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Adenocarinoma in Bladder

3 years 5 months ago - 3 years 5 months ago #48973 by CatherineH
That seems like a logical approach, but with an invasive tumor type, time is always a factor so make sure all those steps happen quickly. It is a good sign that the CT scan did not indicate any involvement of lymph nodes.

Again, ask how many primary bladder adenocarcinomas they have treated. My first uro said he might see one every 10 years. This is a fairly small city without a lot of top medical facilities so I chose to be treated at Vanderbilt although it was 300 miles away.

I looked at the Yale Smilow website and it talks at length about prostate cancer, some reference to kidney cancer, and very little about bladder cancer. It does mention immunotherapy options for bladder cancer (BCG, etc.), but that is not generally considered for these tumors as I believe they explained to you.

Also when you discuss partial cystectomy, ask how many of those they have performed. In bladder cancer surgery, experience and repetition are of utmost importance.

I would still recommend going for a second opinion, preferably to a high-volume bladder cancer center like Memorial-Sloan Kettering in New York or Mass General in Boston, perhaps while waiting for that second TURBT. As another option, you can have the pathology slides sent to Johns Hopkins in Baltimore for a second read on those. I'm sure your head is spinning by now.

I'm certainly not trying to diminish the quality of care of Yale Smilow. I'm sure it is a very good medical facility. Bottom line, your wife and you have to be comfortable and confident in your medical team... wherever that may be. As long as you both feel her needs are being met by the Yale team, then that is where you should be. I'm sure your meeting next week will answer many of the questions you have.

Let us know how your appointment goes next week.

Best wishes... Catherine
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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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3 years 5 months ago #48972 by wassct
Hi Catherine,

Thanks for your reply. She is currently being treated at Yale Smilow Cancer Center. After writing this I got a more detailed message from the doctor. He said the tumor was moderately differentiated. Because adenocarcinoma is uncommon in the bladder he wants to have the other tests done to confirm it's not coming from another source but specifies he does not think this is the case. She is scheduled for an MRI to reevaluate the pelvis and specifically the bladder wall. Also wants to make sure there are no enlarged lymph nodes. There were none on the CT scan. Also a colonoscopy and endoscopy to rule out GI tract source.

In summary, here is the plan and would love to hear thoughts:

(1) MRI of abdomen and pelvis and if abnormalities found then a PET/CT scan.

(2) colonoscopy and endoscopy

(3) Repeat Cysto and transurethral resection to restage tumor as he cannot accurately stage tumor yet based on first one.

Then with all the info we can plan further option which include partial cystectomy or close followups or systemic therapy (which he does not think will be required).

Thanks!

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3 years 5 months ago - 3 years 5 months ago #48970 by CatherineH
Hello... I'm very sorry to hear about your wife's diagnosis. I know both of you are scared and overwhelmed with information. As Sara Anne said, I was diagnosed with a bladder adenocarcinoma in January 2010. A local uro did the TURBT and as soon as my path report came back, he said right up front that he did not have much experience treating this rare tumor and he referred me immediately to Vanderbilt Medical Center in Nashville. There was no talk of waiting to do a second TURBT. I was at Vanderbilt within 2 weeks.

When I went for my first consult with the Vanderbilt surgeon, he said his recommendation was to do a partial cystectomy which would remove the portion of the bladder around the tumor site. He also said we could "wait and watch" but made sure I understood that cancer cells are like toothpaste... once they are out of the tube you can't put them back in. I opted for the partial cystectomy.

Where is she being treated? Ask how many times they have treated this type of tumor. I am not comfortable with the doctor "thinking" it is localized to the bladder, or waiting to do a second TURBT in a few weeks. These tumors are always invasive. My doctor treated my case with urgency and after he removed the small portion of my bladder, a tiny area of cancer cells was found in the specimen meaning the TURBT had not gotten everything and it had started to invade the muscle layer.

My advice is to get a second opinion as soon as you can
, preferably at a major bladder cancer hospital, to see if another experienced uro agrees with your doctor's approach. With bladder cancer, you have to be your own best advocate and push for getting the best treatment possible. Also get a copy of the path report so you know exactly what was found and how they staged the tumor.

I don't mean to scare you more than you already are. It sounds like they caught your wife's early which is very good. Mine was caught fairly early as well, and that was almost six years ago. Please let us know how things develop.

Give your wife my best wishes. I know how it feels to be in those shoes...

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
The following user(s) said Thank You: wassct

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3 years 5 months ago #48969 by sara.anne
One of our members, Catherine, had adenocarcinoma and I am sure you will hear from her. She had a partial cystectomy at Vanderbilt University and is doing great.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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3 years 5 months ago #48966 by wassct
My wife had a TURBT last week and the doctor called today with lab results. He said the tumor was an adenocarinoma which is very rare. Less than 2% of bladder cancers are this type from what I understand. It didn't show in the muscle but he will most likely do another TURBT in a few weeks to be sure.Typically these cancers may have an origin somewhere else in the body so it's standard procedure to do further scans. He did mention that he thinks it was localized to the bladder but they need to investigate elsewhere as standard protocol. She is getting scheduled for an MRI next week as well as a colonoscopy and endoscopy. The doctor feels if they don't see anything else after conducting these additional tests then they will do another TURBT and keep a close watch on her with frequent checkups. He also mentioned possibly removing part of the bladder if anything else shows up after a secondary TURBT in a few weeks. He said chemo will only be an option if it's seen elsewhere and this particular type of cancer is not radiation sensitive. Also didn't mention BCG so not sure if it's not needed or an option in this case.

Does anyone have any experience with adenocarinoma in the bladder? Is it considered a more aggressive cancer or non aggressive? Our appointment with our doctor is not until next week and we are very new to this whole process.

Thanks for your help, feeling scared for my wife :(

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