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The first 4 months part 1

12 years 4 months ago #6243 by Patricia
Hi Yosarian.......hey i actually got through it all in one sitting. And we have a few things in common....i also went to the curmudgeon Dr. Harry Herr at Memorial Sloan......He's the top man but as you say short on words. He's a great diagnostician and surgeon. He was able to get residual margins left in me that the first uro missed but because i was a T2..Grade 2...he quite simply said..."Take it out...it will be back"....not to mince words!!! If Harry isn't concerned about the lesion on the liver he probably knows something we don't. Just ask him about it. I also had an old scar on my lungs which everyone here was screaming Cancer and he said "old scar...nothing"....he was right but flags still go up when i have a CT scan and i have to remind them to go back and look at previous CT scans. I think current protocal at MSK is first the BCG and then gemcitabine. They do not use Mitomycin C at MSK. Personally i would go back to Dr. Herr especially if down the line you're facing a cystectomy....he's one of the best in the country...why settle?
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12 years 4 months ago #6227 by Rosemary
Hi Yosarian,

Wow, you've got a comprehensive story! That's great. If you are like me, you may find yourself referring to your own posts on this site to try to keep up with timelines of TURB's, BCG's etc.

You and I are the same stage and grade. I was diagnosed January of 2006, and like you, I had Mitomycin and Re-Turb to eradicate residual tumor. I have had 12 BCG treatments with no recurrance.

Of course, you know, the fact that your tumor was not muscle invasive is a good thing. I 'm just a little curious about the lesions on your liver and what that is about. Who will you talk to about these things?

Also, I do wonder if you are allergic to the anesthesia you were given at the time of your TURB. I, myself, despise general anesthesia, and opted for an epidural for my second TURB and subsequent biopsies. I was a much happier camper that way. However, when I recommended epidural to a poster here and she took my advice, she got a bad shot in the back and had a headache for days. I don't recommend anything anymore, but, just to let you know that it is an option.

Thanks for the comprehensive story and I hope you hang around with us for the long haul. There is lots of information and support for you here.

Your new BC friend,
Rosemary


Rosemary
Age - 55
T1 G3 - Tumor free 2 yrs 3 months
Dx January 2006
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12 years 4 months ago #6222 by Yosarian
Re: The first 4 months part 4

We next got copies of all the MSKH records and had copies given to our Florida urologist (who resents us going to MSKH) and also to our MD. The next day
Our Fl. Urologists office called at 10:15 and said to come in immediately. We waited until about 12:30 to see Dr S. He went over test results, operation report, took the CD’s from East River Imaging for review. He explained that there are different ideas about administering BCG. Some just give it once for 6 weeks, others give 6 weeks, then rest for 6, then after another look, 6 more. Then less frequent but continue for 2 years. Apparently the symptoms get more pronounced each time. He decided to have the nurse administer the BCG (as we thought was already planned). I had the catheter inserted
(later said it hurt more than expected) and they inserted the BCG bacillus Calmette Guérin (BCG) into his bladder. Dr. S keeps talking about taking out the bladder if it doesn’t respond to treatment or there are frequent reoccurance. We think he was pissed about us going to NYC.

I was told I was supposed to hold it for at least 2 hours, actually “the longer the better” then pee. I was also told you have to disinfect the toilet afterwards because of the bacteria. I held it for about 5 hours. The procedure ended at 1:11PM. No blood, no tissue, no pain.

Since then I have 4 more BCG treatments==


#2 BCG treatment 10:30 AM. . New nurse in training couldn’t get the catheter in, neither could her trainer, so they had to call the Dr. S. They had to give me more lido cane and he did get it in. Held it from 11:05 (when they finally finished) until 2:05. Symptoms this time- burning, frequency, urgency.

#3 BCG treatment - appointment at 9:30 so didn’t have to wait long. Brought urine sample from home (8AM) because I did not drink anything after midnight and wanted to be sure to have sample for the office. Gave sample to “nurse” & she had to show it to Dr. He said it was OK. Maybe this is only a visual “test” not a lab. Anyway, trainee again….couldn’t get catheter in, nor could nurse, so Dr. called in again. Trainee also never left sheet to cover up…had to ask, and they argued that I had lost 6 lbs. I told them no I get weighed every morning,,,and I only wish I had lost 6 pounds. She said she kept very careful records and could show me --then she showed me 2 week old data that was wrong. So much for careful records. BCG administered ….finally by 10:05. I kept it in until 12:55…just short of 3 hours. Symptoms…urgency and frequency, slight burning. OK by evening.

