Sutent

snydergirl
snydergirl Member Posts: 15
in Kidney Cancer #1
Any thoughts on Doctor advising Sutent with NED. The tumor has been removed and there are no other tumors, there is swelling in the lymph system, never biopsied. Is Sutent effective as a preventative of recurrence?

Jeanne

Comments

  • garym
    garym Member Posts: 1,647
    #2
    Sutent
    Jeanne,

    I have no experience with Sutent, but there are several here that do, I expect you will hear from them. There is also a Sutent thread here that might help and perhaps you could contact the posters there through the CSN Email function for more information/answers. My guess is a recommendation of Sutent with NED probably depends on your pathology report for type, grade, and stage. This would be a good question for your doctor as well.

    Hope this helps,

    Gary
  • snydergirl
    snydergirl Member Posts: 15
    #3
    garym said:

    Sutent
    Jeanne,

    I have no experience with Sutent, but there are several here that do, I expect you will hear from them. There is also a Sutent thread here that might help and perhaps you could contact the posters there through the CSN Email function for more information/answers. My guess is a recommendation of Sutent with NED probably depends on your pathology report for type, grade, and stage. This would be a good question for your doctor as well.

    Hope this helps,

    Gary

    I've read the Sutent thread,
    I've read the Sutent thread, just nothing that resembles David's, Stage IV, Grade 2, and that's even questionable based on the pathology from the surgery T3b. I would think they would watch him with CT . I can't see putting him through a round of chemo, unless there's another tumor somewhere. He's barely recovered from surgery, and this is the urologist talking, not the oncologist. So confusing, would like some straight answers, not Doctor speak.
  • garym
    garym Member Posts: 1,647
    #4
    snydergirl said:

    I've read the Sutent thread,
    I've read the Sutent thread, just nothing that resembles David's, Stage IV, Grade 2, and that's even questionable based on the pathology from the surgery T3b. I would think they would watch him with CT . I can't see putting him through a round of chemo, unless there's another tumor somewhere. He's barely recovered from surgery, and this is the urologist talking, not the oncologist. So confusing, would like some straight answers, not Doctor speak.

    Sutent vs. waiting...
    Jeanne,

    I'm just a layman, but with a Stage IV pathology I believe it is possible to have mets that are too small to detect thus resulting in the NED. If this is the case, then from a prevention standpoint Sutent might be an effective option, there are probably others. That said, since RCC is generally slow growing it also seems to make sense to do follow-up scans every 3 months, waiting to see if anything shows up and avoiding the side effects until or unless it is required while giving your husband time to recover and heal. If your oncologist specializes in or has a lot of experience with RCC he/she should be more helpful than the urologist in formulating a treatment plan, if not it would be worth it to find an oncologist that does specialize in RCC before reaching a decision.

    I wish I could be more helpful,

    Gary
  • AMichael50
    AMichael50 Member Posts: 18
    #5
    snydergirl said:

    I've read the Sutent thread,
    I've read the Sutent thread, just nothing that resembles David's, Stage IV, Grade 2, and that's even questionable based on the pathology from the surgery T3b. I would think they would watch him with CT . I can't see putting him through a round of chemo, unless there's another tumor somewhere. He's barely recovered from surgery, and this is the urologist talking, not the oncologist. So confusing, would like some straight answers, not Doctor speak.

    Staging
    Hi Snydergirl, if I'm not mistaken t3b is stage III correct? That's the same as they staged me. The tumor had protruded into the renal vein. Also grade 2. T3b N0 M0 is how my pathology report reads. I elected not to participate in a clinical trial. I was never offered any other treatment, only CT scans every 6 months. My CT scans are ordered by an oncologist. I only see my urologist 1 time a year.
  • snydergirl
    snydergirl Member Posts: 15
    #6
    AMichael50 said:

    Staging
    Hi Snydergirl, if I'm not mistaken t3b is stage III correct? That's the same as they staged me. The tumor had protruded into the renal vein. Also grade 2. T3b N0 M0 is how my pathology report reads. I elected not to participate in a clinical trial. I was never offered any other treatment, only CT scans every 6 months. My CT scans are ordered by an oncologist. I only see my urologist 1 time a year.

    It's actually T3a Nx Mx,
    It's actually T3a Nx Mx, involved the fat, not the vein. But, yes, everything I've read says Stage III, there are enlarged lymph nodes and the Doctor admits that they have no idea what is going on in his Lymph system. Saying that, I think a biopsy of a lymph node would be the next step, or CT scans to watch the Lymph nodes, not Chemo.

    Jeanne
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    #7
    snydergirl said:

    It's actually T3a Nx Mx,
    It's actually T3a Nx Mx, involved the fat, not the vein. But, yes, everything I've read says Stage III, there are enlarged lymph nodes and the Doctor admits that they have no idea what is going on in his Lymph system. Saying that, I think a biopsy of a lymph node would be the next step, or CT scans to watch the Lymph nodes, not Chemo.

    Jeanne

    Sutent
    Jeanne,

    Gary's second posting above shows his usual well-considered analysis of the situation and I endorse what he says. I imagine you were not able to pursue the rationale for your doc's advice with him at the time. It would seem a good idea to go back and ask why he made the recommendation and what his grounds were for suggesting that course of action. Gary is right that, alas, sometimes something nasty is lurking but too small to be apparent so far - this is a very sneaky cancer. Do try to find out the basis on which the advice was given.
  • growler9
    growler9 Member Posts: 48
    #8
    Hi Jeanne
    I haven't had Sutent but the pathology for the tumor on my left kidney was T3b M0 N0 Fuhrman Grade 3 with renal vein involvement. My
    Urologist removed 30% of the kidney and I had clean margins. There was no talk of any follow-up drugs. I had bi-lateral RCC (both kidneys). Left 6-11 Right 8-11 open part. neph. on both. My first x-ray and CT's are not until 3-12.

    Your Urologist must not have thought the lymph swelling was a concern or he would have taken one for Pathology. I don't think Sutent is used as preventative medicine if there is NED.

    I would see the Docs. and ask WHY?!

    Best thoughts and wishes! Alan
  • Jamie1.3cm
    Jamie1.3cm Member Posts: 188
    #9
    growler9 said:

    Hi Jeanne
    I haven't had Sutent but the pathology for the tumor on my left kidney was T3b M0 N0 Fuhrman Grade 3 with renal vein involvement. My
    Urologist removed 30% of the kidney and I had clean margins. There was no talk of any follow-up drugs. I had bi-lateral RCC (both kidneys). Left 6-11 Right 8-11 open part. neph. on both. My first x-ray and CT's are not until 3-12.

    Your Urologist must not have thought the lymph swelling was a concern or he would have taken one for Pathology. I don't think Sutent is used as preventative medicine if there is NED.

    I would see the Docs. and ask WHY?!

    Best thoughts and wishes! Alan

    sutent?
    I agree with Alan. You need to hear some pretty compelling reasons for starting Sutent.

    I understand the scariness of stage III (Mine was just Stage II), but it would take a lot of evidence before I'd start Sutent, mainly because of the side effects -- like the bad effects on the teeth (and I'm a dental-phobe). I understand prevention. But close monitoring via ct scan may be a viable option.

    Get the doctor to explain why he/she thinks preventive sutent is better than close monitoring via a variety of scans.

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