prostate.

    N1: Cancer has spread to nearby* lymph nodes.

    M0: There is no distant metastasis, meaning the cancer hasn't spread to other parts of the body.

    *the emphasis is mine.

    The source of this information is found on this web page:

    https://www.macmillan.org.uk/cancer-information-and-support/prostate-cancer/staging-and-grading-of-prostate-cancer?form=MG0AV3

    It is also the clearest information I have been able to find.

    When you work through this I think you will find that - irrespective of the number of lymph nodes - because everything is near to the prostate you would be considered in Britain as a "locally advanced" case which is regarded as being treated with a "curative intent".

    This is the Macmillan web page on that:

    https://www.macmillan.org.uk/cancer-information-and-support/prostate-cancer/locally-advanced-prostate-cancer

    Now, if you have done your own studying I hope that you are seeing the thrust of the arguments here. In the UK we have an institution - both reviled and loved - call the National Institute of Clinical Excellence. They issure recommendedations about treatment and the scientific background to that.

    This is the page that seems to discuss the level of cancer that you are reporting and is described above:

    https://www.nice.org.uk/guidance/ng131/chapter/Recommendations#localised-and-locally-advanced-prostate-cancer

    I would direct you to Section 1.3, and especially 1.3.7 Box 2.You need to read the whole thing, possibly more than once, but you might find these statistics helpful:

    "What effect does each treatment option have on survival at 10 years?

    The evidence does not show a difference in the number of deaths from prostate cancer among people offered active surveillance, prostatectomy or radical radiotherapy.

    People who had not died of prostate cancer* were:

    • 98 out of 100 patients offered active surveillance

    • 99 out of 100 patients offered radical prostatectomy

    • 99 out of 100 patients offered radical radiotherapy."

    *the underlining is mine.

    This says to me that, at the lowest level, 98 out of 100 had NOT died of prostate cancer. In ten years. The document shows the different treatments, and checks them throughout. It also shows the chances of the severest side effects.

    It should only say that to you if you independently go through with at least as much care as I did.

    I do not believe that any doctor can offer a real prediction on how long you have left to live. Reasons why:

    1. At the stage you are at it is very possible to cure the disease.
    2. There are good treatments which will, at the least, extend your life for some years to come. Example: I am being offered radical radiotherapy and hormone therapy. The treatment plan is 6 months hormone therapy, followed by 37 fractions of radiotherapy (I think that this is above the normal 20 because I am being offered Whole Pelvic Radiotherapy to ensure that the lymph node problems are sorted out), with continuing radiotherapy out to a total of 3 years.  Think of this - the treatment I am being offered is going to take 3 years, and you are on the same sort of place as I am.
    3. Lastly, and perhaps as pertinently, the statistics are likely to be out of date. These are all patients who were diagnosed some time ago. Treatment for Prostate Cancer have advanced by leaps and bounds and continue to do so.In America, some of the similar charts now START at 15 years.

    All of this said, no one can predict the certainty - only the likelihood.

    Get yourself up to speed with all the information you can find.

    Re-do it so you can follow the information and take it with you to your discussions.

    Prepare your questions in advance. Put them on a sheet of paper, neatly spaced out. During the discussion, as you ask the questions, make notes on the answers. When I did that it seemed to take the doctor by suprise.

    And if, at the end of all that, your doctor says "all that is from the UK/America/France/Germany, and we don't think of it like that here" you will have all of our permission to lean forward, look him or her dead in the eye, and say "Why not?.

    Research before hand how you get a second opinion if anyone says that to you, because the research in all of Western Europe and America is of equal quality.

    Best wishs my friend,

    Steve

    Steve

    Changed, but not diminished.
  • Thanks for your support  yes they speak on locally advanced when the lymph nodes are involved, but they are very ambiguous about that ,you never see anywhere the amount of those lymph nodes, they say one or more ,here in the netherlands also ,but then when you digg deeper you see there is a limit of lymph nodes they consider the max , 4 and they say I have 5 ,nothing else,no blader, no bones ,nothing else ,I don't understand why they are so stick to the 4 ,but it's 4 if all até in the pelvic region  even one bone met or lymph node outside the pelvis and it's game over,thanks again for you support, my hope is ,if 4 is still curable maybe 5 at least gives me good chances of many years.

  • Hi !

    The standard of Europe is that a T2CN1M0 is treated with radiation AND with WPRT (Whole Pelvic Radiation Therapy) which means the pelvic nodes within the definition of N1.

