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peggyznd's Recent CancerCompass Activity

  • peggyznd has replied to a post on the message board

    It is good that he is being seen by a urologist, and once there is more real information, do doubt he will NEED to see a specialist who has experience with transitional cell carcinoma or kidney cancer specialist.  This will not be something that most oncologist will have seen.  If it is a TCC, be aware that it is rare.  I would suggest that you go to www.smartpatients.com and sign up, indicating that y...

    Thursday at 6:53 PM view post
    • peggyznd has replied to a post on the message board

      I am so sorry to hear this, as she sounds very sick indeed.  It may well be that the kidney tumor, being removed, will be helpful, if not curative for her situation.  She will definitely need an expert surgeon, and most certainly, to be seen by someone who understands kidney cancer.  Most oncologist do not, as it is a rare cancer.  A great resource is www.smartpatients.com in the US, but open to a...

      Thursday at 6:45 PM view post
      • peggyznd has replied to a post on the message board

        There is a good kidney cancer patient group in England, http://www.kidneycancersupportnetwork.co.uk/  It is headed up by Rose Woodward.  These people will be of great help and support.  The typical "go home, you will be fine" that too many patients get is so unnecessary, when there are good options.  I had a large tumor, mets by the 100s in my lungs, and was directed to enter a high dose interle...

        Thursday at 6:40 PM view post
        • peggyznd has replied to a post on the message board

          Joe, It would be helpful to others if you could give more details about your situation; how the tumor was found, how large it was, what its pathology was, how often you are monitored and how.  I am ten year out, after having had a 9x10cm tumor along with hundreds of lung mets; clear cell, so the most common form; kidney and tumor removed and then I was treated with immune therapy high dose interleukin 2, which ...

          Thursday at 6:30 PM view post
          • peggyznd has replied to a post on the message board

            Dear Jean, That is a terrible blow after your losses, and the reassurance that your daughter was fine.  There are wonderful people at MD Anderson, and I have transcribed lectures and slides a number gave at a kidney cancer patient conference two years ago. (Go to www.peggyRCC.wordpress.com) Judging from your story, you may be dealing with a rarer form of hereditary RCC, so pay special attention to Dr. Tannir, wh...

            Thursday at 6:26 PM view post
            • peggyznd has replied to a post on the message board

              There is some precendent for assuming disability from Soc Sec with metastatic kidney cancer, which may be your situation, with involvement of the bladder.  My biggest question for you right now is as the bladder findings and any biopsies that were done in this.  What exactly were those cell, and was the bladder tumor really a kidney metastases.  If this is metastatic kidney cancer that was not obvious ...

              Thursday at 6:19 PM view post
              • peggyznd has replied to a post on the message board

                You may be correct as to the feeling that it is cancer, and with the biopsy being initially inconclusive, that can tell you that this could be a difficult biopsy to read.  With that alone in mind, you should consider asking for a second opinion of the biopsy, just as you might ask for a second opinion of any diagnosis that seems difficult or questionable.  If they say that it was seen by a second person, th...

                Thursday at 6:12 PM view post
                • peggyznd has replied to a post on the message board

                  sunburns and diaper rash also "pop up"..neither are cancer.  It is hard enough for scared and sick patients to get an understanding of their disease without the addition of nonsense to the mix.  Hope that you can figure this out.

                  August 18 at 7:02 PM view post
                  • peggyznd has replied to a post on the message board

                    Dentine, you do not say much about the diagnosis, but assume that there was a CT scan to pick this up.  Has he been diagnosed after surgery or what?  If he just had surgery, then he is likely on Votrient--or any other drug--too soon. Go to my educational blog at www.peggyRCC.wordpress.com for a quick review of lectures about the basics of kidney cancer from MD Anderson doctors.  I had a large tumor re...

                    July 25 at 3:57 PM view post
                    • peggyznd has replied to a post on the message board

                      Jordi, You are being followed correctly and carefully with the CT scan, as you want to be very sure that there is no additional cancer.  An xray is just not sensitive enough to catch something very small--which is your goal!  As an example, I had an x ray of my lungs which was perfectly clear, but a CT scan three weeks later showed that there were hundreds of tiny mets all over. That was ten years ago, and...

                      July 25 at 3:51 PM view post
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