Forum

× Welcome click the New Topic button to post

Next step

1 month 3 weeks ago #56008 by Cynthia
I knew I was going to have my treatment with MGH and not my local Urologist after dealing with him though the first TURB. I was glad I did there was a vast difference in the second TURB and the first. Plus I felt it was better as the second opinion in the pathology report being done by a second pathology department that did a high volume of bladder cancer. It was sometimes a hardship having treatment and surgeries away from home but the difference in expertise and available resources made it well worth it. We stayed in hotels in Boston and when we went to Chicago we for the first surgery took a short term apartment and then we found a Residence Inn for the second. Being able to cook was wonderful as restaurants get old quick. Both hospitals were used to people that were from out of the area and were a great help finding what we needed, MDA will have the same if you need it. Once I had my consultation things moved very quickly for the second TURB as they needed it to confirm my diagnosis to move forward. It is a personal decision as you know what your resources are and what you can do but if you can MDA is the best at what they do and they would be my first choice.
Let us know what you decide.

Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society

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

1 month 3 weeks ago - 1 month 3 weeks ago #56007 by Alan
For my $$$ i'd simply wait until you get to MD Anderson. They will want to peek in there anyway and they have all of the extra equipment for diagnosis. Plus, it will really clock in like a second opinion.

Hobby airport on the SE side is closest if you are not driving (lots of SW flights). One motel is right on campus: https://www.mdanderson.org/patients-family/becoming-our-patient/getting-to-md-anderson/traveling-to-houston/rotary-house-international.html. Run by Marriott. There are several other motels nearby, a Holiday Inn Express from what I remember.

While I have not had to use them the past 10 years they are my backup as I live in San Antonio. I have had several aquaintences and friends do very well at MD. You are in good hands.

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.

1 month 3 weeks ago #56004 by Earlsue
Hi Cynthia this is Susan

I was hoping you might be able to give me some input . We have a appointment scheduled at M.D. Anderson in Houston on November 1 . My husband is scheduled for TURBT on October 23 by the local urologist

I’m uncertain as to postpone the 23rd surgery, which is intended to get second biopsy and wait until we go to M.D. Anderson

Given the timeframe between the first and second biopsy the tumor seems likely to have been there on the first biopsy but was not seen. So I’m concerned the second biopsy of the tumor might miss other areas because my local urologist is using standard cystoscopy.

MD Anderson says it’s up to us to make this decision,they can’t assist us until we have our first consultation

Any thoughts you might have would be appreciated

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

2 months 1 day ago #55953 by Earlsue
Hi Cynthia
Thank you very much for your reply and the information you provided . I intend to start looking at different hospitals . I’ve also been looking at information that you and others have posted assisting other people , It’s really great to have access to other people‘s experiences and information .

Thanks again I plan on keeping in touch , Susan

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

2 months 1 day ago #55946 by Cynthia
I am assuming you are the Sue part of the team? Welcome to our site but I am sorry you have to be here. A second opinion is always a good idea if you are feeling uncomfortable with the situation. Most large teaching hospitals have a good size urology department. Some are considered to be centers of excellence the two close to you are

MD Anderson in Texas (some consider it the best in the world for bladder cancer)
Vanderbilt in Nashville

Farther away

Sloan Kettering NY, NY
John Hopkins in Baltimore

There are others and I am sure others will have suggestions. I had my Radical Cystectomy at the University of Chicago my surgeon was Dr. Gary Steinberg both he and the hospital do a high volume. If you husband does have a bladder removal it is important that both the doctor and the hospital do a high volume of the type of diversion he is to have. For example my local urologist did 3 to 5 a year Dr. Steinberg does 3 to 5 a week. All large medical centers have websites and if you call them all have people that will get you the information or an appointment.

Let us know how you are doing and if we can help.

Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society

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

2 months 1 day ago #55944 by Earlsue
My husband was diagnosed with CIS about 10 months ago. He underwent BCG for the six week treatment negative biopsy then did the follow up treatment of three weeks had a positive biopsy with progression to the next layer . Is now scheduled for surgery to get a better biopsy of the tumor and removal.

We believe our next step is a radical cystectomy but I’m reaching out for input. It was not our physician’s recommendation as the first line of treatment.

Also want to locate a hospital and doc that frequently performs this procedure ( neo bladder and robotic surgery considerations)

We live in Florida but can travel

I’m so afraid for him and very thankful this forum exists

Thank you for any input you can give.

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 attachements.
  • Not Allowed: to edit your message.
Moderators: Cynthiaeddieksara.anne

Users

Total Online: 0 Users and 273 Guests 

Statistics

Total Messages: 50851 Total Sections: 1 Today Open: 0 Today Total Answer: 1
Total Subjects: 6515 Total Categories: 11 Yesterday Open: 0 Yesterday Total Answer: 3
Total Users: 7773 Latest User: WoundNurse
Powered by Kunena Forum