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

11 years 5 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.
Precious time is going by.
Do you have anyone to help care for you?

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11 years 5 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.



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11 years 5 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
15 BCG
dx Jan 07

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11 years 5 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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