Member Blogs

Did you have the appt on July 11?

And I would love to have your cookie recipe!

Did you have the appt on July 11?

Yes, I did have my appointment. Hard to say much about it since it was more of a meet and greet than anything else. He was friendly. He was young, which means he can take care of me well into old age... which I intend to reach. He was thorough. He wants me to have a CT Urogram to look at the entire urinary tract - a great idea considering my cytology was inconclusive even when I had the cancer and that's what we've been depending on to rule out upper tract disease. I'm sceduled for a full TURB on August 24. Once he's seen the stricture we can talk about treatment options. And he says, if I'm still cancer free it's time for annual cystoscopies.
 

And I would love to have your cookie recipe!

Which recipes? I have so many!  Some of my favorites are a bit involved but if you want to start with something simple, I'd recommend Texas Ranger Cookies.
2 cups flour
1 tsp. baking SODA
tsp. baking powder
1 cup shortening
1 cup sugar
1 cup brown sugar
2 eggs
1 tsp. vanilla
1 cup coconut
1 cup chopped pecans
Cream sugars and shortening.
Beat in eggs and vanilla.
Mix in flour, baking SODA and baking powder.
Mix in coconut and pecans.
Drop by tbsps. onto ungreased baking sheets.
Bake at 375 F for 10 minutes or until golden brown

My best sugar-free is sugar-free Rugelach.
Ingredients:
Dough
1 cup Margarine (2 sticks)
8 oz. package of Cream Cheese
3 cups flour
3 tsp. Vanilla Extract
Decoration
1 egg beaten with 1 tbsp. water
Granulated Splenda for sprinkling
Filling
1 cup Raisins - chopped
1 cup Walnuts - chopped
1 cup Granulated Spelnda
2-3 tbsp. Cinnamon
                Apricot All-Fruit

Directions:
To make the dough:
In the bowl of an electric mixer cream together the Margarine and Cream Cheese.
Blend in the Vanilla.
Mix in the flour.
Divide the dough into 4 equal portions. (~224 gm each)
Roll out each portion into a 10 - 12 inch circle 1/8 inch thick between 2 sheets of waxed paper.
Chill the dough.
              To make the filling:
Chop the walnuts in a food processor.
Add the raisins and chop again.
Add the granulated Splenda and cinnamon and chop again.
            To bake the rugelach:
Spread Apricot All-Fruit onto each circle of dough.
Sprinkle each circle with approximately cup of the chopped-nut-raisin-cinnamon mixture and press into the dough.
Cut each circle into 16 wedges using a pastry cutter or a pizza cutter (Cut like a pizza).
Roll each wedge from base to point.
Place point down on lightly greased or parchment lined baking sheets.
Brush each rugelach with the beaten egg glaze (egg and water) and sprinkle with Splenda.
Bake for 15 minutes at 375 F (or until golden).
Remove to racks to cool.

Warren...surely this isn't your first CT scan or CT urogram or even an IVP in 7 yrs?  And i know you're a doctor but i've never heard of 8 courses of Mitomycin in such a short period of time.
  Did you read the recent June l8th issue of NY Magazine and the article on What doctors talk about when you're not there?  Really gives you confidence doesn't it?  I especially liked it when they said l0% of the doctors are great....l0% are crap...and 80% mediocre.
  I think most of us have to do our own research these days...its kind of depressing.  My local uro who knows what a neobladder is and knows what an Indiana Pouch is but has never done one has told me i know more about bladder cancer than he does......well thats pretty scary.  And i actually had an incident after my surgery which was done 4 l/2 hrs away at The Cleveland Clinic where not one hospital here would admit me because they didn't know anything about my Indiana Pouch.  Luckily i made it to Cleveland..and none to soon...i had a bowel obstruction. 
  I hope all gets resolved on August 24th with the new uro.......Pat

