Home › Forums › All Categories › Non Invasive Bladder Cancer › SOme questions.
-
SOme questions.
Posted by britt on March 14, 2009 at 7:33 pmAs I mentioned in another post, I am fairly newly diagnosed with non-invasive bladder cancer. My problem is that I lost the urologist who did the original procedure and now Ive been shuttled back to the VA(who havent treated me on this yet). My original dr was a liilte vague and at the time I wasnt as focused as need be. I am armed with almost no knowledge of the actual parameters of my illness.
I had read that this cancer can be caused be recurring bladder infections. On 2 different occasions while hospitalized for my heart condition they found bladder infections. About 2 years ago I was directed to the VA due to going hypotensive on my correg. They admitted me when they found another baldder infection. At that time I was admitted for 3 days for an antibiotic series. First by IV until it was getting beeter and then oral. At that time I had asked the dr why I had numerous infections. He told me that some where prone to them. It bothers me now that they have never done any regular followus to see if it came back. My white count is always elevated but that has been a constant since I caught MRSA at the VA in 02.
The time they found it I was in the ER> After doing blood work they admitted me for the bladder infection. Does anyone know that if regular bloodwork shows that a bladder infection is occurring?
My concern is that I have been suffering from ongoing bladder infections for a number of years and that this might have caused my cancer.
Another concern was in how it was found. I passed several clots back in Oct of 07. After they passed I had red tinted urine for a day or so and then it cleared up. About a month later it happened again. I first noticed it in my urine stream. I could feel them coming out. There was no pain it just felt like I was shooting peas out! After that I told my dr as it started to worry me. Due to complications it was over 14 months before they did the procedure and found and removed the cancer(the dr said he got all of it-my good news!) If I was running around with undiagnosed ballder cancer all that time does that send up any flares for making the problem worse? Also during the wait to get the c-scope done(it had to be done insurgery under general) I had 2 ultra sounds of the area. Now they tell me that an ultrasound will be part of the presurgical requirements before I have the scope done every 90 days.
I wanted to know if the ultrasound would show either the bladder cancer or an infection
brittbritt replied 15 years, 11 months ago 8 Members · 16 Replies -
16 Replies
-
The VA supplies all my meds except for the pain meds. They dont have a PM clinic any longer and most VA PC givers refuse to deal with chronic pain.
The pharmacists seem pretty unmotived about drug interactions I dont get many answres. Ive had a few bad reactions to RX’s. Not from interactions but from the meds themselves. I hate my daily doses but its a ritual -
Did I read 22 different types of meds? 20 prescriptions. I am not a doctor BUT, that has to be too many meds. Are all the different doctors talking to each other?
DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.As far as weakness and pain, they are some of the side effects even if the drugs were taken alone. For example, correg causes dep muscular fatigue and weakness while lipitor alone can cause severe leg pains. I have these onditions anyway. While not helping relieve the effects it doesnt seem to make them any worse. Correg is murder on the body. When I first started taking it I had to be admitted a number of times for becoming severly hypotensive. Starting on the lowest dose, they had me take it while I was still in cardiology to assess any immediate effects. I started at 2.5mg. That caused my bp to crash. I dropped to 51/26. Realize also that I had suffered from uncontrolled hyertension for years. Evern with my beta blockers and vasodialtors they couldnt get my top end much under 150. Now a drop like that would be like a normal person jumping off the empire state bldg! WHile I was being monitored in the hospital after the crash one thing was appearant. I could breathe much easier. It was finally diagnosed the my CHF causes edema. Since it wasnt manifested in my legs or feet it went unnoticed. I get pulmanary edema. This causes a fluid buildup in my abdomen at the diaphrem. This causes a “girdle” effect that restricts my ability to draw in ait. It would feel like I barely got a teaspoon full at a time! Along with the correg I started on diaretics. The milder ones didnt help so we ended up at 40mg lasiz and 12.5 mg of spirolactone. The spirolactone has another function. It causes the body to load pottasium. On the lasix i would become depleted and the spirolacton helps relieve that. After a few weeks my body did a 360 and started to handle the correg. Mt cardio kept wanting to bump it up until I was over double the daily max. He kept patting himself on the back when my EF climbed up 25%. I think he felt he earned a nobel prize for his work the way he acted. While I was in for one of the bouts of bladder infection they lowered the dose(thats what I went in for-low blood pressure episodes). Now I take the max dose 25mg 2X/day. I have to monitor my bp. If its under 110 I cant take it or my BP nosedives again. Ive gone 2 days at a time where I couldnt take it and my BP stayed at 110/66.
