Sarcomatoid?

Gamecocks
Gamecocks Member Posts: 30
in Kidney Cancer #1

My surgeon says path report showed small % of my 4.5 tumor was sarcomitoid. He referred me to oncologist who says, like surgeon, that he thinks they "got it all" but has ordered Pet/CT scan for Wednesday 6/19.

Oncologist says the sarcomitoid aspemothered my tumor makes him "nervous" and that is why he ordered PET.

Anyone care to share regarding the sarcomitoid aspect of a tumor?

thanks guys, a lot!

Comments

  • MDCinSC
    MDCinSC Member Posts: 574
    #2
    Out of my depth here!

    I'd be curious as to responses though!

    I suspect replies won't be long coming!

    Peace

  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    #3
    MDCinSC said:

    Out of my depth here!

    I'd be curious as to responses though!

    I suspect replies won't be long coming!

    Peace

    Sarcomatoid

    Gamecocks, I'm afraid that there's no hiding the fact that sarcomatoid is bad news - about as bad as you could get, considering your other details are all quite favourable.  Have you been told whether it's entirely sarcomatoid or, maybe, mostly clear cell but part sarcomatoid?

    There's no point in hiding from it so you may want to read more about it on threads dealing with it - we have several.  Try, for example, the one simply entitled "Sarcomatoid"  at

    http://69.20.25.158/node/232634

    At the moment is has 102 messages on it.

    However, if you're lucky and they managed to get rid of it entirely for you then you won't have anything to worry about, except for making sure you have routine scans to check that all continues OK.

  • Gamecocks
    Gamecocks Member Posts: 30
    #4
    Texas_wedge said:

    Sarcomatoid

    Gamecocks, I'm afraid that there's no hiding the fact that sarcomatoid is bad news - about as bad as you could get, considering your other details are all quite favourable.  Have you been told whether it's entirely sarcomatoid or, maybe, mostly clear cell but part sarcomatoid?

    There's no point in hiding from it so you may want to read more about it on threads dealing with it - we have several.  Try, for example, the one simply entitled "Sarcomatoid"  at

    http://69.20.25.158/node/232634

    At the moment is has 102 messages on it.

    However, if you're lucky and they managed to get rid of it entirely for you then you won't have anything to worry about, except for making sure you have routine scans to check that all continues OK.

    Doc says only a small

    Doc says only a small percentage of my tumor was sarcomatoid. That, he says, makes his finding RCC with sarcomitoid aspect. The tumor was contained and had not spread. Caught it very early and he said had it not been discovered at his early, I would have been up the creek 12 months from now.

    thanks for the cite, I will check it out...

  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    #5
    Gamecocks said:

    Doc says only a small

    Doc says only a small percentage of my tumor was sarcomatoid. That, he says, makes his finding RCC with sarcomitoid aspect. The tumor was contained and had not spread. Caught it very early and he said had it not been discovered at his early, I would have been up the creek 12 months from now.

    thanks for the cite, I will check it out...

    sarcomatoid

    Only a small proportion is good to hear and the containment and lack of spread are also promising factors.  Did he say that your underlying type was clear cell (the commonest and most researched)?

  • Galrim
    Galrim Member Posts: 307
    #6
    Have in mind...

    ...that even though the sarcomatoid feature is a heavily negative prognostic factor (Texas already provided the bleak details), its still only one of several factors. You have several prognostic factors being on the upside of things, stage and size being dominant ones. Im not saying to turn the blind eye to it (the sarcomatoid part) but for your mental wellbeing in the stressfull times to come, try to focus on the silver lining in the cloud, if you get my drift...

    /G

  • Gamecocks
    Gamecocks Member Posts: 30
    #7
    Galrim said:

    Have in mind...

    ...that even though the sarcomatoid feature is a heavily negative prognostic factor (Texas already provided the bleak details), its still only one of several factors. You have several prognostic factors being on the upside of things, stage and size being dominant ones. Im not saying to turn the blind eye to it (the sarcomatoid part) but for your mental wellbeing in the stressfull times to come, try to focus on the silver lining in the cloud, if you get my drift...

    /G

    Yes, it was clear cell and I

    Yes, it was clear cell and I know that is a good sign and Stage 1 is great, despite it being a 4 (which it was because of the sarcomatoid ).

    Just so others know, I took a freak fall in the woods with my dogs, knocked the breath out of me, 2 days later I ended up in ER with most severe pain of my life. They thought I had kidney stones. CT showed no stones, but a mass on left kidney. Pain was from torqued nerve in my lower back. Had I not taken the fall, it would have been a much later diagnosis and perhaps too late then. Mere coincidence? Not in my book..:) 

     

  • dhs1963
    dhs1963 Member Posts: 513
    #8
    Gamecocks said:

    Yes, it was clear cell and I

    Yes, it was clear cell and I know that is a good sign and Stage 1 is great, despite it being a 4 (which it was because of the sarcomatoid ).

    Just so others know, I took a freak fall in the woods with my dogs, knocked the breath out of me, 2 days later I ended up in ER with most severe pain of my life. They thought I had kidney stones. CT showed no stones, but a mass on left kidney. Pain was from torqued nerve in my lower back. Had I not taken the fall, it would have been a much later diagnosis and perhaps too late then. Mere coincidence? Not in my book..:) 

     

    Sarcomitoid

    The way it was explained to me by my Dr, who has written papers on Sarcomitoid diferentiation, Sarcomitoid features is the single biggest indication of bad outcomes.  You need to be agressive about the follow up scans.   The secret is to catch any and all metastises early.  My understanding is, with sacomitoid RCC, treatment is like surgical whack-a-mole.  If they can cut it out, you live untill at least the next one.  There are other treatments, but they slow the prograssion, rather than stop. 

    I am with you with the sarcomitoid tumor.  One thing to do is to try to stay on top of the medical advances, for possible clinical trials.  Good luck.  Good luck.

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