Very good site

Well, I'm sort of newly diagnosed.

Last fall I was diagnosed with a low grade papillary tumor. I had a TURBT and was clear until July when a new lesion of the same thing showed up. After having another TURBT I had 6 weeks of Mitomycin C. It really burned me. At the cysto after that there was a new tumor next to where the old one was. I went from the urologist I use to work for to a urological oncologist. I went to the new doctor after the doctor I work for suggested it. Last Tuesday I had another TURBT and the new lesion was removed a long with another instillation of Mitomycin C. Yesterday I saw the path. There were two fragments. One was low grade papillary tumor ta G1, the other was CIS. Both have not gone into the lamina propria. The urological oncologist emailed me and said he wants me to do 6 weeks of BCG now because of the high grade of CIS.

I'm feeling overwhelmed over everything. I had a hard time with the Mitomycin C. The nurse who was giving it to me really looked like she thought I was exaggerating. It's been two months since I had it and I get up all night to urinate and it still burns at times. Now I'm going to have BCG which I know to be very harsh. I have a husband disabled from brain surgery and unable to work. I bring home the paycheck and health insurance. I took short term disability for the TURBT and Mitomycin C...it was a good thing I did. I slept an awful lot. Now I'm going to try to do the BCG and work. Oh Lord.

At what point does a person throw in the towel and have a cystectomy? What if I go through all of this and it returns invasive?

Thanks for your input.

By LadyJane123
Posted November 1, 2009 at 3:30 pm
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Welcome Burb
I am so sorry you are suffering from your MitC treatmts.
Have you told your new uro/oncol about the lingering sever sideeffects of the MitC.
Has he looked inside and talked about your bladder being inflamed?
BCG can be given in lower does so thats something.

More supporters will chime in here with info.

Sending your a virtual hug for the "overwhelmed" feelings you are having.

By Burb
Posted November 1, 2009 at 3:36 pm
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Oh yes, he looked. He gave me another Mitomycin C treatment after my last TURBT and has now suggest the BCG for the CIS which is considered high grade.

Thanks.

By JerseyGuy
Posted November 1, 2009 at 4:51 pm
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Burb,

Welcome to our community. Here you will find experience and you will come to realize that you are not in this fight alone.

I had two rounds of BCG (as my good friend Jack Moon likes to say, BCG=Bladder Cancer GONE) and everyone takes it a little different. I have not had Mitomycin C and I can't tell you have the side effects are following that treatment. I too had a high grade CIS. But here's what I experienced.

The first round of weekly treatments, six weeks, were not bad, during the first three there was some soreness and burning when I urinated the last three were joint pain, a slight fever and fatigue. I usually took just the day of treatment off and returned to work the next day. The last three I think I took an extra day. Round two was another six weeks and I found it difficult to keep the BCG in the bladder for the two hours. The joint pain wasn't there but the burning was and the fatigue. But that's me. Some here had it better and some had a tougher time.

I am sorry to hear about your husband. I hope your husband is doing well. You must trust your Uro and your medicial team. Keep a positive outlook. You will beat this thing, I know it and you must too. There are lots of great people here, more than willing to help. For most of us its our payback to so many who have helped us.

Ask all your questions and you will get a lot of responses from people with experience in the area you're looking for answers. I wish you & your husband well. Stay strong.

Best wishes,
Battle on,
JerseyGuy

By Moonerj
Posted November 1, 2009 at 6:15 pm
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Hi Burb
I have only had 1 treatment of MMC after my 3rd and last Turbt.
My dx was TA Low grade.
I had 2 early recurrences, 30 BCG treatments and have been cancer free nearly 2 years now.
Everyone reacts differently to BCG treatments. Side effects vary from hardly any, to can no longer tolerate treatments.
CIS high grade does have a success record of being treated with BCG. Normally if you get a recurrence, they recommend a RC.
I hope in your case you can tolerate the BCG and it works and keeps the CIS away.
We all here will be rooting for you.
Each person has to decide on their own, and getting advice from your Uro, when to go for the RC.
All the best,
Jack
BCG = Bladder Cancer Gone

By Burb
Posted November 1, 2009 at 6:19 pm
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Thanks so much for sharing your "adventure". Thanks for telling me your symptoms.

I was just getting use to the idea of the low grade papillary tumors popping up all the time. The CIS showed up next to the low grade tumor the doctor was taking out this time. When I learned CIS is considered high grade it really threw me.

I think if my husband was healthy and able to work I woudn't be so freaked out.

We do have two grown adult sons at home. College grads one underemployed and the other just graduated and looking for ANYTHING. We live in the Detroit area...ground zero for unemployment.