The lipitor can cause deep bone aches and pains. My level of pain in those areas is so severe it doesnt make it any worse. AFter having 2 major MIs) the first was 100% and required a lifeflite!) I will do what ever it takes to keep my choestorol in line. For the 1st time in 20 years its where it should be.
Whatyou said worries me. Ive had a number of instances where a new dr tries to change my meds hoping for a miracle. Right now the are demanding that I contineue the digitalis and synthroid. Both cause me angina attacks.
Again its a bit vague but it confuses me as well. there isnt a day Im not worried because of the meds I take and the drs I get to see. Due to so many bad experiences I havs hospital related PTSD.
Patricia, I would be elated if I could just up and trash all my meds. nothing would make me happier. When I take my morning meds(thats when i take most) I have to plan for a good hor to allow my body to acclimate or Ill have probl;ems all day.
To add to the fun, the problem I had with the “coma” they had me in is severe shortterm memory problems. I have to be ever so carefull not to doulble take a med. I can sit there not even an hour afterwards and wonder if I took them or not. With most it isnt serious but something like the correg and be deadly for me.GuestMarch 15, 2009 at 10:20 pmWell thats a real horror story…..it sounds like Dr. House got ahold of you!!
with some of your drugs you’ve got potential for major drug-drug interactions…..gemfibrozil and Lipitor for instance
Albuterol and coreg is a major drug-drug
some of your weakness could be due to some of these interactions.
Why not go to
http://www.drugs.com/drug_interactions.html
enter your drugs and read for yourself. This is really mind boggling for me.
PatI was recovering after angio plasty following a 90+% blockage at the Cinci VA. They decided to play games with me and held me at a coma level with atavan. When my wife found me I was laying on a bed with only a towel over my groin and had about 12 lines coming into me. My wife got a call late at night. My IV had infiltrated and they were having trouble due to the number of meds they were giving me. They asked her permission to put a shunt in my shoulder. I dont know why they even asked her but thankfully she refused.. She tried to get me released while I was out and they said she had no say in the matter even tho she is my power of attny. They obviously wernt monitoring me close enough as I had another 100% due to a clot. Whether it was due to a bad IV or from the stent Ill never know. They dont know how long I was out before they found me. I awkoe a week later at UC. They had to gradually wean me from the atvan as I was going into seizures. When I awwoke My memory was shot. I didnt even recognoze my own wife. I also couldnt talk and they had to bring in a speech pathologist. In a few days I had most memroies back and could talk. I couldnt walk. My legs were on fire due to my knees being strapped to the bed rail while I was comatose. It seem to have killed the nerves. It was a month before I could walk. Ever since I have had constant pain in my legs from the hips down. Also my knees are shot there is no connective tissue left. I cant do a a knee replacement due to my heart and also PAD. My circulation would make healing difficult. I alost ahd a huge scab on my arm. One of the first people I remember were from CDC Atlanta. I had some kind of raging infection they couldnt isolate. It turned out the scab on my arm was MRSA, that was before they had a name for it.
After I was discharged i spent almost a year unable to sleep due to breathing problems. At first they thought it was from pneumonia caused by mt being tube fed down the wrong pipe while unconscious. I developed double non viral pneumonia. After being in out out af the hospital at least once a month they finally dianosed me with CHF. At that time my EF was less than 13%. And they couldnt figure out why i had breathing issues!. After starting on correg I have increased my EF to close to 40%. Thats all artificial. If I quit the correg today it would drop again.
