I had a cysto middle of last August. Got the diagnosis of bc first of Sept. Started chemotherapy about a month later, and after eight treatments had bladder et al removed. Pathology said 10% chance of return. I'm having a scan this Thursday and apt. with oncologist next week. Long story to say I think it's not an overly long time for you to wait. All the docs I've seen were super.
Waiting until August 18 for an appointment with a "real expert" (where are you going?) is NOT too long. Whatever cancer you have has been there for years. Of course I wouldn't wait several months, but you will be fine with this.
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Got an appointment with one of the top urologists that specializes in BC. 80% of his practice is BC and he's performed bladder removal and neo-bladder surgeries. I spoke with some of his patients. They raved about him.
Only downside is I had to wait until August 18 for appointment. Hope its not too
long to wait.
In the interim, I had my path report reviewed by another URO. He agreed with present course of treatment, so I feel somewhat reassured.
It is real easy to get lost in the new vocabulary once the doctor says "You have cancer". Been there. Some doctors spend little to no time in patient education unless pushed for answers to well formed questions.
We each need to become our own advocates - making a lists of ALL the questions we have and ALL the fears the cancer diagnosis brought us. We need to ask questions and demand understandable responses from our care team.
Linked below is a site from which you can download a copy of an AUA (American Urological Assn.) guide for non-invasive bladder cancer. while not an extensive document, it can help understand the vocabulary and options for dealing with early stage bladder cancer. This guide may be helpful for discussing options with your doctor, as well as reaching a full understanding of the plan(s) and reason(s) for a suggested course of treatment.
What's with this Bleeding ? 6/2015
DX: HG Papillary & CIS
3 Years and 30 BCG/BCG+Inf
Tis CIS comes back.
BC clear as of 5/17 !
RCC found in my one & only kidney 10/17
Begin Chemo; Cisplatin and Gemzar
8/18 begin Chemo# 3
Begin year 4 with cis
2/19 Chemo #4
9/19 NED again
1/2020 CIS is back...