Small Cell Bladder Cancer

My husband, 45 years old, was diagnosed with bladder cancer right before Thanksgiving 2010. He had his first surgery to remove the tumor on December 7, 2010. The pathology report came back showing the tumor was about 4cm and was very aggressive. We were sent to an urologic oncologist in January 2011. Since the pathology report said the tumor didn't invade the bladder wall dr. suggested another resection at three months then treat with BCG rather than bladder removal. On March 4, 2011 we went in for resection. CT scan showed tumor had already returned and one lymph node was swollen. On March 8, 2011 my husband had his bladder and prostate removed and neobladder created. When pathology report came back, the doctor said one lymph node tested positive for cancer and that the original pathology from December was wrong. This was not primary bladder cancer, but rather he has small cell cancer in the bladder. The doctor said he couldn't answer any of our questions because this cancer is so rare and not his specialty. We go back to have a check up on March 31 to make sure everything surgically is fine and remove remaining stints and catheter. Doctor has yet to refer us to an oncologist, give us any kind of alternatives, treatment ideas, survival rates, or any idea of what we may be in for. Information on the internet is just scary. Do any of you have any recommendations on what kind of treatments we should pursue or places we should go? Are there any natural treatments that may also help? Any kind of advice or information (good news or bad news) I can get right now would be appreciated.

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Welcome to our community. We are all reluctant members, but are here to aid and support one another.
We do have some members who have small cell diagnosis. I'm sure they will give you info from their experience as soon as they see your post.
This cancer is varied and presents in many stages. It is not cookie cutter treatment.
We usually do recommend that you find doctors and hospitals with much experience in treatment of bladder cancer. Oncologists without bladder cancer treatment experience will only delay your learning which steps you need to take now. I'm sure a regimen of further treatment can be determined and set in motion for you.
You might want to look at the listing of scientific advisors BCAN uses for the foundation (click on the BCAN logo at top of screen or any of the links for Resources to your right of the home page here). You will find a wealth of information at our home web site.
Our mantra is ... knowledge is power. We believe we each must become knowledgeable in order to be our own best advocate.
Karego

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Browns-crossing had a mix of different bladder cancer where there was some some cell cancers as well. She is also an RN and very knowledgeable. I suggest you befriend her.

I have come to understand that bladder cancers many times is understaged. Where is your husband treated? It is crucial that you see a well reputed bladdercancer specialists that deals mostly with bladdercancer. I am not sure what your doctor meant when he said it wasn't original bladder cancer, did he mean that it started somewhere else? I believe that small cell can start in the bladder even though it is very rare. I had poorly differentiated mucinous adenocarcinoma in my bladder which is also very rare, it originated from the bladder. (but sometimes it starts elsewhere)

There are many excellent hospitals that are top notch when it comes to dealing with bladder cancer MD Anderson, Sloan and USC to mention a few. I was treated at University of Chicago by Dr Steinberg and I have great confidence in my surgeon.

Anna

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I meant to say that Browns-crossing had some small cell cancer in her bladder.

I just reread your post and I strongly recommend that you ruin to get a second opinion. It might mean that you will have to travel but you need the expertize of a highly experienced team. I suggest MDA.

Anna

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I had small cell cancer of the bladder too and was diagnosed at USC. Only 1% of the bladder cancer is of this type. My oncologist there had me do 4 three weeks of chemo then wait 6 weeks afterwards before the bladder removal and a neo-bladder constructed. The cancer had invaded the muscle. The operation was August 16th, 2010 and all is going very well.

Normally small cell cancer is found in lung and that was NOT in my case. The chemo is important because it often can come up in other areas. I did have 42 lymph nodes taken out during the operation and fortunately they were all negative. Ask you doctor about the lymph notes and about the chemo treatments. If the doctor is not a bladder cancer specialist, find one. My oncologist is Dr. David Quinn and he is terrific. My surgeon is Eila Skinner. Both are outstanding!!

Seven months out and I am back to a normal life!

