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New here; TURBT #3 soon

1 year 8 months ago #56512 by CoffeeLion
Thank you so much for your reply. I feel terrible saying this, but even though my doctor has a top-notch education and fellowships, she is quite young, just 35, and that worries me from the standpoint of experience. I searched the word Delaware on the forum and didn't find any discussion of specific doctors here, but am wondering if I should consult someone else (and not one of the several doctors in the same practice) or am jumping the gun at this point. Unless I can get someone to see me as a self-pay, I cannot leave Delaware to see a doctor. And though I could come up with the money for a self-pay consult appointment, I would not be able to pay for scopes and surgeries out of state, so remaining in Delaware seems like the only option at this point.

General questions...with both TURBTs, both performed on a Thursday, I was sent home with a catheter that remained in place until Monday or Tuesday of the following week when I went into the office to have it removed. Do most go home with a catheter? Both times I just kept the large bag on and did not try to put on the knee bag, preferring just to stay home. I did go out a few times to drive my kids places, but I just put the cath bag into a canvas bag and was able to slip out to my vehicle without displaying it for all the neighbors to see (we live in an apartment complex.) That's going to be a lot harder to do this time since it's winter, so I guess I will have to master the knee bag if I want to be able to wear pants. I know it's a minor thing and only a few days, but during the time I'm likely to have the surgery my daughter has two different college alumni interviews that parents are invited to take part in... I'd prefer not to miss those.

Also, and I am definitely going to check with anesthesia about this before the next surgery, but after my second procedure I was shaking in recovery a lot more, couldn't control it at all, and then a day after I got home I developed a raging sore throat and a lot of muscle pain. Research suggested this could be a scoline reaction, so I will ask if that's what I had, and if I had something different the first time then could I have that instead. But maybe it's common to have this regardless of what medications are used during anesthesia?

Thank you again. This forum has been a relief to find.

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1 year 8 months ago #56510 by sara.anne
So sorry to read your novel......but I am sure it will have a happy ending! The usual treatment for low grade non-invasive bladder cancer is watch and wait . This usually consists of cystoscopy every three months for about 2 years and every 6 months for 3 more years and then annually forever. The reason for this is that bladder cancer has a nasty little habit of returning as you have found out . Usually BCG is used initially only for high-grade bladder cancer since it is not as effective for low-grade. BCG is used for low grade bladder cancer that returns multiple times . It would be unusual to have a urologist recommend bladder removal unless the cancer has returned and is no longer non-muscle invasive or if it has returned multiple times and several BCG treatments or BCG with Interferon have failed. Since your diagnosis is low-grade non-muscle invasive and since it is only returned once I would doubt that your urologist is considering bladder removal

Yes,if you are facing bladder removal you want to find the best person available to do this surgery . It does not necessarily have to be at a major facility ; you do, however, need to be sure that the surgeon has done LOTS of the type of surgery you might be facing. But I honestly do not feel that you are at this point now.

Please let us know what your doctor advises.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator

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1 year 8 months ago #56509 by CoffeeLion
I've just spent two hours browsing the forum and appreciate that so many people are willing to help others with their questions and concerns. (Reading replies from Sara Anne had a calming effect on me on a day when I've been stressed to a breaking point.)

I'm 57, female, live in Delaware, and was diagnosed last July after passing blood in my urine. The only symptom I'd had before that was a need to urinate more frequently. Not so frequent as to be troubling, and I passed it off as age, seeing as how I have friends who have complained about their "shrunken bladders" as they get older. But the blood that evening terrified me and it was all I could do not to head to the ER that instant instead of waiting until morning to call the doctor.

(I didn't actually even have a doctor, due to my previous one having relocated out of state. I'd been notified by the Health System that I'd been reassigned to a different office, but I hadn't been sick or had any issues in the two years since that notification. I tend to be doctor-phobic and stay away from doctor's offices unless I can't avoid it. I ended up seeing the Nurse Practitioner because that was the only same-day appointment available.)

Urine test, bloodwork, ultrasound, and got a call from the NP saying I had a mass in my bladder and she was referring me to a urologist. I'd never read anything about bladder tumors, but even so I knew 7 cm was a large one.

Went in for a TURBT the following week. Spent the night in the hospital--maybe a precaution because of the size of the tumor, not sure. Pathology came back as papillary urothelial carcinoma, low-grade, non-invasive, pTa.

About six weeks later I had a repeat TURBT (this one outpatient), with the same pathology results. I have both reports and neither mentions CIS. Just papillary, low-grade, non-invasive.

If there was CIS would it be on the pathology report? (Yes, should have asked the doctor about this, but honestly until reading here tonight I wasn't familiar with bladder CIS.)

Six weeks after the repeat TURBT, in October, I started a series of six BCG treatments. I had no obvious side effects from the BCG -- maybe I felt a little tired later in the day, maybe I had to urinate a bit more often, but I honestly don't think I'd have noticed those things had I not been looking for side effects.

Today (six weeks after the final BCG) I had a cystoscopy and it showed four or five small tumors (I could see a couple of the mushroomy-looking ones on the screen until I got freaked out and couldn't look anymore.) I don't know exactly how small, just that the doctor said they were very small compared to the original big one. I'll be having another TURBT in two or three weeks.

My reading here this evening has indicated BCG is generally used for higher grade tumors and CIS, and not so much for lower grade. I wish I'd read this before my doctor's appointment, because I'd have asked about that. What IS done for low grade tumors? Just removing them during the TURBT? Does the fact that I have these small tumors mean that the BCG failed? The doctor said when we get the pathology results from the next TURBT we may need to decide whether to treat the cancer in the most aggressive manner possible, which means bladder removal. It freaked me out that she said that and my brain couldn't come up with anything intelligent to ask.

Now my brain is saying "Can the doctor see CIS during the cystoscopy, and is that why she started talking about agressive treatment?"

For some reason I'm far more nervous and upset today than I was when I had the initial diagnosis and surgery. Like I'm doomed.

And I keep reading about how cystectomy should be done at a renowned hospital like Johns Hopkins or Penn, but that will not be possible under my present insurance, I certainly can't pay out of pocket (financially struggling divorced mother of teens), and so I'm even more worried.

I'll much appreciate any responses, and I promise not to write a novel next time.

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