    You are a EU citizen as I suppose and from what I know then you’re allowed to have second opinion and also treatment within other EU countries and there are definetily other EU countries that doesn’t have this type of limitation if it’s 4 or 5 lymph nodes in the pelvic that needs radiation, e.g. WPRT radiation.

    But as many of the good people here in this forum have stated; you may have radiation treatment that involves pelvic lymph nodes together with long term ADT for a T2CN1M0 and it’s done with a curative intent. It’s impossible to promise a cure or even try to say how many years it works. But the treatment is done with the intention to cure. 

  • Believe me no one wants more that you are correct than me ,but According to the netherlands standards till 4 or less ,curative, more than 4 no cure ,Believe me when I say that it's banging on my head for days. They are very ambiguous on Internet  you see normal treatment for these stage but they never mention a limit number .

  • There is a review of treatment modalities for denovo lymph node patients but again it doesn't define numbers of lymph nodes. What it does say is that for high risk patients then treatment intensification with ADT, EBRT to the prostate and lymph nodes, plus the addition of a second generation antiandrogen for 2 years are improving the overall survival and time before progression statistics. 

    I can understand your frustration at not being able to get definitive answers between 4 and 5 lymph nodes with valid reasoning so, as Steve says, do your research, be your own advocate and if necessary get a second opinion. It could be that the guidelines in the Netherlands by the governing health body are laying down the rules as to what the treatment pathway is and maybe by moving into the not curable pathway will give you access to more intensive treatment which might be a benefit?

    https://pmc.ncbi.nlm.nih.gov/articles/PMC10251924/#:~:text=For%20patients%20with%20positive%20lymph,of%20hormonal%20therapy%20and%20radiotherapy.

  • Hi !

    If I understand you correctly you are to see a ONCOLOGIST for the first time and you have only talked to a UROLOGISTS that actually don’t perform any radiation treatments.

    Here I’ve summarized some questions and answers you may use in your dialouge with the ONCOLOGIST and then he / she can help out in clarifying what can be done or not when talking about your specific treatment.

    Questions with the ONCOLOGIST :

    What is the EU countries standard method for treating a T2CN1M0 prostate cancer when it comes to radiation modality?

    Is T2CN1M0 considered locally advanced prostate cancer?

    How do you treat lymph nodes?

    Are there any known limititations in EU countries on how many lymph nodes that may be treated?

    Is the treatment done with curative intent?

    Answers to discuss with the ONCOLOGIST:

    In the EU, treatment for T2N1M0 prostate cancer generally follows a structured approach with curative intent, given its classification as locally advanced prostate cancer due to lymph node involvement.

    Radiation Modality

    For T2N1M0 prostate cancer, the standard radiation modality is external beam radiotherapy (EBRT), often combined with androgen deprivation therapy (ADT). This combination targets the primary tumor within the prostate and any regional lymph node involvement. Intensity-modulated radiation therapy (IMRT) and image-guided radiation therapy (IGRT) are frequently used to increase precision and minimize exposure to surrounding healthy tissue.

    Is T2N1M0 Considered Locally Advanced?

    Yes, T2N1M0 prostate cancer is considered locally advanced. Although the primary tumor is confined to the prostate (T2), the presence of lymph node involvement (N1) indicates that the cancer has spread regionally, raising the risk of recurrence and progression without effective intervention. This categorization underscores the necessity for comprehensive treatment aimed at controlling local disease and eradicating micrometastatic disease in nearby lymph nodes.

    Treatment of Lymph Nodes

    In EU treatment protocols, pelvic lymph nodes are often included in the radiation field to address any microscopic disease that may be present. Guidelines from organizations such as the European Society for Medical Oncology (ESMO) and the European Association of Urology (EAU) support the inclusion of pelvic nodes, particularly in cases of higher risk where nodal involvement is confirmed. This approach aims to reduce the chance of recurrence by treating potential cancerous cells in these regional nodes.

    Limitations on the Number of Lymph Nodes Treated

    There are generally no strict limitations on the number of lymph nodes that may be irradiated in EU guidelines. Instead, treatment is tailored based on the extent of nodal involvement and patient-specific factors. The primary goal is to treat effectively while minimizing side effects such as lymphedema. Radiation planning and dose distribution are carefully managed to protect surrounding tissues.

    Is the Treatment Done with Curative Intent?

    Yes, treatment for T2N1M0 prostate cancer in the EU is typically conducted with curative intent. Combining radiation therapy with ADT is aimed at achieving long-term control of the disease, potentially leading to a durable remission or even a cure in certain cases. The curative approach underscores the emphasis on aggressively targeting both the primary tumor and affected lymph nodes to improve survival outcomes and reduce recurrence risk.