Warren...surely this isn't your first CT scan or CT urogram or even an IVP in 7 yrs?   And i know you're a doctor but i've never heard of 8 courses of Mitomycin in such a short period of time.
  Did you read the recent June l8th issue of NY Magazine and the article on What doctors talk about when you're not there?  Really gives you confidence doesn't it?  I especially liked it when they said l0% of the doctors are great....l0% are crap...and 80% mediocre.
  I think most of us have to do our own research these days...its kind of depressing.  ...  I hope all gets resolved on August 24th with the new uro.......Pat

    Well Pat, it's like this. I had several abdominal and chest CT scans for 2 years after the Bladder Ca because I was still undergoing cancer surveillance for the Leydig cell tumor removed 10 months previously, but I never had any studies aimed at checking out the upper urinary tract. As a pediatrician, I didn't know anything about Bladder Ca, and I trusted my urologist... but I don't mean I had my head stuck in the sand. I spoke to my brother-in-law, a top notch oncologist at Harvard, and he put me in touch with a colleague of his, a urologicial oncologist who agreed to the 8 week course of mitomycin C instead of BCG. And I did lots of reading, but honestly, some of it scared the sh** out of me.
    I wanted more information about CIS, so I looked in medical texts. The text said it runs an "indolent" course. Hmmm. That sounded ominous! I didn't know that word, so I looked it up. The definition is "lazy" - derived from Latin roots that mean to "not give pain." That surely doesn't agree with the information presented on this forum. I wish I'd found this forum when I was first diagnosed and treated. You guys would have kicked me in the butt and made sure I got all the information I needed. The problem was, I didn't know what to ask. My brother-in-law said I'd be fine. My urologist told me he got it all, and I'd be fine. You have to be careful of medical advice from people who have an emotional connection with you. Everyone wanted me to be fine. And I have been for 6 years without a single recurrence, but how much of that is dumb luck.
    Now, I have a rip roaring cystitis - hematuria, pain, clots - with negative cultures. Very similar to what I had 8 months ago which I thought was from my urethral stricture - but honestly, I don't know. I'm eating Pyridum, ibuprofen, and Urised like it's going out of style. I have to be able to get to work. And wouldn't you know, my partner's away on vacation! I have an appointment with the urologist tomorrow in his office. I took the afternoon off to go, but still have to be back for evening hours. I'm hoping he'll do a cystoscopy and dilate the stricture and that seeing the results of that  2 weeks later at the operative cystoscopy, finally give me an answer. But I have to admit I'm scared - first, since I'm in so much pain now, that the cystoscopy and dilation with just lidocaine gel while awake will hurt like the dickens, and second, that with all the inflammation I've had this year, I'm ripe for a cancer recurrence. Even though I've read a lot of encouraging stuff on this forum, I've also read about a few who did as well as I did only to develop invasive cancer with metastases and kidney involvement.
    Didn't read the NY Magazine article. I just always pray that I'm not one of those jerks people talk about when they complain about their doctors. When I joined my office 28 years ago, I told my staff to kick me in the ass if I ever get arrogant... and not one of them is afraid to set me straight if they think I've gone down the wrong path.

Warren,

Just curious, where did you learn that having all the inflammation you've been having makes you ripe for a recurrence, in spite of the fact that you've been clean for so long now?

I too have had a real struggle with inflammation but it's from the BCG so I would guess my case is different....

David

Well i had CIS and it was very "indolent"....no pain, no clue until the gross hematura and this tiny little tumor had ever so quietly gone into my muscle....really not fair.  Just as sneaky as ovarian cancer.
  I really do hope you get all this resolved....the bladder is just so aggrevated from the chemo . 
  Just out of curiosity since you're so close to Memorial Sloan where they see the most bladder cancer in the country why didn't you opt for a second opinion there?
              Pat

Just curious, where did you learn that having all the inflammation you've been having makes you ripe for a recurrence, in spite of the fact that you've been clean for so long now?

