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Biopsy Report “chat” day…Not what we had hoped
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
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10 Replies
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Rhonda n Greg,
I will guess that most of us here agree that both of you are going through this cancer. Just like childbirth, it is a partnership – obviously with a clear division of some portions of the experience.
Fortunately, my partner in this cancer is there with her yellow pad making sure that EVERY question gets answered fully, that all expectations, promisses have been met, and that the path forward is full understood – not to mention mutual support for each other as this chapter of our life together of life unfolds.November & December is the worst time of the year for patients – my health plan and my doctors’ group is also playing that biannual game of cosmic chicken that leaves patient in limbo until new years day. Continuity of care seems to take a back seat to division of collected premiums, sorry to say.
Dr. Alemozaffar’s name has come up before. The doctor’s CV is very impressive. Using the search function (part of HELP, at the top) you can search on doctors names to see comments others have posted.
http://www.emoryhealthcare.org/physicians/a/alemozaffar-mehrdad.html
Best to you both,
Jack
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
Every day seems to bring something new….yesterday we had an urgent trip to the urologist to see just how much blood in the urine is too much. It seems you can bleed for days without it being a problem, but this was like Tabasco sauce! They scanned his bladder and said he was emptying so they sent us home to drink, drink, drink….he was clear this am. He’s also had a UTI for a week and they just changed his antibiotic. So, we are hopeful that this will help get him clear again.
The referral: We (seriously, I don’t feel like it is just Greg-We are going through this together) were referred to Dr. Martha Terris at the Medical College of Georgia but it turns out that MCG does not have a contract with our insurance for 2017 so they will not schedule him. My guess, because I have worked in medical office administration for 30 years, is that a contract will be signed on the 30th of December but by then they will be scheduling in March! Today, we had a new referral – to Emory University to: Mehrdad Alemozaffar, MD. Although it is a 2 1/2 hour drive from us and all of our amazing support, I don’t necessarily see this as a bad thing. It seems that Dr. Alemozaffar is quite a wizard with robotic RC. We have an appointment set for 1/11/16 and our dear friends are planning on going along and driving.
Thank you all again for weighing in and giving me the benefit of your insight. It’s been a tremendous help already.
Rhonda
Ronda and Greg,
Sorry you have to be here but welcome to our community. Tell Greg he is lucky to have have you on his team! I was dxed with in 04 with invasive blc, an RC later and I am still kicking and turned sixty a few months back, not easy but doable. “How is that for lingo?”
Your instincts are good find a doctor and medical center that does a high volume of the diversion type you would like. But as Sara Anne said depending on tumor placement and other factors not all diversions can be done . It is a case by case basis.
I have heard good things about Dr. Tressis. There are top centers all over the USA that do the highest volume they are all close to major Cities for the most part. I am in MA but went to the University of Chicago for my RC as it was the best place for the complications I had. All major centers have help finding temporary housing and the such. We stayed for five weeks after surgery and flew home I had chemo prior to surgery. Staying close to home is cheaper and easier but if you feel you can not find what you need closer to home let us know and we can give you ideas.
Who ever you deal with make sure that you talk to them about the DVT as they will want to refer you to someone so that they are working as a team.
I have known people who have lived full active lives with all three diversions if you have questions about any of them ask away. I have an Indiana Pouch and would be happy to share my experience with it.
Just thought I would welcome you two and give you my two cents.
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
Rhonda n Greg
Common practice is for your local doctor to “follow” you along, and be available for continuing care, after s/he refers you to a specialist. Ask the bladder specialist to copy records to your local doctor – you will likely hear that is is done as a matter of course. The specialist will let you know when to return to the specialist and when to see your local doctor for care.
Specialists (including super-specialists) count on having a true working relationship with many other doctors; every level of specialization has its limits of practice.
Ask any and everything. But be organized, have a list, and be ready for answers that contain a degree of uncertainty. Surgeons often have to make some decisions during the course of an operation.
A google search on Dr. Terris shows a great looking CV including a 4 year Urology residency at Stanford, not to mention her chairing the department at Augusta.
http://www.augusta.edu/mcg/surgery/urology/mterris.php
Be open to discussion, express your concerns, admit to your uncertainty, and ask for assistance from your medical care team. It is a team, any you are a part of it; together you will reach the important decisions.
Best to you both
Jack
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
Thank you again, Sara Anne.
How do you get answers to the questions you have? YOU ASK! After your meeting with your new doctor, IF you feel comfortable with her and IF you feel that this is a place that you could see yourself coming for treatment/surgery, and after you have reviewed the treatment plan, make a list of all your questions. For example, you may say “We understand that it is important to have a surgeon who does a large number of these surgeries…How many do you do a year?” Also ask what diversions the surgeon uses (a general urologist who does not specialize in bladder cancer often is only competent to do the simplest, the ileal conduit.) If the doctor does not discuss these questions willingly, you need to move.
You have probably read in other threads here a comment …”you wouldn’t take your Lamborghini roadster to a Chevy dealer for service” and your life is at least as important as a Lamborghini! Medical care is a service for which you pay, and it is your responsibility to “check it out.”
The “latest” thing in bladder surgery is the robotic or da Vinci device where the surgeon uses a remote device that minimizes the extent of the open exposure during surgery. This can be an advantage, BUT again, it is the experience of the surgeon, not the device used, that makes a difference. Since the procedure is relatively new, it is again critical that the surgeon have a lot of experience with it. A friend of mine who is a urologist recent spent a YEAR training in robotic surgery before she went back to practice. I would rather have traditional surgery by an expert than robotic by a novice!
You also may find that the type of diversion suggested will depend on your husband’s condition and the position of the tumor in the bladder. So you will need to judge whether such a recommendation is because that particular diversion is the only one the surgeon does, or because of medical reasons.
A lot to think about, but with your attitudes you will do fine.
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
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
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
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
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
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Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
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.Sign In to reply.
