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We saw Dr. Wilson yesterday!

8 years 2 months ago #37660 by Cynthia
How much bladder cancer a doctor or pathologist does directly relates in studies to outcome. Anderson does a great deal of both, pathology I was once told is as much art as science. Here is a link to have your slides sent to Anderson as a sanity check without having to go for an appointment.

http://pathology2.jhu.edu/bladder_cancer/consults.cfm

As for the doctor you use for BCG the same goes how much BCG they administer makes a big difference in comfort and adverse accidents that can occur. I

t is important to find someone you can interact with well that has a lot of knowledge about bladder cancer. We know it it is stressful trying to make sure you make the right choices and we are here for you.

The truth of the matter is that I was just at a symposium with the best minds in bladder cancer. And they did not always agree..... Some are more conservative than others or had a different perspective. Before my Radical Cystectomy I talked to three of the best in the country and went with the one I felt most confident with. Not the most scientific approach but it worked for me and in truth I could not have made a bad choice but I made the one that was right for me.

Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society

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8 years 2 months ago #37659 by Bambi
Well I have to admit that given what people have said on here that what she said surprised us. That said, I can't imagine that she would simply "tell us what we wanted to hear". First of all, I'm not really sure how she would have known that as we really let her speak first and then started asking questions. Secondly, that would really be unethical of her and what would be the purpose? I don't mean to sound short, but that just seems very unlikely to me. What do you think Bill as you have seen her yourself and I believe been treated there?
That said, I do feel better that she has the slides in her hands and will be looking at them for whatever purpose. If she sees something that alarms her or seems different than what she expected, I would anticipate that she would let us know that. We cancelled our MD Anderson appointment for the 11th, but they still have all the paperwork they requested. They were going to send for the slides themselves tomorrow. I spoke with our patient representative down there and let him know that if something else would come up (and I was thinking about her seeing the actual pathology slides) that we might be calling back. I am very impressed with how quickly everyone has managed to get us in for appointments, so if my husband needed to delay the BCG to go down to MD, we would certainly do it.

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8 years 2 months ago #37658 by Patricia
Well i'm actually a bit surprised that Dr. Wilson would make that recommendation considering she did not have the slides and only the path reports. An actual pathological look at the slides should determine the next step..whether it was understaged or if enough sample was actually taken.
Nice that she had a great personality but i wouldn't go with that criteria. And why did she not suggest a re-turb?
I think she said all the things you wanted to hear .
I would go for another opinion.
pat

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8 years 2 months ago - 8 years 2 months ago #37656 by Bambi
So yesterday my husband saw Dr. Shandra Wilson and wow- she is pretty amazing. I was blown away by her caring, kind manner and her obvious wealth of knowledge and her ability to think quickly and give us so much information. Lovely woman and Dr.! Thanks to those who recommended her to us.
She basically agreed with the urologist in Boulder that it would be appropriate to do the 6 weeks of BCG followed by a TURBT in late September. She was actually a little bit more inclined to then give the BCG one more chance and recheck in December before going with cystectomy. We were surprised, although pleased, to hear her say that. She did think that combining interferon with the BCG would make sense given his diagnosis. She is more than willing to work with the urologist in Boulder if my husband decides to have the treatments there. I was pushing for him to go down to Anschutz where she is for the treatments. He is mulling that over. In the meantime, I went to the hospital in Boulder this morning and picked up his actual pathology slides and delivered them down to Dr. Wilson's office. She said there was something she could do with staining them - to help determine if BCG is the best way to go...
My husband has been pretty miserable the past few days and seems to be having more fatigue and frequency of urination than he did a week ago. Dr. Wilson said that if that doesn't improve quite a bit, she would see that as a reason to delay his starting the BCG protocol until things "calm down". She gave him a prescription for Detrol and it has maybe helped him a little. He basically went to the bathroom every 15 minutes all night long night before last and during a lot of this morning. He also just feels very fatigued. No temp or anything. He also has had a pain in the kidney area and Dr. Wilson felt it was from some backing up of his urine into the ureters, given that one of his sites was right next to the bladder entrance of the ureter.
I think he was very discouraged the other night- who wouldn't be? The middle of the night, miserable, and really expecting to hear even worse news (in his eyes) the next day.
We also had an appointment email that came this morning for an appointment on the 11th with MD Anderson. Dr. Wilson is evidently involved in a study with one of the urologists there and also with one at Baylor (I think Dr. Lerner? we also had an appointment made with him). But at my husband's request, I called and cancelled those appointments as Dr. Wilson really felt they would also agree with this treatment for now and our plan all along was to go down there if she said something radically different than his original Dr. So right now, he's trying to feel better, deciding where to go for treatment...with Dr. Wilson's office or at Boulder Medical Center.
Bambi

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