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5 years 4 months ago #48081 by Lelly
Thank you, Catherine. I was too scared to read what you had written and finally got up the courage to deal with it this morning. I am crying out of fear, out of thankfulness that I have someone to talk about this who's been there, and out of appreciation of all of the love and support I've received from my family, friends, and coworkers. I am frightened about the prospect of having my bladder removed, but will gladly trade it for my life. You've given me hope that maybe mine will turn out to be a "lone wolf" also. I have an appointment with the oncologist a week from Monday to get the ball rolling.

Last summer I worked to prepare for a 90 mile canoe paddle with my son, in Alaska. Every time I awoke in the middle of the night to pee, my mind would immediately go to my fear of bears and the whitewater stretch we would face on the trip. I learned that I am much stronger than I ever knew having accomplished the journey. When I wake up know, I immediately think of the cancer growing inside me. I know I need to look at this as another stretch of whitewater to tackle. Once I get the plan of attack in place, I know I'll be in a better frame of mind. Right now, though, it's awful, as you know.

I have so many questions for you and others who have traveled this road. Thank you for being there!


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5 years 4 months ago - 5 years 4 months ago #48062 by CatherineH
Hi Lelly... I understand feeling that your life is upside down. A cancer diagnosis is the scariest health issue we are faced with, be it ourselves or a loved one.

To answer your question, my tumor was a "lone wolf" being a primary tumor confined to the bladder with no further indication of cancer elsewhere. It was located in the dome right between the ureters which gave the surgeon room to make the bladder wall resection.

With your tumor near the ureter, and cancer cells elsewhere, that likely would not be a candidate for doing the partial (my assessment only), but that doesn't mean you shouldn't ask. Stage T2 is invasive and divided into two classifications. T2a (mine) means invasion past the inner lining into the first half of the bladder muscle, and T2b into the second half of the muscle but not yet into the fatty outside layer (T3).

I am glad you are seeing a second highly recommended uro. If bladder removal is needed to rid your body of the cancer, that is probably the scariest and most unexpected thing you ever thought you'd be dealing with. I know it's hard to comprehend much during the shock and confusion of the first days/weeks after diagnosis, but be assured there are many here who have been though it and can help you understand the process and answer your questions. One thing they will say is that you want a surgeon who does the procedure you are having many times a year, somewhere in the neighborhood of 50 or more.

As far as chemo, newer studies have shown that chemo prior to a radical cystectomy can lessen chances of recurrences later elsewhere in the body from cells that might have escaped the bladder before removal, or chemo afterward may also be beneficial. I assume from your first post you meant they were looking at chemo before surgery. It sounds like your medical team is responding quickly in developing a treatment plan. Whatever questions you have at this point, write them down before your appointments because I know from experience, it is hard to remember everything when you're in the doctor's office. Take notes as well.

Please stay connected to the forum and let us know how things are going. You can say or ask anything here, or just vent your frustrations/worries that you might not want to voice to your loved ones. I hope you have a strong network of family and friends to lean on as you go through this... and now you are part of our family so you have us too.

Best wishes... Catherine
Forum Moderator Team

TURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TN

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5 years 4 months ago #48060 by Lelly
Thank you for responding. I am going to be going to the Wilmot Cancer Center at Strong Memorial Hospital, in Rochester, NY. I will be switching to a new urologist that my first one highly recommended. Wilmot has a very good reputation around here. I also know that Roswell is nearby. Sloan Kettering is about six hours away.

Was your bladder the primary source of your cancer, Catherine, or did it come from a different location?

I have access to the pathology report through the patient portal, but it is very confusing. She mentioned T2. She said the tumor, 3cm, was around the ureter. The neck of the bladder was also showing cancerous cells.

Ugh! Feel like my whole life has been turned upside down!

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5 years 4 months ago #48058 by CatherineH
Hello Lelly... I am so sorry to hear of your diagnosis. But let me first say that I am here replying to your post five years later, so don't give up hope. Let me ask a couple of questions:

- Are you being seen at a major hospital or cancer center who deals with a high volume of bladder cancer? If you are not, you must get a second opinion from a place like that.

- Do you have a copy of your pathology report which describes your tumor such as size, location, stage or any other info? If not, ask for one at your next visit so we can better help you understand some of the terminology (remember, we are not doctors).

I was diagnosed with primary adenocarcinoma in January 2010 after the path report came back from my TURBT. My local uro referred me to Vanderbilt University Medical Center in Nashville because he said right up front that he had limited experience with this type of tumor because it is so rare. At Vanderbilt my surgeon recommended doing a partial cystectomy which means they only removed the bladder wall around the tumor site. After the surgery, my final pathology showed that it was T2a which meant it had invaded into the first half of the muscle layer, but the surgical margins and extracted pelvic lymph nodes came back clean. I did not have any chemo.

Unfortunately, not everyone who has an adenocarcinoma is a candidate for partial bladder removal. It depends on the size of the tumor (mine was 1.6 cm, or 2/3 of an inch), and the location. Most always this is done when the tumor is in the dome of the bladder and is not near either ureter. Sounds like they plan to do further testing to determine if you have a "primary" adenocarcinoma, meaning that it originated in the bladder and not from elsewhere in your body. You need to ask if you are a candidate for a partial cystectomy before going into full bladder removal.

Without knowing more about your particular case, I can't really be any more specific. Again, I can't stress enough the importance of a second opinion if you are not already at a major hospital.

Please ask whatever other questions you may have. I know this has hit you really hard and I remember being in those same shoes. Don't give up hope. All the facts are not in yet.

Best wishes... Catherine
Forum Moderator Team

TURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TN

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5 years 4 months ago #48055 by sara.anne
Catherine, one of our monitors, has had this type of relatively rare bladder cancer. I am sure she will be responding to you.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator

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5 years 4 months ago #48054 by Lelly
Diagnosed yesterday with adenocarcinoma. Appointment with oncologist is being arranged. Likely scans to see if the cancer started in another organ and then chemo and removal of bladder. Gone from worried and waiting to scared and extremely sad. My positiveness has fell by the wayside. :( Can anyone share their experience with this type of cancer? It has not gone to the muscle layer, but in the middle layer (can't remember how to spell it - starts with an L.

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