Forum

× click new topic to begin your post

Biopsy Report "chat" day...Not what we had hoped

3 years 1 week ago #52418 by Rhonda.n.Greg
Thank you all for your kind words and guidance.

Dr. Terris is actually who we have been referred to see so it is comforting to see that you have listed her as the #1 in Augusta. I've read a ton more since I posted this so now I have new questions:

We live just minute away from AU-Dr. Terris. I have heard wonderful things about the care at the cancer center in Augusta. But we are totally open to traveling for RC and Neo - (Look at me, I'm getting the lingo!)
I wonder how travel works with follow-up and emergencies? Is the local oncologist open to working along side the out of towner?
I don't know how you find the "best" or the most experienced. It seems that many are claiming to be highly ranked. How did you choose? How do you find out who does this every day vs. once a week?

I'm trying to focus on finding the very best care for this man! I need him!

Rhonda

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

3 years 1 week ago #52413 by Jack R
Rhonda and Greg,

I'm sorry about the report, it not what we want to hear.

The following web site offers good basic information- follow the treatment links. The type of treatment suggestions vary by the stage of the cancer. I have found this site to be very useful.

https://www.cancer.gov/types/bladder

I am dealing with high grade cancer that while not yet to T2, is stubbornly refusing to go away. I have decided, for me, to lose the bladder if my cancer turns more aggressive or get closer to muscle invasive. To that end I have regular checks to make sure that lymph nodes and distant sites remain clear, with CT and MRI scans.

That said, If I received the report you described today, I would want an immediate second opinion, to include checking for any cancer outside the bladder. If there was no spread of the cancer, I would want the bladder removed as soon as possible, to (hopefully) prevent any spread. That is going to be a really tough decision I hope I don't have to make. Chemo may be an option.

We all hope to control the cancer as easily as possible with BCG or treatments. We have all read that bladder removal is the "gold standard" of treating bladder cancer. At some point, many of us will face that decision.

I wish you the best as you work through the unexpected news and, with your doctor's guidance, reach a decision on what is best for you.

Under the HELP tab on the top bar is a section called 'Treatment Center Finder' - it is a list of major cancer centers in the country; some may be near you and in your insurance plan.

Keep us informed and ask any questions as they come to mind.

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# 3
Begin year 4 with cis
2/19 Chemo #4
9/19 NED again :)
Until next scope :) :)
The following user(s) said Thank You: Rhonda.n.Greg

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

3 years 1 week ago #52411 by sara.anne
Hello, Rhonda. Most of us have been where you are right now when we were first diagnosed. I joke that I didn't even know I HAD a bladder!
You are doing absolutely the right thing in seeking treatment at an academic center, especially when there are complicating factors such as your husband's.

I am not personally familiar with bladder cancer treatments at any of the institutions in your area, but any of them are likely to be better than most of the local practices. Most urologists tend to be rather well trained in prostate problems....and this is also noted in the research experience/interests listed at these medical schools.

From reading the curriculum vitae of the urologists at these institutions, I would probably chose

Augusta: Martha K Terris, MD (while others do list some bladder cancer interests, hers seems to be the most extensive.)

MUSC: Stephen J. Savage, M.D., Sandip M. Prasad, M.D., M.Phil.
(Again, these appear to be the most interested in bladder cancer.)

Emory: Mehrdad Alemozaffar, MD

There are probably others at these institutions who could serve as a start, anyway.

Chemo prior to a radical cystectomy is not a bad option. It would help to prevent mets showing up later.

Prior to your discussions with the urological surgeon, you might find this an interesting read:
http://my.clevelandclinic.org/health/treatments_and_procedures/hic_Urinary_Reconstruction_and_Diversion
While his diversion choice may be limited by his medical condition and the location of his tumors, his age and activity level might lead him to make a choice that would really allow him to continue his active life-style,.

Wishing you all the best...and please let us know how it goes.

Sara Anne

.

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
The following user(s) said Thank You: Rhonda.n.Greg

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

3 years 1 week ago #52409 by Alan
Welcome but, sorry you have a reason to join us! Reading your post and getting a second opinion is something most of us for most situations is a good move. Especially if the path report indicates muscle invasion. Someone may be familiar with Augusta, I am not. The only advice I have is make sure wherever you go that it is a bladder center-a teaching or research hospital. Too many URO's do mostly prostatic work!

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.
The following user(s) said Thank You: Rhonda.n.Greg

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

3 years 1 week ago #52406 by Rhonda.n.Greg
My husband, Greg and I have just returned from our second TURBT chat. We were not prepared for what we heard. The doctor had hoped that we should just be confirming TI and setting up BCG treatments. Instead we are facing:
"Papillary Urothelial Carcinoma, high grade. Foci of deep muscle wall invasion is noted". We are shocked and scared.

Greg is an active, 63 year old who had never spent a night in a hospital until September when he had complications from the first TURBT. We are dealing right now and don't even know what to ask or where to turn - so I am delighted to find you all as a resource. He has been referred to Augusta University (the Medical College of Georgia in Augusta GA.) We will likely get a second opinion in Atlanta or at MUSC in Charleston, SC before we do any surgery. Greg has developed a DVT since his surgery on 11/18/16 so we now have that as a complicating factor. This leads me to think that they will likely recommend Chemo to get us through the next 6 months or so while they clots settle down.

Does anyone have any experience with Augusta University?

Thank you all for being here and being willing to share.

Rhonda

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: 0 Users and 1575 Guests 

Statistics

Today Total Opened: 0 Today Total Answered: 1 Latest User: Christina
Yesterday Total Opened: 1 Yesterday Total Answered: 1
Total Posts: 53038 Total Subjects: 6913 Total Users: 8510
Powered by Kunena Forum