Good luck

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Hi, I had small cell bladder cancer at age 49, now 52. Had chemo first, then a radical cystectomy. My margins were clear after, and so far, thank God, my CAT scans are negitive. Your husband has to see an oncolgist, asap. Small cell is a rapidly growing and dividing type of cancer. It is agressive. Your husband most likely needs more chemo. Make an appt. with the oncologist he saw first. Just do it and go. Then get a second opinion asap. Small cell cancer is rare, agressive, but you can live and you can kill it. I am now two years four months cancer free. I did not smoke or drink or work around chemicals. No cancer in my family. You have to be the advocate, do not wait around for the doctors. I do not know where you live, but if you give a post asking for someone good for a second opinion in your area, I am sure someone on the site will come through.
Please let us know how you all are doing.
Best wishes,
Browns Crossing

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My husband had small cell at age 46 last year. It was small cell bladder cancer as it originated in the bladder and he had no signs of small cell anywhere else. He started w/ four rounds of chemo then had the bladder removal w/ neobladder in August. 40 nodes tested clean and now it's just monitoring every few months to see if it reoccurs. Small cell is rare and very aggressive; like the others already said, go see someone and do it quickly. You can not delay treatment w/ this stuff. If you don't have time, go back to original oncologist and discuss what the next step is but I don't like the fact that your dr. has never dealt w/ the small cell. If oncologist has no experience with it either, ask either one of them who they could recommend drs. that have experience w/ it. I would think since he hasn't had chemo that it would probably be the next step to stop spreading outside of bladder but I'm no dr. In any case, move quickly.

I hope we can all be of help to you and don't hesitate to get in touch!

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Also, you can drive yourself crazy reading the clinical trials, etc., on the internet. We did that right after diagnosis and it saps your hope! It's great to be informed but move on and do what you have to do for your husband. Every case is different and results are different, you're not a number or statistic, try to remain optomistic!

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MD Anderson in Houston, Tx has had good success treating small cell bladder cancer. I would try to get a 2nd opinion with them and have them at least give you a plan of attack. I know it is a ways from you but would be well worth the trip. Take care.
Keith

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I truly appreciate all of your responses. Unfortunately, we are in a small rural community that is 2 hours from Boise, Idaho; 3 hours from Tri-Cities, Washington; and 5 hours from Portland, Oregon, and these are the nearest big cities. We have discussed that it may very well be necessary to uproot for a while to be in a location where we can get the treatment we need. I know for sure our very next course of action is to get pro-active in getting referred to the right people and to get second opinions immediately if not sooner so we can get on this FAST.

Again, thank you all for your fast responses. It is definitely nice to know we are not all alone in this battle and there is an avenue for support.

Tracy

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I had small cell. In December 2009 the tumour was removed ( stage 3, muscle invasive) and then I immediately started 12 weeks of chemotherapy. Then my bladder was removed. I was offered radiation but turned it down and I am glad I did not choose radiation. So far my scans are clear. While small cell is usually a lung cancer, it can show up as a primary cancer anywhere in the body although this is rare. There are a few of us on this site with small cell in the bladder. This is a very aggressive form of cancer but it responds well to chemotherapy. Because it is so rare, the cancer agencies often put together a team ( they refer to this as a "conference') to review the situation. Many very good oncologists have never seen this type of cancer. Time is of the essence in getting this treated. I hope you will keep in touch with us! Good luck.

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So sorry that they didn't get the original diagnosis correct.
My sister was diagnosed back in October 2010 with small cell that had invaded the bladder wall but with no evidence of any further spread. She just completed her sixth session of chemo with 3 weeks between sessions. The chemo was cisplatin and also etoposide. This was at Queens Hospital in Honolulu. Now she is scheduled for surgery to remove the bladder in late April. The lengthy chemo treatment has been difficult, but it's over now.

Looks to me like you have a doctor who has not handled things well. The original diagnosis was wrong and the three month wait for another resection sounds questionable at best. Get somebody else. Listen to what others here advise.

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A friend of mine (whom lived in Minneapolis) made an appointment with MD Anderson and flew in there for a second opinion, she also flew in to Sloan and stayed there for a couple of days to see if she could get into a clinical trial. (she had metastatic bladder cancer )
There lots of options and might not mean that you necessarily will have to relocate, you might only have to travel for e few days initially.

Unfortunately this is not a situation where you have the luxury of a wait and see approach.

