Will be seeing if I can get a timely second opinion appointment at Johns Hopkins or NIH (fortunately, we live in the DC suburbs so have lots of excellent medical resources nearby). Steeling myself to follow the likely advice to get a radical rather than partial cystectomy, while hoping that the surgery and follow-up treatments gets it all and that there's some way to reconstruct a bladder.
Welcome MoreLife. We are all sorry why you are here. I am attaching a pre-op questionaire that has way too many questions and many are not applicable to every situation but, it is a good start as I am assuming your URO will strongly suggest a radical cystectomy. At the same time a second opinion may also be wise for peace of mind. Ask away on anything, someone here has been there and done that.
DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.
Question for your doctor: How many of this particular procedure do you perform in a year? How long will the surgery take? What kind of incisions can I expect? What is the expected recovery time? These questions and their answers is what sent us to Vanderbilt (a hospital specializing in bladder cancer care) when Doug had a more elaborate procedure than a TURBT.
Welcome to the forum. People posting here are bladder cancer patients, not doctors; rather than medical advice you will be offered the experiences of patients to consider.
First, here are two links to background material that will provide a basis for the upcoming discussion(s) with your care team. As the team begins to settle on a particular treatment option, you will find more focused information to be helpful.
Questions, and COMPLETE answers, are critical for dealing with bladder cancer. You need to fully understand how bladder cancer treatment and surgery can physically change your body and bodily functions, and how changes may impact your daily life. There are options; you want to know about ALL of your options.
Bladder cancer surgery, being major, usually warrants a second opinion.
Important questions may include the following, depending on your situation:
Will your local Urologist be providing full treatment of follow-up services ?
Will you be referred to a bladder cancer specialist for consultation or surgery ?
Has the biopsy material been submitted for a second opinion ?
Does the biopsy material provide a clear margin surrounding the cancer ? Is there any evidence of invasion beyond muscle tissue ? How deep into muscle tissue ?
At each level of consultation, ask about options for treatment and how a particular course of treatment may impact YOUR daily life.
When a recommendation has been offered, ask, "Who is best qualified for this?"
The care team needs to know about you. Spill your guts about your concerns, desires and fears about the cancer journey. The care team needs to be focused on YOUR issues, and to do so they need to hear from you throughout the process.
It is easy to "get lost" in the maze of modern medicine. Ask, and always know, "Who can I call, in a position of authority, 24/7, during treatment when a problem arises."
Hoping this helps you prepare for a treatment discussion,
6/2015 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
Tried Keytruda, stopped by side effects
Workin on a new plan for 2021