Nottingham score of '2' on Tubule formation--is this possible?

stella1960
stella1960 Member Posts: 13

I was recently diagnosed with ILC and in my research found that 'true' ILC does not form Tubules and that tumor MUST have a Nottingham score of 3 on Tubule formation. Well, all three of my ILC's (2 on right and 1 on left) have a Nottingham score of 2. I've emailed oncologist and she said that since shes not a pathologist she believes what pathology report states.  Is it possible to have true ILC with a 2 score or is it more likely to be IDC with lobular features?

I am trying to get onc to set up meeting for me to discuss report with the pathologist--so far she has not been receptive to idea. It is my right to know what kind of cancer I really have. I just wrote my surgical experience on The Surgery Forum titled 'My NIGHTMARISH BMX'. Please read it so you'll know my story and might be able to answer me better.

Thanks so much.  My signature isn't correct but I can't correct it till  I have node dissection next week to determine proper staging and treatment.  Stella

Comments

  • stella1960
    stella1960 Member Posts: 13
    edited September 2010

    My onc emailed me today and said that pathologist is going to do E-cadherin stain to determine if  3   cancers are really lobular. But the weird thing is neither onc or pathologist will address the matter of the Nottingham score being 2 and not 3 on Tubule formation. Did any of you have a 2 on Tubule formation? Everything I've read said that you HAVE to have a 3. Am I wrong?

    I hope someone will answer me, as I feel like I am doing battle with onc and pathologist on this issue. I just want to know what kind of cancer I really have.

  • suzieq60
    suzieq60 Member Posts: 6,059
    edited September 2010

    Stella: I just checked my path report and the E-cadherin staining was negative indicating pleomorphic ILC. I got a 3 on the tubule formation, but the report definitely seems to be relying on the E-cadherin staining to determine the pleomorphic result.

     Sue

  • MarieKelly
    MarieKelly Member Posts: 591
    edited September 2010

    suepenn, sometimes pathologists have a difficult time distinguishing between IDC and ILC. The E-cadherin stain helps them tell the difference. Almost all IDC and special ductal type breast cancers will stain positive for E-cadherin and almost all lobular cancers will stain NEGATIVE.  It really has nothing at all to do with cellular pleomorphism because if it's a ductal cancer, it will stain positive regardless of whether it's low grade or high grade and lobular will be negative. Yours was negative because your tumor was ILC.

  • stella1960
    stella1960 Member Posts: 13
    edited September 2010

    Thanks, ladies, for your input. MarieKelly, that's how I understand it too. The crazy thing is that pathologist is going to do E-cadherin stain to determine if the 3 tumors are really lobular BUT will not respond to my question about my Nottingham tubule score  being a 2 and not a 3.  I thought it HAD to be a 3, as a true lobular does not produce tubules.  Am I wrong?  Can anyone help me?    Stella

  • MarieKelly
    MarieKelly Member Posts: 591
    edited September 2010

    Stella,

    If I were in you, I would have a completely independent set of eyes examine the tissue - take or have the slides sent to a different pathology lab. If for no other reason than peace of mind. If necessary, get a third opinion.

    Don't let the current oncologist or pathologist blow off your concerns because they are clearly not unwarranted.  I do agree with you, about the concerns regarding a lobular diagnosis and a score of 2 on tubular formation (a big red flag in my opinion) and I think you're correct in noting that "true"/classic ILC, the most common type of ILC) doesn't have any significant tubular formation at all and would therefore be expected to recieve a tubular score of 3 using the Nottingham grading system.  Since pleomorphic ILC supposedly has the same type of linear cell patterns and absence of tubule formation as classic ILC and differs only in it's mitotic and pleomprhic scores, I would think that the pleomorphic lobular variant should also be expected to get a tubular score of 3.    I'm certainly not a pathologist though, so maybe I'm way off base in interpreting what I've read.Undecided

    Again, if it were me, I would ALSO be especially concerned that there had to be a direct request asking a pathologist to do a E-cadherin stain.  It was done on my invasive ductal automatically and I suspect that most path labs automatically do it in as a kind of double check that their diagnosis of either ductal or lobular was correct.

    AND, I would also have some deep reservations about using the same surgeon again if you have to have node dissection.  Sounds like you had a failed SNB and then a hematoma so large it required surgical evacuation and a blood transfusion. How much experience did this surgeon have???

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