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Re-Occuring BC
I have had 4 bladder cancer surgeries in the last year. They are low grade but the surgeon wants to do BCG since it is re-occuring. I have read about the side effects, any advise please!!!
Linda17 Replies-
HI PAT,
THANK YOU FOR YOUR REPLY. I AM NOT TAKING AN BCG TREATMENTS AND NEVER ANY CHEMO. THE DOCTOR WANTED TO START THE BCG TREATMENTS IN JUNE WHEN I HAD MY 4TH RE-OCCURANCE IN JUNE AND I ASKED TO WAIT TILL SEPTEMBER (PRAYING) AND THEN IF (AND THEY WILL NOT) I WILL START BCG.
I DO NOT TAKE ANY MEDICATIONS FROM THE DOCTOR EXCEPT 30 MG OF BLOOD PRESSURE.
THIS IS A GREAT SITE AND I THANK YOU AGAIN FOR YOUR ANSWERS IN HELPING WITH MY QUESTIONS.
LINDA
LindaHi Linda……just didn’t want you to overdo it with the capsule variety….fresh food variety will never hurt you.
Just for general knowledge…Too much Vitamin C can interfere with the body’s ability to absorb copper….too much phosphorus inhibits absorption of calcium….Vitamins A D & K are not eliminated quickly by the body and can easily reach toxic levels. (K by the way is a clotting agent…its one you have to watch if you’re on warfarin)….But it doesn’t sound like you’re doing mega doses of anything. If you are doing any kind of treatments like BCG or Chemo check with your doctor about any supplements.
I sure wish the C was helping my eyes!!!…the print keeps getting smaller and smaller!! Pat
Hello Linda,
I do have a thought, and please don’t take it the wrong way.
When you type in ALL CAPS LIKE THIS it is not only difficult to read, but looks like shouting on the screen. Studies have shown that readability is optimized when words are printed in upper and lower case. That’s why you’ll never see a book or magazine THAT LOOKS LIKE THIS.
There is an article about readability here:
http://planetoftheweb.com/components/promos.php?id=182&channel=GraphicsTwo of the points it makes are:
Display lines set in all capital letters are difficult to read. Body copy set in all caps is totally illegible.
Words set in all caps are read letter by letter. Reading is approximately 15% slower in words set in all caps.
I’m telling you this because now that I’m 50, my eyes aren’t as good as they used to be, and I want to be able to read every one of your posts.
And I, of course, wish you nothing but excellent results between now and September.
Best,
Zach
“Standing on my Head”––my chemo journal
T3a Grade 4 N+M0
RC at USC/Norris June 23, 2006 by Dr. John Stein
HI PAT,
TAKING VITAMIN C, E, COQ10, GARLIC, ONE A DAY MULTI, GREEN TEA, BABY ASPIRIN AND MILD BLOOD PRESSURE AND BETA CAROTENE. I DRINK CRANBERRY JUICE, V8 SPLASH, A CUP OF HOT GREEN TEA, APPLE AND ORANGE A DAY AND FOR BREAKFAST BROCALLI AND FRESH CAULIFLOWER. IN THE AFTERNOON AN APPLE AND A SMALL GLASS OF GREEN TEA IN A BOTTLE.
I FEEL GREAT, JUST HAD EYE EXAMINE AND MY EYES ARE IN EXCELLENT HEALTH FROM WHAT THEY WERE 3 YEARS AGO. I ONLY NEED READING GLASSES NOW.
I JUST HOPE AND PRAY FOR A MIRACLE THAT IN SEPT WHEN I HAVE THE SCOPE—-I AM FREE.
YOUR THOUGHTS PLEASE???
LINDA
LindaLinda….don’t OD on the vitamins. What are you taking? Pat
HI WENDY,
I DO HAVE RE-OCCURANCE BC (4 IN A YEAR), BUT ALTHOUGH THE SURGEON WANTS TO START THE BCG TREATMENTS, I AM WAITING UNTIL SEPT. AND HAVE A SCOPE AGAIN, DOING A LOT OF PRAYING AND EATING HEALTHY AND 9 VITAMINS DAILY ALONG WITH A LOT OF FRESH VEGGIES AND FRUIT. I FEEL FANTASTIC, NO BLOOD EVEN IN URINE UNDER MICROSCOPE.
I AM NOT GIVING UP HOPE,,,,, I CAN CONQUER THIS AND WILL.
KEEPING THE FAITH
LINDA
Linda
Hi,
Rosie is referring to the latest news, which has the US adapting European guidelines for non-invasive bladder cancer, namely an instillation of chemo post-TUR, re-TUR for high grade tumors and BCG for high grade tumors using maintenance therapy for CIS.
http://www.medicalnewstoday.com/medicalnews.php?newsid=74465 Report On Proposed Guidelines On Bladder Cancer For Non Muscle Invasive DiseaseWebCafe’s page on superficial blc has more info:
http://blcwebcafe.org/superficialblca.asp and about intravesical chemotherapy:
http://blcwebcafe.org/intravesicalchemo.aspThe BCG info is here: http://blcwebcafe.org/bcg.asp
There is a lot to learn and the territory is fraught with complications. But please don’t despair as this can be a very survivable diagnosis, especially low grade tumors. Recurrence is a big problem…the instillations give short term benefit (up to 2 yrs delay at best), but many find this worth it.
