Usually 2 TURBT’s are done for staging. The first one is to clean everything out and the second for tissue samples used for staging. Most imaging will only catch bigger masses, cancer cells that stray away from the main tumor are missed and they are the ones to worry about. Under staging is a big problem as TURBT’s only gives a small picture of what the cancer is doing. There will probably be another TURBT for final staging as it sounds like your husband has only had one done so far.
Dr Wilson’s staff is pretty efficient getting the information she will need, so don’t worry about that if you gave them all the doctors your husband has seen. Your in the same position I was in for the most part, I was looking for the best of the best. My local doctor here in Northern Colorado gave me a list of people to contact and he let them know I would be contacting them. On a positive note, the people I spoke with at USC Norris recommended Dr Wilson and thought highly of her. Either way with MD Anderson or CU/Dr Wilson is a win win with both being state of the art facilities with exceptional doctors.
I think the biggest decision for you will be traveling for treatment. Stay on top of things and take notes while at the doctors. All this is very treatable if caught early so maybe push a little. Go and see Dr Wilson on Monday for sure and see what she would recommend. If you have any questions she is very good about answering them, and she keeps it at a level that you can understand.
5.24.10 Final staging T2G3 7.28.10 Started Gemcitabine, Cisplatin neoadjunctive chemotherapy
11.2.10 RC with NEO 11.18.11 First year CT shows possible liver tumor
12.8.11 Confirmation of TCC BC mets to the liver 6.27.12 Final round of Dose Dense MVAC
7.26.12 Final scans showed no tumor or no...
Yep thats the culprit.
The literature on cutaneous reactions to intravesical instillation of the antitumor antibiotic mitomycin is reviewed to assess their frequency and nature. Up to 9 percent of patients who receive mitomycin for treatment or prophylaxis of superficial bladder cancer develop cutaneous side effects. Patients may have vesicular dermatitis of the hands and feet and/or dermatitis of the genitals or more widespread eruptions. Probably most, if not all, skin reactions are caused by contact allergy (delayed hypersensitivity, type IV allergy). The distribution pattern of the skin reactions is suggestive of systemic allergic contact dermatitis due to the absorption of mitomycin from the bladder mucosa. And he should not get this drug again.
your uro should be called and he can prescribe a medicine for it.
And yes i know Dr. Seth Lerner. He is excellent. I don't know if he has the multidisciplinary team but someone else here might know.
Thanks Pat. Have you heard of a Dr. Seth Lerner at Baylor in Houston? Years ago, someone from my hometown gave my sister his information saying he was great and a leader in his field and all. I have kept that card all this time and kept running into it in my address book. The gentleman who gave it to my sister was older and has since passed on(although not from bladder cancer!). Anyway- curious if you have heard of him in case we end up at MD Anderson.
I don't know what my husband would say if they want to re-TURB.. I will share your post though, because it sounds like it was a really good thing they did with you.
My husband has developed a rash on his trunk and abdomen- it doesn't itch and it is what I would call a fine rash rather than hives. I'm assuming this is from the Mitomycin since he hasn't taken any pain meds or the belladonna and opium suppositories since last Thursday.
Bambi...well doesn't sound weird to me...i had about 6 opinions!!
But the caveat is that after my first TURB locally my brain cells kicked in and i immediately scheduled with one of the, if not the top surgeon, Dr. Harry Herr, at MSK. I was able to get in 8 days later ..carried all my records and tissue samples with me. He took one look at them and said "Re-Turb" in 2 days.....now this was over 8 yrs ago when that was not the standard as it is now. I did a battery of tests the next day for them and underwent the re-TURB the next day. I had one small 1cm tumor that was lethal and into the muscle. Dr. Herr got all of it including the margins. And no pain and no catheter afterwards or any side effects. I then had some time to look into diversions. This had all happened so quickly i didn't even know what was out there much less how they worked. I saw Dr. Schoenberg at Hopkins, Dr. Stein at USC/Norris, Dr. Bihrle at Indiana Simon Cancer Center, Mass General and Dr. Shipley(that one was not for me)and Dr. Inderbir Gill at The Cleveland Clinic (he's now Head of all Urology at USC/Norris) I wanted an Indiana being female and Dr. Herr didn't agree with me........well heck its my body and i've made my decision and done my research. I ended up with Dr. Gill as he is the only person who could do it laparoscopically and well, i'm a diva, and i liked him and he was a top man in the field. So what i'm saying is you have some wiggle room to see other people if the tumor has been re-TURBed...not a lot..it should be done within 2 months.(I managed to see all of these people within 5 weeks) So if they suggest another TURB go with it...it will give you some peace of mind.
These guys gave me lots of perspective on surgeons and ya know what they all know one another and i've been picking their brains since with the exception of dear Dr. Stein who passed away after not being diagnosed with compartment syndrome in Florida.
You've done good Bambi!!
I really have to thank all of you so much. Here's what's happened today. My waking up at 4 AM was such a blessing because I saw all the posts and started into action mode rather than shock. My husband has an appointment for next Monday, the 2nd with Dr. Shandra Wilson. Her office has already received the faxed records from his Dr. in Boulder. He did have the surgery at the hospital under a general. We also have not ruled out MD Anderson. In fact, some other really good news is that our insurance would cover MD Anderson under our standard coverage (I think with some mention of depending on the treatment which didn't surprise me). I really did all this before the poor man even woke up- I wasn't sure what his reaction would be but thankfully he had progressed in his thinking to the action mode as well and he was very grateful. I had him read all your posts, then read Dr. Wilson's bio and at that point he said "we need to call her and see if we can get in" and I was able to say "you have an appointment next Monday and they are calling as we speak to get your records".
So here's what we are thinking at this point:
- see Dr. Wilson on Monday. I am hoping and assuming she may do some additional testing. It just seemed odd to me not to do a chest xray, full body CT or something, additional blood work, etc... If she agrees with the staging and grading (something I am still confused about...) and the treatment plan, then we would decide whether to drive down and do the BCG with her or not. If she thinks the staging and grading is understated (that is a concern to see your statistic there Pat!) and thinks he should skip the treatment and go right to the cystectomy, we would hear all the options. But I think then we would see ourselves on a plane to Houston to MD Anderson to see what they say. Does that make sense to you all? Of course, we both agreed that we wouldn't want to spend too much time on running around, particularly if Dr. Wilson would have a different opinion (which we would see as more bad news if she thinks it was understaged).
did your husband have his recent TURB in the hospital or her office? I'm unable to determine from your post. I mean it should have been done in a hospital and all tests, CT, Blood, and tissue samples if enough is viable and your pathology report is yours. You just need to call the various depts. and sign for them. They are your husbands. Everything is on a disc or electronically available quite quickly with the exception of the slides which takes a heads up for them to prepare and wrap them for you.
second opinion with cancer always advisable. As much as 50% understaged. I'm not saying that is the case but its a smart thing to do. I would not recommend anyone but Dr. Wilson.
(if staying in Colorado).
Lower pelvis CT was done on me, Chest x-ray, and blood work and a bone scan.