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I’ve recently been diagnosed with CIS high grade noninvasive bladder cancer. The tumor that showed positive for CIS was not removed and about ¾ of my bladder is red and angry. I have had urgency & frequency issues for 4 years and it has always’ s been treated as OAB (over active bladder). In the past year I have had lots of pain with urination at times and when I’m really active or sitting for long periods of time it irritates my bladder and causes pain.
I start my first treatment of BCG tomorrow and have read a lot on the forums on how folks react. I’m hopeful that these treatments will help me and that my body responds well.
Thanks for all your post and information as it has helped me understand what to expect.
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Hey RH, glad to hear you’re such a “trooper”, and congrats on the BCG. Enjoy a well deserved break from those weekly fill ups. We’ll be hearing from you in about 3 months, and hope that the report remains positive.
edit: start a new post to keep us on our toes. -
It has been awhile since I wrote. When I last wrote I was half way through my treatments. On January 10th, I completed my six treatments. Over the past few weeks, I have had different side effects from each treatment. The one side effect from each one has been fatigue. Between drinking fruit juices, water, coffee, and going to the bathroom, I spent much time in bed sleeping. On one occasion, I did have a fever and chills. A couple of Tylenol and I was good as new.
After treatment #6, the doctor sat down with me and discussed what was next. In a couple of months I will go in for cystoscopic examination. We will do these every three months for a year. After the third one, if all looks good, I will get three more treatments for preventive maintenance. After a year, we will continue with exams every six months and then every year after that. He did remind me of what happens if the tumors should come back. But, we are not going to think about that.
I hope everyone enjoyed the holiday season and is looking forward to a healthy 2014.
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Sounds all about “normal”. Fatigue and a few other side effects are a good sign that the BCG should be working. When about after? Your URO will let your bladder quiet down-probably 6 weeks and he’ll do another cysto to be sure no tumors are visible. Assuming there are none you’ll probably be on 3 month cycle and maybe BCG? The reason I say maybe because on low grade BCG is often not prescribed. Glad you are doing well! Merry Christmas to all!
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.You’re right rbmc, it has been a few weeks and they have been hectic as always at this time of the year. I had my first treatment back on 6 Dec and I took along my wife. She went in case there any special instructions that she needed to know about. I ran into one problem at the doctor’s office. Before my treatment they sent me a pamphlet about the treatments. I followed the instructions to include making sure my bladder was empty before my appointment. The first thing the nurse does is hand be a bottle for a sample. I managed to wet the bottom of the bottle and it was enough. I learned my lesson. To me, the hardest part was the numbing, after that I was done in no time. The side effects didn’t hit me until Saturday morning. I started with chills, and then a slight fever and a dry throat. A couple of Tylenol and I was fine by Sunday morning. The next two treatments, both on Fridays, went without a problem. The only side effect that I’ve noticed is that I am very tired. That might be from getting up many times at night during the week.
Besides, getting the treatments done, I am still a high school teacher and I am getting my students ready for their final exams. We are now on Christmas break until 2 Jan. Then back to school for a week of review and then the finals.
I am currently half way through my first 6 treatments. I have not seen the doctor since my last TURBT. So, I don’t know what will be coming up next. I guess I will wait and see.
Merry Christmas to all and a Happy and Healthy 2014!
Hi RH……how ya doing out there? How about an update, now that you’re experienced with the BCG routine. Hope there were no out of the ordinary effects. I just got a 12 month scope, all clear, but they are doing a Maintenance BCG (3X) to keep it that way. When done, will you have another Cysto in 3 months to check? You’re in the club, and the door is always open for a visit.
