johnnyc's Cancer Blog

April 9, 2008

Update

Views: 121

What a great Spring day it is here in New York City!

Yesterday I spent all day down at City Hall testifying to try and stop the budget cuts being proposed by our Department of Education here in the city as it relates to arts education – talk about an action packed day!

I wanted to let everyone know, as ask advice on what it happening with me. On Monday afternoon I went back into the operating room for what I was lead to believe would be to obtain a biopsy of the bladder wall in order to confirm whether the tumor had spread into the wall or not. When I was in recovery I was told that the doctor did not take a biopsy as the are looked red from where he removed the tumor two weeks back and burned the area – so he decided to not take a biopsy and burn the area more. Needless to say this sent me through the roof as I now have a pathology report that does not contain the stage – only says that it is High Grade urothelial carcinoma. If I am understanding this all correctly by his burning the area the first time when he did not get enough tissue from the muscle of the wall, and by now burning it again, he has ruined any change of getting an accurate report for me.

I have contacted Sloan Kettering this morning to try and get an appointment with a doctor that is reported to be very good there in order to get a second opinion before I listen to my current doctor who changed his mind and now says he does not think systemic chemo is the way to go and will do a course of BCG instead.

I would love to hear from others who may have advice.

John

Posted on April 9, 2008 at 10:00:20 AM by johnnyc ( Update, 2 comments)

John, I don’t have any advice because I have never experienced this but I can understand why you were upset. I would have been upset, also. I hope your second opinion doctor at Sloan Kettering can give you some good answers. My thoughs and prayers are with you. Joyce

Posted on April 9, 2008 at 12:58:44 PM by joyce

John; Just scanning the Blog and found your story. Wasn’t sure if you had written anything because the left side of the page (your bio) was empty. Anway went further to find your post. How discouraging and mentally draining the wait is. I hope this new Dr. and Sloan (wonderful hospital), will guide you and give you some proper answers. Don’t know how some Dr.’s can get away with such nonsense as to not do the right thing at the time. His excuse is inexcusable. Good luck and keep us posted

Posted on April 28, 2008 at 1:56:20 PM by weezie

April 4, 2008

It's back

Views: 177

Good morning everyone,

My first post was a transfer from Word Press that I first wrote in May of last year.

Three weeks ago I went for my one year check up and received a call from my dr. saying that the cytology was once again saying something is wrong. He asked if I would be willing to go into St. Vincent’s to be put under so he could spend more time looking around without putting me in so much pain. Of course I said yes and at the end of the procedure I heard the word’s I did not want to hear. It is back, this time in the bladder in the same exact spot where they removed it last year when I had the radical nephrectomy. This week I am in a holding pattern as while the pathology report came back saying it is once again high grade, they also say there in not sufficient muscle from the bladder wall to stage the tumor so back in I go next Tuesday to get the sample they need. Of course I am on hold with the oncologist as well until we can sort this all out – but hey – I am still here and still strong!

Posted on April 4, 2008 at 7:30:56 AM by johnnyc ( It's back, 3 comments)

I am so very, very sorry. I know how it feels to be told you have it for the 2nd time. PLEASE KEEP FIGHTING IT. I will be praying for you. Keep in touch as often as you can. GOD BE WITH YOU…Joyce

Posted on April 5, 2008 at 8:40:09 AM by joyce

Hang in there.

Hugs Sherri

Posted on April 5, 2008 at 5:41:19 PM by karlak

Mine came back just a few weeks ago it was discovered. As usual keep your head up hun! The sky is so much more alluring then the grass. You will be in my prayers.

Posted on April 5, 2008 at 10:01:45 PM by gemmag

The journey begins

Views: 189

My name is John and my journey began last October on my first day of a new job when I received a call from my primary physician saying that my urine test (taken during a yearly physical) showed a high amount of red blood cells in my urine. My mind began racing as I knew what he was getting at and this was the last thing I needed on my first day at my dream job. He recommended me to a urologist who began testing – it began with a cystoscopy which showed nothing abnormal, followed by 4 trips to the operating room for a scope of the kidneys. Each time my urologist found nothing but the cytology reports kept coming back saying high risk for high grade carcinoma. In January of this year she told me she wanted to give me a three month break and heal a bit from all the invasive testing – needless to say this did not set well with me so I sought a second opinion. Off I went to another urologist with all my test results which he reviewed and even went so far as to take a fish test (which I later found out came back positive). He told me she was doing everything correctly and I was in very good hands so off I went for my three month rest period. I will add that I had no symptoms other than the cytology reports coming back saying there was something there.

In late March I returned for my check up and my urologist told me that she was at a loss and felt she could not do anything more for me so she wanted me to see the head of urology at St. Vincent’s in NYC as she studied under him and had been discussing my case with him over that past few months. I left her office and remember standing on the sidewalk thinking “I have just been dumped by my doctor!” I immediately phoned the other Dr. for an appointment and was told to come in a few days later, they knew of my case and were expecting my call. I went for my appointment with the Dr. and he was fantastic – he said he did not feel there was anything there and was confused as to why they put my through all the invasive procedures, but he assured me that if something was there he would find it. A week later I went into the OR for another scope and woke up four hours later in the recovery room (I immediately knew this was not good) to have him tell me that he found I had transitional cell carcinoma and he was certain that it was high grade. I felt as though the wind had been knocked out of me but I focused on what had to be done and did not allow myself to dwell on the sadness I was feeling. A week later I was in again to have my left kidney/ureter and bladder cuff removed. I now know that it was stage 3, high grade TTC in both the which has not spread beyond the tissue surrounding the kidney and the bladder. That was 3 months ago and I am back at work, enjoying my time off until I go back in for testing. My doctor told me on a follow up visit that the chances for 5 year survival without the surgery were 0% and with the surgery my chances are “pretty good”. I asked about follow up with chemo and he said he does not want to put me through that unless it returns.

I find myself wondering what is next? From most of the research I read I find that many people never have it come back but unlike Renal or Bladder cancer, there is not much out there on TCC. I know that no one can predict what the future will hold so I concentrate on getting back to my normal life before I heard those three words.

Posted on April 4, 2008 at 7:12:20 AM by johnnyc ( The journey begins, 2 comments)

What a story. It reminds you to always have good doctors and if you don’t like the one you have, get a second opinion. Welcome to the group Johnny.

Posted on April 4, 2008 at 7:22:53 AM by jill

Hug Sherri

Posted on April 5, 2008 at 5:42:33 PM by karlak