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i cannot sleep because of my cancer came back

9 years 5 months ago #29999 by pemquid
I have low-grade noninvasive (same type as you from what I can tell from your postings), and have had one recurrence so far. Mine was after 2 years, and you have gone way longer than that. My Dad had the same type of cancer back in the 1970s, when they didn't have all the types of treatment and diagnostic procedures they do nowadays. He only had one recurrence, and died in 1989 at the age of 84 (not related to bladder cancer). As others have said here, you can almost count on bladder cancer to recur, but that doesn't mean it's going to be fatal.

I think people sometimes confuse "recurrence" (which is basically another tumor, or several, in the same area) with "metasisis" (spread of cancer to other parts of the body). Although low grade bladder cancer is still cancer, I like to imagine the tumors like pimples: sometimes there are none, and sometimes they reappear. The literature suggests that tumor recurrences have a strong tendency to be the same type and grade as the original tumor, so if you had a papillary low grade, noninvasive tumor, it's highly likely that future tumors will be the same.

Now that you've had a recurrence, you know your urologist will go back to checking you (cystoscope) every 3 months for the next 2 years; if all clear during that time, you will then be checked every 6 months for the 3 years following. I know it's very discouraging to feel as though you're starting back at the beginning after being clear for so long. When I had my recurrence at the 2 year point, I wasn't so much sad or worried -- I was MAD initially, because I'd really been looking forward to having to go only every 6 months. But, I'm accustomed to the 3-month routine, and after my summer check up this year, will (hopefully) get to the 6-month checks. However, this time, I'm not counting on it so I won't be as let down as I was before!

We're very glad you found this forum, and hope all will go well for you. One thing you should keep in mind if you read about various scary things in these forums is that people who are doing well and haven't had recurrences are much less apt to be posting here. We come here to get information when situations change and to support one another. When all is well, people tend to go to back to their usual lives and don't bother to come back to post -- "no news is good news."

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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9 years 5 months ago #29996 by mmc
One more thing I forgot to mention that was a question you had.

There are thousands and thousands of survivors of bladder cancer. Your chances don't get much better than being in the group of folks with low grade, non-invasive.

Do not ignore though and get to U of M as Pat mentioned.

Mike

Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...

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9 years 5 months ago #29994 by Patricia
Second opinion..UofM..
http://www2.med.umich.edu/pcdv2/provider/dsp_provprofile.cfm?individual_id=69386&um_department=U%2DM%20Comprehensive%20Cancer%20Center
Dr. David Wood trained at Cleveland Clinic (#2 in Urology) and fellow at Memorial Sloan in NYC (#1 in bladder cancer)
pat

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9 years 5 months ago #29990 by mmc
It sounds like it must have been low grade or they would have probably had some other treatment for you beyond TURBT and watchful waiting.

Since you have had it come back, I'd suggest getting to a bladder cancer center. Patricia is the one who has done tons of research on different hospitals and doctors.

Andy just went to MU and I think they are good.

If you've only just had a recurrence of low grade, keep in mind that it is very, very treatable. Often, they just remove it and keep an eye on it. It's called low grade because it is very slow.

You should get a copy of your pathology report. Those records are yours and all you need to do is sign a release that says it is OK for you to have your records.

I know it can be very scary and very frustrating but low grade non-invasive (aka superficial) is the one you want if you have to have bladder cancer. Of course, we would have all preferred not to have any bladder cancer at all. :)

Please don't let this get you down. We're here to help.

Mike

Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...

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9 years 5 months ago #29989 by gijosephine
thank you saraanne new to all this support responed and answered mike questions i appreciate your good thoughts.

this is where i need to be

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9 years 5 months ago #29988 by gijosephine
dear mike thank you for your time i have not talked to anyone about my stage one soperficial bladder cancer first diagnose august 2005 my treatment at thattime was a tur surgery long name for transurethral cancer return october2009 biopsyreport not sure butsuperficial stage my doctor is office location is in dearborn, mi treatment plan the same as before. monitoring and cystoscopy testing. right back from the beginning i start its starting all over again it is very difficult to cope.

this is where i need to be

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