Hi David,
     Clearly, we don't know all the causes of cancer, but inflammation causes cell proliferation, and I had bladder symptoms and hematuria for 8 years before the cancer. Aside from the cancer, my biopsies showed chronic cystitis. I find it hard not to see some connection. And when I had the last bout of cystitis in December caused by my urethral stricture, my cytology showed "clusters of atypical cells consistent with papillary carcinoma." But when all the inflammation had subsided, my cytology was normal as were my biopsies.
     All it takes with bladder cancer is to have it once, and no matter how many clean cystoscopies you have, nobody ever says,"You're cured. We don't have to see you back for 5 years." Even if I make it to the once a year poke and peek, I'll always be worried that this will be the time that there'll be a recurrence.
     I work, I exercise, I enjoy my family, I live my life. I don't live bladder cancer, but my bladder and my stricture will never let me forget what I've been through. And so many on this forum have been through so much worse.
     I'm rambling because my bladder is on fire. I don't have direct, scientific knowledge that inflammation causes bladder cancer. In your case, the inflammation is supposed to stimulate your immune system to fight the beast, but in my case, this unexplained recurrent inflammation can't be good.

  Just out of curiosity since you're so close to Memorial Sloan where they see the most bladder cancer in the country why didn't you opt for a second opinion there?

Dear Pat,
    I know Sloan Kettering. I even did a one month rotation there during my residency. And they even have a local branch at Mercy Medical Center where I am on staff... but they don't take Oxford, which is my insurance. And don't let the MD fool you. I can't afford to pay for cancer care out of my pocket.

aaaah ....insurance.  I remember when i went there for my second opinion and second TURB they did not take my medical insurance either..it was out of network...but i still only had to pay 20%....but the person who was working with me on the insurance issue said they were working on them and it turned out they did pay the full insurance.  He was one of the most personable people i met there.  Its such a shame that the larger institutions will not even bargain with you....there's another person on this site that went to MD Anderson who has no insurance and they wouldn't budge on price even though they were willing to pay but at the price the insurance companies allow..MD Anderson would not even entertain the idea. Something has got to change.  Everyone has a right to the best care and thats not to say that it can't be found outside the major cancer facilities but its a difficult search.            Pat

Warren,

Have you been checked for interstitial cystitis?

Regards,
Rosemary

Warren, did I miss reading a post clarifying your August 24th appointment?  I read you are having a TURB on August 24th.  Is that correct?  A transuretheral resection of bladder?  Is that going to happen before your CT or IVP to look at upper urinary tract?  Pat, I do know of urologists who give the patient the choice of 6 BCG treatments or 6 Mitomycin treatments about 6 weeks after a TURB.  My first urologist, who was the professor of urology at Southwestern Medical Center in Dallas offered me either BCG or Mitomycin.  I took BCG but now see I might have been better off to take Mitomycin since it has now shown to be more affective in cuving recurrences with papillary TCC.  Rosie

Rosie can you refer me to the site which says Mitomycin is more effective?...I've been reading that BCG and Mitomycin have about the same outcomes........and Mitomycin can be the gift that keeps on giving.  I guess it depends on whose study you look at?.........Pat

Have you been checked for interstitial cystitis?

Dear Rosemary,
    I can't say I've been checked for interstitial cystitis, but I thought there was no specific test and it was more of a clinical diagnosis based on persistent symptoms for which no other cause can be found. I spend most of my time symtom-free, but when it hits, it's a doozie! In any event, it turns out not to be any kind of cystitis. See below.
                -Warren

Warren, did I miss reading a post clarifying your August 24th appointment?  I read you are having a TURB on August 24th.  Is that correct?  A transuretheral resection of bladder?  Is that going to happen before your CT or IVP to look at upper urinary tract? 

Dear Rosie,
    I guess the initials TURB can stand for a number of things. It's even used to refer to a trans-urethral biopsy of the prostate. In any event, I was scheduled for an operative cystoscopy under anesthesia for bladder biopsies (Trans-Urethral Resection [of tumors if there are any] and Biopsies). I say "was scheduled" because I was having too much discomfort to wait 2 more weeks. I figured that if my urethral stricture was causing my symptoms it would be best to deal with it now and then follow up at the TURB. I saw the urologist today and he dilated my stricture in the office and did a cystoscopy. He said my bladder was completely clean and that I should cancel the TURB. He said all my symptoms were coming from my stricture. Apparently so was all the microscopic hematuria and clots. And then he catheterized me and told me that I had to keep the catheter in for 3 days. He made it sound like it was routine for any patient after dilation of a tight stricture. In 4 years I've never been catheterized after dilation. Maybe that will make a difference. I can tell you it won't make it easy to see patients for the rest of the week.
    BTW, I had the CT urogram last week. It showed no disease of the upper tract and thickening of the wall of the bladder on the right side. My guess is that is due to obstructive voiding from the stricture. My uro looked very carefully at the area and said there would be nothing to be gained by biopsies since I had negative biopsies 5 months ago and a negative cytology (including FISH), and he didn't see anything there..
    So, no cystitis, no interstitial cystitis, no infection. Apparently I have Urethral Stricture-itis

