I received a phone call this morning from my medical group. The woman said that she needed some answers regarding my authorization and my doctor's office has not been returning her calls. Hmmm! Well that explains the break down, I suppose.
She needed to know who initiated the request for a second opinion...relevant, how?? And what type of oncologist I wanted to see surgical or medical. Hmmmm! Hmmmm! Doc's office said they already were asked to give a specific doc's name at City of Hope. Really any will do but my primary care doc obliged and gave them a name of an onco they are familiar with.
In her defense the woman on the other end of the phone was very nice and full of empathy for my situation. She said she hoped to be able to call me with a decision today and if not sometime this week. I didn't hear anything today so I expect it will be this week.
Thinking back on it I should have told them it was at the request of my doc, huh? Who am I to request a second opinion???!!! I know it is my "right" as a patient but we all know they don't give a rat's patootie about what I think! Darn! I should be quicker on my toes. Technically speaking my primary did initiate the referral but that is symantics really. Who cares who initiated the darn thing, it's needed! Ugh!!
Monday, June 13, 2011
Sunday, June 12, 2011
Nothing...stil!
My doctor called last Thursday to let me know they still have not heard anything regarding the City of Hope referral. I was told he was putting a call into the medical director who makes the ultimate decision. He agrees that this is taking entirely too long. Hopefully I will get an answer this week so I can get going!
I had the bump in my foot looked at...he said it looks like a growth but unsure if it is related. We are watching it... It hurts to wear shoes so I don't know how much longer I can continue "watching" it.
I also mentioned the numbness and tingling I experience every time I bend at the waist. He didn't have much insight except to say that I should hear about my authorization soon. I suppose he feels it's all related and should be tended to by an oncologist.
I'll be in touch!
I had the bump in my foot looked at...he said it looks like a growth but unsure if it is related. We are watching it... It hurts to wear shoes so I don't know how much longer I can continue "watching" it.
I also mentioned the numbness and tingling I experience every time I bend at the waist. He didn't have much insight except to say that I should hear about my authorization soon. I suppose he feels it's all related and should be tended to by an oncologist.
I'll be in touch!
Wednesday, May 25, 2011
Still Waiting
I called yesterday but they have not heard any news. She said with a major cancer center such as City of Hope, they do take quite a while to render a decision. I want this so bad...I'll keep you posted.
Friday, May 20, 2011
Still Waiting
I called my primary on Tuesday to check in on the status of my authorization. She told me the insurance company has asked twice for more details of my diagnosis and treatments. The first request came in for more info regarding how good of a lab rat I have been and the second request came in on Monday for a specific doctor's name. Apparently they just put City of Hope and they wanted a specific doctor's name written down. They supplied them with one and now we wait some more.
For those of you counting (and I'm one) it has been SIXTEEN days! I sure hope they decide soon. Call me crazy but I think that since they did not just say no, then there is hope. I may actually get this approved. Wouldn't that be nice??
For those of you counting (and I'm one) it has been SIXTEEN days! I sure hope they decide soon. Call me crazy but I think that since they did not just say no, then there is hope. I may actually get this approved. Wouldn't that be nice??
Friday, May 6, 2011
Oh My Word!! Why Does This Always Happen To Me!?!?!!?
Thursday, May 5th was my return visit to my onco. He was to take the CD of my last scan (1/3/2011) to the hospital review board and have the radiologist take a look at my case. It was my hope that this new, extra set of eyes would be helpful in providing insight and perspective. He did not take the disc in for a second month in a row! So my time and money was wasted again!! I am not sure why it is acceptable for a doctor to do this to a patient, no less an oncologist! I am just as unsure why in the h@#$ I have been putting up with this from him and for so long!!!
I am told to return next month in hopes that the third time is a charm. I am fairly certain I won't be making it to this appointment! Since I was in such a bad mood leaving this appointment I decided it was time to make some noise with my primary care doctor. When it rains, it pours!
