3 years 9 months ago - 3 years 9 months ago#50102by CatherineH
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... Catherine
Forum Moderator Team
TURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
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
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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.
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.