Forum

× Welcome click the New Topic button to post

Sorry...very confused, scared, and not sure.

9 years 11 months ago #31285 by Just Dance
Patricia wrote:

Trisha..here's the ombudsman page for the State of Illinois and contact numbers to reach to find out about coverage
http://www.cms.gov/center/ombudsman.asp
Pat




Dear Pat,

Thank you so much for the link! I will see what I can do tomorrow! I appreciate your help! I will keep you posted. :unsure:

~Tricia

Please Log in or Create an account to join the conversation.

9 years 11 months ago #31284 by Just Dance
Christine Springfield wrote:

Tricia,

The's an excellent post written by Mike on this site concerning doctors and the attitudes you may sometimes come across... I can't quite figure out how to link different threads so I am just going to copy it here. I know Mike won't mind.

Anyway, keep in mind that you are dealing with something that if it's not treated correctly, can actually kill you. Not to scare you, but there is a lot at stake when dealing with cancer. It could be that this can be treated relatively easily and then you're in the clear... or you might need a little more "work", then you are clear. There are tons of us out here enjoying our lives post cancer. This is a VERY survivable thing! You just got to get to the right people that will help make that happen.

Without further ado... here's Mike's letter:

"This was originally posted in the forum but I thought maybe it would be good to post here as well....

The following are just some random thoughts I had about things to communicate to a local urologist. The thoughts are based on my experience and also the experiences I've read from others on this site. In reality, my local urologist highly recommended that I get to a major bladder cancer center and recommended a couple as soon as I had positive cytologies two years after my initial CIS diagnosis and treatment.
Based on what I've read in posts here in the forum, I get the sense that many people are concerned with insulting their urologist and in some cases urologists may be trying convince patients that they know better than the major bladder cancer centers.
In any case, that line of thought led me to these random thoughts about a hypothetical letter (or conversation) with a local urologist after a diagnosis of bladder cancer.
Mike



Dear Doctor,

Please understand that I am obviously shocked and dismayed by my recent diagnosis of bladder cancer.
Please understand that my questions are not intended to cast doubt on your knowledge or expertise. For me to feel that I have some sense of control over my situation, I want to gain as much knowledge as possible so that I can make informed decisions. I want to know enough that we can make decisions together about the course of action we take. Please understand that if we choose the wrong option for treatment, I am the one who will die, not you. You may feel a genuine sense of loss but I will be dead.

Please understand that my desire to seek a second opinion doesn’t mean that I don’t like you or trust you. In a way, I don't really even consider it a second opinion. I believe your diagnosis and think it would be good to take things to the next level of specialty.
When I ask questions about how many surgeries of this type you perform and how frequently, it doesn’t mean I think you are not competent. Even if you have less experience dealing specifically with my exact type, stage, and grade of bladder cancer than other doctors, you may very well be much more highly skilled than they are.
If you were planning to build a house on a cliff, would you most likely go with a construction company that has a lot of experience building houses on cliffs, is specifically focused on the science and engineering of cliff building, and has an excellent track record or a company that builds on the plains but has built a few houses on cliffs but done an excellent job?
A major bladder cancer center may come to the exact same conclusion with regard to diagnosis and treatment. I may decide to have you do the treatment once things are confirmed. I see no good reason to travel far from home on a weekly basis if we're just talking about BCG or Mytomicin-C treatments.
The same way that my general practitioner pointed me to you when symptoms indicated that I needed someone with your expertise in urology, my hope is that you can help me find the best option available for someone with a laser focus on bladder cancer. As my GP covers all things in general, you cover all things urological. I now think I need someone who covers all things related specifically to bladder cancer. It is simply a matter of focus and specialties within specialties until I reach the lowest level of focus.
If a family member or close friend told you of this same diagnosis, what advice would you give them? Where would you send them to increase their probability of success?
Thanks for your understanding and for discovering my bladder cancer so we can try to beat it before it is too late.
Sincerely,
Your grateful patient."



Dear Christine,

Well, I tried to post to you and lost the entire thing in 'Preview' mode. So, I will start over. :S

I am definitely nervous and afraid so I know I will continue to seek help to try to find out exactly what is going on. I appreciate the encouragement! Thank you. I am very glad to hear success stories!

Mike's letter is highly 'befitting' of my situation already. Unfortunately, I am getting some attitudes in trying to obtain copies of my reports from my doctor's office. The insurance woman told me that it would be '$20...starting out and then page-per-page after that, so you are talking a lot of money here'. I told her I didn't need every normal urinalysis and things like that. I need the abnormal reports. So, I am to pick these 'five pages' up in person on Thursday when I drive up there.

A few things I wanted to ask you: Are 'Squamous' and 'Transitional Epithelial' cells always cancerous? The secretary at my doctor's office was the one who told me about the 'Squamous' cells being present in the lesions. The insurance woman (yes, she is who spoke with me today--it is never the doctor) read my report today and mentioned that they had found 'Transitional Epithelial' cells in the lesions along with the Squamous cells. Is this normal...ever? She was saying that they were 'precancerous' but the doctor said they were "not benign", "not precancerous", and he couldn't tell if they were "malignant or not yet". She said 'if they were cancerous, he wouldn't have ablated them' and that 'he would have sent me to an Oncologist a.s.a.p. for a biopsy'. They feel they have done all that needed to be done but why am I hearing details from the secretary and insurance woman instead of my doctor...? He never told me anything about the type of cells found after the ablation. Another thing that bothered me was when she said, "Dive down further into this and you will drive yourself crazy--do NOT play the 'What-If Game'". I was highly insulted and I do not care to be talked to in a condescending manner. Like Mike said, I would be the one dying...not her and not the doctor.

Thank you so much for replying. I appreciate your time and responses so much.

