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Does anyone have any experience with small cell bladder cancer? If so , how did your physicians approach this issue in terms of treatment? Apparently it is very rare and is normally associated with brain or lung cancer, though my father's scans show no cancer in either of those areas. Please note his cancer was quite progressed by the time it was found, a 6x6x2 cm tumor blocking the urethra and metastasis in the lymph. Thank you.
Cancer Surgery Prostate cancer Pain Neobladder Small cell bladder cancer Ambien Carboplatin Lung cancer Bladder cancer
Welcome to BCAN. There is much to learn here in this community. We do have some members with small cell diagnosis. Do a search and you'll be directed to those posts.
Please go to our BCAN home site and learn what you can. Ask for the free booklet Bladder Cancer Basics for the newly Diagnosed.
This cancer, in general, is little known or talked about, so info is not easily found. That's why BCAN was established. It is dedicated solely to bladder cancer.
The recurrence rate for bladder cancer is quite high, so once diagnosed, it is a lifelong schedule to keep abreast of new tumors. Radical surgery needs to be done by an experienced surgeon who deals with bladder cancer and is qualified to guide you to a healthy outcome. If his cancer is near the urethra and is showing in the lymph nodes, he needs quick attention and remedial care.
Karego
Hi and welcome to BCAN. I agree with Karen's comments and am hopeful that our members dealing with small cell ca of the bladder will soon chime in with their experiences. As you no doubt know by now small cell is an aggressive tumor that tends to be at a higher stage at diagnosis. Although I am not certain I expect that a different chemotherapeutic regimen is pursued for small cell than for ordinary urothelial cancers, and would encourage you to seek an opinion from a comprehensive cancer treatment center that emphasized urologic tumors. Best wishes for the best possible outcome for your father.
JJ
RUN! don't walk to get treatment. Small cell cancer of the bladder is highly metastatic and rare. I was diagnosided at 49, and now am 50. I have small cell and transitional cell cancer. I had one UTI with blood, went to the urologist, had a cystocopy, 2 days later went to the OR (they had a cancelation I was able to move in to), they took out the tumors, and did alot of bx. Took 2 weeks for the diagnosis to come back (this is because the double and triple check with many pathologists because it's small cell and rare). As soon as I found out, I called 2 cancer hospitals in Boston. One I had to wait a month for an appt. the other 1 week. I took the one with a week (Mass General), they started chemo 4 days later (after a CT of chest, abdomen, and pelvis & a bone scan). all were negitive. You want to start chemo ASAP due to the high degress of metastactic disease it can cause. the soon the better your chances. After chemo you will have a total radial cystectomy - removal of the bladder. After you will be followed every 3 months with CT scans, blood, and urine. FOr at least a year. then maybe every 6 months. During surgry they will biopsy your lymps in your abdomen. If positive, more chemo. But remember it can be cured, you can be put into remission. YOu will be sick for a while and surgery will take a lot out of you. But small cell cancer can be put into remission. I am liviing proof. I am scared, but we all get scared. the best thing you can do is go to a teaching cancer hospital. Even if you have to go far away. It will give you a better chance, because it is rare. Less than 0.1% of the population with bladder cancer have a small cell componet of it. So like I said RUN, RUN, RUN and demand you be seen ASAP and start treatment ASAP. Any other questions please feel free to ask.
Hello,
Recently we were brought into a couples life by chance,,,through our son,,,,,,
We accompanied them for a second opinion at the Cleveland Clinic after they had been at a local hospital here,
His diagnosis,,,,small cell,,,,in his case it is inside and outside the bladder,he is recieving 18 traetments of chemo,,,,then a scan,,,,,,the surgeon at the clinic and the oncologist have got there heads together in his case,,,,to see if surgery will be an option,,,,only if the chemo works of course,,,
so its a waiting game right now....he aslo gets daily shots for his blood count,,,The Taussing Cancer Institute is at the Cleveland Clinic,,,,Dr. Garcia oncologist,,,,,surgeon Dr. Stephen Campbell...
If you go to the journal section,and see Cleveland Conference video,now available,,,,and watch it,,,,,so much go info,,,it may be on page 3 or 4,,,,,,
I am sorry for all this news,,,,,but there is always hope,,,,,,,,especially with the people who specialize,,
in small cell areas,,,,,,,,,,,,prayers to you,,ginger
Oh,and I wouldn't wait until October but move quicker as time is of the essence with any cancer type,,insist on sooner testing,,,get a second opinion as well........in a hurry,,,,,,,ginger
Hi. Thanks to all of you for your information. I will definitle pass this on. I am afraid my posting was not very clear. It is my 72 yo father who has cancer, not me. He was diagnosed in March, the tumor was removed, a PET scan showed cancer in the lymph, he has already rec'd 4 rounds of chemo, the tumor contiued to grow (or reappeared), and he is now awaiting a radical cystectomy in early Oct. He had elevated PSA levels for almost 3 years and traces of blood in his urine which was detected by two separate doctors, and what appeared to be URIs, extreme frequency of urination. His former doctor, who is the head of urology Georgetown university in Maryland for some unknown reason could not come up with the diagnosis of bladder cancer and the possiility of prostate cancer kept being pursued. It wasn't until his family doctor found cancer cells in his urine in a routine office test that he was diagnosed. He did receive the above treatments ASAP. I was really looking for very specific info on types of chemo used, the names of centers or doctors specializing in small cell , or any treatment info specfic to smal cell so that I could pass this info on to him so he can pursue it with his new urologist and oncologist. The more specific the beter. Thanks all.
