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Viewing 9 posts - 1 through 9 (of 9 total)
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    Steve Bellus

    I finally got my pathology from PM in toronto. Can anyone shed some light on the following. T1 high grade non muscular. They are working on a scheduling another TURBT in the next several weeks. Not sure what to expect over the next several months.

    Paul D

    Stbell T1 high grade non muscular invasive is what I was diagnosed early this year, I also had a tumor removed plus some CIS of which they took samples and laser treated I believe. Another Turbt would mean they will go in and have another look and take more biopsy’s just to confirm as they did with me. My treatment is BCG of which I have had 4 of 6 so far and without to much drama and side effects,I will then have another Cystoscopy in October to have a look for further growth plus another 3 maintenance BCG treatments in November, If clear then early next year i will have another Cystoscopy and the journey continues. If they find more cancerous growth then the journey begins again. Hope your journey is as smooth as mine and I have met so many wonderful people along the way.
    Love and best wishes

    Jack Moon

    Hi Stbell
    Ti High Grade means the the tumor was high grade and had reached the inner lining of the bladder, but did not reach the muscle of the bladder. The standard procedure would to be have another Turbt to insure all of the tumor(s) were removed and for sure that the tumor had not reached the muscle. This is extremely important so the doctor can recommend the proper treatment. In many cases if the 2nd Turbt is the same result as the 1st, the Uro will recommend BCG treatments and check-ups every 3 months.
    All the best going forward,

    Steve Bellus

    Thanks for the feed back. I hope as well that my journey is as smooth as yours Paul. It’s encouraging to say the least. Hope to meet you some day.

    Can you describe the process involved in BCG treatments. Where, how long each treatment takes, how far apart they are, and any side effects.


    Hi Steve:

    I’m the veteran of 21 BCG treatments. The usual schedule is a set of 6 (once a week for 6 weeks), then at least one year or more involving 3 sets of 3 (once a week for 3 weeks) You uro may prescribe more depending on your situation and/or how you are handling any side effects. Some uros like patients to continue for 24-30 treatments usually over a 3 year period.

    A usual BCG treatment schedule may look something like this:

    1) Once a week for 6 weeks
    2) Have a cysto check exam about 3-4 weeks after completing 6 weeks of treatments
    3) Approximately 3 months after the 6 week set you will have 3 treatments once a week for 3 weeks
    4) Have another cysto check 3-4 weeks after finishing the BCG
    5) Second 3 week set of BCG about 3 months later
    6) Cysto check 3-4 weeks after finishing
    7) Third 3 week set 6 months later – you may have another cysto scheduled prior to the start of this set of BCG

    This schedule is assuming that you remain clear. After treatments are finished you will usually have a cysto check every 3 months for 2 years, then move to checkups every 6 months for two years if clear, then annually for a minimum of 10 years preferably for life.

    Side effects are usually flu like with headache, low fever, chills, muscle and joint pain. Some experience bladder irritation and a little bit of blood in the urine which clears up once treatments are finished. If you experience high fever, severe chills and lots of bladder pain and bleeding, let your uro and/or clinic know before having the next treatment. They will instruct you as to whether you should proceed with the next treatment or not. If your bladder becomes too inflamed you run the risk of systemic BCG infection so that is why it is necessary to check with the doctor if you’re experiencing problems.

    The severity of side effects varies from person to person and unfortunately you won’t know until you’ve tried it. Some people only have mild fatigue others like me experience the whole nine yards. If the side effects get heavy you can discuss this with your uro or clinic and in some cases they may reduce the dose or change the scheduling.

    As a side note if you develop any kind of infection that requires antibiotic treatment while doing BCG you will have to stop BCG while taking the antibiotics because BCG is a bacteria and the antibiotics will kill the BCG rendering the treatment useless.

    When going for the treatment, a nurse will insert a catheter into the urethra – ask for numbing gel and if catheterization is an issue, a smaller sized catheter. They will drain out any urine still in the bladder. The BCG is mixed with about 50ml of sterile saline and this mixture is instilled in the bladder via the catheter. Once the drug is in, the nurse will remove the catheter.

