To RC, or Not to RC

{niftybox width=180px,float=right,textalign=left}Brothers and Sisters
Dan Martin

Which sperm was I,
Of the millions thrust towards the womb
Only to die without ever having lived?

How was I different?

Which egg was I,
Of the ones who waited
For life that never came?

How was I different?

Did I almost have a twin?
What would she have been like?
Would I have liked him?

What would they say
When I ask which cell of mine
Changed, mutated,
Caused my disease,
Such that I moan,
Why cancer
Why me
Why now?

What would they say
Of my complaints
That life is not fair?

Would they look desirously,
At my life of 50 years,
And if fantasy could be made real,
Choose to exchange places
With me now,
Cancer or no,
And live my remaining years?

I think they
Who have never lived,
Would answer

So what life shall I lead,
Now that the abstract knowledge
Of death becomes real?
Now that I know,
Really know,
That I will die.

My brothers and sisters
That never were,
Wait silently,
For my answer.

{/niftybox}… that is the question (with apologies to Shakespeare)

Update March 2006- below
Update March 2007 below

For my answer to this question, my decision, read on.

The reason I’m posting this stuff is because others who have high grade bladder cancer may be debating whether to continue with any number of bladder sparing therapies versus simply yanking their bladder out. Keep in mind that my thoughts here are about my case only. It seems that I’m one of the lucky ones in that my cancer is apparently not invasive at this time, so I’ve had time to do the things I do best, which is bug the shit out of medical professionals, asking question after question after question. So if your cancer is invasive (or low grade such as Ta), or otherwise doesn’t have other high risk characteristics (multi-focal, large…), then my comments don’t apply. Also, I am not trying to convince anyone that they should undertake any particular course of treatment, my comments and opinions and decisions are FYI only; I am not trying to say that I am right, that I have the answer.

Right, like there is any answer.

At USC Norris yesterday I had my seventh (and last) medical consultation. Frankly, I’ve tired of the quest for information, opinions, recommendations, concerning my prognosis, diagnostics, treatment… It was a six hour drive (one way) to Los Angeles from where I live in Northern California (Silicon Valley), and while the trip was worthwhile, the time for questions has ended, for now, for me.

I was diagnosed with T1G3 and CIS in July 2004 (11 months ago), had my first TURBT in August which was followed in November by a second TURBT to remove what was suspected to be recurrent tumor (which turned out
to be a false alarm, thankfully). I’ve had one 6-week induction with BCG, followed by two 3-week maintenance sessions of full-strength of BCG (no interferon). The results of my latest cystoscopy exam and cytology and
FISH tests (all within the past month) were negative for cancer.

I’ve had consultations with a total of seven urologists. These consultations were done at four major cancer centers, one community hospital, and one
with an urologist in private practice. While each urologist has given me the impression of being a competent doctor, you will not be surprised to read
that they differ significantly at times when it comes to their diagnostic or treatment preferences.

Community Hospital- First opinion

This was the urologist who initially and correctly diagnosed my bladder cancer, he recommended immediate TURBT followed by BCG. I decided to seek a second opinion not only because I am genetically incapable of doing otherwise, but because he seemed to get impatient with my long list of questions; consequently, I wasn’t comfortable having him as my surgeon.

Stanford Cancer Center- Second opinion
(Ranked #18 out of the top 50 ranked cancer hospitals in 2003) (Cystectomy: approximately 1 to 2 done weekly)

This urologist (who became my primary urologist) confirmed my diagnosis of cancer, he also recommended immediate TURBT, followed by one 6-week induction of BCG. He did not recommend maintenance BCG therapy, he
does not use FISH, and he does not use perioperative mitomycin after TURBT. He also performed both of my TURBT surgeries. After I became ‘educated’ (in other words, armed and dangerous after reading quite a bit of medical literature), I informed him that I was strongly in favor of immediate RC; he disagreed and thought it best that I pursue immunotherapy and
undergo regular surveillance. Their pathology report reported CIS but didn’t specifically say I had T1G3 (descriptive terms were used instead).

MD Anderson Cancer Center- Third and fourth opinions.
(Ranked #1 out of the top 50 ranked cancer hospitals in 2003) (Cystectomy: approximately 3 to 4 done weekly)

Their pathologist, after reviewing my tumor slides, staged and graded it as T1G3 + CIS. Differing from Stanford, they strongly encouraged that BCG
maintenance therapy be followed per the Southwest Oncology Group’s protocol, and after writing a letter to my Stanford urologist, he agreed to begin
maintenance therapy on me. They also were willing to utilize FISH as a diagnostic tool. Note that I was alternating surveillance (cystoscopy and cytology…) between Stanford and MD Anderson (just to be safe – have you noticed yet that I’m anal?). It’s worth it to me to fly out to Houston, Texas every three months or so. They also did not recommend performing RC at this
time. I asked one of the urologists who and where he would have his RC done if he had my cancer; he said that if not at MD Anderson, then he would want Dr.
John Stein at USC Norris to do it.