All the best to you,
Wendy
Linda, I highly recommend you ask your urologist about chemical treatment just after TURB by Mitomycin or” Was it done? If not, why not try it before the BCG routine? You can even give him some of the comments and stats from this sight. I have no confidence in BCG keeping low grade papillary from recurring based on my experience of 21 BCG treamtnes and the long term tests sighted on bladder cancer web cafe. Rosie Ambs
Linda,
Hey. ROSEMARY here. I know it’s confusing. ;D
You should be fine to go to work the day after your BCG. The only reason I even took my BCG day off from work, was because you have to bleach the toilet for 6 hours with each void.
Take care and let us know if we can answer questions, or help further.
Your BC friend,
Rosemary
Rosemary
Age – 55
T1 G3 – Tumor free 2 yrs 3 months
Dx January 2006
Mystic Linda, I finally noticed your name is Linda but your screen name Mystic. :D If you have read this board you will see that the newest treatment has to do with 1 instillation of some chemical preventative just after TURB. Most in the United States that received a chemical preventative immediately after TURB is Mitomycin. Wendy said many in Europe instill another chemical Epicurem or something like that. I have had 4 recurrences of papillary low grade blc but would have probably had a lot more surgeries if I had not done watchful waiting when a new papillary growth appeared. It seems these low grade papillaries are not very threatening to become aggressive nor invade but do recur often, so I let mine slow grow before removal. If you are within the first two years of this bladder cancer journey, you are still learning the growth pattern of you papillaries. If I understand your posts correctly, you have had some recurrences but also some new growths that were removed. Just pay attention to the type and the grade and you will then get a more predictable history. For instance, I had a TURB done after a couple of spots were seen during a cystoscopy. After the TURB, I got a copy of the operating room and the physician report. The physician report stated that one spot disintegrated when it was touched by the instrument/ The other spot was too small for a sample to send to pathology. So I went through a surgery that told me nothing except possibly to not act so quickly for treatment. Does your pathology report tell of each growth removed and it’s grade? Do you have all written reports so you can put together the pieces of the puzzle for your particular blc history? I recommend all do. Rosie Ambs
Mystic, you are getting replies from two different woman with a name. I am Rosie Ambs who asked about your type and grade of bladder cancer, sugeries and pathology. Both Rosemary and I have had BCG treatments but have had different experiences as to the side effects. I had very minor urgency and a bit of burning if I didn’t drink enough water after BCG treatments. Unfortunately, Rosemary has had , terrible and long lasting side effects but stated in her last post to you and all “I think I was his first patient in 8 years to have any sort of aberation in side effects. I doubt you’ll have any thing to worry about with side effects.”
This Rosie, however, still wonders if you had one instillation of mitomycin immeidately after TURB to prevent recurreces before having to go the BCG route with a low grade papillary. Rosie Ambs
Linda,
I agree with the treatment protocol. My protocol for treatment, however, was to hold the BCG for 2 hours. I wonder why the difference…..?
If you have any questions or problems about BCG’s please feel free to ask. My Doctor tells me that the norm is to have a little cystitis and basically no problems. I think I was his first patient in 8 years to have any sort of aberation in side effects. I doubt you’ll have any thing to worry about with side effects.
Please let us know how you do, and if you have any questions.
Your BC friend,
Rosemary
Rosemary
Age – 55
T1 G3 – Tumor free 2 yrs 3 months
Dx January 2006
Mystic,
Were the 4 surgeries for bladder cancer in the past year recurrences in the same place or were the tumors in various areas of the bladder? Were the bladder cancer surgeries a TURB – transuretheral resection of bladder under anesthetics and then the biopsy sent to pathology or were they a burning off of “spots” and no pathology? It does make a difference if the tumor is recurring quickly in the same place or if there are “spots” in other parts of the bladder. What type and grade of bladder cancer do you have? I can advise you best once you can answer those questions. If you have low grade like TA (papillary) Grade 1 or 2 – TCC and no CIS – carcinoma in situ – BCG will not be effective according to statistics and my personal 7 years experience (and 4 recurrences). If, however, you match the stats for BCG treatments, I can say, I had very little side affects when I had my ill advised 21 BCG treatments 5 years ago.
Rosie Ambs
Linda,
Please let us know what you find out. Lots of us here have been through this. I hope it goes well for you today.
Your BC friend,
Rosemary
Rosemary
Age – 55
T1 G3 – Tumor free 2 yrs 3 months
Dx January 2006
PS
Are you worried about the BCG’s? Some people have little to no side effects. In fact, I think most have little or no side effects. You should be fine.
Rosemary
Rosemary
Age – 55
T1 G3 – Tumor free 2 yrs 3 months
Dx January 2006Sign In to reply.
