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Signet Ring Adenocarcinoma of the Bladder
Hello everyone.
New to the forums–just signed up. I was very pleased to find this group. It seems like there is a lot of wisdom here. So I was hoping I could share my story and maybe if anyone had any feedback I would be happy to listen. I am a 41-year-old female and after about 5 or 6 years of microscopic hematuria (no symptoms)my PCP suggested seeing a urologist. The doctor found a small tumor during the cystoscopy and I went back two weeks later for a cystoscopy with biopsy. Pathology said signet-ring adenocarcinoma of the bladder into the lamina propria. He said this was an odd pathology to be found in the bladder. He sent tissue for a second opinion and when he got the results back I was immediately scheduled for a TURBT. The pathology came back clean–nothing found surrounding tumor. I have recently had a negative abdominal ultrasound and a negative CT scan. I have since (in the last week) also had a colonoscopy (negative) and a chest x-ray (negative) to check for any spots. Doctor wants me to now have an endoscopy and a PET scan (scheduled for next week.) He also scheduled me to see a specialist in bladder cancer in a couple of weeks. Apparently, this pathology is baffling everyone. From what I can tell after doing my own research, it’s highly likely that the cancer is somewhere else in my body and has spread to my bladder for the type that it is. However, again, I am asymptomatic. I am beside myself with panic. I am also agonizing over what I should do. I live in the Boston area so I could very easily get over to Dana Farber and seek another opinion there. Should I act aggressively with this or just wait it out, see this specialist and see how it goes? Has anyone here had a similar diagnosis? Doctor said he was hesitant to stage it because he doesn’t know if it’s anywhere else? I’m feeling pretty lost right now.
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9 Replies
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Wow… I’m kinda speechless reading this. I do hope the last news is accurate and you DON’T have bladder cancer. I’m sure this left your head spinning to say the least.
That said, this would make me lose all confidence in that practice. There was either mishandling or mislabeling of your records/slides, and gross incompetence on someone’s part. Have you had a chance to talk to your uro yet?
I think I would call the specialist’s office (who scheduled the 2nd TURBT for February) and see what he makes of this new development. I do hope you get things sorted out very soon, and that it all works out in your favor!
Best wishes… CatherineTURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TNHi Everyone.
So, I have an update. I’m starting to feel like this is all some kind of alternate reality and I’m waiting for something, anything to make sense. But I won’t be holding my breath. So my last procedure was a TURBT. My urologist had set me up to see a specialist, his second opinion in a sense. I met with the specialist on Tuesday. He reviewed my pathology and also gave me the results of my recent PET scan which showed hydronephrosis and hydroureter. The thinking is that this is caused by scar tissue forming from my last surgery. So the plan was for the specialist to go in for another surgery in February (won’t I drown in my own urine by then?) to scrape my bladder and see what’s causing the back up into my kidney. Okie doke, fantastic. Surgery is scheduled. The next day, Wednesday, I get a call from my urologist’s partner, who I have never met, and he tells me that my urologist had sent my original tissue sample to ANOTHER pathologist (this would be the third maybe?) and apparently the tumor was benign, it was all a mistake, and congratulations?! My urologist had just left for break so that’s why his partner was calling on his behalf and he’ll call me when he gets back. WHAT?? I mentioned my surgery for my new problem and the doctor said they would have to discuss and get back to me. I asked what provoked the change in diagnosis. He couldn’t tell me because he didn’t have the pathology and he’s not familiar with my case but my urologist asked him to call me so that I would know. I realize that this was only two days ago but I’m honesty wondering if I hallucinated the entire phone call. Is this even possible? I think I’m more confused now than I was a week ago.
Hi Kam,
I too was a ball of nerves when the diagnosis first came along. Let yourself cry, and take comfort from all that offer support. I also saw a therapist to help me through it and I found it very helpful. He gave me some meds to help me sleep which was very helpful. You will need your family and all you friends to help you through it. bUt you will get there, and you have us to listen as well.
Wishing you the best.
PLK
PLK in NJ
Believe it or not, it does get better with time, when you have had the opportunity to process everything and deal with the “new normal.” When I was first diagnosed with papillary bladder cancer, my thought was “now I know what I will die of!” And then, six weeks later, the diagnosis was expanded to CIS also.
Yes. I was upset. And then, both my primary care doc and the urologist suggested that I mightbe depressed. That made me very angry…didn’t I have the right to be depressed?
Now almost exactly 8 years have passed since the initial diagnosis. I am alive and healthy. Now on yearly checks….and I do get a bit anxious as the annual exam time nears.
Don’t worry about feeling anxious, etc….. You will adapt to this and will soon be counseling others!
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum ModeratorThank you, Sara Anne and Catherine. My doctor is certainly being thorough and I appreciate that. I guess I was just caught off guard when he wanted my second opinion to be anywhere other than at Dana Farber since we’re just so close to it. I think growing up in the area also has a lot of us Bostonians conditioned into thinking that it’s the only acceptable place for cancer care. I’ll see what comes of all of these upcoming appointments and revisit options then I suppose.
Thank you again, ladies, and I’m glad you all seem to be doing well. I have to ask, how did you all deal with the anxiety? I’m a ball of nerves and my mood swings are exhausting. I find myself crying uncontrollably for hours at a time. And sleeping is next to impossible. I can’t seem to focus on anything other than all of this.
Thank you for your message, Laura. I wish you the best of luck at your appointment in January.
Hello Kam… Welcome to our forum and I am very sorry that you have had to find us under these circumstances, but very glad you are here. We are not medical people, just people who have learned much about bladder cancer by going through it.
My diagnosis in 2010 was primary adenocarcinoma. There was no element of signet ring and the pathology determined that my tumor had originated in the bladder. It is good that your doctor is being thorough in checking for other sources. In the meantime, my advice would be to go for that second opinion, if only to validate the findings of your current urologist. As Sara Anne already mentioned, Mass General in addition to Dana Farber are good options. If it should turn out that you need major surgery, it is important that you are treated by a surgeon who does many of those procedures each year. These are things you can discuss when you have your appointment with the bc specialist in two weeks.
This is a situation where “waiting it out” is not what you want to do. With the tests and scans your doctor has already ordered, your upcoming referral to a specialist, plus the local availability of excellent hospitals, you should be in good hands.
Best wishes… CatherineTURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TN
WOW!! You do have a story to tell! It is good that your urologist has scheduled you to see an “expert.” Do you know who this is and where he/she is located? This information would help you to know if you need to seek another second opinion elsewhere.
Signet ring adenocarcinoma is indeed uncommon, but from my reading is not unknown as a primary cancer of the bladder. But since it is rare, you really do need to be seen at a specialty bladder cancer center. And yes, the Boston area has great options. Mass General is a good one.
Wishing you the best
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
Kam,
I am so sorry you are having this experience. Unfortunately, I am not a person who can give you any advice as I am also new to this forum and currently just trying to get a diagnosis myself. However, that being said, a second opinion may be a good thing in your situation. If there is another doctor or facility near by that you have some confidence in, I would contact them and ask to make arrangements for a second opinion.
I have a biopsy scheduled for Jan 20, (which seems like an eternity to wait) but if that test comes back with a cancer diagnosis, I am most likely going to get a second opinion on what my treatment options are. I just want more than one set of eyes to look at all the information and make a recommendation of a course of action forward.
I am sure some of the more experienced folks on this forum will provide you with their hard earned wisdom soon.
Best of luck to you in this ordeal.
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