Marin Urology (private practice, no ranking) Fifth opinion

Saw a urologist who had worked at UCSF for a number of years. He said I was being treated appropriately, and that he would not recommend RC at this time. He said he would only use FISH if other tests were equivocal. He typically removes about 25 lymph nodes. He knew of
Dr. Stein, said he provided more aggressive treatment.

University of California San Francisco- Sixth opinion
(Ranked #17 out of the top 50 ranked cancer hospitals
in 2003) (Cystectomy: approximately 1 done weekly)

The urologist also said I was being treated appropriately. He does use perioperative mitomycin after TURBT, which is curious because this urologist
was trained by my Stanford urologist, who does NOT use perioperative mitomycin!!! While he said that he would not recommend RC at this time, he would go ahead and remove my bladder if I wished because of my diagnosis of high grade cancer. He typically removes about 25 lymph nodes. He also said that Dr. Stein provided more aggressive treatment.

USC Norris Cancer Center- Seventh opinion
(Not ranked) (Cystectomy: approximately 5 to 6 done weekly)

Had a 2:00 appointment with Dr. Stein, had to wait three hours until 5:00 to see him as he was delayed in surgery and then was called back into surgery for some reason. I ended up spending two hours with him because there I was his last patient for the day. Lucky me! As one who is trained in science (chemistry) and did biochemistry research for a year after getting out of
school, I really appreciated his data-driven approach to explaining treatment options for my cancer.

I asked him why USC Norris wasn’t included in the rankings of cancer hospitals. He said that to be ranked lots of information must be provided by each institution and that a full-time employee is needed to collect and prepare this information. I think he said that, in his opinion, USC Norris would be ranked as one of the top three cancer centers for bladder cancer.

Prior to our consultation I had sent him my tumor slides and tumor block and films. When I asked him if he agreed that I had T1G3 + CIS, he excused himself, went upstairs to the lab and personally looked at my slides, and upon returning fifteen minutes later said that that my tumors were indeed T1G3 + CIS. After he finished his consultation with me, he invited me upstairs to his office to look at some slides on his computer of one of his recent presentations at a conference about bladder cancer treatment options. And then he searched through his filing cabinets to find and give me three papers he had written which further supported what he had previously told me during the consultation. (This doesn’t include the published journal papers discussing bladder cancer and treatment options… that were inside a folder that is given to new patients – GREAT IDEA – this was not done anywhere else!!!)

Cutting to the chase, he disagreed with the wait and see approach that other urologists had been recommending. While he made it very clear that it was
MY decision to make, he said that if he had the type of cancer that I had (or have), that he would have immediate RC. He told me that for him, the
availability of the newer types of neobladders (I believe he is the developer of the t-pouch) would be a factor in his decision, since post-surgery quality of
life can be near normal. Whoa, I was a bit surprised!!! I mean, every single urologist I had seen up till now recommended against immediate RC. And
to make my decision even more difficult, he said that in my instance, the decision might be less than clear, given that I am apparently cancer-free right now.

Below are some comments I remember him making (I was taking notes very fast while he was talking, so any bonehead misstatements you may read are mine).

– He suggested I carefully consider having RC done within six months, BEFORE a FIRST recurrence of cancer.

– He preferred RC over BCG or BCG-interferon immunotherapy.

– Even assuming that I’m cancer-free now, the chances that my cancer will eventually return are between 60% and 80%, and that the chances of progression are about 20%, as I am in a high risk population (T1G3 + CIS)

– He estimated the chances that my cancer had already metastasized (even though it apparently is or was confined inside the bladder at this time) at something less than 14% (though maybe not a lot less).

– He said that the great majority of patients at USC Norris who have cancer similar to mine opt to WAIT and NOT have immediate RC. He estimated that maybe ten patients or so each year (who have my kind of cancer) opt for immediate RC.

– He said that given my age (50) and relatively good physical condition that my chances of dying on the operating table during the RC were 0.5% to 1% or so.
Deaths are usually attributable to heart attack or heart arrhythmias.

– He estimates that about 15% of the time lymph nodes examined for cancer result in false negative results (cancer is not seen but is actually present). USC
Norris does 3 to 5 cross sections per lymph node, and he said they are experienced at looking for cancer.

