My dad who is 53 years old was diagnosed in February 2009 with bladder cancer. The doctors (at Duke) recommended he do chemo first then he would have his bladder removed. They said "oh everything is great; if you have cancer this is the kind to have". He started with Cysplastin and Gemzar chemotherapy in March. In June he had a scan and it came back that the chemo did nothing, new tumors had grown in the bladder and now has spread to the liver. They told my dad that he now has small cell bladder cancer. All of this doesn't make any sense!! He now has a new diagnosis of small cell bladder cancer that has metastasized to the liver. He refuses to go back to Duke because the oncologists basically said "this cancer will kill you, but we can keep you going for a little while longer". He had to have his bladder scraped in July and stints put in because the tumors were blocking the kidneys. He has been in so much pain and not able to work anymore. He started new chemo (ICE & etoposide) in July. He did 2 cycles and last week we found out that the tumors did not shrink, but also has not spread anywhere else. He meets with his other oncologists here in Greenville, SC tomorrow to see what he recommends next.
My sister, mom, and I feel so helpless. We have done a lot of research and know that small cell is just really bad and not too much is known about it. We are trying to encourage him to go to MD Anderson, but he just doesn't know if he can make the trip and doesn't want to be away from home.
I have tried to find discussion threads on here about small cell bladder cancer, but maybe I'm just not looking in the right place. We just want to find success stories to give us some hope because we are trying to stay positive, but these past 8 months have been a nightmare!!!!
Any help is appreciated; we do not know what to do!!
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Small cell bladder cancer that has metastasized to the liver...
- By thedanusc
- Posted August 17, 2009 at 1:05 pm · 9 replies
- In Metastatic bladder cancer
- Shared with the public
Explore topics in this discussion:
Cancer Surgery Chemotherapy Pain Small cell bladder cancer Lung cancer Bladder cancer
9 replies
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- By jj803
- Posted August 17, 2009 at 1:11 pm
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Hi,
I am glad that you started a discussion on this and hope our small cell survivors will respond in the near future. I'm not sure that there has been a thread devoted to small cell, but there have been responses to that disease. I do recall that these survivors had favorable responses to the treatments that were pursued and that one later had a second primary "bladder" cancer (the more common transitional cell or urothelial type). Although I feel certain that other primary sites for the small cell metastasis to the liver have been considered by his physicians, that would also be a possibility. Numerous "solid" organs have small cell variants with the most common primary site being lung. I do not know if they are all treated in the same way or not. Best wishes,
JJ
- By balihigh
- Posted August 17, 2009 at 1:22 pm
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I would HIGHLY recommend that you go to a major cancer center that specializes in bladder cancer. MD Anderson is a great choice along with Sloan Kettering in NYC (I went there from NC), Cleveland Clinic and John Hopkins in Baltimore. JJ went to Vanderbilt in Nashville. There are major cancer centers all across the US but not all of them are aggressive with bladder cancer as you found out at Duke. I do wish you the very best.
Nancy
- By roadrunner
- Posted August 17, 2009 at 1:42 pm
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Welcome to inspire,
I am really sorry to hear about your dads diagnosis of small cell cancer.......
This is a coincidence for sure,,,,we talk to some patients facing surgery when asked to by our surgeon at the clinic,,,,,by chance we came in contact with a couple who were new to this whole ordeal as well,,,
Our friend is 64,diagnosis,small cell,,,had a second opinion at he cleveland clinic with Dr. Jorge Garcia,,,,oncologist with the Clinics Taussing Cancer Institute,,,,I would recommend he make a trip to see Dr. Garcia,,,,,,I have his e-mail as well and will give it to you..........he speaks on a video ,if you look at journals there is one saying Clevelad Clinic video now available,watch it,and you will learn more...
our friends cancer is in his bladder and outside the bladder,not in the liver,,,he is recieving 18 sessions of the same chemo,,,if the chemo works he may have his bladder out.....its a waiting game right now.......
The Cleveland Clinic is not to far,,,,here is Dr. Garcias e-mail,,and he answers them too......
garciaj4@ccf.org
Taussing Cancer Institute
9500 Euclid Ave. R35
Cleveland Ohio 44195
1-216-444-7774
1-216-444-6833 appt.
I hope this helps, and the prayers I am sending as well,,,,small cell is a very aggressive cancer as you know,,,maybe a second opinion from Garcia as to if he is on the right chemo would help...
