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BCG, Mitomycin or nothing?

5 years 10 months ago #45441 by sara.anne
You are really having fun, aren't you!! NOT! Please remember as we discuss this, that treatment options and opinions vary from country to country, and what is considered standard here might not be in Sweden. And no one really knows what might be best.

As you have discovered, Ta bladder cancers are often considered relatively minor, with a watch and wait approach. However, when they keep returning, as yours have, the usual approach here is to treat, and BCG is usually the treatment of choice. Treatment here usually consists of an induction series, normally six weeks long, with instillation once a week. Then about three months later, the maintenance series begins with instillation once a month for up to two years....many patients don't quite make it the entire time!

The side effects of BCG are not intolerable and consist of fatigue, bleeding, urgency, burning. These are controlled by reducing the dose as the body becomes more sensitized to the drug.

Mitomycin is often used in one dose, immediately after a TURB, or as an alternate to BCG when a patient (rarely) proves to be sensitive to BCG and cannot tolerate it at all. The consensus here is that BCG is better than mitomycin which is better than nothing at all.

I am not at all familiar with "electromotive Mitomycin therapy" so cannot comment on it.

My personal bias, at this point, (AND I AM NOT A DOCTOR) is that I would want some kind of treatment and would tend to go with the opinion of a younger urologist whose training is more recent. Just my opinion.

Lots of luck to you and please let us know what you do!!!

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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5 years 10 months ago #45440 by Nicke
Hi, I am a 48 year, none smoking, healthy, male, living in Sweden. Last year I was diagnosed with bladder cancer. It was a chock to me. To be honest, before that, I was not even aware of that there was such a disease as bladder cancer! I guess I have been through all phases there is, in a situation like mine, like shock, fear of death, anger, resignation etc. but also some hopefulness.

I was diagnosed 12/12/12. I had my first TURB 01/17/13 when one single tumor was removed, TaG1, about 1 cm. No second TURB at that time. I did not passed the first follow up cysto in April, and had a second TURB 05/22/13. 7-8 small spots were removed, but it was just dysplasia, not cancer. Follow up cysto in beginning of September showed several small tumors. I had my third TURB 10/01/13, 5 small tumors, and also about 10 small spots were removed. The tumors was TaG2, all less than 0.5 cm. The last 2 TURBs were done with HEXVIX, blue light assistance.

I have had symptoms from my bladder at least the last two years, frequent urination and some pain from the groins and inside of my legs. I often have a felling of inflammation. The Symptoms vary over time and is of course worse the weeks just after having a TURB.

So far, I have not have had any additional treatment like BCG or Mitomycin. The question about additional treatment for me has been discussed but the general guidelines in Sweden is "wait and see" for low and intermediate risk bladder cancer. I have been treated at the local hospital in my city. There are about 10 urologists at the clinic, and 3 of them have been involved in my treatment. The youngest of them have brought up the question of additional treatment several times. The middle aged urologist with about 15 years of experience do not think I should have any additional treatment at this time. He thinks that the benefit of BCG for me does not meet up with the side effects or the risk of having irreversible side effects.

On Monday I will have a appointment with the senior urologist with more than 30 years of experience at the clinic. The main subject will be the question about additional treatment or not.

What do you think about additional treatment for me? BCG or Mitomycin or nothing at this time? Any comments are welcome!

There is a larger hospital 300 km south from me that is using electromotive Mitomycin therapy. I am not sure if it is in combination with BCG therapy or as a stand alone treatment. Is there any electromotive Mitomycin therapy in US? What I have read, this combination treatment appear to be superior to traditional BCG therapy. I am not sure, but there might be an option for me to get treatment at this hospital, now or in the future.

Niklas

12-12 Diagnosis
13-1 Turb TAG1
13-5 Turb Ta low grade, multiple
13-10 Turb TaG2, multiple
13-11 Mitomycin 8 weeks + 6 month
15-01 Turb

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