Forum

× click new topic to begin your post

Stage 2 diagnosed from TURBT; What should I ask my urologist next week?

2 years 4 months ago #53170 by Alan
MoreLife,

While your DX is not complete let's hope either way it is put to rest on what to do. If it is stage 2 and a cystectomy is needed, you are acting wisely and choosing life!

Also, many of us have bookmarked a wonderful summary from the Cleveland Clinic that is very helpful on the 3 main diversions available. The important item here is to use one that does MANY/month! https://my.clevelandclinic.org/health/articles/urinary-reconstruction-and-diversion

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.

Please Log in or Create an account to join the conversation.

2 years 4 months ago #53167 by MoreLife
Thanks all.

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.

Please Log in or Create an account to join the conversation.

2 years 4 months ago - 2 years 4 months ago #53156 by Alan
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.
Attachments:

Please Log in or Create an account to join the conversation.

2 years 4 months ago #53154 by MadLove
Dear MoreLife,

Consider getting a consultation with a BC specialist.

My husband was planning to get BC care from the local Uro who oversaw the initial CT and Cysto exams. The TURBT was scheduled a month after the Cysto.

During that time and research, we found the forum and read the frequent advice to get a second opinion.

We did, and as a result, switched to a BC specialist at a center of excellence teaching hospital 100 miles from home.

Having a BC specialist providing care has provided enormous peace of mind for our whole family over the past two years.

Wherever you receive your care, bring a notebook with your questions written in advance and have a family member or friend with you as another set of ears and to help keep notes.

Best wishes.

Husband's journey:
01/2015 1st cystoscopy
03&04/2015 TURBTs-CIS
07/2015 Finished BCGx6
08/2015 biopsy-BENIGN!
10/2015 Finished BCGx3
12/2015 Cysto, redness
01/2016 TURBT, Benign
04/2016 Cysto
05/2016 Finished BCGx3
07&11/2016 Cysto's
1/2017 Finished BCGx3
2/2017 Cysto, redness
3/2017 TURBT, Cysto...

Please Log in or Create an account to join the conversation.

2 years 4 months ago #53149 by DougG
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.

Glad to hear your CT was clean.

Best wishes,
Anita

Anita
Forum Moderator
Caregiver

Please Log in or Create an account to join the conversation.

2 years 4 months ago #53142 by Jack R
MoreLife,

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.

National Cancer Institute multi-page basics about bladder cancer,
https://www.cancer.gov/types/bladder
American Cancer Society description of *SOME* possible treatments for the various stages of bladder cancer,
https://www.cancer.org/cancer/bladder-cancer/treating/by-stage.html

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,

Best
Jack

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 , round 3
Begin year 4 with cis
The following user(s) said Thank You: Gayle

Please Log in or Create an account to join the conversation.

  • Not Allowed: to create new topic.
  • Not Allowed: to reply.
  • Not Allowed: to add Files.
  • Not Allowed: to edit your message.
Moderators: Cynthiaeddieksara.anne

Users

Total Online: 1 User and 1235 Guests 
Ohwon's AvatarOhwon

Legend: Site Administrator Global Moderator User Banned

Statistics

Today Total Opened: 0 Today Total Answered: 2 Latest User: Ohwon
Yesterday Total Opened: 1 Yesterday Total Answered: 1
Total Posts: 52459 Total Subjects: 6805 Total Users: 8337
Powered by Kunena Forum