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How to get 2nd opinion?

2 years 1 month ago #52290 by Jack R
Mark,

That is a good looking path report, all things considered, given an expected cancer diagnosis.

Now the doc can suggest a treatment plan. You will be given the opportunity (or you can demand the opportunity) to have your concerns and questions heard and responded to by the doctor. THEN you will finally have a first opinion.

Best
Jack

What's with this Bleeding ? 6/2015
DX: HG Papillary & CIS
2 Years and 24 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

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2 years 1 month ago - 2 years 1 month ago #52289 by mwhuang
Now the path report comes in. Looks like the papillary is low grade pta, which is good news. :). The red area is: denuded urothelial mucosa. Did some research on this, one report saying that this could be an indication of CIS in the future....:):(.

Guess still doesn't hurt to get an 2nd opinion?

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2 years 1 month ago #52285 by Jack R
Mark,

My biggest frustration after the shock of hearing 'cancer' was that there was no rush or urgency in scheduling a CT and a IVP and TURBT. It seemed like no one cared that this was REALLY IMPORTANT. It turns out that it is OK - they do care, but unless someone drops the ball, the process chugs along at a (what now seems like an almost) proper speed.

Let me slow you down a bit. That is the advice none of us want to hear. We want full steam ahead to get the cancer out. But step one is the initial diagnosis, which may suggest additional tests or a repeat TURBT. The diagnosis IS happening, a treatment plan will follow; wait for them.

Remember, caught early, superficial bladder cancer is highly treatable. It is not treated instantly, it is a process that takes time. Use the time prior to the diagnosis to learn about your insurance plan - what is covered, if coverage is different for "in plan" and out of plan providers. Who do you call for information.

Your insurance card should have a number or website to call for information. Get the list of plan providers and coverage.

You can look ahead to the local NCI centers, and find their requirements and options for second opinions online or on the telephone. Again, requirements always seem to differ.

UCSF
http://cancer.ucsf.edu/

Stanford
https://stanfordhealthcare.org/medical-clinics/cancer-center.html

I hope this helps. Your job at the moment is to learn about bladder cancer, in case that actually turns out to be your diagnosis. Below is a website with LOTS of good general information as a starting point..

http://www.cancer.gov/types/bladder

I hope this helps

Best
Jack

What's with this Bleeding ? 6/2015
DX: HG Papillary & CIS
2 Years and 24 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
The following user(s) said Thank You: mwhuang

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2 years 1 month ago #52284 by mwhuang
Thank you very much, Jack. I was thinking about 2nd opinion on path report and looks like UCSF is the closest NCI cancer center for me. How to get 2nd opinion there, do I need to contact one particular doctor first? I read somewhere else that some cancer center can directly take slides and analyze them. About insurance, will they refuse to pay if i am seeking 2nd opinion?

Best,
Mark

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2 years 1 month ago #52279 by Jack R
Mark,
Sara offers great advice. Until you have the biopsy report, you don't yet have a first opinion.

Once the pathology is in, your doc can explain what was found, and explain what treatment s/he proposes. Not all 'red patches' are CIS - they can be cystitis or irritation of the tissues The symptoms of bladder cancer seem to be the generic, without being specific to papillary or CIS cancer.

The easiest second opinion is simply asking that the biopsy material be reviewed by a major cancer center pathology lab. Check with your insurance about coverage.
You may want to ask the doc what range of services s/he can offer, and ask where s/he refers patients that need other services. It sounds like you are looking ahead and trying to identify possible options, should advanced capabilities become necessary. Seeking a second opinion does not necessarily mean you intend to leave a treating doctor in whom you have confidence.

You can ask for a referral for a second opinion at any time. You don't need a reason other than it would make you more comfortable. The process is easier with cooperation from your current treating doctor.

Some doctors seem relieved to send cancer cases off to more specialized practices. The local doc may see a lot of prostates and UTIs but not much bladder cancer.

Of course, it is also appropriate to simply say, 'I am anxious and concerned, please refer me for a second opinion'. It is your body, your choice.

Best
Jack

What's with this Bleeding ? 6/2015
DX: HG Papillary & CIS
2 Years and 24 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

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2 years 1 month ago #52276 by sara.anne
Does CIS typically have symptoms? Not sure exactly, since everyone is a bit different. In my case the only symptoms I had were a lot of what seemed to be UTIs. Turned out I had all the symptoms, but no bacteria! The first (of 2) TURBs showed papillary plus some "suspicious" areas. The second TURB, concentrating on the uncertain areas, returned the verdict of CIS. At that point my uro said "well, that does help explain your symptoms." My symptoms, typical of a UTI, were mostly urgency and burning.

Sara Anne

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