Results of Inaccurate staging

My husband was a patient at Sloan, and they might be ablle to help you with accomodations at a Y , nearby. Try to rely on the social work department; they are very helpful. The medical care at Sloan is top notch; you'll be treated with compassion and getting the very best medical skills available, Who is your Dr. at Sloan?

What to say....I am so sorry this has happened to you. Have you called your Dr. here in NC and told him his screw-up?

I don't have any advise for surgery, It is unfamiliar territory for me, but I am here to support you, and since we live fairly close if you need anything when you get home, I hope you will contact me.

I do know a bit about NYC however, and I know that there are social workers at Sloan that can coordinate transportation and lodging for you. There are even flights that are donated by "Corporate Angels" that can fly you and your husband back and forth for free. I know from a cousin who's child was treated there for cancer, that there is a Ronald McDonald house close by. Maybe the social worker knows of a place for adults? Since they are primarily for families of children. I am sure there are discounted rates for families who are only in NYC for Medical reasons and this may be something to look into.

Again, I am here for you, and I am so sorry you are facing this surgery. I am glad however that you were smart and went to NY for a second opinion. Who knows what would have happened if you continued with you Dr here.

Karen

Part 4

Next I found out that Sloan's pathogists found invasion into the lining of the bladder after my first TURB and I thought it was confined to the lining. I am scheduled for another TURB this Friday at Sloan to determined if the cancer has now invaded my muscle. No matter which way, I will lose my bladder. If it is into the mucsle I must receive chemo first and then the RC.

My husband and I leave for NYC again in the morning (750 miles) because I am scheduled for tests, appointments, and the resection on Friday. Needless to say that I am frustrated, angry, sad, etc, etc, etc. I am a country girl that does not like the city but feel fortunate to have found Sloan. I am stressed but we are learning to navigate the city. We are staying in New Jersey so that we have been using public transportation but don't know what we will do when I have the RC. It is so expensive staying in the city and I am sure that I will need to be there quite a while.

I hope this story helps others. I had read on this site and/or others that 40% of pathology reports are wrong and bladder cancer is often understaged. I just couldn't believe that it could happen to me but it has.

Part 3 (Not taking any chances of losing it again)

Of course I had to send all my records and pathology slides to Sloan ahead of time. When I first saw the doctor, they had to pick my up off the floor. (only kidding but that is where I felt I had landed) He asked me why I wasn't treated for bladder cancer in Aug. 2006. I did not know that I had cancer then. There were path slides because I had a test for interstitial cystitis then. This test involves instilling water into the bladder under general anesthesia and a biopsy was taken. Apparently the path report was negative or my doctor didn't believe the report because I was never told about cancer then. I was only treated for IC.

Let me mention that my doctor is well known for treating Interstitial Cystitis. I went to him for this purpose because it is horrible disease too that cause very frequent urination (I had 20-40 times a day) and many doctors do not know how to treat it. I had been to several and this doctor was the first to give me any relief. His office is 200 miles away so it was no easy matter for me to see him. He is in an office of 14 urologists and they are all affiliated with Wake Forest University and Medical Center. I really trusted him.

Continue

Part 2 (Good that I am doing it this way because I just lost my Part 2 but will try again. Hope it doesn't sound frustrating but I must admit that I am frustrated)

I first discovered blood in my urine in Jan and had a TURB with 4 tumors removed in late January. The path report said that is was only on the surface of the bladder and I received 12 BCG treatments. My scope after this was clean but found blood again in June. Another TURB with one more tumor removed. This path showed "suspicious for invasion" but my doctor said he didn't think so because it was on a stem. I didn't like his advice so that is when I called Sloan Kettering. I was amazed that I could personally pick up the phone and get an appointment within 2 weeks.

Continued

I hope I am posting on the right topic. I am so used to being in the noninvasive category but now the invasive topic seems more appropriate to what I have to say.

I just got back yesterday from Sloan Kettering. I went there after my doctor told me that the results of my recent pathlology reports from a TURB for one tumor showed "suspicious for invasion". However, his advice was that he didn't think it was invasive since it was on a stem. I didn't like his advice of waiting until the time of my next cystoscope which would have been at the end of September. Therefore I personally called S/K and was given an appointment within 2 weeks. I was amazed.

Of course I had all my records and pathology slides sent ahead of time. When I first saw the doctor, I got such a shock that they had to pick me up off the floor.(only kidding but I felt like I was there) S/K's pathology of the slides I had sent them showed that I had cancer in Aug. 2006 when I was given a test not for bladder cancer (had no signs at this time) but for intersitial cystits. This test involves instilling water into the bladder under general anesthesia and a biopsy was also taken. My doctor never mentioned or the pathologist missed it, which I suspect. Now Sloan tells me that I had cancer cells then and IF I had been diagnosed then, I could have been completely cured.

My computer wipes out long letters so I will continue on another post.
Balihigh