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Newly diagnosed mother of 5

6 years 2 months ago #45548 by pemquid
Another "fan" of BCG here. I had same type of tumor as you, with a recurrence after 2 years. Because of the recurrence, my uro recommended BCG even though tumors were low grade and non-invasive. I did not have very bad side-effects from the BCG though did have the dosage reduced to 1/3rd part way through the treatments due to developing a fairly high fever after one round. I've been all clear for over 5 years now, and whether or not it's because of the BCG, I'm happy!

Best of luck.

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.
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6 years 2 months ago #45535 by sara.anne
Natasha, it is not uncommon to have a second TURB about 6 seeks or so after the first. What you are having in a couple of months is a cystoscopy...where the uro looks into the bladder...not a biopsy. You will probably be having cystoscopy every three months for about two years. Then, the usual practice is to have them every six months until five years, then annually forever.

BCG is an "attenuated" (ie, weakened) form of a TB bacterium. I believe it was originally developed for use in children!! The treatment is not fun, but very doable. I would rather do it than go to the dentist!! Unlike the usual chemo, which affects the entire body, BCG is used to elicit an immune response directly in the tissues affected by cancer, the bladder lining. Therefore it is infused directly into the bladder. At first, there is just the discomfort from the procedure itself. As time goes on, and you have more treatments, you would probably feel more generalized effects...fatigue and a low fever a couple of days after treatment. And if the side effects become too pronounced, they can reduce the dose. I am so grateful that I was able to have BCG and have been cancer-free for five years!!!

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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6 years 2 months ago #45524 by Rockyiss
Hi Natasha, Sorry you have a reason to be on this site. In 2006 I found out I had five small tumors in my bladder. They were taken out, path report said ta grade 2. Local dr recomended bcg but went to john hopkins for a 2nd opin.
The Dr there wanted to do a wait and watch and I started going back every three months. It has come back several times and the dr takes it out each time. The checkup a couple of weeks ago was clear.
I was kinda worried doing wait and watch but I am seeing one of the top Drs. for it sooo thats what I am doing.
My brother also had a ta tumor and it was taken out twice. He was then tumor free for ten years. With no other treatment or checkups. (he had no insurance)
Keep getting your checkups and enjoy your kids, chances are you are going to be fine. Like you, when I found out what bcg was I really didn't want to have to do it.I was glad when the john hopkins dr said I could do wait and watch. It has work for me. Rocky ( make sure you keep getting checked )
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6 years 2 months ago #45521 by Natashab5
Thank you all so very much for your advice and encouragement! I really do appreciate you taking the time to respond. As you all know, this can be a very scary time. Being a mom, I have to remain in complete control of my emotions as my children watch to see how I am reacting. My 3 oldest are girls and we all know about teenage hormones. lol! I was diagnosed with cancer, my oldest got engaged, I had surgery and my 2nd oldest broke up with her boyfriend of 2 1/2 years all in a 5 day period so emotions are ALL OVER THE PLACE at my house!!

I am very optimistic about everything I've learned so far concerning my diagnosis. I started really watching what I ate a few months back and I joined a boot camp type workout. That was when I started noticing my symptoms which I related to the strenuous exercise. Although my dr told me to stop working out for a while (not that this hurt my feelings:)) I still try to watch what I eat & I only drink water.

My Urologist scheduled me to return for a cystoscopy in February but, Sarah Anne, you mentioned a 6 week follow up. Is this considered standard practice?

I'm also very interested about your experiences with the BCG treatments. My first reaction, after finding out it was a form of TB, was absolutely NOT! I'm now seeing that this is the most popular form of treatment. Please tell me y'all's thoughts.

Thanks again,
Natasha

Diagnosed BC TaNoMo 11-8-13
TURBT11-11-13
01/15/14- negative cysto
07/14 - negative cysto
01/23/15 -new tumor found during routine cysto. Will be having TURBT followed with Mitomycin
02/05/15 TURBT, 3 tumors removed, MMC

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6 years 2 months ago #45520 by Joey
Natasha, similar to Sara I was dx with low grade papillary urothelial carcinoma, NON Invasive in Dec 2007. My tumor was 4 CM. About 8 weeks later a follow up biopsy as read by one pathologist also showed CIS. Other tests and readings showed no cancer. Having said that, after my required BCG treatments I too have not had a recurrence in almost 6 years. My next follow up is in March. Just make sure you continue to follow up every 3 months for your cystos and be proactive with your treatments.

Joey
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6 years 3 months ago #45516 by mareewifeofgreg
Sorry all!! Didn`t mean to put across that diet can CURE cancer & i agree that the tumour has probably been there for a while. In fact, we all have `cancer` cells - just takes the right `environment` & circumstances to set it off - chronic inflammation, stress, acidic environment. Eating less `troublesome` foods - coffee, spicy etc may alleviate symptoms but will not necessarily take away cancer.
There is enough evidence available to know that what we are eating has a huge impact on what happens inside our body. The typical Western diet & lifestyle will provide the ideal conditions for cancer to take hold & take off - too much meat, dairy, carbs & processd foods & stress, & not enough exercise. This is just my opinion & we believe we can do much ourselves to help recovery from surgery & alleviate the side effects of conventional therapy.
BTW - I don`t think there is any evidence that conventional treatment will cure all kinds of cancer either. Too much money to be made to ever `find a cure`!! Anyway, thats off topic - all the best to mother of 5.
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