BCG intravesical therapy
garyl
Comments
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I also have an in situ cancer of the bladder, but mine is high grade. I was diagnosed in June, had a tumor removal in August, had more tissure moved in October (that started out as a biopsy).
I thought that I was facing bladder removal; most people with whom I had communicated through this network advised me to have it out. Then someone I spoke to in California, who had the neobladder surgery, advised me to hold on to my natural bladder as long as I have realistic hope of treatment.
I now have a Urologist/Oncologist in Atlanta at Emory whose specialties are neobladder surgery and cancerous tumors of the bladder. He doesn't think that I need to think about having my bladder out at this time.
In December I'm going to have a "roller-ball" technique done, which cauterizes the places that need it. I'll then have a treatment with what probably is the Mytomicin you're talking about (all I can remember is that it begins with an M). After that I will have BCG and Interferon treatments every 2-3 months. I know nothing of the pain, because I don't care. I spoke to someone who has adjusted well to a neobladder and he has assured me that while life goes, it is NOT the same thing as a bladder.
My advice to you is to get yourself to a major cancer center and a specialist recognized in that field and then put your trust in him or her. Whatever pain involved will seem inconsequential in comparison to the inconveniences of a cystectomy or the metastisizing of the cancer.
Please keep me posted as to what's happening.
paulf0 -
Hi Gary
I don't know how old you are but I also have bladder cancer that has not invaded the muscle wall. I am female, 58 and currently on a course of BCG. I have had 2 treatments so far and they are painless, quick and really uneventful. I am very tired following the treatment but am not sure if it is mental or not. If the next 4 treatments are like this, it is a breeze. The other alternative for me was to remove my bladder. Good luck.0 -
Hi Gary,
Carcinoma insitu is cancer of cells in the lining. It is not a type. If you have bladder cancer you either have TCC, transitional cell carcinoma, RCC, Renal cell carcinoma, or CCC, Clear cell Carsinoma.
You may want to chech out Bladder Cancer Cafe at http://blcwebcafe.org/
Jo Dell0 -
I think we would all like to consider bladder tumors as being superficial. However, they have a tendancy to grow and often through to your muscles and lymp nodes. I had my bladder removed 10 months ago along witht he prostrate. They built me a new bladder from the lower inestine. I can urinate just as in the past and there is no pain. One of the best in this filed is a Dr. Skinner who is the Head of Urology at the USC/Norris cancer center. This center can be reached at 323.865.3000 or via e mail at www.uscnorris.com.I will never regret having this procedure. Recovery time is roughly four months. I will not kid you, this is not a simple operation. Their success rate is wonderful. This same office will refer you to someone in your area who is familiar with the procedure and trained under Dr. Skinner. Numerous celebrities in the LA area have sought out his expertise.0
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How are you doing today. IMilitary said:I think we would all like to consider bladder tumors as being superficial. However, they have a tendancy to grow and often through to your muscles and lymp nodes. I had my bladder removed 10 months ago along witht he prostrate. They built me a new bladder from the lower inestine. I can urinate just as in the past and there is no pain. One of the best in this filed is a Dr. Skinner who is the Head of Urology at the USC/Norris cancer center. This center can be reached at 323.865.3000 or via e mail at www.uscnorris.com.I will never regret having this procedure. Recovery time is roughly four months. I will not kid you, this is not a simple operation. Their success rate is wonderful. This same office will refer you to someone in your area who is familiar with the procedure and trained under Dr. Skinner. Numerous celebrities in the LA area have sought out his expertise.
How are you doing today. I have heard good things about Dr Skinner and wll consider my husband going for a second opinion.0 -
BCGCanadoll said:Hi Gary
I don't know how old you are but I also have bladder cancer that has not invaded the muscle wall. I am female, 58 and currently on a course of BCG. I have had 2 treatments so far and they are painless, quick and really uneventful. I am very tired following the treatment but am not sure if it is mental or not. If the next 4 treatments are like this, it is a breeze. The other alternative for me was to remove my bladder. Good luck.