Heres what I take. Some of these are more than 1X/dayVistoril 75mg/bedtime-sleep
Plavix 75mg/daily
baby asprin 81mg Am
Carvedilol 25mg 2Xdaily
Nitro .4mg PRN
Lipitor 80mg bedtime
Gemfibrozil 600mg 3X day
Lasix 20md daily
Sprronlactome 25mg daily
lisinopril 20mg daily
Ducosate 2 tabs 2X daily
prilosec 20mg am
Flunisloode 2puffs 2X, ALbuterol 2puffs 2X daily
Ipratropium bromide 2puffs 2X daily
Isosobride dinitrate 10mg 2x day
allipurinol 300mg daily
metocloprimade 10mg 3X daily
synthroid 12.5mg/day
amitriptyline10/mg 2/bed time
remeron (?)1 /bed time
niacin
Trazadone 300mg at bedtime-sleep
Flexeril 10mg 3x day
Morphine ER 100mg 3Xdaily
Morphine 30mg3XdailyAs of today I am so week due to my heart that I can barely walk 100′ Also with the pain from my lower back down I cant stand more than a few minutes at a time. Since having an edema attack in my left foot 10 months ago, the feeling never came back. It so numb it is as if I haad a novacaine injection. I have to be doubly careful now. Not only do I have PAD(the dopler showed 52% left leg and 58% right) healing below my knees is iffy. Add to that my VA nurse called me on Xmas eve to inform me that my latest blood work showed type 2 diabetes.
I know its kind of vague. What happened to me at the VA is always going to be a mystery. All I know is what Ive pieced together 2nd hand from my wife and the dr at UC med center.
Thats about it in a nut shellGuestMarch 15, 2009 at 5:08 pmBritt……40 pills a day? CHF……whats your ejection fraction. Where is the pain coming from that you’re on so many pain meds?
Not trying to be nosy but honestly why not take all your records to Cleveland where they have the best Cardiologists in the country and some of the best Urologists…….Maybe there’s a better solution. This all sounds pretty crazy to me……..PatThe top of the cath was a metal thing with a screw in the center. I had 2 bags of saline flowing from a gravity feed at the same time with 1 line going to a waste bag on the floor. I wonder how I could void any fluid at all as there is only the one path in and out. The spsms I was having actually felt like my bladder was filled to the bursting point. I dont see how it worked unless there were 3 seperate tubes. All I know is that the cat was by far the worst part of the entire experience. I truly dread going thru it again.
One other thing made it tough on me. Im a chronic pain sufferer. I take a high level of pain meds daily. It was on my records as my pain dr workes out of that hospital. The dr had me on a morphine pump for pain. What theygave max was less than 50% of my normal dose. They also gave me urapas. I was fortunate in that my pain dr happened to be at the hospital and saw I had been admitted. he was able to straighten them out. I still had to suffer needlessly for over a day.
I truly dread going thru that every 90 days. Thats a short time frame. If the cancer does come back, how much can it grow in 3 months?Not sure why the 3 lines, but that may be because of a restriction where the urethra passes through the prostrate? Or other? After my TURB, I had only one tube going out to a leg bag and the Doc left it in a week to allow better healing of the bladder wall. I’m told 3-4 days may be the norm, but others can chime in here. It could be they needed to do something different ‘cuz you were so restricted. At any rate, the thing you now may need is an enlargement of the urethra by reducing the prostrate size. This is done by different means, depending on individual patient needs.
Overall, it sure sounds like you need a second opinion. As I said before, if the GOV’T told me something, I’d sure get one. I found that out when I was in the Service myself. Even those on this board dealing with private physicians often benefit by a second set of eyes looking at a problem.
Bob
T1 G3
Age 66
DX April 2008
TURB April 2008
Last BCG (#15) April 2009Im still worried about my prostrate. Having it enlarged is not uncommon in my age group. Im 55 now. Also do to health problems I havent been sexually active in years, The fact that he did get the probe past the prostrate make ant difference? Or would it have passed no matter what? I was knocked out so have no memory of any pain from it. Also I was really worried about problems once the catheter was withdrawn I had one years back after a MI. It was only in over nite. but it really hurt to urinate for weeks afterwards. This time I not only had that cath in, but it was huge with 2 lines in and one out. I suffered from acute spasms while they were irragating me. They would get so bad I would jump up and have to force the urine out, After evacuating my bladder I was Ok for an hour owr so. I was terrified it would continue.