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Just like everyone else in the group, I highly recommend your husband getting to a Major cancer center. My husband had invasive bladder cancer (age 42) and we live in Houston, TX and he was treated at MD Anderson. Excellent doctors that specialize in ALL cancers. I hope he can get the treatment he needs and fast. We wish you the best of luck and we will keeping you guys in our prayers!

Stacey B.

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I too dx'd with small cell in the bladder invading muscle. I went through 4 rounds of chemo, Carboplatin and Etoposide. Now waiting for R/C on 4/28. Per all scans and whole body bone scan, it is still only in the bladder. My uro said due to type of cancer, neoadjuvant chemo was highly recommended. I was given Carboplatin due to issues with my kidneys. One of which will probably be removed at time bladder is removed.
Hoping you & your husband will be able to get to a great uro to treat this for him. Will keep you both in my prayers.

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Thank you all for this information. We sent in a self referral today to MD Anderson. So I hope to get an appointment very soon. I will feel better knowing we are going somewhere that know how to treat this small cell cancer. I think it will be well worth the money spent to get there to get a correct evaluation and treatment plan.

Again, I really appreciate all of the help and advice I have gotten on this discussion. I am very glad I joined this community.

Tracy

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Hi Tracy,

As you have found out small cell carcinoma of the bladder (primary tumor of the bladder, meaning there is not small cell carcinoma in some other more likely organ, most commonly the lung) is an uncommon form of bladder cancer. It is an aggressive tumor that requires aggressive and appropriate therapy, most often more than just a surgical procedure. Many times it is treated with a combination of therapies including chemotherapy, radiation, and RC. I hope you get an appointment at MDA soon and that it proves to be productive. Best wishes,

jj

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My husband had first symptoms of bladder cancer at 49 but first treated as infection.Eight months later in November 2008,tumor removed Stage3 diagnosed and bladder removed in December of 2008.Only at that time,after surgery,did final pathology indicate small cell cancer.We didn't get the chance to do chemo before and research does indicate better outcome with neoadjuvant.However thankfully,after 4 etopocide/cisplatin and prophylactic XRT of the brain,neobladder working great,all is well right now.Good Luck to you.You are going to a great place.Our oncologist conferred with them because she said they were doing the most extensive work with small cell.Again work quickly,and best wishes.

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We too are in Houston but got nowhere with MD Anderson.,....The gal on the phone said we had to pick a Medical Oncologist first and then get biopsies before we can go there. (cart before the horse) We are in the process of seeing a Urolgist cancer specialist at Baylor (got the name from Sloan Kettering Cancer center) as at this writing we have no idea exactly where the cancer is in the renal pelvis. We discharged one doctor as they dragged their feet too long and time is preciosu when one has cancer. Good Luck to You.

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Hi, first, take a deep breath. I too have small cell bladder cancer, along with transitional and adno carcinoma. We Hit the jack pot. Small cell is extremely aggressive. It is a neuro endrocine cancer. I did talk to you before. I strongly recommend you RUN to the nearest cancer center. I don't know where you live. But MD Anderson in Texas is great. I went to Mass General and Brigham woman's / danna farber Boston. You have too, and I mean as soon as you read this, get on the phone and get an appt. with an oncologist at a major cancer center. Explain to them what happened. You were diagnosed wrong, and now you have found out you have small cell and need to be seen ASAP. I think you doctor is neglecting you. I know when my slides were read from my tumor removal - and verified by 3 other pathologists- I started chemo in 4 days. You husband most likely needs more chemo. I think it's unforgivable your doctor has not arranged for him to go to a specialist. But... never mind that for now, you need to take the bull by the horn.
Where do you live? Go to the hospital, get all your husbands medical records, and request the pathology slides. You tell the hospital you can't wait, so you need them asap. Do this while you are waiting for your appt. Friend me. I will help you if you like, but this needs to be done soon.
Best
Browns Crossing

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I was diagnosed with small cell in December.2010. I went to Hopkins, MSK, NY Hospital and ended up at Md Anderson. They seem to have the most experience with small cell. I had my pathology report December 17th and started my chemo on December 30 th. Time is of the essence.

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