Hi,
I am new here but I had bladder cancer too it was the TCC type. Three of the biopsys or tumors were cancer the other one or two weren't. They didn't invade the muscle wall, but went through the first layer of bladder into the second or in between there not sure how you say that but she showed me the pictures of it today. I had two surgerys done as one got it all from the Bladder but she didn't have the equipement here to check out the tube and kidney they were worried about so I had to go to Springfield Illinois for the second operation to check those out.
I am now scheduled to start the BCG treatments next Wednesday for six weeks every Wednesday and then go on with the checkups of the bladder in her office every three months for 2 years then every six months for another 2 or 3 years I forgot how long the every six months lasts.
I was glad to find these postings to know more what to expect when I go in Wednesday for my first BCG. I am glad my daughter who had breast cancer sent me to this site for survivors. I am finding information here to help me along the way.
Thank you0 -
QuestionPris42 said:BCG
Hi,
I am new here but I had bladder cancer too it was the TCC type. Three of the biopsys or tumors were cancer the other one or two weren't. They didn't invade the muscle wall, but went through the first layer of bladder into the second or in between there not sure how you say that but she showed me the pictures of it today. I had two surgerys done as one got it all from the Bladder but she didn't have the equipement here to check out the tube and kidney they were worried about so I had to go to Springfield Illinois for the second operation to check those out.
I am now scheduled to start the BCG treatments next Wednesday for six weeks every Wednesday and then go on with the checkups of the bladder in her office every three months for 2 years then every six months for another 2 or 3 years I forgot how long the every six months lasts.
I was glad to find these postings to know more what to expect when I go in Wednesday for my first BCG. I am glad my daughter who had breast cancer sent me to this site for survivors. I am finding information here to help me along the way.
Thank you
Had a biopsy on Feb 5th at which time my doc removed a small cm "low grade" bladder tumor. I am just a little concerned that he has not elected to start BCG and actually told me based on the tumor being so innocuous that I didnt need it. any cmments please?0 -
How much Blood is to much with this Therapy?Canadoll said:Hi Gary
I don't know how old you are but I also have bladder cancer that has not invaded the muscle wall. I am female, 58 and currently on a course of BCG. I have had 2 treatments so far and they are painless, quick and really uneventful. I am very tired following the treatment but am not sure if it is mental or not. If the next 4 treatments are like this, it is a breeze. The other alternative for me was to remove my bladder. Good luck.
Hi,
Just had my 5th treatment today and told the Doctor about a little blood in the urine the last hour and a half or so last week. Today it started 2 hours after te treatment instead of four or four and a half, but still no clots and not except when urinating. It isn' turning the water red or anything like that but is it normal??? The four one I checked on today and she said it was normal. Today it is more but I think still OK and wondering did that happen with others who had the treatment? The Doctor said the 4th time the blood and other side effects means it is working. Of course the Doctor closes before this ends so will just have to watch it unless it gets a lot worse I think?
I know you have to call if you have clots or to much blood but the increase I think is normal since she said the effects do build up just wondering with everyone else who had the treatment if this happened to them?0 -
BCGPris42 said:BCG
Hi,
I am new here but I had bladder cancer too it was the TCC type. Three of the biopsys or tumors were cancer the other one or two weren't. They didn't invade the muscle wall, but went through the first layer of bladder into the second or in between there not sure how you say that but she showed me the pictures of it today. I had two surgerys done as one got it all from the Bladder but she didn't have the equipement here to check out the tube and kidney they were worried about so I had to go to Springfield Illinois for the second operation to check those out.
I am now scheduled to start the BCG treatments next Wednesday for six weeks every Wednesday and then go on with the checkups of the bladder in her office every three months for 2 years then every six months for another 2 or 3 years I forgot how long the every six months lasts.
I was glad to find these postings to know more what to expect when I go in Wednesday for my first BCG. I am glad my daughter who had breast cancer sent me to this site for survivors. I am finding information here to help me along the way.
Thank you
i also am having my treatments every Wednesday. I have had two so far and they are not really bad so far. I am female and 74 this September. Started out with cancer in the right kidney and it was removed with the tube and lymph nodes Feb 10,2010 waited for my three month checkup to get a clean bill of health, but instead I had developed bladder cancer. I had never been sick except for gallbladder rmoval in 93. December was my kidney diagnosis. Take care and you will go thru this and this site is really nice to have to connect to others who are going thru the same things.