I work for a big health system who is very good to the employees. I have access to one of the biggest urology practices in the midwest. I know I am in good hands. I JUST DON"T WANT THIS!!!! :)

By Baa
Posted November 1, 2009 at 7:35 pm
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Hi Burb,
I have had 18 BCG treatments. I had flu like symptoms, aches and chills, some burning and urgency, the day of the treatment, and a little better on the next day or so. I missed only the BCG day of work, but struggled some when I went back. It did help to take tylenol about 1/2 hour before the BCG and then stay on it the rest of the day. Hope this helps
Beth

By SilverGrizzly
Posted November 1, 2009 at 7:42 pm
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Hi Burb,
My heart goes out to you. I am newly diagnosed (August 2009) and still in the midst of trying to, first of all, believe I have this disease, and second of all, trying to deal with it emotionally and physically and mentally. No easy task.

And with your husband's situation it makes everything so much more difficult. I am so so sorry for what you are going through.

My husband has just lost his job, on top of everything else going on. It seems like this disease just piles one stress on top of another one on top of another one, and it is never done. That is what makes it so hard to deal with.

I have learned from being on this site that people do eventually figure things out and come to terms with having bladder cancer, but I sure haven't yet. Which is why my heart goes out to you so much.

I can't be much help with what you are asking, though I do have CIS and have just finished week two of my BCG treatment.

The advice I hear over and over again on this site is to get a second opinion from a major cancer center if you have anything unusual about your situation, which it sounds like you do because of the inflammation from the Mitomycin. Can you find someone from whom you can get a second opinion?

Many many HUGS to you. We are here to support you in any way we can and you will hear from lots of people who will have good ideas. Keep posting and keep venting whenever you need to. And keep asking questions because lots of people here are very knowledgable and so helpful. -Jan

By lsh
Posted November 1, 2009 at 9:25 pm
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I have had twelve BCG treatments with really bad side effects after the third treatment of my first round of maintenance. There are meds that help with the BCG...my doc wrote for darclama 81.6. It is a bladder analgesic and an antispasmodic. BCG is the treatment of choice for CIS. I also(like most of us)recommend a second opinion at a major cancer center. We have some members whose diagnosis/treatment stayed the same and they felt good about it...but we have some who have had changes in diagnosis/treatment. I would be happy to talk to you. Just click on my picture and message me.

Lynda

By Burb
Posted November 2, 2009 at 7:48 am
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This doctor IS my second opinion. He use to be with MDAnderson. Now with Henry Ford Health System....Vattikutti Urological Institute. He called me last night....yeah a Sunday night on his way home from the airport to go over everything with me. I felt so much better after talking to him. I know I am good hands. I wish everyone could have a doctor like him.

By Memi
Posted November 2, 2009 at 9:23 am
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I was diagnosed with T1 high grade CIS in June of this year. I was not given MMC, probably because my CIS was diagnosed right away. Started BCG in July; the side effects ( burning, urine frequency and urgency, some fatigue. Any other aches and pains I attributed to 65 years) were not pleasant,but there are meds and hot baths that make them easier to endure. The important thing is it worked. I had a biopsy ( 5 fragments )after the 6th treatment and no cancer cells were found. I start maintenance treatments next month.
You're bladder has already gone through rough treatment, so you may have more or worse side effects than I had, but if you can tolerate it can be very effective. Hopefully you will have enough time between the last TURBT and the BCG for you bladder to heal. My uro waits 6 weeks.
I will have cystos after every round of 3 treatments, anything suspicious will be biopsied. If the CIS returns a cystectomy will probably follow.
If I can help in any way, just friend me.
I wish you God's blessings and will be praying for you.

By RickB
Posted November 4, 2009 at 6:15 am
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Burb,

It is normal to feel overwhelmed, particularly with the cards you have been dealt. The stresses related to your questions add fuel to the fire.

There are no easy answers to your questions. I would suggest getting a second opinion, and doing so from time to time if you continue the path you are on. With low grade tumors, you can continue the fight without a cystectomy. Side effects may point you to cystectomy, and only you can make that decision. You will know when it is time from that perspective. From a risk of invasion perspective, the doctors have to weigh in and help you with your decision.

Because you live in Motown, you may want to participate in the University of Michigan Bladder Cancer Support Group in Ann Arbor. You could meet face to face with fellow survivors and talk about this. Our next meeting is Nov 15, and is focused on Neobladder Voiding Dysfunction. It is a great group, and there is a buddy system to provide coaching and information. I posted details on this site recently if you are interested.

Rick

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