– While the usual number of lymph nodes taken out by the more up-to-date surgeons during RC this day and age is about 25, he removes about 65 (yes, I’m sure he said sixty five) lymph nodes, which is why he thinks USC Norris has good results on long term survival after RC.

– He said that I am a candidate for nerve-sparing therapy (so that I may be able to continue having normal erections, post-surgery), though because cancer
cells can sometimes reside in the same area as the nerves, I may elect to be more aggressive and encourage him to just go ahead and take these nerves
out (he said that if I elected nerve-sparing surgery, that the final decision would be made at the time of surgery).

The following comments are in a paper he gave me that he authored titled “Indications for Early Cystectomy”:

– several large studies have shown that tumors are understaged 34% to 62% of the time- Even if no errors in staging occur, risks continue. Despite intravesical therapies, the potential for tumor progression, death, and treatment-related side effects remain

– Cystectomy allows accurate pathologic evaluation of the primary tumor and regional lymph nodes, which, in turn, can help establish the need for adjuvant
treatment and appropriate strategies to meet that need.

– Radical cystectomy produces the best recurrence-free and overall survival rates. – The current possibility of orthotopic diversion and nerve-sparing techniques has improved the quality of life and lessened the impact of cystectomy, making radical cystectomy less morbid today.

A graph illustrated (data was from 1,054 USC Norris patients) the probability of cancer recurring based on tumor staging. For organ confined tumors, long term
survival is about 85%. For tumors that are extravesical, long term survival is about 60%. And for lymph node positive cancer, long term survival is
about 30%.

So, what have I decided to do? Well, I have decided (I think) to have a radical cystectomy done. Soon. Probably mid-August (unless I get cold feet and
chicken out).Of course, it’s no surprise that I’ll have my surgery
done at USC Norris, for all the reasons discussed here. Second choice would be MD Anderson (though I never asked them how many nodes they remove). I would not have my surgery done at Stanford, though my impression is that my urologist is quite a competent surgeon. But, the fact that he wouldn’t give me
maintenance BCG therapy until MD Anderson wrote him a letter, the fact that he doesn’t use FISH, the fact that he doesn’t use perioperative mitomycin, makes me nervous; what else might he not do during surgery that I don’t know enough about to ask.

Frankly, this decision scares me. Here I am, cancer-free, I’m finally starting to feel good after two surgeries and umpteen BCG sessions, and I’m voluntarily going to subject myself to a major surgery that will keep my in the hospital from one to two weeks and out of work for three or four additional weeks?!?!

So why am I so scared? The risk of dying ‘under the knife’ doesn’t really scare me too much. I think that risk is remote, and if I die, I’ll never know it, so
what the heck. While I’d feel terrible if I died (if I could <g>), especially for my kids, I’m doing this so that I can stick around longer. Maybe a good while

I’m afraid that tests that will be done prior to surgery may find that my cancer has already metastasized, and that surgery will be cancelled, and that I’ll have to undergo chemo.

I’m afraid that during surgery, cancer will be found in my lymph nodes or elsewhere, and either surgery will be cancelled or that I’ll have to undergo chemo.

I’m afraid of the post-surgical pain.

I’m afraid of post-surgical complications with the neobladder…

I’m afraid that maybe I’m having the surgery for nothing, that I may be cancer-free now; maybe I could be one of the lucky few whose cancer does not recur.

And what’s funny, as much as I’m afraid of cancer, that fear is remote, it is a future maybe. And my future fear is strongly outweighed by the more immediate fear of issues surrounding surgery. Of course, I won’t miss cystoscopys, or BCG, or future TURBTs…or this damn gnawing fear that cancer is still present or might return or might already have metastasized…

Logically, I believe that the data provided by modern medical science in peer-reviewed journals clearly shows that RC is my best chance of long term survival. And I believe that the data for RC is clearly stronger than the data for immunotherapy or vitamin therapy or supplement therapy or nutrition or distilled water or reflexology or hope or prayer. Though, of course, I’m not implying an ‘either or’ situation; I will continue to eat a very good diet and try to do most of the other good things that may possibly have what I believe to be some small impact on my future cancer risk.

So for now, I will keep thinking about the encouraging words that folks in this group who have already had RC have said. And that helps.

Thanks for listening.



Subject: Update on Dan’s RC

Regarding my recent RC done at USC/Norris on 8/19/05 and from a pathology point of view, I had the best possible outcome. Pathology showed no signs of cancer in my bladder or prostate or lymph nodes (65 were removed). As an added bonus, a p53 test was done on my original tumor block (taken from my first TURBT done a year ago) which showed that that this anti-tumor suppression gene was not defective but normal.

