Hello! I met some of you in the chat last Sunday,

12 years 4 months ago #24306 by Sonya1
Here is my story. I was diagnosed through an ER visit cat scan with bladder cancer on 12/29/08. I had the TURB with fulmigation(?) 1 week later. The path report said stage 2 high grade muscle invasive. It was 2 cm in size. My uro took out all of it that he could see. He recommended a bladder preservation treatment with chemo/radiation. My concern was that even with 2 follow up visits, so far I have had no treatment and no appointments with oncologist or radiologist. It's been almost 2 months now. I was advised by members here to get a second opinion from Dr Konety at UCSF. I called the next day and he will see me next Wednesday! I have my cat scan, path slides and medical records for him to review that I will take with me.

My insurance won't cover him, so I am paying for the 2nd opinion myself. I am hoping that I can use his advice to push my uro to follow his treatment recomendation. He wanted a FISH test and urine cytology that my uro doesn't do. My question is, is this necessary and if so why because I will probably have to pay for it.

Also, if I have to go through chemo/radiation, I would like to know how "sick" this makes you. I live alone in a rural area, literally in the woods and I don't think I can undergo anything that would make me unable to drive, cook, etc., just basic caretaking. If this happens, can I stop treatment to recover? How do I know ahead of time what to expect? How long does it take? This part is terrifying to me. Any input is appreciated. Also, do I go on disability? Can I work while undergoing treatment? Thanks to all who responded to me in the chat and I feel much better since getting the appointment at UCSF.

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12 years 4 months ago #24307 by Lady Jane
Hi Sonya
You are on the right track getting a second opinion. If you like this uro would you be able to stay with him or do you have to go back to initial urologist? You want to put your trust in a doctor you like, thats important.

I have not had chemo/radiation so I can't answer those questions but others here may be able to.

Good luck on Wednesday. Please keeep us posted.

Ta Grade 1
6 TURBS
15 BCG
dx Jan 07

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12 years 4 months ago #24310 by Gracie
Hello Sonya,

Dr. Konety did my surgery and he did an amazing job (I have an Indiana pouch). I had chemotherapy after the surgery. I would be happy to talk to you more about this.

This is a very specialized surgery and not too many doctors are experienced with it. Would you have an appeal with your insurance company on this basis? I think Pat mentioned a patient advocacy group to you - that sounds great. Why not call and see what they may be able to do for you. I can't stress enough the importance of having your care with a doctor and medical center that is experienced with this type of thing.

I know how frightening this time is for you. I would like to help in whatever way I can.

Dr. Konety is also very patient in answering questions - so be sure to have your list in hand.

The best of luck - please let me know how it went.

Best,
Gracie

Best,
Gracie

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12 years 4 months ago #24311 by Patricia
Sonya...so glad you're seeing Dr. Konety. He's a lovely man and great doctor and knows a lot about women and bladder cancer. Have questions in hand and even ask him about the chemo/radiation route. The people who have the most success with it are at Mass. General in Boston and even then it is a 50/50 proposition. I also saw Cynthias team at Mass General and took all the extensive paper work home with me and tried to make some sense of it. I actually scheduled an appointment with a leading oncologist here who has a cancer center named after him to discuss what was between the lines of the study. It was pretty enlightening. I decided to go with a top uro/surgeon and have a cystectomy and Indiana Pouch which i have not regretted.
Here is the page on the Advocacy group and perhaps they can help you with an appeal to your insurance company.
www.patientadvocate.org/
Precious time is going by.
Do you have anyone to help care for you?
Pat

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12 years 4 months ago - 12 years 4 months ago #24312 by Stephany
Sonya, I'm glad to see your post! I had been watching the list, hoping we'd hear from you. And I'm glad you're on your way to a second opinion. I think you'll end up with lots of answers, and probably lots more questions, too.

Just bring 'em on back, and we'll see what we can do. Let us know what your second opinion is, too, and we'll see what the others think.

While you are at the new doctor's office, ask to talk to their insurance person. They may be able to help you with the issues you are facing with your insurance company. They've been through this before, I would wager.

We're looking forward to hearing from you again.

Stephany in Iowa

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12 years 4 months ago #24313 by Sonya1
Thank you all for responding. I talked to the insurance today and also the Dept. of Managed Care in Sacramento. I told the insurance I was appealing the decision regarding Dr. Konety and also simultaneously filing a complaint with Dept. of Managed Care. I learned about the Knox-Keane Act which states I am entitled to a 2nd opinion with a qualified Dr. within a certain distance. The Sutter (my plan) Docs are Urologists only, we don't have a Urologist/oncologist in the group. My argument is (1) none of the Sutter referrals are qualified to do what Konety will do which is a written review of path slides, written treatment protocol, office cysto, other lab tests, and discussion re: radiation vs surgery protocols. Even my own uro used a collaborative approach to get treatment protocols, he took my case to tumor board with several other specialists giving input. 2 of the docs they referred me to don't handle HMO patients, one specializes in post vasectomy and 4 cite conflict of interest. I think I have a good appeal. The only issue is that they have 30 days to turn it around and I am holding up treatment. I am paying for the WED. appointment which is about $2,000. I will contact a patient advocate group you guys refer to later today. RIght now I am going out to get one more medical record so I have everything ready for Weds. It remains to be seen if my uro will follow Konety's advice. I see him the day after (Thurs) Konety's apapointment, so I'll know then. He probably will not do the surgery, so if I need it, if the appeal goes through, it at least opens the door to use Konety as the surgeon. Again, I am so gratefull for advice I got here. Thank you. I'll check back when I get home.

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