Next (when Home) After doing some web research I Ordered some vitamins from a website that purport to improve BCG effectiveness. High does of vitamin A especially. Called Oncovite.

#4 BCG treatment Appointment for BCG at 10:30. Shortly after I arrived the nurse told us their supply of BCG has expired dates and they had ordered it from their other facility. It would be 20min before it arrived. We brought our own urine sample again from home. Procedure was preformed by Dr. S since the nurse said the last two weeks she has had trouble getting the catheter in. Dr. Spires asked me if he was planning to have NYC do the next phase – camera viewing 6 weeks after BCG. I tried to change the subject and said he would get back to him. Dr. S said he would have to make arrangements so let him know. We will call Dr. H’s office and make appointment next week.. I was only able to hold the BCG for 2 hrs 45 min. Burning, frequency and urgency present.

Today June 27, 2007- 5th BCG appointment. Went OK. Asked Dr. S about Oncovite and he said he does not discourage people from taking them. Also asked about Interferon with BCG. He said it is usually given if BCG alone doesn’t work. He asked about Sloan-Kettering and what was the next step and procedure. He would normally “scope” and view next. I could only hold the BCG for 2hr. 22 min.

That’s it right up till now....still have a thousand questions and fears and highly doubt anyone has read this far –so I will close with my best wishes, thoughts, prayers, and good thoughts for all those here who worse as well as those better than me..








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12 years 4 months ago #6221 by Yosarian
Re: The first 4 months part 3

Before we left for NY we (wife and I) picked up our Florida records from the records department of our Florida Hospital. Labs, EKG, CAT Scan, operation report (which was finally dictated that day). We read the results and tried to research what some of it might mean. Scary stuff. High platelet count, CAT scan mentions very small lesions on liver- now what could that be?. Arteries partially calcified, Scoliosis. Never have a CAT Scan, they find all kinds of bad stuff. We are trying to keep our sanity but it is hard. Stupidly, I was embarrassed as I am never sick.

That Monday I had my consultation with Dr H. at MSK hospital. The entire operation was very professional although the good Dr. H was very uncommunicative –but he had his very knowledgeable interns and nurses readily available to answer questions and meet with me and my wife.

He said he would do the next TUBCR on Thursday since it would be 20 days since my first one. I cancelled the Florida appointment and had a CT Scan of bladder needed for surgery on Thurs.

On Thursday I had my 2nd BC surgery-this time at Memorial Sloan Kettering. I met with anesthesiologist and told her about vomiting after last surgery. She made light of it and said I probably ate and drank too much too quickly. Surgery was about 10:30 (that is when they took me back). They told my wife she could see me until about 12:45 PM. I was told in the recovery room by Dr.H that my surgery went well and it looked like he “got it all”. My recovery seemed better than first surgery. I was not so groggy but I did have pains in kidney and vomiting within 2 hours of getting home to my son’s house in Conn where I was staying. Once there though I couldn’t keep even water down and I got a script for anti nausea. That worked. I drank some water and the kidney pain subsided by evening. There was not too much pain but I did have a catheter in again but my wife and I removed it the next day with little if any difficulties.

The next day I flew home to Fl. with no problem but still some pain when peeing and my bladder hurts when I have to pee but this is diminishing.

Next we were waiting for Dr. H to call. He said Wed or Thurs. We called his office MSKH in his office to see if pathology had been received yet. She said she would call back to let us know if he had received it and if he would be calling Wed PM. No call.

The next Called Dr. Herr’s office and talked to Vincent in his office. He is sending a message to check on pathology and see when Dr. Herr will be calling….or maybe a nurse will call. That was the impression we got from Vincent.
Later that day-We called Dr. H’s office at 4:05 to make sure someone was going to call. She came on the line and answered our questions. Here are the questions and the answers as we recorded them.

Questions for Dr. H: Sue from his office called on Thurs.
1. How did surgery go? Well. All gross evidence removed.

2. Not to be judgmental, but how much of the tumor was left after the previous surgery?

3. Were you able to remove ALL that was left? Clarify pathology. Was there any cancerous tumor left? Is that why there was no evidence of cancer. All samples taken by Dr. H were negative for cancer – meaning first surgery got “all”…..BCG will capture any microscopic cells still left. (ans. in blue are from 5/23)

4. Is it still in the same layer of bladder? Stage and Grade? Pathology indicated negative for cancer as did the urine test after surgery. No advancement of cancer.

Review of pathology from outside source was first layer, high grade. Lamina propera NOT the muscle.