That may go into the medical books...Urethral stricture-itis!!  Actually i've seen TURP as trans urethral resection of the prostate. 
  Lets hope this remedy does the trick and thats great news about the urogram.........Pat

Pat, sorry, I should of clarified that Mitomycin has been proven to be effective in my case of low grade papillary  BCG is no longer recommended for low grade papillary.  Rosie

Warren,  Wow, things have really changed and been resolved for the best since your prior posts! Wonderful that you are cleared of any bladder and upper urinary cancers.  I too have seen TURB to be referring to bladder  and a TURP is for prostate.  Rosie

Here's a new study about Mito for grade 2 tumors, saying it's better than BCG for this population (while BCG is superior for CIS and high grade tumors)


Long-Term Intravesical Adjuvant Chemotherapy Further Reduces Recurrence Rate Compared with Short-Term Intravesical Chemotherapy and Short-Term Therapy with Bacillus Calmette-Guérin (BCG) in Patients with Non–Muscle-Invasive Bladder Carcinoma         

05 June 2007 
}For low-risk tumors, intravesical chemotherapy is advocated while for high-risk tumors, intravesical BCG (induction and maintenance) remain the treatments of choice.
Controversy remains however, on what constitutes the optimal treatment for intermediate-risk tumor; In the March issue of European Urology, Friedrich and colleagues present their randomized, multicenter trial comparing short (6 week)- and long-term (6 weeks plus every month for 3 years) chemoprophylaxis with mitomycin C (MMC) with short-term ( 6 weeks) immunoprophylaxis with BCG for non-muscle-invasive bladder carcinoma.

The study recruited 495 patients. Toxicity was lowest with short-term MMC, followed by long-term MMC and then the BCG group.

These data suggest that long-term MMC can be considered for patients with intermediate-risk (especially recurrent pTaG2) tumors, to decrease probability of recurrence. What is unclear however, is whether this would help patients who have already received peri-operative MMC, which is now considered 'standard' therapy.

Also, the reader is cautioned against extrapolating this data to mean that MMC is 'superior' to BCG - not only did the authors use sub-optimal BCG (induction only) but also, patients with truly high-risk tumors - prior intravesical therapy, presence of CIS or large T1 tumors (> 2.5 cm) were excluded. For these patients, BCG induction and maintenance clearly remains the intravesical agent of choice.

Friedrich MG, Pichlmeier U, Schwaibold H, Conrad S, Huland H.
Eur. Urol. 2007, Mar 12.
doi: 10.1016/j.eururo.2007.02.063

UroToday.com Bladder Cancer Section

thanks WEndy...i think i followed that :-  Pat

I guess it'a about time for an update.
    My new urologist had me scheduled for an operative cystoscopy with biopsies at the end of August, but I never made it to the procedure. I had a CT urogram which showed some thickening of the bladder wall near the ureter, a bit ominous. About 2 weeks before the scheduled TURB I again started having severe urethral pain, microscopic hematuria, and frequent urges which I did my best to ignore because urinating actually made the pain worse. My urine culture was negative, as expected.
    I went to the urologist who offered to try to push up the scheduled TURB and I begged him to dilate my urethral stricture in his office that day. The dilation was grueling even with adequate anesthesia. He used progressively larger dilators (would you believe that I don't know what they're actually called?!? Some physician I am  ). He must have gone in at least 6 times. That's the right way to do it, and it's the first time I had it done that way. Then he sent me home catheterized for 3 days. It was real fun going to work that way. I had to ask the Mom's to sit on the table with their infants when I had to examine them or take blood because getting up and down from a chair kept yanking my chain, if you know what I mean  . I hope his approach is more successful at keeping the stricture open.
    Anyway, after the dilation he looked at my bladder and he said it was pristine. That made 6 years cancer free without any recurrence  . It took another few weeks for me to recover. We scheduled another operative cystoscopy with retrograde pyelography for early December. But last week the results of my CT urogram showed complete resolution of the bladder wall thickening, so my urologist called me and canceled the procedure. I have an appointment with him next week and I'll discuss strategy for my future.

