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Adenocarcinoma?

3 years 10 months ago #48294 by Lelly
I do think my doctors are being very thorough. And, like yours, my oncologist doesn't seem to know what to do with adenocarcinoma. I also believe that he is considering skipping the second TURB and going right to the RC. I've been preparing, emotionally. I am strong, both physically and mentally. I can do this. I'm most thankful that I have you and the others to talk to about this journey, my fears, and to get answers from people who have been there. Thank you, Catherine. I'm sure I'll have more questions as the days go by and will be in touch. Lelly
The following user(s) said Thank You: CatherineH

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3 years 10 months ago #48293 by CatherineH
Lelly... ask about whatever is on your mind. When I was in the whirlwind of diagnosis, surgery prep, etc., I didn't even know what to ask because I didn't know who to ask.

As far as experience with these rare tumors, there isn't a lot out there just because they don't happen very often. I went to Vanderbilt University in Nashville for my surgery. They are a highly rated facility for bladder cancer. I got referred there because my local uro said he didn't know anything about treating me because he might see one case like this in ten years. Even though Vanderbilt was 300 miles away, it was the right decision for me.

At my first consult with my surgeon, I asked about chemo and he said he wouldn't even know what type to use because there really wasn't a protocol for it. Keep in mind that he already had the path report from my initial TURB when the tumor was removed by my hometown uro. My tumor was in the perfect place to allow the partial cystectomy procedure. Unfortunately, not all adenocarcinomas meet that criteria.

I don't have a guess as to why your doctors are looking so closely elsewhere, but hopefully they are just being thorough and careful. You could just ask them why and what they are looking for. Maybe it's just because it is rare for adenocarcinomas to start in the bladder (aka primary) since it is the same type of tumor that is often found in cases of colon cancer, but they ruled that out already for you.

If you, and your doctors, are certain that bladder removal is what is needed, then another TURB is most likely not needed. That is generally done to check the results of the first one and to confirm the diagnosis. At this point after all the tests you've had, a diagnosis should have been firmly determined.

I'm so sorry you're facing this challenge. I know you are tough. You've faced 90 miles of bears and whitewater rapids. You know how that fear felt. The fear of bc is paralyzing in the beginning when all these decisions need to be made. There are many here who live very normal lives (although it is a "new" normal) after cystectomy, and you will too. We will be here to help you get through it by answering any questions you have along the way.

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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3 years 10 months ago #48292 by Lelly
Just to clarify, Catherine, I did not attend yesterday's "tumor board" meeting on my case. No worries about not getting back to me sooner. I appreciate your words of wisdom at any time!!!

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3 years 10 months ago #48291 by Lelly
Hi Catherine, Thanks for responding. I also think that the pathology report labeled my tumor primary adenocarcinoma, but for some reason the doctors keep looking to be sure it didn't start somewhere else just because of the type of cancer it is. I've been scheduled now for an endoscopy next Wednesday and then my second TURB is tentatively scheduled for Friday. I say tentative because I'm meeting with the oncologist on Thursday and he is waiting to let me know if he wants me to have the procedure done on Friday, based on if anything shows up in the endoscopy. I didn't speak with him directly, so I am assuming that if nothing shows up in my esophagus or stomach, then perhaps he'll move right toward the cystectomy without the second TURB. Does that make sense to you? My other question for you is regarding chemo. I know that for most bladder cancer, they've found that chemo before the cystectomy is the best practice. Is it different for adenocarcinoma? How much experience did your doctors have dealing with this type of cancer? Mine seem to have little to none. Did they consider chemo for you? Finally, I apologize if I've asked you something that was asked before. I'm sorry that this disease sets us up for the fear of its return.

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3 years 10 months ago #48290 by CatherineH
Hello Lelly... I am very sorry I did not see your post before your appointment. My pathology report came back stating that it was a 'primary adenocarcinoma of the bladder' which means they determined it originated in the bladder and was not mets from another site. I don't know the science behind the pathologists findings.

There were no other tumors present, the margins were clear of cancer, as well as the three lymph nodes that were excised for pathology. I used the term "lone wolf" (not the doctor) since it was a solitary tumor at that time. I can only hope that remains the case in the future, but there is still a chance of mets elsewhere even after 5 years or more. That is the scariest part of bc.

I guess there is really no way to be 100% sure, but based on tissue specimens examined, that was the conclusion. I have been CT scanned every year since my partial cystectomy in Feb 2010 and nothing suspicious has been found. The doctor has suggested that we do one more annual scan, then stop the CT's due to the radiation exposure, and just do cystoscopies.

Please let me know how your appointment went. Again... so sorry I missed your post.

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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3 years 10 months ago #48275 by Lelly
Catherine - I'm wondering how they came to the conclusion that your bladder adenocarcinoma was a "lone wolf". Which scans and/or tests did the doctors do to be sure? The team is meeting tomorrow to discuss my case and my next appointment is Monday. Since my first appointment with the oncologist I've had a chest x-ray, a colonoscopy, and my gynecological exam and ultrasound, all of which came back fine. I guess I'm just wondering what else to expect.

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