I am new here and just wondering if anyone has had small cell carcinoma of the bladder It is very rare I have spent the last year dealing with this and going for my ct scan next month and hoping for the all clear. So far so good. Thanks
You are absolutely right....small cell carcinoma of the bladder is found less than 1% of the time. There haven't been a lot of people with this diagnosis here on the Forum. The last "thread" about small cell was
If you go to the top of the Forum, there is a link that says "search Forum." If you click on that, you can search for other, older postings.
Be sure that you have checked the box that says "Forum" under the search.
With such a rare diagnosis, you want to be sure that you are being treated at a place that sees LOTS of bladder cancer cases. Where is your urology team located?
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Hi. I had my chemo done first at Dana farber and my operation at brighams. I go back next month to Dana farber for my ct scan and will see the surgeon and the oncologist. So far have had 2 ct scans and no cancer detected. The tumor was very large so had BC/IC. The operation was done robotically so hardly any scars but a lot of organs removed and 20 lymph nodes. Walking 2 miles a day weather permitting. They said a year after the operation I should feel normal. My new normal.
It is so rare that brighams hasn't seen small cell in 13 years and my drs have never treated anyone with small cell. We found a study done by MD anderson. Has had success with small cell. Chemo must be first and the chemo did work for me, I was lucky. Then the operation. No traces of small cell in organs and lymph node. Unheard of with small cell. It likes to travel rapidly. So that is why I am tested often.
They said I was 1 of 5 women detected with small cell of the bladder this year in the US. It is slightly more common with lung. More common with men who has smoked. I don't smoke So they treated me with the lung cancer treatment. But more people seem to be getting bladder cancer with small cell so I thought I would take the chance and see if anyone was out here.
I am a female and I have small cell carcinoma of the bladder as well. In fact, last week I had my CT scan which showed a huge reduction in size of my tumor. I have an appointment scheduled with my surgeon for a consult and to schedule my surgery. Apparently the procedure that is most recommended is to do an illegal conduit. I have to say, I have felt very depressed all day since my doctor gave me this information this morning. I just can't seem to wrap my head around the idea of having a bag attached to my abdomen. On the other hand I don't want the cancer to come back and it seems to be the only way to be sure of that.
Good luck with your recovery, and I wish you the best. It certainly is not a fun journey, but I keep telling myself it could be worse. May God be with you and all of us that have to deal with this horrible disease.
Sorry to hear that you are going through this. It is so difficult to know you have a rare cancer , I know. I just went for my 6 month ct scan and no cancer. Will go every 3 months for years. It is a job to get to your new normal. I have been living with my stoma and bag and now it is just part of me. I now look at this as my second chance and it has saved my life. The stoma is easy to deal with compared to everything else. Before I had my operation I made an appointment with a stoma nurse and that helped me a great deal. She let me know your life doesn't really change once you are comfortable with the bag. She showed me how it attaches and made it less scary
As you have probably read I have had the chemo and then the operation and recovery takes a longer amount of time than I had thought. I feel good now and they said I will feel fine at 1 year.
I also have had to learn (still working on this) to go to my 3 month ct scan and just be happy when they say no cancer and leave it at that. Small cell is so rare they just don't know. But for now I am okay and I can live with that. YES we have a chance and don't forget that! I bought garments to help with the bag from ostomysecrets.com and they hide the bag and make the bag more secure. I can wear almost anything. Jeans shirts, whatever. I have bathing suits with a pocket. No one knows.
When is your operation? If you have any questions please let me know.