I had called on Wednesday to check the status of my authorization for City of Hope and oddly enough they could not find any evidence of it anywhere. It had been 8 days and the doctor stated that I should have it back before I had my onco appointment. The gal took all of my phone numbers and said she would call me back. Hmmm! She never called back. So after my visit with my onco on Thursday I was fit to be tied! Someone was going to hear me out...I was angry!
I placed the call as I sat in the parking lot of my oncologist wanting answers. I was told simply that the authorization had not yet come back. Since the doctor said that I would have it back in plenty of time BEFORE seeing my oncologist I was sure something was amiss. AND I was sure it was due to the person in charge of submitting the authorization did not do her job. After some badgering I was able to get her to fess up. She had not done what the doctor asked when he asked. It was only brought to her attention when I called inquiring about the results. Ah...well at least she owned her mistake but I can tell you I wasn't in a good mood. After I expressed my frustration at not having anyone take this as seriously as it needs to be and the fact that this beast could very well be growing out of control and I have not had chemo since November...... Luckily I was met with a kind, sympathetic, very apologetic human being on the other end of the phone. She realized her mistake (we all make them) and she assured me she would not stop until she got me into another oncologists office as quickly as she could make it happen. She also invited me to call her 10 times a day if that is what I needed to do. I appreciated how she handled the situation and I just may take her up on a daily phone call.
This is my weakness but I believe that she will not forget the sobbing, scared and very frustrated patient on the other end of the phone. I am completely emotionally drained from these damn tumors! I have nothing more to give them! They have taken so much from me and I so desperately want to be done with them. I hope this doctor can get me to something better...someone more knowledgable....and if he can't, the courage to acknowledge he needs help from someone else. To date, I have not received such care. :-(
I am told to return next month in hopes that the third time is a charm. I am fairly certain I won't be making it to this appointment! Since I was in such a bad mood leaving this appointment I decided it was time to make some noise with my primary care doctor. When it rains, it pours!
I had called on Wednesday to check the status of my authorization for City of Hope and oddly enough they could not find any evidence of it anywhere. It had been 8 days and the doctor stated that I should have it back before I had my onco appointment. The gal took all of my phone numbers and said she would call me back. Hmmm! She never called back. So after my visit with my onco on Thursday I was fit to be tied! Someone was going to hear me out...I was angry!
I placed the call as I sat in the parking lot of my oncologist wanting answers. I was told simply that the authorization had not yet come back. Since the doctor said that I would have it back in plenty of time BEFORE seeing my oncologist I was sure something was amiss. AND I was sure it was due to the person in charge of submitting the authorization did not do her job. After some badgering I was able to get her to fess up. She had not done what the doctor asked when he asked. It was only brought to her attention when I called inquiring about the results. Ah...well at least she owned her mistake but I can tell you I wasn't in a good mood. After I expressed my frustration at not having anyone take this as seriously as it needs to be and the fact that this beast could very well be growing out of control and I have not had chemo since November...... Luckily I was met with a kind, sympathetic, very apologetic human being on the other end of the phone. She realized her mistake (we all make them) and she assured me she would not stop until she got me into another oncologists office as quickly as she could make it happen. She also invited me to call her 10 times a day if that is what I needed to do. I appreciated how she handled the situation and I just may take her up on a daily phone call.
This is my weakness but I believe that she will not forget the sobbing, scared and very frustrated patient on the other end of the phone. I am completely emotionally drained from these damn tumors! I have nothing more to give them! They have taken so much from me and I so desperately want to be done with them. I hope this doctor can get me to something better...someone more knowledgable....and if he can't, the courage to acknowledge he needs help from someone else. To date, I have not received such care. :-(
Monday, April 25, 2011
Updates
Last Friday I went in for my follow up ultrasound to peek at that blasted ovary....Today I saw the doctor for the results. The growth has gone back down to a smaller size and he is no longer as concerned. Good news!! My next appointment is next year. So I'll cross this drama off my list! What a relief...
