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13 years 3 months ago #4059 by Ray_O
I too am a patient of Dr. Schoenberg. I have to agree, his whole team..his nurse Charlene, and his resident Trinity have been nothing but the best. Anyone who is in traveling distance of Johns Hopkins should consider seeing him. He is not only tops in his field, his is also comforting, informative, patient, and, at times, humorous. Trinity is also a gem..he takes the time to get to know you, he answers all your questions, and he is the most encouraging, compassionate, good-natured doctor I have ever come in contact with. I couldn't be happier with my treatment.

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13 years 3 months ago #4047 by Patricia
Hi Dixie....Gee we went to the same docs!!...I started with Mem Sloan...talked with Dr. Shoenberg ...saw John Stein...and even Mass Gen on their bladder sparing protocal...and Indiana Med Center (who invented the Indiana Pouch). They were all wonderful ,, caring doctors and i wouldn't have gone wrong with any of them. I initially thought i wanted the neo-bladder but after much research i decided it wasn't for me....the prospect of cathing where i couldn't see plus my sensitivity in the area.......anyway i have the Indiana Pouch and my stoma is right at my naval and you really wouldn't know i had anything done today....all scars gone and flat stomach so visually its not an eyesore.
I wish everyone would do the research you did....Congratulations........Pat

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13 years 3 months ago #4039 by wendy
Hi Dixie,

It's great to meet you, and thank you for offering your hard-earned wisdom and experience. It's funny, the path you took, the names you mention (and even the one you hint at) is very familiar to me. I've been active in the blc community for 8 yrs, on behalf of my sister. She goes to Sloan and is quite well.

I've seen Dr. Bajorin speak at a conference in Padova about neo-adjuvant chemo in '05, and Dr. Schoenberg is an advisor to this site and group. Small planet, eh?

You mentioned Dr. Stein as well, another excellent surgeon for American women seeking neobladder surgery. He and the team at USC are brilliant. It's actually a small community of experts in this field of uro-oncology. The money is in...prostate cancer, but as a medical professional you probably know that. So we should cherish the few that specialize in bladder cancer.

Congratulations on that path report, no nodes is good nodes (just made that up). I think you meant that you had your surgery in May '06 and not '07? Just a guess...

I sent out a request to our discussion group, about the question you posed elsewhere on the forum about fistulas. I hope to receive a reply and when and if I do I'll forward you the contact. Or perhaps someone reading the forum will respond with info, I hope so.

I'm glad you were able to get the surgery you preferred. Also happy to see the amount of women that are actively pursuing the options. Or better said, "pro-actively"...

All the best,

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13 years 3 months ago #4038 by Dixie
I am a 49 yr. old female with BC. I was diagnosed in Sept. of 2005, with a cystoscope. The Dr. at that hospital (Lehigh Valley) told me he removed what he could of the tumor from my bladder but that it had gone through the bladder wall and was blocking my R ureter and I needed my bladder removed with a total hysterectomy.  He told me about the three diversions that were available but told me I was not a candidate for the neobladder.  He wanted to do the surgery the next week by giving me a stoma on my side, and then I would have to cath myself every four hours for the rest of my life, followed by chemo.  I told him I needed a second opinion due to the type of major surgery he was talking about.  So my journey began.
I think having some medical background helped me out a lot. I was a nurse and respiratory therapist but didn't practice any more. I knew I had the option to look else wear but didn't want to waste a lot of time.  I knew time was important.  I will try to keep this short because it is a very long story.  
As soon as I got home I started calling hospitals to be seen.  My first choice was Sloan Kettering in New York City which I live about 1 1/2 hrs. from.  They are one of the top Cancer hospitals in my area.  I really liked the oncologist their Dr. Bajorin.  He wanted to give me chemo before surgery to shrink the tumor and make the surgery less invasive.  Made sense to me.  Then he sent me to one of his surgeons who I didn't really care for.  She scared me to death with the explanation of the surgery.  She also said I was not a candidate for the neobladder which I really wanted.  I wanted to try to stay as normal as possible after surgery if I could.  So I started chemo the next week at my local hospital working with Dr. Bajorin at Sloan Kettering.  He just gave my local Dr. the recipe for the chemo.  I took Cisplatin and Gemcitabin for almost four months.  In the mean time I kept looking for my surgeon and trying to find out if it was possible to have a neobladder done.
I visited three other hospitals and found two surgeons that agreed that I probably could have a neobladder depending if my urethra was cancer free.  I found out later that at some of the hospitals I visited they just didn't know how to perform the neobladders or didn't feel comfortable performing them; it wasn't that I wasn't a candidate.  I was even thinking about flying to California to see Dr. Stein if I couldn't find any surgeon on the East coast to perform a neobladder.  I have done a lot of research with the three different diversions.  The neobladders in women aren't 100% perfected yet.  You take about a 40% chance of leaking or having to cath yourself in the normal place for the rest of your life.  But, I still wanted to try it.  I am a pretty active person and plus I didn't know if I could cope or my husband could with me having a stoma or bag.  I guess I am sort of vane, but everyone is different.
So, anyway I found my surgeon at Johns Hopkins, Dr. Schoenberg who I would highly recommend.  He also has such a wonderful nurse Charlene that helped me all the way. So, I had my surgery on May 25, 2006.  I am not sorry I got my neobladder, even if I am having some problems with leaking I have faith that it will work.  I still don't have a stoma.  
I had hydronephrosis of my R kidney but I had no stent put in.  Dr. Schoenberg mentioned it but never did it.  My tumor was around 4cm when I started chemo and when I finished it was smaller then 2cm.  I really responded well from the chemo.  I guess all my blood work was ok with my kidney functions so they didn't do the stent also my tumor had gotten so much smaller.  I remember Dr. Schoenberg saying he hoped after the surgery my kidney would start to come back and it did.  I don't know how much but my MRI's (I can't do CAT Scans because I am allergic to the dye) shows no hydronephrosis.  Oh, by the way I was told in the beginning I was probably a T2 or T3.  Well, after all done with the surgery and I got all my path reports back I am a Stage 3 T4aNO.  I feel like I had a miracle happen that it didn't go into my lymph nodes thank God.  Don't give up it will get better and life does get back to normal.  If anyone has other question please ask.

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