Best of luck. Fran0 -
BCG treatments
I wrote to Fran on another thread, but here's a cut and paste from it that may be helpful:
Psychologically, the first one was the worst. It was a fear of the unknown, and add to it some horror stories I read on the Internet -- people having bad reactions. I guess I would describe each treatment as "uncomfortable" but not painful. The worst part was the insertion of the catheter. The actual insertion of the BCG into my bladder was painless. I experienced slight discomfort when the catheter was removed, but the discomfort was tolerable because I knew the procedure was over. The hour and day afterward (the rotisserie turns you have to do, bleaching the toilet, etc.) was just a hassle, but no big deal.
I didn't experience fatigue, burning, or excess peeing.
One bit of advice I've given a lot of people (men), if you go in for a cystoscopy, get a prescription beforehand for Phenazopyridine (200 mg) and take one ASAP after your procedure. Otherwise, you'll feel like you're peeing razor blades with a hot sauce chaser. The pill is orange and will make you pee orange. Ask your doctor if this would help with the burning. Again, I DID NOT experience burning from BCG treatments. Any men that read this post -- if your doctor performs a cystoscopy without prescribing this medication, he/she is INHUMANE!0 -
My husband had bladder
My husband had bladder cancer in 2001. He was diagnosed, as you, with carcinoma in situ. After the doctor removed his tumor he started BCG for 6 weeks. He has been cancer free since. After he had his surgery, his doctor made him stay in the hospital and flushed his bladder for 24 hours. He believes that is what saved him. Good luck.0 -
BCGPris42 said:BCG
Hi,
I am new here but I had bladder cancer too it was the TCC type. Three of the biopsys or tumors were cancer the other one or two weren't. They didn't invade the muscle wall, but went through the first layer of bladder into the second or in between there not sure how you say that but she showed me the pictures of it today. I had two surgerys done as one got it all from the Bladder but she didn't have the equipement here to check out the tube and kidney they were worried about so I had to go to Springfield Illinois for the second operation to check those out.
I am now scheduled to start the BCG treatments next Wednesday for six weeks every Wednesday and then go on with the checkups of the bladder in her office every three months for 2 years then every six months for another 2 or 3 years I forgot how long the every six months lasts.
I was glad to find these postings to know more what to expect when I go in Wednesday for my first BCG. I am glad my daughter who had breast cancer sent me to this site for survivors. I am finding information here to help me along the way.
Thank you
Hi,
I also have bladder cancer and just finished my 6th treatment every Wednesday. The last one was Aujust 25th. Now I will find out how it went on Sept.9th. I had my right kidney removed in Feb 2010 and in June they found the bladder cancer. The only side effects are being more tired each treatment. But I also have to go about every two hours night and day but that is getting used to having one kidney. We are all on the Cancer Journey I call it. There are so many new treatments now. I will do the three month checkups also. Enjoy each and every day.
Fran0 -
Hi fathersson:fathersson said:Question
Had a biopsy on Feb 5th at which time my doc removed a small cm "low grade" bladder tumor. I am just a little concerned that he has not elected to start BCG and actually told me based on the tumor being so innocuous that I didnt need it. any cmments please?
I too have
Hi fathersson:
I too have bladder cancer. After TURBT of my grade 3 non-invasive tumor my urologist recommended Cystoscopy every three months for a year and than every six months for 5 years. After doing quite a bit of research, I opted to get a second opinion from an Oncologist. We went over the lab results and I had an abdominal scan with contrast which showed that I did not have any cancer in ureters or kidneys. To make a long story short, I did opt for BCG therapy (once a week for six weeks) and than maintenance therapy after that(once a week for three weeks every three months for a year). My oncologist is part of something called Cancer Network, or something like that. It is made up of Oncologists and research organizations from all over the United States. All of the new treatments are shared among members of the group. Now because my tumor was a high grade, research has shown that the re-occurrence rate if about 5-10% at twenty years for my type tumor vs upward of 50% at the five year mark. Just for your information, and May God Bless You, sir, in your personal battle with this ugly monster.