As far as this turning more serious Im terrified. I have severe CHF and as such not a good candidate for extensive surgery.Britt, I also had a staph infection some 12 months prior to discovery of the tumor…done through ultrasound. But your experiences remind me of what one can expect whenever the Gov’t. becomes involved…not a welcome sight, I’m afraid. :ohmy:
As for your current “Urgency” issues. I, too have a bit of similar conditions, but if you’re drinking a gallon of a caffeinated drink each day, you ARE going to need to pass all that liquid VERY often. The caffeine will be the greatest cause of your “urgency”, so if you can switch to water, I think you’ll have less urgency. And your diuretics will add to this urgency, of course. Seems like you also suffer from an enlarged prostrate…this will further add to these symptoms.
Bob
T1 G3
Age 66
DX April 2008
TURB April 2008
Last BCG (#15) April 2009A urinalysis can suggest a UTI. The only test that can diagnose it is a urine culture. A CBC (blood test) might be useful to decide if a UTI is actually pyelonephritis (kidney infection).
All imaging studies have limitations on the size of tumors they can pick up. Imaging studies like CT scans have great resolution but could certainly miss bladder tumors that would be seen through a cystoscope. Ultrasounds are better than CT for some evaluations and worse for others. For a bladder tumor be visible on ultrasound it has to be large enough to stand out from the bladder wall.
-Warren
TaG3 + CIS 12/2000. TURB + Mitomycin C (No BCG)
Urethral stricture, urethroplasty 10/2009
CIS 11/2010 treated with BCG. CIS 5/2012 treated with BCG/interferon
T1G3 1/2013. Radical Cystectomy 3/5/2013, No invasive cancer. CIS in right ureter.
Incontinent. AUS implant 2/2014. AUS explant 5/2014
PediatricianWhen I did my 2 follow-ups with the uro. he showed me before and after pictures. I really dont know what I was looking at except that the 1st was darker colored on the lining and the next was a pink color. All that I know is that he informed me that it was noninvasive and that he was able to remove all of it. I have had nothing done since, not even blood work. Except for what was done while I was admitted. Thats begining to worrt me. With my history of bladder infections how suseptible would I be following the sr\urgery? They did give me cipro when I was discharged. I havent seen anyone since my 2nd follow up in late Jan.
I have notice lately an increase in urinating. My bladder is usually fairly full when I need to go. I do have a “sense of urgency” every 2 hours or so. I do drink a lot of liquids. I go thru an average of 1 gallon of sweetened tea a day. On top of that I take 2 diuretics. Lasiz and spirolactone. At time my urine feels “thich” Almost syrupy comming out. There doesnt seem to be any abnormality ineither color or smell. Also since Nov of 07 I have had no more clots pass or tinged urine(except for a couple days after the procedure. Again all these thing keep comming to mind and after my waife told me our pharamists story about VA it really hit home. I had put it on the back burner and had almost forgotten about it!GuestMarch 15, 2009 at 3:12 amCIS will not show up on anything.
Do you have your pathology report? How do you know he got it all? Any TURB and diagnosis of bladder cancer requires continuous check ups at 3 months. A re-turb is also the norm these days as seeding will happen if all margins are not gotten.
The lack of vigilance on the part of the doctors is kind of alarming to me. A CT should be done, blood work, FISH test, and a bone scan. But then the VA isn’t big on spending money on their vets are they?
What came first the chicken or the egg? Perhaps the bladder infections were a sign of an aggrevated bladder with cancer….then when you don’t listen to that it sends out blood…..sometimes microscopic…..then when you really don’t listen …hemmoragic. The last got my attention. I’ll bet a high percentage of us have done the same thing…..who ever heard of bladder cancer?
PatHi, I had an ultra sound and ct scan and both were negative for tumor, they were both wrong. Upon scoping me a couple of days later they found five tumors. I guess the only way to be sure is to go in and look. Rocky
Hi Britt,
Don·t know if ultrasound can show up infection, but my tumour was finally diagnosed on ultrasound and it showed up as clear as anything. Since TURBS haven·t had any more ultrasounds, just cystoscopes, as they show any changes in the bladder lining more clearly. Hope this helps,
Regards, DianeSign In to reply.