I had my appointment at The University of Iowa Hospitals today. Mostly just a consultation. Also an X-ray and labs. I have another appointment on Feb. 11 for another TURB(?) Is that right? They said my original urologist did not include any muscle tissue in the first TURB. They want to see if the tumor has spread to the muscle, or has grown since October. For the first time I feel I am moving forward with my treatment, rather than just waiting for someone to call. Good or bad, at least something is happening. Greg
My wife was finally able to talk to the nurse at my Dr. office. She apologized and stated that she was not ignoring us, but there simply wasn't any news to tell. I don't know about you, but it sure seemed like being ignored to me. Good news or bad, someone in our situation deserves to hear something over a several week period. They still cannot say when they will get access to BCG.
We decided to have my case referred to Iowa City hospitals, and that's what the nurse did. I now have an appointment for the 29th of January. I am sure this is just for introductions and consultation, but at least it seems like I am doing something. Finally. Maybe something will start happening now.
Although Iowa City Hospitals is located in Iowa, and I am in Illinois, it is only about 30 minutes farther away than my clinic is.
I checked as I am post here, there is NO shortage as of 12/9/2019. It is noted that supply will "be placed on allocation" when supplies run short.
From my experience, the BIG hospitals with a well-known cancer department get BCG when my local rural clinic can't even get a call back from their supplier.
I travel up to 400 miles for an appointment at a NIH Comprehensive Cancer Center Hospital when care is not available locally. My local doc understands. She is as concerned as I am, but she is caught in the middle. There is much to be said for having a nearby doc, even if you have a GREAT relationship with, even if you also have a doc in the university hospital hours away. ASK your doc for a referral to the BIG hospital; ask if it would be helpful.
That said, I expect a prompt reply to my questions and concerns. I have found it very helpful to ask, at a first appointment where there will be ongoing appointments, " Who do I call with questions and concerns ? Do you prefer phone calls or email for non-emergency questions ? Which is the best way to get a quick reply ? It really does help to cut down on sitting for hours, hoping the phone will ring.
That also said, in the beginning we all want treatment to start tomorrow or sooner if possible. Small clinics often can't move that fast, but they are nice to have for when an emergency arises. Sometimes we, as patients, have to accept the speed of medicine at teh different levels of providers.
Stay focused on what you want to accomplish (starting BCG soon). ASK all you healthcare providers how they can help make THAT goal happen quickly. Be prepared to expand your list of providers to those who CAN help.
Sorry to hear that you are facing the all too common frustration.
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...