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Mom New Dx, pre-TUR, unstaged. Are we choosing the right care?

2 months 4 weeks ago #57398 by Kimdd
Thank you Alan for the reassurance.

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2 months 4 weeks ago - 2 months 4 weeks ago #57397 by Alan
You should do fine at UCLA. Somewhere, maybe a few years back on these threads I remember Dr. Chanie's name come up and it was all good. Just bring your file/tests (it is your property) and if more tests are needed I am sure that DR. Chanie will do those and it becomes a second opinion.. The tests are pretty clear there is a mass but, until a TURB and pathology you really won't know much. It is simply taking one day at a time. Adding it also appears your Mom has spoken her preference! She will be fine. This is treatable and beatable. Keep us posted as you go. We all learn from each other!

DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.
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2 months 4 weeks ago - 2 months 4 weeks ago #57395 by Kimdd
Mother is preferring to stay close to home, which for us is Southern California, so UCLA is convenient. I am worried that prioritizing convenience might get her into less than optimal care. I think she will want Dr Chamie at UCLA to do the TURB. Is it important to get a second opinion if your first opinion is already at a concentrated BC program? and at what point is a second opinion helpful? Before the TURB or after? I still don’t know a lot about at what point there are treatment or diagnostic options.

Thanks to both who answered so quickly. It sounds like you both, SarahAnne and Alan, feel the ultimate goal is a facility/provider who sees a LOT of BC as opposed to other genito-uro issues, and not so much a facility’s particular designation. Indeed UCLA has specialists who are specifically (though not exclusively) on the BC program roster of urologists.

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2 months 4 weeks ago - 2 months 4 weeks ago #57394 by Alan
Kim,

Welcome. 1st, you are asking the right questions. also, pat yourself on the back as a caregiver because all diseases have better results with family/friends making a team!

The first part of your thread! You have had the most important tests as a start: cystoscopy, CT scan and to a lesser extent ultrasound are the gold standard of tests. You still won't know much until the TURB is done and pathology reads it.

I have read good things on Dr. Chamie. And, UCLA does have a good reputation. People that compile lists also have their viewpoints and agendas! You just want one that sees a lot of bladder cancer as opposed to prostatic groups. UCLA I believe has a specialized group for bladder. Here is a list: https://health.usnews.com/best-hospitals/rankings/cancer. Like Sara Anne I do like University settings and teaching hospitals. They are usually are on the cutting edge of things!

IF you are encouraging MD Anderson and it is more convenient, it is my backup and does rank #1 on this list plus I live in Texas. I have firsthand accounts from 3 people I know well that will vouch for them. UCLA, MD ANDERSON or another big group will serve as a second opinion as they will probably either repeat some of the tests or the TURB will give you confirmation.

DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.
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2 months 4 weeks ago #57392 by sara.anne
You want a urology department and a urologist with a lot of expertise in bladder cancer. Some NCI designated centers have this and some not so much. I would think that UCLA would be a very good place for your mother to be treated. My criteria are a little different from some in that I feel that a medical school environment is exactly what I would be looking for.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
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2 months 4 weeks ago #57391 by Kimdd
My mother was diagnosed at a community urology practice based on ultrasound, cystoscope, and CT scan. Mass is about 4.8 x 3.5 x 2.5 and seems localized, no disease in upper tract, no lymphadenopathy, etc. and that’s about all we know at this point. Thank goodness Mom agreed to seek care at a better facility rather than stay in the community setting. I advocated for her to visit MD Anderson in TX, but she read an article by a doctor and decided she only wanted to see him. Dr. Chamie at UCLA, which has a BC program and Dr Chamie seems very well qualified, though not nearly as experienced as the department chair, Dr Litwin. I just found out UCLA is not listed as a NCI-designated cancer center. I’m worried we haven’t actually landed on a top-notch facility after all.

Can anyone speak to this? Also she seems to have lost interest in any second opinions. Does it matter very much at this point? Am I overreacting to keep pushing her to start arranging a second opinion from a NCI-designated cancer center?

When members on the forum refer to “cancer centers,” do they mean NCI-designated cancer centers or just any major hospital with a cancer program? I am confused about what to look for, but I understand where you get evaluated and first treated sets the trajectory of the entire illness.

Thanks to all for participating and sharing your stories and knowledge here.

—Kim

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