Larry0 -
BCG, Mitmyocin and cysto'sgerryo said:My husband had bladder
My husband had bladder cancer in 2001. He was diagnosed, as you, with carcinoma in situ. After the doctor removed his tumor he started BCG for 6 weeks. He has been cancer free since. After he had his surgery, his doctor made him stay in the hospital and flushed his bladder for 24 hours. He believes that is what saved him. Good luck.
I've had bladder tumors (low grade cancer) for almost 5 years, I've had around 10 out-patient surgeries in the last 2 1/2 years. Cystos every 3 months, tumors every 3 months for the last 2 1/2 years. My Dr. says they are like weeds, you pick one, you get one.
I tried BCG 2 years ago, had one clean check-up, tried mitmyocin about 6 months ago, 0 clean check-up. I'm getting to roller-ball thing next Wednesday as I have over a 1/2 dozen tumors at this time. My health is very good other than these tumors, I'm 62 years old and take no medication at all. If this is what I have to do the rest of my life, I can deal with it. The BCG and mitmyocin treatments aren't that bad, at the end of the BCG I did have some cold and flu symptoms and fatigue but that's about it0 -
BCG TreatmentsJD_smith said:BCG, Mitmyocin and cysto's
I've had bladder tumors (low grade cancer) for almost 5 years, I've had around 10 out-patient surgeries in the last 2 1/2 years. Cystos every 3 months, tumors every 3 months for the last 2 1/2 years. My Dr. says they are like weeds, you pick one, you get one.
I tried BCG 2 years ago, had one clean check-up, tried mitmyocin about 6 months ago, 0 clean check-up. I'm getting to roller-ball thing next Wednesday as I have over a 1/2 dozen tumors at this time. My health is very good other than these tumors, I'm 62 years old and take no medication at all. If this is what I have to do the rest of my life, I can deal with it. The BCG and mitmyocin treatments aren't that bad, at the end of the BCG I did have some cold and flu symptoms and fatigue but that's about it
I was found to have a tumor in my bladder at the beginning of last year. Luckily it did not penetrate the muscle tissue so it was superficial and was taken out. I went through the BCG treatments. It was, once a week for three weeks and every 3 month I would repeat the process for one year.
Once they put it in you need to rotate every 15 mins, to get the meds all over the inside of the bladder walls... fun stuff...LOL and then you can go to the bathroom. Make sure you have the bathroom sterilized after each time. I would have a bucket in the garage with water and bleach and use that instead of the bathroom inside. It is somewhat painful only because you pass some blood clots at times, but other than that, not a problem.
I have since went back and they found another tumor which is still superficial and will be having that taken out in 2 weeks. I asked doctor if I need to go through the BCG treatments again and my doctor said he did not think so. Once he takes it out he will put something in my bladder for it and I should be fine. I will have to have a cysto-scope twice a year for a while and then once a year for the rest of my life. I guess that is a small price to pay...
Question for all of you: The bladder cancer, was it the first cancer they found in you? I had cancer of the kidney 5 years ago come this February 2011. Then two years later they found it in my bladder. I was wondering if any of you had cancer somewhere else before they found it in the bladder.
I hope you do not mind me running on it is just nice to be able to talk to others in the same boat as me...
Gene0 -
BCG one more timeJD_smith said:BCG, Mitmyocin and cysto's
I've had bladder tumors (low grade cancer) for almost 5 years, I've had around 10 out-patient surgeries in the last 2 1/2 years. Cystos every 3 months, tumors every 3 months for the last 2 1/2 years. My Dr. says they are like weeds, you pick one, you get one.
I tried BCG 2 years ago, had one clean check-up, tried mitmyocin about 6 months ago, 0 clean check-up. I'm getting to roller-ball thing next Wednesday as I have over a 1/2 dozen tumors at this time. My health is very good other than these tumors, I'm 62 years old and take no medication at all. If this is what I have to do the rest of my life, I can deal with it. The BCG and mitmyocin treatments aren't that bad, at the end of the BCG I did have some cold and flu symptoms and fatigue but that's about it
Since my last post in September, I've had the roller-ball treatment for about 6 tumors, and my cancer has gone from low-grade to high-grade. I've decided to do the BCG again and I just finished treatment #4. I've got to believe it's working this time because it's kicking my butt. The fatique is really bad this time, and I've experienced blood (not a lot) burning and clots but mostly the fatique. I stayed home from work today, my arms feel like they weigh 200 lbs. I also have joint pain and body aches. If this works (and I believe it will) it's all worth it.
