The first 4 months part 1

16 years 9 months ago #6263 by Patricia
Replied by Patricia on topic The first 4 months part 1
Rosie...just curious how you have learned that these highly regarded cancer hospitals and university affliated cancer medical centers are very slow to change their protocol. Are you in constant contact with them ... or do you just regard European Guidlines as the Gold Standard to all treatment?...How do you have such knowledgable hearsay from urologists at these highly regarded centers? Wow i wish i had your pipeline.
Mitomycin has been around a long time.......it has a wide range of side effects.....it doesn't stop cancer any better than BCG...it can delay it...but it doesn't stop it. .
So where should we go?.....Italy, France, United Kingdom?? What governs their guidelines? Pat
The topic has been locked.
16 years 9 months ago #6256 by Rosie
Replied by Rosie on topic The first 4 months part 1
Pat in reference to your statement about Mitomycin and MSK "This is a hospital that sees more bladder cancer patients than anyone...i think i would probably think they were up to date on the subject...........".

I have learned that although these highly regarded cancer hospitals and university affiliated cancer medical centers are reputable they are very slow to change their protocol. I suspect that is the case with Mitomycin. I have heard many urologists affiliated with these type centers say they would like to do this or that or have this that but it is not in the hospitals protocol and guidelines. For instance, fulgeration at cystoscopy, or having a monitor and camera on the cystscopy for the patient to observe. Or they have to follow the Medicare guidlines even though the patient is not on Medicare themselves. There is much more to medical care and treatment than meets the eye intially when going to these state run and overseen institutions. Rosie Ambs
The topic has been locked.
16 years 9 months ago #6254 by Patricia
Replied by Patricia on topic The first 4 months part 1
Yosarian...i recently contacted MSK about the use of Mitomycin C in relation to first TURBS...this is their reply.
"We rarely use Mitomycin after the first TUR because you do not know the
pathology and it can cause peritonitis with a deep TUR. We do not have a
protocol for it. We occasionally use it for people with recurrent low
grade tumors that we fulgurate in the office."
apparently they do still use the drug at the discretion of the physician but it is not in their protocal for first time use.
This is a hospital that sees more bladder cancer patients than anyone...i think i would probably think they were up to date on the subject...........Pat
The topic has been locked.
16 years 9 months ago #6253 by Rosie
Replied by Rosie on topic The first 4 months part 1
Yosarian, in answer to your questions "A few questions for you (and others)--- Do you ever visit Dr. Lamms' site and take his recommendation concerning oncovite vitamins?" I took Oncovite for a couple months but then went to a Centrum multiple vitamin after that. I did take maitake D fraction for it's stated therapeutic affects with BCG. and it's reduction of side effects. I had very little problem with BCG as long as I drank lots of water afterward.

What was your regimen of BCG treatments after the first 6? After my first Tice BCG's I was scoped three months later. No recurrence. Three months later a red spot. Had 3 more BCG treatments and it was gone at next 3 month scope. Three months later two spots. Had TURB but pathology report said "one spot fell apart when touched by an instrument," The other spot too small to send to pathology. All the pre-op tests, the anethetic, the time and cost yet nothing was revealed by the TURB except, I learned to not to have TURB's so quickly. To add insult to injury, I was sent home from that TURB with a catheter for a week. I was upset about that. I then went through 3 month check ups and 3 weekly treatments of BCG to an accumulated amount of 21 BCG treatments in 2 1/2 years because the original diagnosis of my 4 cm tumor was a "possible' T1a grade 2. My doctor also kept referring to possible bladder removal. By the 2nd recurrence, my husband and I had planned a move out of Texas to Virginia. Although Texas urologist wanted me to have the "growth" removed immediately and stated I needed an IVP to check to see if there were any kidney or ureter cancer I delayed it until I could get in to see my new and highly recommended urologist in Virginia. Talk about scared and traumatized. I waited 9 months and had the TURB done with my new urologist. The pathology report on that third recurrences stated it as a Papillary TA grade 2. I had an IVP done and it showed clear in my kidneys and ureter. What a relief that was. WOOOOEEEE. That doctor also told me that my type and grade of cancer was very low grade and there was little chance of it invading or progressing. I went two years seeing the urologist and getting scoped every 3 to 5 months without recurrence. Then a 3rd recurrence. I did the newest recommended monitoring and watchful waiting for my type, grade and history and then gave in to the pressure to have another TURB from family, friends and others with bladder cancer.. Pathology TA grade 1 and 2. No BCG was given nor recommended once it was established that I had papillary TA grade 1 and 2. I never did have any instillation of Mitomycin or other chemical after TURB the reasons I was given is because it is too low grade to risk a chemical reaction. That has now been revisited with my newest urologist. 5 months after my last TURB, February of 2006 a 2 mm growth was seen. Notice I said 2 millimeters not centimeters. We have been doing watchful waiting on it since that time through regular scopes and urine cytology tests. In that length of time the papillary has gone from 2mm, to 4mm, to, 6mm to 8 mm. I had a cysto in May and it is not yet at even 1 cm. This doesn't relate to you completely because you have a different grade but I have a suspicion that those with the higher grades that were given Mitomycin right after TURB may have been given the right treatment to ward of recurrence. I was glad to read your Florida doctor instilled it in you after your TURB.
Rosie Ambs
The topic has been locked.
16 years 9 months ago #6251 by Yosarian
Replied by Yosarian on topic The first 4 months part 1
Hi Rosemary, Patricia, Rosie,

Wow-my “mini tome” is already paying dividends..it is SOOOOO NICE to meet all of you, especially people with so many personal similarities and / or similar experiences. Thank you all so much for your kind replies..Hell I’m feeling better already! I am also very thrilled for you Rosemary (and indirectly for me) that you have not had any recurrences and of course I hope both you Patricia and you Rosie you are faring very well. I can’t believe you were nice enough to read my long chronicle of BC events!