I had my husband go with me the first time I had BCG, as much for moral support as for driving as we are only 5 minutes from the hospital, but after that I went alone. I found that I did have some pain and spasms, especially the first few times I urinated after the instillation. However, I even had spasms after cystoscopy, so it wasn’t unexpected. Sitting in a hot tub helped (in between trips to the toilet). If you find you have problems after your first treatment, you can ask your Dr. to give you a prescription for one of the medications given for “irritable bladder” and take that ahead of time. I used to take that plus a couple of ibuprufen beforehand. They will give you instructions about not drinking for a number of hours beforehand and emptyping your bladder right before the BCG instillation. The nurse also gave me a good tip which was to start drinking a lot of water about 1/2 hour before the 2-hour “holding” period is up and to keep drinking a lot thereafter. This will help flush the BCG out and thereby cut down on the irritative symptoms.
Over time if the symptoms are very severe they can cut the dose back to 1/3rd or even 1/10th and still have the same effect.
Best of luck to you!
Ann
Small TA Grade 1, May-06; recur (2 tiny), same, June-08; TURBTs both times. BCG begun July-08, dosage to 1/3rd May-10, completed treatment December-11. All clear since 2008.Most of us have had annoying but bearable side affects. For me, after about the 3rd or 4th installation I learned I better know where the nearest restroom was within 30 seconds or I would go anyway! That lasted for 12-24 hours. You will likely have burning beside urgency. I think I remember more fatigue also.
It beats the serious chemo side effects for most. IF you have more serious reactions the dosage can often be cut 1/3 or even as much as 1/10 without losing efficacy (I think that is the correct word). There is more about BCG within this web site.
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.I have always gone to my BCG treatments alone! It is about a 20-30-minute drive.
The side effects tend to hit a bit later…After an hour or so you really have to “go” but you bite your lips and get as close to a two-hour retention as you can!
The next few hours are quite uncomfortable…cramping, urgency….And then the next day or so you just feel awfully tired.This is very do-able…You will be fine
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum ModeratorMy husband drove the first round, but after that I drove myself . I think it is a good
idea to have someone with you at first, just to see how your bladder does with BCG, and to listen to the nurse for any helpful hints. Four ears are always
better than two:)Nancy
Nancy S
Ta CIS
dx Ta 11/06
dx Ta CIS 10/07How will I feel after my treatment? The receptionist said it would be okay for me to come alone and drive home afterwards. I am taking my wife along as my driver. It’s not that I don’t trust a receptionist, I just want to be careful. Any suggestions?
First, thanks for your Army service! As you have and will read there are many survivors here. I am 5 1/2 years out free from this disease. Pay attention to your URO, a second TURB is normal (I originally thought it meant he goofed up but, not at all) and BCG will likely destroy it from coming back. The follow ups are essential to stay on top of it should it come back. Keep postig and someone will have a helpful note or answer.
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.Thanks for being here. We are happy to help.
IF it will ease your anxiety any…….. I was sooooooo hoping to be a candidate for BCG. I was so convinced I would have BCG treatments that when I woke up from my second TURB, I told my wife I was going to have BCG. She said “Nope. You are coming back in 5 days for a Bladder Removal.”
But Seriously. I hope you are happy that they caught it early. You are going to live a long time and hopefully become an advocate on this site.
Just the fact that you are going to have BCG, means you have cancer. And you are going to be a survivor.Good Luck
George
Light a man a fire and he is warm for an evening.
Light a man ON fire and he’s warm forever.08/08/08…RC neo bladder
09/09/09…New Hip
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New Man! [/size]Welcome, but as said for everyone here, sorry you have to be here, but you will find a lot of support and also information from all of us that have been exactly where you are right now.
I have had 24 BCG washes, and so far, six years cancer free. I say “so far” because bladder cancer has a reputation of coming back.
You doctor will tell you what to expect, and for most side effects, frequent urination, to some burning etc., there is help to get over the side effects.
Drink plenty of water after the BCG, stay focused on the “big picture”and keep a positive attitude.
Good Luck, and please share your journey with us.Nancy
Nancy S
Ta CIS
dx Ta 11/06
dx Ta CIS 10/07Sign In to reply.
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