5. What treatment should be done next? Is Florida OK?

a. BCG- Dr. H will write a script for dosage. As a result of high grade in pathology, recommends BCG to get any microscopic cells. Input with catheter, then held in bladder for 2 hours. Nurses usually do this with smaller catheter than you had after surgery. Once per week for 6 weeks.
Possible side effects- frequency or irritation when voiding, some blood or tissue. 80cc of liquid.
b. Other treatment- Follow up every 3 months (or more) the rest of your life.
c. Trials- usually not unless BCG does not work. Not until after BCG, then we can evaluate.


6. What follow-up with H’s office is needed? When? Should we set up an appointment? 6 weeks after BCG. Call to make an appointment when last BCG is scheduled.

7. Prognosis? Sue checking with Dr. H . 3month follow-up until Dr. says every 6 months.
8. Re-occurrence %, chance of spreading? Sue checking with Dr. H. Almost 100% recurrence but now can be closely monitored. Expectations are good.


9. Is this hereditary? Unknown. NO

10. Should I change diet or other lifestyle habits to improve bladder health? Eat healthy and drink plenty of fluids.

11. Did I forget to ask something? NO

12. Sue will call back next Wed. May to answer:

a. prognosis,
b. mytomyecin impact on start of BCG.
c. Script for dosage of BCG.
d. Ask her if test results will be mailed to us after our conference call. I have to call to ask: CT Scan at East River Imaging, pathology report, operation report. Where sent ???
e. Any Uroligist office can do the BCG.
f. Paperwork should be sent to our Fl. MDs and us. Script for BCG will be faxed to FL urologist.

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12 years 4 months ago #6220 by Yosarian
Re: The first 4 months part 2

On the day of the surgery I arrived at hospital 5:45 AM. and went to pre-op. I waited in bed for the OR nurse and anesthesiologist. I went to surgery about 7:40. About 9:10 my wife talked to my Dr. about the surgery and she updated the question sheet we had made with the answers he gave her. He told her that I was in recovery and they would call her in to see me in about 45 min. He said the surgery went well and that he also used Mitomycin C. In about 1 ½ hrs they called my wife and told her she could go sit with me in the outpatient area. I was still very groggy. At noon I was still very groggy. I felt nauseous and later threw up a little. I was drinking water, cranberry juice and apple juice. The nurse wanted me to start moving and getting up so she could discharge me by 2:15PM. I started to sit up, felt sick again and threw up probably everything I had drank. The nurse then said she would get me something from the anesthesiologist for my stomach nausea. She did…”Regin”..or something like that was administered by (IV). This made me very sleepy so I slept for a couple of hours.


These are the questions and answers we asked and got after the surgery while we are still in the hospital.

How did surgery go? Were you able to remove all of the tumor? Went well. Yes got all the tumor.
Were there any other tumors? Another small spot and got that too.
What is the prognosis? Know better after pathology.
Is there any evidence it spread? NO

When will we know more from the Pathology? Earliest Tues.

Can you tell stage or grade at this point? No but thinks it is low.

Was chemo used- what was it? Yes. Sometimes they do this again in about 1 month.

What are the statistics about re-occurrence? 50% in 2 years, what about in 3 years – up or down. Goes down and so does testing intervals.

Any other suggested therapy? Radiation, drugs, etc. Perhaps



Drugs:
Pain meds One for pain, one for bladder spasms.

Should he continue current antibiotic? Yes finish both.

What should we expect? Bleeding, catheters, pain?

Are there any symptoms of problems to look for?

When can he resume normal activities…tennis, lifting, sex? 2-3 weeks

Any diet, food or exercise restrictions?

Is there anything we should start to eat…like cranberry juice? Works for some, not for others.




About 5PM my wife and I started to leave and this time with success. The catheter was to be left over the week end until Mon. when we go to the Dr.’s office for removal. I was told I was to continued antibiotic meds as well as two new ones for Pain- Bladder Spasm (oxybutynin-5mg. generic for Dithopan) and Pain- Oxycodonew/apap Generic for Percocet). At home I took the antibiotic but threw up 45min. later. I was later successful keeping down some saltines and a little ginger ale. The pain meds seem to work well and kept me keep pain free but hallucinating and/or dreaming. I was drinking more now and passing a lot or urine through catheter. We (my wife and I) were able to change the leg bag to the bigger “stay in bed bag”.

Over the week end I gradually improved with the help of the pain pills which helped me sleep although sleeping with the catheter was somewhat painful as I tend to move in my sleep and was having weird dreams. I had a small amount of blood in my urine and hadn’t had a bowel movement in days as somehow I couldn’t (psychologically? Physically?) with a catheter (when I sat) pointing upward! Oh well...