Ginger
- By Moonerj
- Posted August 17, 2009 at 4:27 pm
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Small-cell carcinoma - SCC is more commonly a malignancy of the bronchus, the cells take on endocrine-like characteristics. Primary small cell carcinomas of the bladder are rare and aggressive. Much of the new understanding about small cell bladder cancer came from reviewing treatment records of 88 patients with the disease treated at M. D. Anderson between 1985 and 2002, when expert researchers reported that patients who responded to neo-adjuvant chemotherapy, and were subsequently downstaged to stage pT2 or less, had a near 100% cure rate. Due to the rapid growth rate and the threat of understaging, there is clear evidence that neoadjuvant chemotherapy is important. Small cell bladder cancer has been shown to be highly responsive to chemotherapy; multi-therapy treatments are beneficial. 10
MD Anderson Cancer Center in Houston is conducting a clinical trial for small cell carcinoma of the bladder: Phase 2 Trial of Ifosfamide and Doxorubicin Alternating with VP-16 & Cisplatin for Small Cell Carcinoma of the Urothelium: This trial is for patients with a rare and aggressive variant of bladder cancer. Principal Investigator: Randall Millikan Protocol Number DM00-039
Page discussing the clincical trials at MDAnderson for small cell and urachal bladder cancer: Click here
http://blcwebcafe.org/raretypes.asp
- By Tag
- Posted August 17, 2009 at 5:41 pm
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Wow, I'm sorry to hear about the poor situation at Duke. Stories like your father's are scary. I hope you can get him to MDA, they seem to have a handle on this from what I've read. Better luck in the future going down this road.
Mike
- By Cheyenne
- Posted August 17, 2009 at 6:47 pm
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I think the best course of action, and the one I would take, is to get to a major cancer research treatment center. There are severa, as you live in Kentucky the Cleveland Clinic amy be closer, not sure. They plus Sloan Kettering, M.D. Anderson in Houston, Dana Farber in Mass. and some others deal with this all the time. I would go with M.D. Anderson, Sloan or Cleveland. This is serious and disappointing but it is not an impossible situation. I sure would not throw in the towel on this, there is an awful lot being done in this area. Ginger is a good resource and I think she is right about going to Cleveland. I would suggest you get on this right away. We will be here for you. You are in my prayers. Please keep us informed.
- By georgiaE
- Posted August 18, 2009 at 7:52 am
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Hi,
I am so sorry to hear about your dad. My husband has bladder cancer and had his bladder removed June 18, 09. He had a major bladder cancer surgery with a partial cysectomy last summer at Sloan Kettering. Ed's surgeon there dropped cancer cells in other areas and his surgeon here in Atlanta had to clean them up. He has to be checked frequently to make sure there are no remaining cells found. He also had chemo before this surgery and had complications and certainly wouldn't have felt like traveling elsewhere. Ed wanted to stay home this time , in Atlanta, and we found the most wonderful oncologist who is brilliant, caring, honest and we totally trust. You may want to make an appointment with him for your dad to get another opinion and possibly treatment here. Atlanta is not far from Greenville and it may be an option for him. His frame of mind is very important in his treatment and if he refuses to fly somewhere over and over again, this may help. Ed's oncologist is Dr. Assikis 404-350-9853. He is with Peachtree Hematology-Oncology Consultants, PC. He did his fellowship at MD Anderson and was chief teaching fellow there. I highly recommend him.
Good luck,
Candon
- By joybob
- Posted August 18, 2009 at 8:32 am
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I would go to one of the top centers and call immediately, at least get a second opinion from them. Cleveland and Sloan will do second opinions thru mail MD Anderson would not, we had to go there. It's worth the investment. Please do so. Joycee
- By browns-crossing
- Posted August 19, 2009 at 1:52 pm
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I am 50 yrs. old. Dx with small cell and transtional cell bladder cancer end of last Aug when I was 49. Had aggressive chemo first. Cisplatin and excuse me for for forgetting the other. It all happened fast. I know they treat this type of cancer like lung cancer, as the cancer is rare and very aggressive. My cancer went into the bladder muscle wall. I had 3 months of chemo, 3 days on, 2 wks off, then started it again. all my scans were negitive pre and post chemo. I had a radical cystectomy in Jan. 09 with a neo bladder placement. so far all my scans have been negitive. I have them every 3 months. Don't give up hope. Go to Anderson, get into a clinical trial if you can. You never know. You are young and in much better condition to fight this. Think about what you are fighting for? I thought of my husband, kids, and 2 little grand children. I was fighting for them, I was too young to die, I had too much to see and do. the treatment is hard, but saying good by is even harder. DON"T WAIT!!! Small cell is so aggressive you don't want to wait. I pushed my way though and started chemo 2 weeks after being diagnosised. I read every thing I could find about it. And believe me there's not much. Call, get an appt. and go now. Best of luck, let me know if you have any questions and how you made out.
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