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Too many Questions - Too few answers

8 years 11 months ago #29637 by Cynthia
I am so sorry you have to be here with us.

As you know until you have your pathology report a treatment plan can not happen.

When you get your pathology back can depend on how busy the laboratory or the doctor is. I personally have never waited on pathology longer than it took for it to come back usually five working days as I request that they call me wist results. The first one was going to take longer due to the Urologist being out of town and I asked them to fax it to my family care physician and she called me and gave me the results over the phone.

You need to take a big breath as most of us have waits between diagnosis and treatment beginning. I know that like all of us all you want is this thing treated and gone. Take this time to find the right place to get the best treatment you can find.

Everyone is well advised to get a second opinion from a center of excellence in bladder cancer. You may hear the same thing from both doctors but it is a sanity check and you want to know you are making the right decisions. Now is the time you need to be making that appointment so that you can get in as soon as possible. Call your insurance company and ask what their policy is on second opinions. Mine had what turned out to be a very accurate list of where I might wish to go. Some not only pay for them but insist on them with a major diagnosis.

When you get your second opinion you will also have your pathology slides reviewed and again they may well find the same thing. But again it is important that you do so as there is a percentage of pathology reports that find the first was under or over staged.

What you are hearing is that with bladder cancer outcome is very enhanced if you are dealing with medical professionals that specialize in bladder cancer.

It is important that you become your own advocate here. Asking a loved one to be your partner in your medical care is a great idea it is another set of eyes and ears. When you go to appointments have a list of questions ready and someone needs to take notes or recorded the conversation so you can refer back. Studies have found that when you are new to this you don't remember half of what you hear at the time.

Remember we are here, ask us questions this site was built to offer a home base for people in your situation.

Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society

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8 years 11 months ago #29626 by mmc
Great idea Jack!

On the test results, my uro used to make an appointment with me to cover the results and then call me if it was good news and then cancel the appointment.

Once I told him that I am perfectly fine getting bad news over the phone, I was able to get all my results very fast.

I also signed all of the papers that said it was OK for me to get copies of my own test results from everyplace that did them.

I would go home with scans on CD and look at them on the computer. I couldn't read the things but I had them. Then I would have them fax me the interpretation of the scans the next day.

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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8 years 11 months ago #29625 by Moonerj
I agree with the other replies, not much can be done until you have the results of your pat report.
Now path reports do NOT take 2 weeks from ANY lab.
Patients waiting for reports is USUALLY not the fault of the lab. It is the Uro's schedule when he can see you again.
My 1st Turbt I was in the hospital for 3 days, I had my pathology results before I left the hospital and so did my GP.
Any test results are faxed to my Uro and my GP directly from the lab. The longest I have ever waited for any test to do with bladder cancer is 4 days.
My urine tests from all my cystos I have with-in 48 - 72 hours.
Even my 2nd opinion path results I had in 2 days from the top bladder cancer hospital in Canada.
All I do is insure every paper I sign for tests is that my GP is copied and faxed on all results.
When a fax arrives at my GP's office I am called immediately by his secretary to pick up my copy.
There is nothing worse than waiting for results so I recommend you do what you can to shorten the time span.
I wish you all the best,
Jack

TA Grade 1
3 Turbts
30 BCG Treatments
Cancer Free since Nov 2007

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8 years 11 months ago #29606 by sara.anne
I will second what others have already told you. Until you get the path reports back, you really do not have much of a diagnosis. Once you have those, we can give you a lot of more specific advice and ideas. We will all be keeping good thoughts.

It is important to have a urologist who is competent in the area of bladder cancer....many sort of "specialize" in prostates!!

Good luck

Sara Anne

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

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8 years 11 months ago #29601 by wsilberstein
You can't make any treatment decisions until you know your pathology. Stage (how far it has invaded into the bladder and surrounding layers) is more important than grade. I had high grade tumors but my cancer was superficial (non-invasive) not having even gone through the lamina propria. I was treated with intravesical chemo (mitomycin C) although most in that situation are treated with BCG. That was 9 years ago.
Invasive cancer requires more aggressive therapy including removal of the bladder. Radiation is not used to treat bladder cancer and might do more harm than good. I don't know if radiation is used on lymph nodes for invasive cancer, but irradiating the bladder is a bad idea.
Getting a second opinion is always a good idea, but unless you have invasive cancer you probably don't need to consult an oncologist. You should make sure you're seeing a urologist who has lots of experience treating bladder cancer, preferably at a university hospital.
To the best of my knowledge there is no relationship between cervical cancer and bladder cancer, even though they're in the same general area. Most cervical cancer is caused by human papilloma virus (HPV).
I always had major bladder spasms when things were done to my bladder. Ask your doctor about medication to relieve the spasms. There are many such as Detrol, Vesicare, Urelle.
More than 2 weeks sounds like a long time to wait for a report unless the lab is extraordinarily busy. I knew my results in less than a week. Can you speak directly to the pathologist?

-Warren
TaG3 + CIS 12/2000. TURB + Mitomycin C (No BCG)
Urethral stricture, urethroplasty 10/2009
CIS 11/2010 treated with BCG. CIS 5/2012 treated with BCG/interferon
T1G3 1/2013. Radical Cystectomy 3/5/2013, No invasive cancer. CIS in right ureter.
Incontinent. AUS implant 2/2014. AUS explant...

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8 years 11 months ago #29600 by mmc
Icequeen,

Sorry to hear what you are going through but welcome to the site.

Q1: It all depends on stage and grade. If it's cancer, I would suggest going to uro/oncology bladder cancer center to confirm the diagnosis and your doctor's recommended treatment plan.

Q2: See above. Get to a bladder cancer center if you can.

Q3: Did your doctor give you anything for the spasms? Peridium may help calm it down. That's the stuff that turns your urine bright orange. I recall seeing some other antispasmodics mentioned by others so hopefully someone else will chime in with other suggestions.

Q4: Waiting on pathology reports can definately be frustrating. Different labs work at different speeds. Another thing about pathology reports from a bladder cancer center is the higher level of experience/expertise with pathological samples. Request your slides from the pathology lab once you get the report back. Bladder cancer center docs usually look at the slides themselves and don't just take the word of the pathology lab.

Best of luck next week!

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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