On Monday I called Dr.’s office at 9am and they said to just come in to have catheter removed. Once there the nurse took out catheter and injected Genemycin (antibiotic). I was told to come back at 2:45 for an ultrasound of my bladder. I was really afraid to pee (after the catheter was first out) but it was not bad. There was a little burning but very little blood (and then only for the first seconds). Subsequently, no blood was noticeable.
I was asked to come back at 2:45 to the Urology office. I gave nurse a urine sample and peed. Next I had an ultrasound. Nurse said NO- zero- urine left in bladder and that was good. I made an appointment with Dr. for 1:30 PM on Wed. to go over surgical and pathology reports. So far so good!!!! But I was still very worried about stage, grade, other surgical findings and the prognosis.

Wednesday finally arrived- My appointment with Dr. to find out results of pathology was at 1; 30 PM. My wife and I arrived at 1:25 full of fear and hope and was told Dr. Spires was there. We sat in the waiting room and the minutes passed like hours. At 1:40 another patient arrived and we heard the receptionist tell her that the Dr. had a family emergency and had to leave…and that they could reschedule for Fri. We looked at each other and hoped he was still there and could see us. However, at 1:50, the nurse (receptionist) came out and called us into the hall, where we were told the Dr. could not see us….he actually had been doing rounds at the hospital when called for a family emergency. Unbelievable. I didn’t know how we could take this stress. At this point we felt, even if we hear the best news, this has taken a year off our life. Yes, perhaps over –reaction...but our lives had been damn near perfect until then.

A few hours later the Dr. called on our home phone. He explained that the tumor was Stage 1, grade 3. We were hoping for better news. Like grade 1 or even 2. Stage 0 is the best. I guess we should be VERY THANKFUL it was stage one instead of two. He said he could do another surgery (resection) in 4-6 weeks. He wanted me to get a CAT Scan too. He said for the next surgery will go in and re-scrape area. Also will do BCG (injected into the bladder thru a catheter, in the office weekly for 6 weeks. which puts bacteria into the bladder to make it strengthen the immune system. Since we were leaving for NY, we set up appointment for May 2 at 11AM. We are pretty down since at that time since the Dr, said T1 Grade 3 might mean bladder removal and we should think about it. The weekend sucked.

We made an appointment at Memorial Sloan Kettering and got to see Dr. H a few weeks later. I had spoken to Denise in the Urology physician referral office about setting up this appointment. She was so knowledgeable. We made the appointment for 10:30 on Mon for registration, then consultation at 11AM. We had to fax her pathology report confirming I was T1 G3 before she could confirm appointment. We were told I would have a cysto for the Dr. to take a look. I was also told that if we can get a barium CAT scan before we come, that would be good—I did. We also had the pathology slides from the surgery sent to MSK hospital. The slides were reviewed in NYC and they agreed with the Florida report. The NY pathologist noted there were a lot of muscle samples --none of them showing invasion. This was good news. I was told the pathologist that works at Sloan is world renowned….along with Dr. H. This is positive news.

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12 years 4 months ago #6219 by Yosarian


Hello to one and all, 6/26/2007

First time writing here....I am a 59 Y.O. otherwise very healthy retired male. I am very fortunate to have a wonderful wife of 36 years and 3 healthy grown children I am about 5’6’ and 148 lbs. I have never felt better in my life...physically that is...but have never been truly ill before and can't shake the fear—even though I know how counter productive that is. I realize that I am more fortunate then many or even most here in that I could be much worse as I am T1, Grade 3. But the worry is like a stone always in my shoe-and my shoe is always on!

Anyway...Here is my story .....I hope it does something good for someone else and I think it may help me to write and share it with other strangers... as I haven’t told any my family-friends or relatives yet --with the exception of my wife and my oldest son as I don’t want them to:
A-worry
B-treat me different
C-The affect A&B would have on how I treat/ view myself as well as other more complex reasons concerning how others view you..and verse visa

So here goes...
About 3 months ago I notice some blood in my urine...after a very hard 3 hour work out playing tennis. I wasn’t terribly concerned as I had had blood in my urine a few times previously in prior months that were “once and done” occurrences. Fortunately, after my last occurrence I happened to have my regular physical with my Florida MD. I “passed” my physical with flying colors and mentioned to him the blood in my urine and he said I should schedule an ultra sound and X rays and wrote me a script to have that done at a local testing facility. He told me not to worry but that we should have it “checked out just to be safe”.

