Thank you for the advice Jack and Alan. I have scheduled an appointment with my primary for tomorrow morning. I am still in "freak out" mode as my cystoscopy was only ten days ago. I have been on this forum reading ALOT. It is a great place to lose myself I have found. Many encouraging stories! My TURBT is on the 19th, and then more waiting, which I still have to adjust to. It drives me INSANE right now, I want answers! I'm sure we all feel that way at first. I am trying to convince myself that most likely, my life will have a new normal. However, my urologist gave me the good ol' 3% chance it is NOT cancer!
Not great odds, but at least there is a CHANCE.
For the first 3-4 months of my BCG every ache and pain concerned me. Sometimes BCG can flare the body. I am still around almost 11 years later! I figured after awhile it was my brain acting up and was nothing. At the same time listen to your body!
DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.
As each of us starts our personal journey toward cancer - any type of cancer - we seem to share a constellation of experiences.
When first told we need additional test because we might have cancer, our minds go completely blank (or race too fast) preventing us from asking any questions.
Then, in a full panic mode we hit the internet, where we get scared by lists of symptoms and warning signs that demand our attention - some from posts by people who have a book or a magical cure they want to sell.
The first part of reality hits when we find that medical tests will be scheduled a month out, and that reports can take a week or two. Our doctor schedules a return visit in a month, and suddenly we panic again. "I have cancer, and suddenly the world is in slow-mo. Don't these doctors care about ME ?"
We convince ourselves that every ache and pain is a sign of the end, the cancer has spread and no one did anything to help. We are suffering from lack of information, and lack of an action plan. We do what people do best - we panic again.
Eventually, we complete an initial set of tests including things such as a CT Scan, a cyctoscopic exam, and a resection (fancy word for biopsy) of a suspicious growth(s). Then we get to wait on pins and needles for the pathology report to be delivered.
FINALLY, we have some REAL information that can lead to a diagnosis (maybe it is NOT cancer after all) and a treatment plan is developed. We are gung-ho to start, but there are more delays. The delays will never end, sorry to say.
At some point we come to realize that nothing happens fast - unless medical tests indicate a true emergency - then we want things to slow back down. We learn to accept the waiting for test results - some treatment results cannot be evaluated until weeks after treatment ends.
We start to return to a new state of normal. We report new symptoms at regular visits instead of leaving "urgent messages" with our care teams service in the wee hours of the morning. Our schedules get rebuilt around the current treatment plan. We can breathe again, and enjoy life. Our doctors are relieved that we understand, because s/he has three new patients in initial panic mode.
With bladder cancer, most of us find that standard treatments are HIGHLY effective at curing or controlling the disease, when found and treated early. Bladder cancer has the highest cost per patient (average basis) because we live so long and have so many treatment options available if needed.
As someone said to me on this board three plus years ago, "Slow down, adjust to a new normal". It was great advice; it was impossible for me to accept immediately, just like it is for everyone else.
We all need to learn, independently, that it DOES get better.
What's with this Bleeding ? 6/2015
DX: HG Papillary & CIS
3 Years and 30 BCG/BCG+Inf
Tis CIS comes back.
BC clear as of 5/17 !
RCC found in my one & only kidney 10/17
Begin Chemo; Cisplatin and Gemzar
8/18 begin Chemo# 3
Begin year 4 with cis
2/19 Chemo #4
9/19 NED again
1/2020 CIS is back...
During my cystoscopy my urologist found what he termed as a small polyp that is most likely cancer but does not look aggressive. It did not show up on a CT scan so I am hoping it is very small. I have been experiencing middle back pain also on one side but my CT came back clean for any kidney issues. I have read that later stage BC will cause back pain so now I am terrified, I have 3 kids, youngest being only 8. Has anyone else experienced back pain early On? Thanks in advance for any feedback.