I was diagnosed with small cell and 2 other types in bladder in May 04. My local urologists wanted to treat it with BCG but fortunately we were led immediately to get a second opinion at Sloan Kettering in NY. They did another biopsy and it was invasive but not in muscle so I had RC in July with neobladder. It had invaded the muscle between May and July but I am 5 years cancer free. I dd not have chemo before or after RC.I agree with others. Go quickly to major cancer center like Anderson or Sloan. Small cell is rare and very aggressive
Judy
My Husband, Lou was diagnosed with small cell and transitional cell bladder cancer in Sept. 04. Fortunately we got a second opinion with Dr. Robert Dreicer, Oncologist at the Cleveland Clinic. Lou immediately was treated with systemic aggressive chemo with cisplatin and etoposide. He was suppose to have six rounds but his platelet count was too low so he only completed five. He followed with radiation and never had bladder removal. He follows up with Dr. Jones his Urologist every six months but is now cancer free. He did have one reoccurence but it was the transitional cell which they treated with tumor removal and BDG. Small cell is rare and aggressive but I am happy to tell you that people to beat this dreaded disease. I agree your father needs to be at a big center hospital where they have the top docs. If you want other info, let me know. Lou is now 64 yrs old and working everyday. Even during his chemo he did very well and did not miss work. Lots of prayers also help so I'll keep your father in mine.
My dad also has small cell bladder cancer and it has metastized to the liver. I have received a lot of good leads on where to get help for my dad. He was diagnosed in February 2009, but they didn't initially say it was small cell. He went on gemzar and cisplastin for 3 months and was supposed to get his bladder out this summer. He had scans in June and that is when they found out that the chemo did nothing and it was now in the liver. He received the small cell dx at this time. He went on ICE & etoposide for 2 cycles and we found out again 2 weeks ago that the tumors are still the same. This cancer is so rare and extremely aggressive. My dad is 53 and we refuse to give up. He keeps saying he believes he is going to be a miracle. We have contacted Dr. Garcia from Cleveland Clinic and are just waiting to get a phone call back. We are trying to get in touch with doctors at MD Anderson as well. My dad's oncologist here in Greenville, SC is supposed to talk with them and come up with a new treatment for him. My dad does not want to travel to the big hospitals and be away from home....so we are hoping that something will work out. Best of luck to your dad and you and your family are not alone in this fight.
Dear Browns-Crossing,
My dad was diagnosed with small cell bladder cancer August 27th. He starts chemo on September 14th. We went to his 1st visit with Oncologist this past Friday. Unfortunately the Oncologist wants scans ans tests and a port put in before he starts chemo. So that is why we have to wait 7 more days for chemo.
Is this too long to wait? I feel like we moving forward somewhat quickly.
But, I worry so much with each day that he hasn't started treatment. The plan is 3-4 rounds of chemo (carboplatin and VP-16). Then if his kidney function improves (cisplatin and VP-16). If all goes well with chemo and the small cell is somehow still miraculousy confined to the bladder, he will have his bladder removed.
I wish it were the 14th now. Also, my thoughts are with you as you fight this battle.
The Oncologist and Urologist recognize how important it is to move quickly, they are dong the best they can. But, I wish he didn't have to wait another week.
His Primary has him on Ambien and hydromorphone 2mg for pain and so he can get some sleep. He says that he has to get up and use the bathroom multiple times throughout the night.
To all of you out there who are diagnosed with small cell,
It IS extremely important to start treatment right away. It seems like the overall treatment for small cell is chemo, then bladder removal, then more chemo if it comes back someplace else.
So, do not wait. Press for an appointment ASAP. The 1st Urologst that my dad saw was completely thrown for a loop with the small cell and didn't know what to do once diagnosed, he told my dad to see a Urologist who specializes in bladder cancer. He mentioned John's Hopkins but told us it would take several weeks for an appointment. I got that appointment 4 days later and did not wait several weeks. Imagine if we would have waited - unthinkable. Also, get an Oncologist as soon as possible too.
I don't yet know how much hope there is for surviving this disease. But, where there is some rate of survival, we are going to fight.
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