Recently Diagnosed and Frustrated!

4 years 11 months ago #51304 by PaulaMM
Recently Diagnosed and Frustrated! was created by PaulaMM
Hi Everyone,

I was recently diagnosed with Papillary Urothelial cell carcinoma, low grade. It was kind of a fluke that they found it. I was also diagnosed with a enterovesical fistula. When they did the in office cystosocpy to see if they could visualize the fistula the Dr told me the could see the fistula and wanted to do a biopsy in the hospital. I agreed and went in thinking nothing of it. I went to my appointment following the in hospital cycstoscopy/biopsy planning to be told nothing new.. I had my 15 yr old daughter with me. The Dr came in and said "well it's cancer". When I started asking specifics he said bladder cancer. I began asking about exact type and staging and he said that it would all be done with another procedure (TURBT) and that the office would be calling me to schedule it. As I had an appointment only hours away with the colorectal surgeon to discuss the fistula I wanted a copy of the surgical report and pathology information to take with me. Once I got home and started reading it stated I have a 15CM (yes, CM) tumor in the dome of my bladder along with the fistula.

I was called the next day and the TURBT is scheduled for the 15th of this month. In the mean time my Dr has given me very little information about it and never mentioned that I had a tumor let alone the size of it. I am feeling very frustated by this!! Not only that.. how on gods green earth are they going to get a 15CM tumor out with a cystoscopy? I plan on calling the office with more questions, but I know he is out of the office this week.

To make matters more frustrating the surgery to repair my fistula (bowel resection) will have to be put off until after all of the cancer is figured out and that will not be until the 23rd of June.. and my colorectal surgeon goes on vacation that day and does not return until July 5th.. almost a month away. *sighs*

At this point I'm feeling pretty left in the dark about things with the urologist and plan to discuss that with him. I do have a bit of a medical background and do not like the way things have been handled. Any thoughts or suggestions would be greatly appreciated!


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

4 years 11 months ago - 4 years 11 months ago #51305 by Cynthia
Replied by Cynthia on topic Recently Diagnosed and Frustrated!
I am sorry you have to be here but welcome to our community. First off take a breath you have had a lot come at you very fast from the sound of it. A piece of advise is always get a second opinion when you are told you have cancer. It will give you if nothing else the peace of mind in knowing that you are on the right course. If tell us what state you are in we might be able to give you suggestions on where to go. By the way with bladder cancer size of tumor means little I have seen huge ones be nothing and small ones be more. You will not know what you are dealing with until your pathology comes back. But having said that remember that there are half a million people in the US alone who are bladder cancer survivors. I am a ten year survivor of invasive bladder cancer and here I am doing fine. Try to get your ducks in order to find the best treatment you can find. Then the hard part is waiting I know all of us here have been there. I know that it is easy to fear the worst in and that is human nature but know that the odds are in your favor statisticly. Try to find things to keep your mind busy and be kind to yourself and others. We are here if you need us.

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
The following user(s) said Thank You: PaulaMM

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

4 years 11 months ago #51308 by PaulaMM
Replied by PaulaMM on topic Recently Diagnosed and Frustrated!
Thank you Cynthia!!

I am in Michigan located between Grand Rapids and Lansing, but my insurance will only pay for Dr's in the Lansing area. I guess I should give a little more background. Way back in 1990 I was diagnosed with Juvineal Granulosa cell Ovarian Cancer. It is a very rare form of ovarian cancer ( It was diagnose after I had surgery to remove a 6.5lb tumor and my left ovary and fallopian tube. I received the news about 6 weeks after surgery as it took them that long to determine that is what it was. There was no chemo or radiation, just frequent check ups that dwindled over time. It can recur many years later.

In the mean time my dad was diagnosed with non-hodgkins lymphoma, and then hodgkins lymphoma and fought for 12 years before passing away in 2009. My brother was diagnosed with Esophageal cancer and fought it for about 9 years before losing his battle in October of last year. My sister was diagnosed with Thyroid cancer and my other brother was diagnosed with kidney cancer, both are currently cancer free. My youngest sister had so many abnormal cells on a pap that they told her she would have cancer in less then a year and did a complete hysto on her a few years back.

So I do know battles can be won and lost. I have read up on bladder cancer, and I see that the 5 year survival rate is good!! I have also seen that recurrence is frequent.

I guess I am just frustrated at this point that my ducks are wandering all over and not lining up yet (bad duckies) :D Between what I feel is lack of information from the urologist, all the unanswered questions and what feels like a constant burning from a UTI caused by the fistula that will not be fixed for well over a month, I'm not getting much sleep. I know that is not helping my stress level at all.

As far as getting a second opinion on the cancer. I did see the Pathologist report and see that it was also examined by a second pathologist. So I don't have any reason to believe that it is not cancer. I guess the treatment on the other hand could be where a second opinion could be handy. That is actually one of the questions I have for the Dr. I see that doing a dose of intravesical chemotherapy at the time of the TURBT can reduce recurrence rate by up to 40%. I am wondering if this is something he plans on doing.

As I said he has discussed nothing with me other then to tell me that they would "shave" my bladder (his words not mine) to remove the tumor and surrounding tissue.

Again I appreciate any thoughts, suggestions or comments! :)


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

4 years 11 months ago #51309 by sara.anne
Replied by sara.anne on topic Recently Diagnosed and Frustrated!
Paula, the purpose of a second opinion is NOT to determine if it is cancer; it it to get a recommendation from an expert on diagnosis and treatment, particularly in complicated situations. And your is not just the "garden variety" case with your background.

It might not hurt to ask your insurance if they would cover a second opinion at a medical school (Univ. of Michigan?) under the cirecumstances,.

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: PaulaMM

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

4 years 11 months ago #51313 by Hudsongrl
Replied by Hudsongrl on topic Recently Diagnosed and Frustrated!
Paula that chemo after TURBT is very imoortant. The first uro we saw told us he did not do that. We moved on to a large teaching hospital where it was done. My hubby was diagnosed in 2012 and has been clear since. I believe the removal technique and mitomycin (chemi) are most important. Get to the best doc you can find. Some do 10 bladder cases a year...ours does 300. It makes a difference. Best of luck:)
The following user(s) said Thank You: PaulaMM

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

4 years 11 months ago #51316 by PaulaMM
Replied by PaulaMM on topic Recently Diagnosed and Frustrated!
Hi Sara!

I called the urologists office and they will not be available to answer my questions until Monday. I called the insurance company and asked about a second opinion and about U of M., they happen to be covered!! I called the urological oncology department and explained the situation, they have me in the system as a new patient and will be calling me either by the end of today or Monday to set up the appointment, she said it typically takes a week or 2 to be seen.

After all my reading I am really to the point of canceling my TURBT if the local urologist does not use the mitomycin treatment afterwards. My concern is not only for my bladder, but with the fistula, there is an opening into my colon!

Thank you all so much for you input and suggestions!!

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

Moderators: Cynthiaeddieksara.anne