    You will need to lie down for 2 hours or as close to that as you can get and turn over (side, back, side, tummy) every 15 minutes to coat all sides of your bladder wall. Once the two hours is up you pee it out into the toilet. You will need to pour 1 cup of bleach into the toilet to kill the BCG. Wait 15 minutes before flushing. You need to do this for about 6 hours following treatment. Do not use a public toilet for about 6 hours after treatment as there is a low risk of BCG transmission since you won’t be able to sanitize a public toilet.

    The BCG will burn when voiding at least on the first void. Start drinking a lot of water at the end of the treatment time to flush your urinary tract of the remaining BCG. Drink a lot of water for the next 2-3 days. Peppermint and chamomile tea are also bladder friendly. Most of us avoid caffeine drinks and products while doing BCG as we have found it increases bladder irritation. Drinking lots of water keeps your urine diluted and this helps reduce the risk of bladder irritation.

    I hope that my information helps. Please don’t hesitate to ask any questions. Best of luck going forward. (((((HUGS)))))

    Paul D

    Hi Steve and I had my 5th BCG treatment today and as I have explained in other post’s they do the treatment a bit different here in Australia, I had no side effects again but was tired. Marysue has described the treatments you have beautifully, I am a novice on the BC journey and Marysue has given her experience to us all so well. Don’t be afraid to ask questions.
    Love and best wishes,
    p.s I even got a cup of Chamomile tea off them today, things are looking up.


    Sorry, it was really late when I posted last night. I was fatigued and didn’t have BCG to blame for it. LOL!! A major side effect for me with BCG was fatigue. I had a lot of it and just rested more. The fatigue will lessen once treatments are completed.

    I found that I just had to curtail some activities for a bit. For my second go round I was working part time and my supervisor was great at rearranging my schedule to give me reduced hours. I used this as a time to take care of me and on treatment days when I wasn’t feeling well I would take a hot bath with Epsom salts, curl up with a cup of peppermint tea, water, favourite quilt and a good novel. I also enjoyed watching reruns of my favourite TV shows or took a nap.

    If I got discouraged while going through treatment (fatigue may do that) I treated myself to small treats as rewards for each treatment, test or whatever completed. Even though slowing down my busy schedule was a bit hard, I saw this downtime as a chance to relax and give my body the time it needed to heal.

    Again, best wishes going forward. (((((HUGS)))))


    Hello Stbell,

    I am sorry I did not notice your post until now … I have been taking a few days “Staycation” and have been enjoying the summer

    I do not have much to add to what has already been written on this and your last post. It still appears that you are on “Third base”. I pray that your re-TransUrethral Resection gives you that “Home Run”.

    As mentioned, you have been currently diagnosed with Non Muscle Invasive Bladder Cancer (NMIBC). The initial treatment for NMIBC does not vary all that much for all patients that are at intermediate or high risk. BCG, with BCG maintenance is pretty much the standard initial treatment here in Canada for NMIBC for all other than low risk patients or very high risk patients (Ref. Canadian Urological Association CUA:
    If you are interested, attached hereto is what I think is a rather good video on NMIBC and its Treatment, by the Bladder Cancer Advocacy Network (BCAN)

    MarySue Covered BCG. I get all the side effects to various degrees. However, for me, the most dominating side effect to BCG is fatigue. I feel very tired for some time after the treatment. Over a number of weeks, I gradually get my energy back (like right now) – only to get the fatigue “hit” once again when I get my next round of BCG treatment. BCG is meant to excite an immune response to fight the cancer – which makes some people feel “run-down”.

    Best wishes and God Bless



    Hi Stbell

    I was diagnosed at age 65 with T1 High Grade Bladder Cancer (NMIBC) October 30 2014 so I’m coming up to my two year anniversary. My schedule right now is a cystoscope every 3 months and BCG every six months. My protocol so far is very close to what MarySue has described. My first year was the the most difficult as I struggled to understand what was going on.

    With regards to BCG my major symptom was fatigue. Over the passed two years here is what I have learned. I’m very lucky to have a Urologist (and his team) that I trust and have complete confidence in. I was never a good drinker of any liquid. I now drink 2 to 3 liters of water per day and on cysto days and BCG days I drink 3.5 to 4 liters per day. After each cysto I have a large glass of my favorite red wine with my wife to celebrate the all clear result. I stopped drinking coffee and now have tea in the morning.

    If you have any questions please feel free to contact me or if you need to talk send me a private message and I will call.

    Take care

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