I too am concerned with the lesions on my liver but Dr. Herr at MSK just kind of laughed them off and told me not to worry as they very probably were just cysts that are very common in men my age. My regular MD didn’t seem concerned either although my Florida urologist said perhaps later it should be looked at. This is the exact same reaction I got after my 2nd cat scan in NYC with similar marks on my lungs. The impression I get from all of my Doctors is that the pathologists that read the slides, x-rays, etc. include every possibility in a CYA move against lawsuits.

Mt concerns about my liver and lung “irregularities” are why I was so pleased to get your opinions Patricia on MSK and Dr. Herr—I think “curmudgeon” is a perfect description but I certainly agreed about his skills and qualifications. Your endorsement of him and MSK was very reassuring, as were your comments about the scars on your lungs, liver etc.

Thanks Patricia also for the info on protocol at MSK...I’m not sure why they don’t use
Mytomycin C there and I’m not sure about what gemcitabine is. I am pleased though that I got the Mytomycin C here at Florida first-the more C killers the better I guess /hope.


I can’t say all my worries about these “cysts” or whatever are over as from the recent past experience leading up to my BC diagnosis I was told every step of the way “not to worry” as most of the time it’s a “false positive”, “a misreading”, “a problem with the ultra sound angle” yada,yada,yada,. But as I said I was most relieved when Dr. Herr seemed so unconcerned and Patricia concurred in her high opinion of him.. I am not sure what to do next...perhaps after I complete my last BCG treatment and go back to MSK and maybe? have another Cat Scan ..then if I’m lucky I might get a minute or two to ask Dr. H more about it.

Rosemary, thanks also for the epidural info, I will have to check into it although the anti nausea pills did help last time ...perhaps if I took them sooner?

Rosie, wow 7years! How are you? Thanks for relaying your “bad nurse” catheter experiences...I have had remarkably similar experiences—to the point of twice having the urologist do it. Of the 5 times so far I have had BCG ,,the first nurse was very painful, the second was terrific, the third was awful and had to have the Dr. do it, the fourth time the Dr. did it again after the nurse couldn’t, and the 5th (last), the nurse who did it 2nd did it again with no pain. The best nurse was better at this than the Dr. but he was much better than the worst nurse! And I agree with you about my Florida Dr. feeling he is playing second fiddle and I try to be sensitive to his feelings but I’m not sure what else to do.

A few questions for you (and others)--- Do you ever visit Dr. Lamms' site and take his recommendation concerning oncovite vitamins? (4 per day). Neither Dr. H nor Dr. S in Florida mentioned them but Dr. Lamms website published some very impressive positive statistics about BCG and oncovite but as I said when I asked my Florida urologist during my 5 th BCG treatment he said he had read some studies on it and was “not opposed” to any of his patients taking them.

What was your regimen of BCG treatments after the first 6? Getting scoped and or a biopsy how long after completing the first 6? What was your BCG schedule next?

Thanks my new BC friends,
Yosarian


The topic has been locked.
16 years 9 months ago #6248 by Rosie
Replied by Rosie on topic The first 4 months part 1
Hello Yosarian, I read with great interest and identified completely with your concerns and feelings in your bladder cancer story. You are certainly a great example of getting the correct written information, researching, asking the right questions and getting second opinions. I do recall so many of the incidences regarding the doctor not being in when you had an appointment, some of the less than perfect cleanly settings, delays, and the trauma etc in my initial and now my 7 year journey on this bladder cancer adventure. It certainly does make a difference in the skill of those preparing and inserting the catheter for inspection and BCG. One nurse who inserted my catheter for BCG gave me so much pain that I complained to the doctor that I did not want her to do it again. After that, the skillful nurse gave me the treatment. One day, while I was laying on the table, in walked the painful nurse ready to insert the catheter. I did not stay mute. I said "sorry, but I need someone else to insert the catheter as your insertion is too painful." She apologized left and the skillful nurse came in. It was written on my chart to have "skillful" nurse with each visit. I too had never been sick prior to being diagnosed with cancer. To this day, when I am asked all the qualifying questions like any cholesterol, diabetes, high blood pressure etc.? Under 200 and my HDL is 84, my blood pressure is 115/68, my glucose 90 , When the doctor or nurse reviews those stats I hear them say "Wow, you are really healthy." I answer "yes, I just have recurring bladder cancer." It sounds like your local Florida doctor is doing the most modern protocol by instilling Mitomycin right after TURB. I can understand that the Florida urologist does not want to play second fiddle to another urologist no matter how great the reputation. None of us would like that in our own business. My best to you! Rosie Ambs
The topic has been locked.
Moderators: Cynthiaeddieksara.anne