~Tricia

P.S. NOT previewing this time. Hope it looks alright. :lol:

Please Log in or Create an account to join the conversation.

9 years 11 months ago #31277 by Patricia
Trisha..here's the ombudsman page for the State of Illinois and contact numbers to reach to find out about coverage
http://www.cms.gov/center/ombudsman.asp
Pat

Please Log in or Create an account to join the conversation.

9 years 11 months ago #31276 by Just Dance
I believe Medicaid is state-funded. I doubt I can go out-of-state...but, don't quote me. I would have to call the Medicaid office to see what they say.

I called Gary's office too late today (missed by about 45 minutes). Thank you so much for the information and I will see what I can do next!

Sincerely,

~Tricia

Please Log in or Create an account to join the conversation.

9 years 11 months ago #31269 by Christine Springfield
Tricia,

The's an excellent post written by Mike on this site concerning doctors and the attitudes you may sometimes come across... I can't quite figure out how to link different threads so I am just going to copy it here. I know Mike won't mind.

Anyway, keep in mind that you are dealing with something that if it's not treated correctly, can actually kill you. Not to scare you, but there is a lot at stake when dealing with cancer. It could be that this can be treated relatively easily and then you're in the clear... or you might need a little more "work", then you are clear. There are tons of us out here enjoying our lives post cancer. This is a VERY survivable thing! You just got to get to the right people that will help make that happen.

Without further ado... here's Mike's letter:

"This was originally posted in the forum but I thought maybe it would be good to post here as well....

The following are just some random thoughts I had about things to communicate to a local urologist. The thoughts are based on my experience and also the experiences I've read from others on this site. In reality, my local urologist highly recommended that I get to a major bladder cancer center and recommended a couple as soon as I had positive cytologies two years after my initial CIS diagnosis and treatment.
Based on what I've read in posts here in the forum, I get the sense that many people are concerned with insulting their urologist and in some cases urologists may be trying convince patients that they know better than the major bladder cancer centers.
In any case, that line of thought led me to these random thoughts about a hypothetical letter (or conversation) with a local urologist after a diagnosis of bladder cancer.
Mike



Dear Doctor,

Please understand that I am obviously shocked and dismayed by my recent diagnosis of bladder cancer.
Please understand that my questions are not intended to cast doubt on your knowledge or expertise. For me to feel that I have some sense of control over my situation, I want to gain as much knowledge as possible so that I can make informed decisions. I want to know enough that we can make decisions together about the course of action we take. Please understand that if we choose the wrong option for treatment, I am the one who will die, not you. You may feel a genuine sense of loss but I will be dead.

Please understand that my desire to seek a second opinion doesn’t mean that I don’t like you or trust you. In a way, I don't really even consider it a second opinion. I believe your diagnosis and think it would be good to take things to the next level of specialty.
When I ask questions about how many surgeries of this type you perform and how frequently, it doesn’t mean I think you are not competent. Even if you have less experience dealing specifically with my exact type, stage, and grade of bladder cancer than other doctors, you may very well be much more highly skilled than they are.
If you were planning to build a house on a cliff, would you most likely go with a construction company that has a lot of experience building houses on cliffs, is specifically focused on the science and engineering of cliff building, and has an excellent track record or a company that builds on the plains but has built a few houses on cliffs but done an excellent job?
A major bladder cancer center may come to the exact same conclusion with regard to diagnosis and treatment. I may decide to have you do the treatment once things are confirmed. I see no good reason to travel far from home on a weekly basis if we're just talking about BCG or Mytomicin-C treatments.
The same way that my general practitioner pointed me to you when symptoms indicated that I needed someone with your expertise in urology, my hope is that you can help me find the best option available for someone with a laser focus on bladder cancer. As my GP covers all things in general, you cover all things urological. I now think I need someone who covers all things related specifically to bladder cancer. It is simply a matter of focus and specialties within specialties until I reach the lowest level of focus.
If a family member or close friend told you of this same diagnosis, what advice would you give them? Where would you send them to increase their probability of success?
Thanks for your understanding and for discovering my bladder cancer so we can try to beat it before it is too late.
Sincerely,
Your grateful patient."

T3/G3 - Squamous Cell/Transitional Cell Carcinomas
RC w/Studer Pouch 4/25/07

Please Log in or Create an account to join the conversation.

9 years 11 months ago #31266 by Patricia
This will teach me to trust my brain cells at 1 in the a.m....of course, you're female...cervix....doh.....sorry about that.
Trisha...(that was my nickname in college..don't know why but i went with it)...anywho being on Medicaid might be tricky..some won't accept it. But all major centers have a certain amount of cases they do accept. Being 1 hr. from Chicago one of the top guys is Dr. Gary D. Steinberg at the U. of Chicago
http://www.ucurology.org/faculty/gary-d-steinberg-md-facs
While you're at it look at the other members of the urologic team. There is a contact number at the bottom and you can ask about accepting medicaid.
The Patients Advocacy Network may be able to help you if a major center won't accept you
http://www.patientadvocate.org/
I shall have to research Medicaide to see how that works..thats a new territory for me. Can you go out of state?
Pat

Please Log in or Create an account to join the conversation.

  • Not Allowed: to create new topic.
  • Not Allowed: to reply.
  • Not Allowed: to add Files.
  • Not Allowed: to edit your message.
Moderators: Cynthiaeddieksara.anne

Users

Total Online: 1 User and 1997 Guests 
coney46's Avatarconey46

Legend: Site Administrator Global Moderator User Banned

Statistics

Today Total Opened: 0 Today Total Answered: 0 Latest User: Mcfuzzykids
Yesterday Total Opened: 1 Yesterday Total Answered: 2
Total Posts: 53546 Total Subjects: 7000 Total Users: 8685