God bless you all.0 -
CIS (Carcinoma in Situ)JD_smith said:BCG one more time
Since my last post in September, I've had the roller-ball treatment for about 6 tumors, and my cancer has gone from low-grade to high-grade. I've decided to do the BCG again and I just finished treatment #4. I've got to believe it's working this time because it's kicking my butt. The fatique is really bad this time, and I've experienced blood (not a lot) burning and clots but mostly the fatique. I stayed home from work today, my arms feel like they weigh 200 lbs. I also have joint pain and body aches. If this works (and I believe it will) it's all worth it.
God bless you all.
Carcinoma in situ is was one of the most virulent of bladder cancers. It almost always returns and requires strict and careful monitoring. I always advise folks to find the best urologist possible that is well versed in treating bladder cancer and always get a second opinion.0 -
A different kind or cancerbreeze76 said:BCG Treatments
I was found to have a tumor in my bladder at the beginning of last year. Luckily it did not penetrate the muscle tissue so it was superficial and was taken out. I went through the BCG treatments. It was, once a week for three weeks and every 3 month I would repeat the process for one year.
Once they put it in you need to rotate every 15 mins, to get the meds all over the inside of the bladder walls... fun stuff...LOL and then you can go to the bathroom. Make sure you have the bathroom sterilized after each time. I would have a bucket in the garage with water and bleach and use that instead of the bathroom inside. It is somewhat painful only because you pass some blood clots at times, but other than that, not a problem.
I have since went back and they found another tumor which is still superficial and will be having that taken out in 2 weeks. I asked doctor if I need to go through the BCG treatments again and my doctor said he did not think so. Once he takes it out he will put something in my bladder for it and I should be fine. I will have to have a cysto-scope twice a year for a while and then once a year for the rest of my life. I guess that is a small price to pay...
Question for all of you: The bladder cancer, was it the first cancer they found in you? I had cancer of the kidney 5 years ago come this February 2011. Then two years later they found it in my bladder. I was wondering if any of you had cancer somewhere else before they found it in the bladder.
I hope you do not mind me running on it is just nice to be able to talk to others in the same boat as me...
Gene
Yes Gene,
I had Kidney Cancer in 2006, Stage 3B, with the removal of my right kidney. Everything was fine until November, 2011 when a CT Scan showed a mass in my bladder that has been diagnosed as Bladder Cancer and Removed. The doc says that the two cancers are unrelated to each other, but probably caused by smoking in my youth. I'm now 69 years old.
Dave0 -
One bit of advice I've givenspartans71 said:CIS (Carcinoma in Situ)
Carcinoma in situ is was one of the most virulent of bladder cancers. It almost always returns and requires strict and careful monitoring. I always advise folks to find the best urologist possible that is well versed in treating bladder cancer and always get a second opinion.
One bit of advice I've given a lot of people (men), if you go in for a cystoscopy, get a prescription beforehand for Phenazopyridine (200 mg) and take one ASAP after your procedure. Otherwise, you'll feel like you're peeing razor blades with a hot sauce chaser. pneumonia symptoms0 -
All of the new treatmentslawful57 said:One bit of advice I've given
One bit of advice I've given a lot of people (men), if you go in for a cystoscopy, get a prescription beforehand for Phenazopyridine (200 mg) and take one ASAP after your procedure. Otherwise, you'll feel like you're peeing razor blades with a hot sauce chaser. pneumonia symptoms
All of the new treatments are shared among members of the group. Now because my tumor was a high grade, research has shown that the re-occurrence rate if about 5-10% at twenty years for my type tumor vs upward of 50% at the five year mark. Just for your information, and May God Bless You, sir, in your personal battle with this ugly monster. hiv symptoms0
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