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BCG intravesical therapy

garyl
Posts: 1
Joined: Nov 2004

I am currently deciding on a course of treatment for my bladder cancer, called carcinoma in situ. It is called "superficial", but has been progressing some. I have had bladder cancer for 5 years now, but have reached the stage where something more than cutting out a tumor is necessary. does anyone out there have any thoughts they would like to share? I am also thinking about Mitomycin, intravesical treatment. One of the side effects of BCG that conceris me is the apparent likelihood of paid when urinating. thanks for any input

garyl

paulf's picture
paulf
Posts: 14
Joined: Oct 2004

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.

paulf

Canadoll's picture
Canadoll
Posts: 7
Joined: Oct 2004

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.

Pris42's picture
Pris42
Posts: 12
Joined: Feb 2010

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

fathersson's picture
fathersson
Posts: 121
Joined: Nov 2009

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?

papa46
Posts: 2
Joined: Sep 2010

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.

Larry

Fran Chandler's picture
Fran Chandler
Posts: 29
Joined: Feb 2010

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. Fran

Fran Chandler's picture
Fran Chandler
Posts: 29
Joined: Feb 2010

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.

Fran

Pris42's picture
Pris42
Posts: 12
Joined: Feb 2010

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?

AuthorUnknown
Posts: 1563
Joined: May 2006

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 Dell

Military
Posts: 31
Joined: Mar 2004

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.

dukers101
Posts: 14
Joined: Jan 2010

How are you doing today. I have heard good things about Dr Skinner and wll consider my husband going for a second opinion.

Skid Row Tom's picture
Skid Row Tom
Posts: 118
Joined: Apr 2010

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!

gerryo's picture
gerryo
Posts: 50
Joined: Jun 2010

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.

JD_smith
Posts: 6
Joined: Jan 2010

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

breeze76
Posts: 1
Joined: Oct 2010

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

Dave Las Vegas
Posts: 1
Joined: Feb 2012

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.

Dave

JD_smith
Posts: 6
Joined: Jan 2010

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.

spartans71
Posts: 5
Joined: Feb 2007

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.

lawful57
Posts: 2
Joined: Mar 2012

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

lawful57
Posts: 2
Joined: Mar 2012

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 symptoms

i35chica
Posts: 17
Joined: Dec 2011

My husband had two surgeries followed by BCG treatments. It has been a year after second surgery. Today.he had internal exam and all clear. : )

The treatments have been a breeze compared to the chemo my sister takes.

dkinosh
Posts: 1
Joined: Mar 2012

I was finally diagnosed with bladder cancer, carcinoma in situ (CIS), in January 2012. I do not have any tumors that can be removed. The CIS looks like red velvet spots on my bladder wall. This is after about a year and a half of being treated for urinary tract infections that I never had. I am getting BCG treatments from a general urologist who found the cancer after I was referred to him from my gynecologist and the hospital walk-in clinic after several months on non-stop pain starting in August/September 2011. I also am working with a bladder cancer urologist in Hartford CT (who was trained at Sloan Kettering NYC) and had CAT scan that determined the CIS had not spread. They decided that the 1st and only course of treatment at this point is BCG. I started my 6 week treatment program on March 23, and have had 2 treatments so far. I have not experienced any pain in my bladder. In fact, I think the pain that I had for the CIS is gone since getting these treatments. I have had no pain when urinating. I am also on Ditran, which I have been taking since December 2011, so this may also help with pain. My treatments are on Friday afternoons, and I do not have any pain on Fridays. On Saturday and Sunday, I have noticed that if I exert myself too much I have lower back pain on the left side (my CIS is on the left side of my bladder wall). But I just wanted to let you know that I have not experienced any pain when urinating - in fact, since starting BCG, the pain I used to have is gone. Good luck!
(P.S. - I should add that at 57 yrs old female and have never smoked or worked around chemicals. It was determined that this may have caused from second-hand-smoke.

greyfox2012
Posts: 1
Joined: Apr 2012

BCG id the easiest treatment I've ever had. So what if it burns a little when you pee...beats the alternative.

latissimus
Posts: 5
Joined: Apr 2012

I am 72 YO male diagnosed with CIS in April 2012. Had a papillary bladder tumor excised last June. CIS found by cytology testing of
urine as follow-up cystoscopies last August, Sept, and Dec were "negative" for any visible tumor. Have had 5 BCG treatments. Side
effects of urgency, frequency, and pain for approx. 8 hrs only on day of treatment. No side effects thereafter until next treatment.
Will hope to have negative cystoscopy in July and then undergo follow-up BCG treatments as recommended by my urologist. I am
an extreme fitness fanatic and have had no interference with my usual activity level - so far. I have none of the possible exposures
for bladder cancer causes except second-hand smoke. My wife was a heavy smoker - but not in the past 25 yrs. I should mention
that the pain I experience the day of BCG treatment is 5 out of 10 at worse: however. my pain tolerance is quite high, which has
gotten me into trouble in my younger athletic years.

psm
Posts: 1
Joined: Oct 2012

I've been fighting Bladder Cancer for 2 1/2 years now. Just received my first 6 month break. BCG and removing tumors have been my life. It's good to get a break. Don't worry about the BCG treatment, it made me very tired, but the main thing was my joints were very painful. Relief finally, until I go back to the Dr.'s anyway.

georgeblack
Posts: 1
Joined: Nov 2014

I personally admire this site because I got a lot of information from it. I even wrote a post on my blog about it. Thanks

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