Prior to surgery, Dr. Stein offered me an opportunity to participate in a clinical trial designed to determine whether patients who received either a Studer or T-Pouch had better outcomes (there were already several hundred participants). Evidently Studer neobladders carry a small long term risk of kidney damage due to urine reflux, while T-Pouch neobladders carry a small long term risk of ureter stenosis. I declined to join the clinical trial because even though surgeons at USC/Norris continue to create both types of neobladders, I wanted the best option for me. The T-Pouch seems to be the latest and greatest type of neobladder as it was developed to prevent urine reflux back to the kidneys; because ureter stenosis has only been observed in patients who have undergone radiation, I elected the T-Pouch.

The fact that this study was being done at USC/Norris made me feel that I had made the right decision about where to have my surgery performed.

Nine days after surgery in Los Angeles I was discharged from the hospital and stayed with my mom for two weeks in Riverside. Unfortunately, three days after being discharged I was in severe pain and couldn’t breathe due to a small bowell obstruction, and had to be taken by ambulance to the ER at a local hospital. Stayed five days there, which was not fun. I’m guessing that I started eating solid foods too soon after surgery, so here it is now 3 1/2 weeks after surgery and I’m still on a liquid diet. I had another scare last night where I thought another small bowell obstruction was forming but I’m working my way through it.

The pre- and post-surgery survival guides posted on the WebCafe site were very helpful. My advice to everyone contemplating RC is to READ THEM, UNDERSTAND THEM, and IMPLEMENT THEM. My mistake was not paying enough attention to diet post-surgery.

Another bit of advice is to have someone stay with you in the hospital during your ENTIRE hospital stay (post-ICU). Even as good as most of the nurses are, they were usually unable to immediately respond when I pressed the call button. My daughter and mom and girl friend took turns staying with me; their assistance was invaluable, in that I was no longer dependant on nursing availability to do a variety of tasks for me (ice chips, walks…).

I’m somewhat continent during the day, mostly incontinent at night. Kegals are my friend.

Thanks to everyone for their good wishes.

Update March 2006
1/20/06 Update
Met with Dr. Stein for a post-RC followup that had been delayed for a couple of months. The following tests were done:

– urine cytology
– blood analysis (abnormal electrolytes could indicate cancer has spread to the bone)
– chest x-ray (can show metastasis to the lung)
– kochogram (CT scan of neobladder)
– CT Scan (can show metastasis to the liver/pancreas/lymph nodes)

All was normal.


Update March 2007

Met with Dr. Stein (and Steve, his assistant – what a great guy) last week for my 18-month post-RC checkup, the following tests were done:

  1. urine cytology (he doesn’t recommend FISH, due to all the crap in the neobladder that could cause spurious results – unless cytology indicates something suspicious)
  2. blood
  3. chest and pelvis x-ray
  4. neobladder x-ray (a cystogram, or cystography, using a iodine solution as contrast)
  5. CT of abdomen and pelvis (again using an iodine solution as contrast)
  6. Cystoscopy (no prostate = piece of cake!)

Way too many x-rays for my comfort level, but what you gonna do?

All looked ok; it’ll take a few days to get cytology results. I was nervous about this checkup as I had, twice in the past 18 months, some very light blood in mucus after voiding, but he said this was not unusual, not necessarily a concern.

He said there is about a 5% chance of urethral recurrence; symptoms would likely be seepage of blood (different from bloody mucus). There is also a small chance of recurrence in the transitional cells that line the ureters, up through the pelvis of the kidney. Statistically speaking, the recurrence curves begin to flatten after a few years – they bottom out at about 85% after five years (no recurrence) for folks with my post-surgery pathology.

He said that studies indicate that there may be about a 20% chance of hypercontinence (40% for women) 10 years after surgery. The good news is that men who have nerve-sparing surgery have better continence; the bad news is that nerve-sparing surgery may increase one’s risk of hypercontinence; the reasons for this aren’t well understood.

I’ll continue checkups every 6-months for the first five years, but with fewer x-rays.

Presently, while I do have the odd ache and pain ‘down there’, the good news is that I’m continent day and night, have no difficulty voiding, the sex thing is just fine – don’t need pills or shots (he, and his compatriot, Steve, seemed especially pleased to hear that their handiwork turned out so fine – me, too), though it did take about a year for my hydraulics to really kick in.

Turns out I just missed seeing another Stein alumni (on this webcafe list) list who had had his 6 month post-RC checkup a day or so before my checkup.