I got my first shock when the very young technician taking the X-ray casually asked as he was just starting to take the X-ray-”Have you had cancer before?” I was immediately angry and then shocked and concerned! Why in hell was this young punk saying the
“C WORD” and worse saying it to me!!!! I replied with a stunned “No” and he quickly back tracked. The ultrasound guy wouldn’t give me any info at all and told me to check with my Doctor.

A few days later my fear deepened when my doctor did call and say their appeared to be a 3 to 5 cm “irregularity” in my bladder that was “probably nothing” but I should have it checked out by a urologist and he referred me to a urologist near me. I couldn’t get an appointment at first for like 6 weeks until my local Dr. called and got it moved up.

I live in a rural area of Florida and have what I think is a good urologist here but I prefer also getting the opinion of Dr. Herr at Memorial Sloan Kettering in NYC. But first I went to the urologist here in Florida that my regular MD had recommended. The waiting room was fairly crowded and it seemed the average patient in attendance was in their late 70’s to early 90’s but that is the norm for most of the west coast of Florida-- AKA “God’s waiting room”. Anyway, he (the urologist) seemed very young but competent, and I had checked that he was at least board certified. We chatted for a few minutes after the nurse had taken my blood pressure (110/70) and weight. The Dr. told me it was probably a “false positive” shadow on the ultrasound. He said not to worry and that he would “scope me” to check and make sure at my next appointment.

Although I was in no real hurry to loose my urethral virginity I was more worried about a possible C word “irregularity” and told him I would wait. After about a 40 minute wait a nurse? came to get me and took me to the room where I was to be “scoped”. She gave me a paper sheet and told me to take everything off but my shoes and shirt. This I did and then waited another 15 minutes, sitting on an examine table covered by paper from a roll of paper that was covered with Viagra advertisements. I was somewhat taken-back by the seeming lack of cleanliness in the exam room as there were some wet spots on the floor and wrappers and just the general look of a Wal-Mart restroom.

Anyway, the nurse? came back and introduced me to the lidocane injection and soon after the Dr. came in and took “the scope” out of some liquid (antiseptic I hope) and started the exam. No beta dine or iodine was first applied externally. The insertion was painful but not nearly as bad as I had feared. He told me to watch the TV monitor but it was blank. He then whacked the TV monitor’s side several times with one hand causing the hand holding the scope to jerk around in my bladder like a ride at nearby Disneyworld. After several more whacks and still a blank screen he declared the Monitor must be “on the fritz”.

After several more seconds that seemed like minutes/hours He said “There I found it-I found your carcinoma! ...here take a look! It’s that fern like looking thing!” He seemed excited that he had found it (but perhaps it only seemed so as I was so much the opposite of excited). He then handed the scope to me but this caused it to move and loose focus on my very own carcinoma! So that was it---I had the C_word. I was stunned, shocked, scared, confused and stunned some more. The doctor told me to get dressed and that he would return.

I dressed and went out to the waiting room and whispered to my wife..”It isn’t good,,you had better come in...”. The Dr. came back a few minutes later with a “Bladder Cancer” comic like book that showed an elderly couple walking a Scottie dog on the cover. The “comic book” wasn’t funny but actually very good for at that point in time my comprehension level was somewhat limited. He used the illustrations in book to explain the stages and grades. I almost fainted when he started talking very casually about removing my bladder if it was T2 or above and possibly if it was T1 G3 it was a toss up. He said we would find out the stage and grade when he did the transurethral resection that we scheduled the following week at the local hospital.

Several days before the procedure I went into the hospital for all the pre surgical tests (x rays, IVP, blood work, urine analysis, etc). The IVP report I did see and it read...
: Following IV contrast injection, the kidneys appear to be normal in size, shape and postiton. The renal collecting systems and ureters are normal with no dilatation. There is irregularity of the mocosa of the urinary bladder best demonstrated on the post void view. Indeed, a bladder carcinoma cannot be excluded for which Cystoscopic correlation is suggested.
Impression : Irregularity of the mocosa of the urinary bladder and uroepithelial tumor cannot be excluded. Otherwise, unremarkable upper GU tract.

The day my surgery was scheduled I got a call from the Dr. at 5:50 AM canceling the surgery it as I had a bladder infection. (This I believe I got from my first “scoping” where I was squeezed in and no beta-dine ect was used) I was prescribed an antibiotic and surgery was rescheduled—a few days later I got a call changing my prescription as they had cultured my infection and found a more specific antibiotic to treat it. The first prescription was for Cipro the second was for Nitrofurantoin-macro 100mg’
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