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Bladder cancer

10 months 1 week ago - 10 months 1 week ago #54692 by Jack R
Saws,

As many of us have learned - and I learned it from this site almost 3 years ago - there is a hierarchy of cancer care. Most of us seem to start with a local urologist, some move on to a Urologist with a specialty of urothelial/renal carcinoma at a regional medical center. Many - especially if there is an unclear diagnosis, rare or an advance in grade, stage or metastasis - wind up seeking an opinion (and perhaps treatment) at a National Cancer Institute Designated Cancer Center.

From my experience, the level of services provided at the NCI-CCs is practically unobtainable at the local or regional level. I (and others here) have expressed the benefit from being seen at a place where "the tough cases" are the order of the day. I may have benefitted if I had made the decision earlier.

I continue to be treated by my Uro at the regional center 5 hours from my remote ranch, but I am followed and seen if needed by MY TEAM at the NCI-CC, which is a full day away, longer in rain or snow.

Everyone involved in my care is comfortable with this arraignment - me, my Uro at Regional, and the NCI-CC team.
I mean no disrespect to ANY caregiver or to their commitment to their patients. I have found that timely delivery of less-common and more-intensive services are available only at the higher tier of care.

A list and description of NCI-DCC is linked below.

NCI-Designated Cancer Centers
https://www.cancer.gov/research/nci-role/cancer-centers

None of us here are doctors. We are just patients working our way through the medical system and reporting on our experiences. We hope to learn from the words of those ahead of us and hope our stories assist those following us.

Best,
Jack

What's with this Bleeding ? 6/2015
DX: HG Papillary & CIS
3 Years and 30 BCG/BCG+Inf
T0 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 , round 3
Begin year 4 with cis T0

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10 months 1 week ago #54682 by Saws71
Thank you jack R for your fast reply.
Our urologist is a specialist in bladder diseases. With a special interest in oncology urology. And he’s a board certified in laparoscopic bladder surgeries. He works for Beaumont in Michigan. Which makes it even harder to seek someone as good. And the latest biopsy. Showed no malignancy whatsoever. Cis or other. That’s whats baffling us. Why the pain is still not receding. And the symptoms are persistent. I thought maybe someone have a similar experience. But it looks like we might end up seeking another opinion. Thanks a for your advise. Hope you all do well

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10 months 1 week ago #54680 by Jack R
Saws,

Sorry to hear that you are lacking for answers almost 6 months into the BC journey.

The biopsy reports should describe the bladder situation - there should be little guess work about whether the "redness" was CIS or inflammation. Of great concern is the statement that your urologist is "baffled" by the events. I assume you have confidence in or are comfortable with your urologist.

I firmly feel that it is time for a second opinion anytime a treating Doc is unsure of how to proceed. Asking for a second does not have to be stressful - it may come as a relief to your current urologist that someone else will offer an opinion. A second at a major center is best - a Bladder Cancer specialist will have more experience in tough cases that a general urologist.

CIS (if it was CIS that was burned off) can be tricky, and is always high grade. You don't want to let it get out of control.

You need and deserve answers and an treatment plan based on findings.

Best
Jack

What's with this Bleeding ? 6/2015
DX: HG Papillary & CIS
3 Years and 30 BCG/BCG+Inf
T0 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 , round 3
Begin year 4 with cis T0

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10 months 1 week ago #54679 by Saws71
Hello.
This seem like a non ending dilemma. A new problem start before even dealing with the old one. 3 cystoscope. 3 biopsies. 2 mitomycin c applications. All in less than 6 month. First 2 cystoscope showed a low grade non invasive cancer. Third cystoscope showed a benign tumor . Which it was weird. But the pain and microscopic hematuira is present all the time. Today less than a month after third cystoscope that presented the benign tumor More blood clots appeared. Any ideas. I mean our urologist seems baffled by the events also. The last tumor showed like red patches in a big area of the bladder. He burned all of them. The bladder almost looks black.

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11 months 1 week ago #54547 by Jack R
Saws,

Pain 4 weeks post TURBT is not uncommon for many of us - others report no lingering pain.

Do try to define the pain and speak with the care team on dealing with it. Always ask for help - being comfortable is an important part of healing.

Tissue soothing meds such as AZO and pyridium can make a big difference in some cases, bladder relaxers can help in others. If a nicked or bruised prostate is involved, a short course meds may help. Do not overlook the possibility that foods are part of the problem - hot and spicy can mean a painful bladder and urination.

Again, try to define the pain, when and how it is experienced, then ask for help from the care team.

Best
Jack

What's with this Bleeding ? 6/2015
DX: HG Papillary & CIS
3 Years and 30 BCG/BCG+Inf
T0 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 , round 3
Begin year 4 with cis T0

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11 months 1 week ago #54546 by Saws71
Hi. My husband is still in pain four weeks after his second TURBT. is this normal

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