bougie on down!!.........http://www.freepatentsonline.com/4607626.html

Warren,

About that thickening of the bladder wall....this was written in my CT Scan results from last May 2006...

"There  is a 1.0 centimeter wall thickening in the right posterolateral aspect of the bladder without evidence of hydronephrosis.  The fat plane between the bladder and the vagina is preserved.  This is consistent with the patient's history of bladder carcinoma..."

At that time, it seems that the radiologist considered this NORMAL with my history.  Why would it seem OMINOUS in your case?  Just curious....

BTW, your procedure sounded horrible.  I'm so glad that is behind you...

Buds,
Rosemary

About that thickening of the bladder wall....this was written in my CT Scan results from last May 2006...

"There  is a 1.0 centimeter wall thickening in the right posterolateral aspect of the bladder without evidence of hydronephrosis.  The fat plane between the bladder and the vagina is preserved.  This is consistent with the patient's history of bladder carcinoma..."

At that time, it seems that the radiologist considered this NORMAL with my history.  Why would it seem OMINOUS in your case?  Just curious....

Hey Rosemary:
    Maybe there was something different about what they found in your CT since mine said clinical correlation is warranted and my Uro spent an extra long time looking at the area during the cysto. Don't forget, I'm almost 7 years out, so there shouldn't be any leftovers from my cancer. I was under the impression that such a thickening could be seen with CIS, but don't ask me where I read that, and don't take it to heart as if I know. It's not the physician in me talking since I don't have expertise regarding bladder cancer.
    And don't forget that I had Mitomycin instead of BCG and I'm not on any maintenance, so I have no reason for ongoing bladder inflammation. My opinion: The thickening represented inflammation starting from the stricture. But I can only say that in hindsight since I'm relatively asymptomatic and the thickening resolved. At the time, it scared me. And it must have concerned my Uro since he scheduled the retrograde pyelography which he canceled in response to the normal CT urogram.
    Hope all is well with you.

Since my scheduled TURB was canceled, I had a follow up visit with my urologist today. My uroflow was normal!  That means my urethral stricture is still open. Now I hope it stays that way a good long time. Hallelujah - I'm graduating to annual cystoscopies. That means the next one is in August ... unless something happens before then. I'm supposed to have another CT urogram in 6 months because my urologist is still concerned about the bladder wall thickening seen on the first one - but that was in the midst of a bout of urethral strictur-itis. The last CT urogram was normal which is why the TURB was canceled.
    It feels like being almost at home plate - but you never know if you make it until the end, so now it's time to just enjoy life and try to forget bladder cancer until each annual cystoscopy. It's possible if the stricture doesn't remind me.

Warren,

This is all good, good news and I am so happy for you.

Your Bud,
Rosemary 

Santa came early ...congratulations Warren!!  Pat

Since my scheduled TURB was canceled, I had a follow up visit with my urologist today. My uroflow was normal!  : <>
    It feels like being almost at home plate - but you never know if you make it until the end, so now it's time to just enjoy life and try to forget bladder cancer until each annual cystoscopy. It's possible if the stricture doesn't remind me.

Wow, Warren, I am so happy for you, maybe this means you will never have another stricture OR recurrence! We all wish this for you.

I hope it doesn't mean you are through with the forum and email group, we would miss your expertise and understanding, but surely understand if it's your choice to enjoy a worry free existence to the most-est.

Best wishes for the holidays, into a happy 2008 and beyond.
Wendy