Results of Inaccurate staging

Bali,

Thanks for the compliment.

If your stage and grade turns out to be T1 G3, then, it is basically considered a borderline situation. Most Doctors (based on my experience here) would recommend treatment first, usually the BCG protocol. However, T1 G3 is still considered to be a very if-fy disease and requires high end surveillance.

If the cancer is in the muscle, then it is my understanding from top Doc at UNC that the bladder has got to go.

A long time ago, I had my tonsils out at Duke Medical Center by a top Doctor in the field. After-wards, one of the residents came to me with the pathology.
"I didn't see anything wrong with your tonsils." he said to me.

Ever since that experience, I do not take any one's word for anything, top Doc or not.

I know that my experience was not life threatening, but it still burns me up when I think about that happening to me. I put my trust in that Doc because of the reputation.

Just proceed with caution. That's my advise.

Ro

I am getting another TURB on Friday 8/8. There will be a biopsy and then there will be enough information to go forward. It was my understanding, however, that I would need a RC. Maybe there are different opinions as to when an RC is necessary. I certainly will be asking more questions. No date for RC has been set.

Yes, I guess I am unnerved and scared by my experiences so far. Somewhere I need to have confidence and trust in the medical team. I have talked to many on the internet who have been to Sloan and there reputation is first class. I cannot imagine them doing unnecessary procedures or anything else that would blemish their reputation. There are many excellent cancer centers around the country and as you stated for Chapel Hill, many devoted patients who have received excellent care. I am a bit jaded since I had so much confidence and faith in my first doctor. He was so kind and even called me on weekends to help with my anxiety. He also always saw me immediately when I had a problem.

Rosemary, I thank you so much for your concern and I certainly hope you will continue to give me advice. You are very level headed.
Balihigh

balihigh

It is always hard to hear of misdiagnosis and I want to wish you the very best.

When Bob was sent to the Spine Specialist which is supposed to be a very good dr. he was told that the dr. was pretty sure it was not cancer and would check it in 3 months......wrong. During the meantime, results of PET scan ordered by the oncologist showed differently.

This happens way too often.

Prayers will be with you and please keep us posted.

Clara

Bali,

I still am having trouble understanding how the Doctor knows that you need an RC without having the pathology of a deep muscle biopsy. There must be a piece of the puzzle that is missing here.

Ro

I thank all of you for your comments. My doctor is Bernard Bockner at Sloan.
Rosemary, maybe I better correct myself. The doctor probably didn't say "completely cured" as I wrote but that my chances were much better then. MY memory of all of the conversation is clouded as you can imagine.

Yes, I considered Chapel Hill but had so many say that Sloan was an excellent place. Yes, the doctor said I must have a RC. Maybe there is a chance I can keep it depending on the results of the upcoming resection.

Momof4, where in NC do you live? I am orginally from Florida but retired here in the mountains in 2001.

I planned to see a social worker last week but didn't have the time. Hope to do it this coming week. I have heard that they are very helpful.

Balihigh

Curious, Bali, did the Doctor SAY that you had to have RC? My pathology
(from UNC Hospital in Chapel Hill) states that my cancer is invasive, but,
that just means the first layer. (I suppose that I've been posting in the wrong section, too.)

When your Doctor said that you could have been "completely cured", with respect, I don't know how he can make such a glib statement.

Perhaps you need a third opinion? I know you are scared and that you have got plans in the works, but, my understanding is that if the cancer has not invaded the muscle, then an RC would be premature (? I admit, I am not a Cancer Specialist).

There is a very, very good Doctor at UNC Chapel Hill that I would recommend,
if you need or want a 3rd opinion.

BTW, I go about 20 to 40 times a day. Usually, I go about 15 times, just in the mornings. I've been cancer free for 2 and 1/2 years.

Ro