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Second Opinion - Where to Go

10 years 10 months ago #22940 by ladyjd
Well, we have an appointment at Duke University Hospital. The oncologist there specializes in bladder and prostate cancers. We won't go until mid-January, but just knowing/hoping that there will be a more supportive physician has raised my husband's spirits. Maybe we'll have a nice holiday, after all.

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10 years 10 months ago - 10 years 10 months ago #22844 by Patricia
This is a very narrow field of specialists...we're at the bottom of the food chain disease wise. As for Florida.......you would think they would have more in the geriatric field but they don't and just try to get them to accept your insurance. There is one doctor in Miami who is tops in the field of bladder cancer Dr. Mark Soloway
http://physearch.med.miami.edu/Profile.aspx?id=C00573872&AE=&PL=UMDC%20Department%20of%20Urology,%20UMDC%20Department%20of%20Urology,%20UMDC%20Department%20of%20Urology

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10 years 10 months ago #22843 by balihigh
You are right that bladder cancer seems to be at the bottom of interest list. I live in western NC and went to Sloan Kettering because they were one of the best. John Hopkins as mentioned is now #1. I think you do need to go to a major facility for the second opinion. Yes, they can work with local doctors for chemo if that is needed. They told me at Sloan that I could have it done locally but fortunately I didn't need it. I have 2 kitties that traveled with me and my husband to New York when I had my surgery. We have a small motor home and stayed in it for over a month. The point is that getting the best treatment for your husband is paramount now and the details can be worked out. I'm a country girl and didn't like going to the Big Apple but I am so happy I did.
Take care,
Nancy

female 60
1/08 dx 4 tumors TURB
T1 G3
12 BCG + interferon
5/08 another tumor/TURB
9/08 RC illieal conduit

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10 years 10 months ago #22841 by ladyjd
I think that you are right and I am getting too far ahead of myself in thinking all the 'what if's' should be answered right away. We are absolutely committed to getting that second opinion and will begin our hunt for that today.

By chance, we went to a holiday party on Saturday night and one of the guests was a researcher in the field of chemotherapeutic drugs. He has connections to a highly-regarded specialist at Sloan-Kettering and promised to call him to get recommendations for a doctor in either Charlottesville, Virginia, or North Carolina. I think this would be a good start.

Meanwhile, my husband's 77th birthday is today, but any celebration is dimmed by his depression about his condition. He was always a worrier, but those concerns usually disappeared or were pretty inconsequential. Now THIS is a real scare and he isn't doing so well thinking about it. That visit with the oncologist didn't help any either.

One of our friends lost her husband to bladder cancer recently. They used to go to Florida for the winter, and she remarked how much better the doctors were in Florida, because they were used to dealing with senior citizens. I've googled geriatric oncology and am dismayed that there is so little interest in the topic. If age is one predictor of bladder cancer, then we baby boomers ought to have someone out there for US when the diagnosis is made.

Anyway, here's to Cole's birthday and our new circle of friends at this website!

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10 years 10 months ago #22817 by eddiek
Hello Judy,

As everyone has already said, welcome to the site, but wish the circumstances were different! I'm Cynthia's husband and here are my thoughts on chemotherapy treatments:

> When Cynthia was being treated at MA General in Boston, we would travel down the night before chemotherapy and stay in a hotel at the edge of the MGH campus.

> During Cynthia's chemotherapy, I would check out of the hotel, pack the car, and wait for her to finish her treatment.

> Then we'd make the almost three hour trip back to our home in the western part of the state; actually MA is a commonwealth like VA.

> A great majority of chemotherapy is done on an outpatient basis, unless there is a medical need for a hospital stay.

> Cynthia's schedule was two weeks of chemotherapy and then one week without treatment. On the "off" weeks, we would make a day trip for lab tests and an appointment with the oncologist's nurse practitioner.

> We also have spoiled pets, but if you have a schedule for treatment, just make boarding arrangements well in advance. You can always cancel a reservation if your schedule needs to be revised.

I agree with Pat, don't put the cart before the horse. Lodging, transportation, and pet care can be planned and handled. Cynthia just reminded me that many larger facilities have individuals that can help with lodging arrangements. Some lodging facilities will also allow the pets to stay with their families.

But again, first things first, get another opinion, see if an oncologist close to your home will join the "team", and if not, consider seeking treatment at a larger facility.

One more thing to consider, if you like on-line real-time "chats", we have a regular one scheduled every Sunday evening at 8:00 p.m. (ET). It's a good opportunity to ask questions of other survivors and caregivers with immediate responses.

Please keep us posted on your husband's progress!


Ed K.

Edward J. Kinsella
American Bladder Cancer Society
Board of Directors - Secretary/Clerk

& Caregiver

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10 years 10 months ago #22815 by Patricia
Judy..the most important thing to do first...get the second opinion...the oncologists recommendations may or may not vary but chances are that whatever protocol they recommend could be done near your home at a facility equiped to handle that protocol. When my son got testicular cancer he went to the top facility at Indiana University where they came up with the cure for testicular cancer and they put him in touch with a top oncologist here in our city and they also gave him the exact protocol that should be followed. You really need to be your own advocate with these things...they do make mistakes so you question every med that is given . If you feel more comfortable being near the larger facility you will probably have to make some arrangements....but don't let the cart get before the horse. Set up the second or even third opinions first. Everyones experience with chemo is a bit different and you certainly want to have someone who is very experienced to handle any problems that may arise whether it be blood related, nausea, or renal problems. My son had a direct link with the team at Indiana whenever there was a problem and they worked in coordination with the team here.
Pat

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