Later this afternoon I also had another appointment with my primary. This was my second attempt to meet with him. My first attempt ended when I left his waiting room after two hours of waiting. Who has that kind of time to sit and wait??? Not me, I had another doctors appointment that I had already pushed back while I was sitting in the waiting room. So! I got smart and made the first appointment once they returned from lunch. Note to self....I only had to wait one hour!
I have to say the reason I didn't walk away from this doctor forever is that I knew that he would take his time and care with me. He would do what ever I asked of him...and I was right. Today I told him how much I disliked my oncologist and put simply I don't trust him. He did say that we couldn't discount the fact that I have been stable all this time and that may be a direct result of his care. Point taken but once I said I didn't trust him my primary stopped defending him and asked me what I wanted. I told him that in an ideal world I would like to be treated by an oncologist who is very familiar with desmoids. I feel like a guinea pig and I'd like to feel like I wasn't someone's medical experiment.
He said that he would put in a request for a second opinion at City of Hope. While I don't really think that is the best place for me, it's a start and he feels most likely I will be referred to USC Cancer Center. Perfect! I know there are doctors there that have atleast heard of desmoid tumors and know a little something about how they behave. So today was a good day :-)
My primary did say that he didn't like that with all the blood work that I have had they weren't at all comprehensive and he ordered a full work-up along with a mamogram...after all I'm 40 now. Yea, yea, yea...so everyone keeps reminding me. I argued (half heartedly) that my gyno said I didn't have to until next year to which he replied, "with everyone else I'd say that is true but with you I would like to do it a year ahead. I need to keep a close eye on you, you don't have the best luck!" Finally, someone gets just how "special" I am!!
They expect the referral to come back before my follow up with my onco on May 5th. At that time I can chose to see what he has to say or give him the finger :-) The cooperation of Blue Shield will dictate the course I take. Please pray that the powers that be at good ole Blue Shield will finally see that they could have saved TONS of $$ if only they had sent me to a doc that actually has heard of desmoids and more importantly that the hell I've been through for the past 3 years has been torture only exacerbated by their unwillingness to allow me to see a slightly more expensive doctor in an effort to treat me more like a human and less like a lab rat.
I'll keep you posted :-)
Stacey
Later this afternoon I also had another appointment with my primary. This was my second attempt to meet with him. My first attempt ended when I left his waiting room after two hours of waiting. Who has that kind of time to sit and wait??? Not me, I had another doctors appointment that I had already pushed back while I was sitting in the waiting room. So! I got smart and made the first appointment once they returned from lunch. Note to self....I only had to wait one hour!
I have to say the reason I didn't walk away from this doctor forever is that I knew that he would take his time and care with me. He would do what ever I asked of him...and I was right. Today I told him how much I disliked my oncologist and put simply I don't trust him. He did say that we couldn't discount the fact that I have been stable all this time and that may be a direct result of his care. Point taken but once I said I didn't trust him my primary stopped defending him and asked me what I wanted. I told him that in an ideal world I would like to be treated by an oncologist who is very familiar with desmoids. I feel like a guinea pig and I'd like to feel like I wasn't someone's medical experiment.
He said that he would put in a request for a second opinion at City of Hope. While I don't really think that is the best place for me, it's a start and he feels most likely I will be referred to USC Cancer Center. Perfect! I know there are doctors there that have atleast heard of desmoid tumors and know a little something about how they behave. So today was a good day :-)
My primary did say that he didn't like that with all the blood work that I have had they weren't at all comprehensive and he ordered a full work-up along with a mamogram...after all I'm 40 now. Yea, yea, yea...so everyone keeps reminding me. I argued (half heartedly) that my gyno said I didn't have to until next year to which he replied, "with everyone else I'd say that is true but with you I would like to do it a year ahead. I need to keep a close eye on you, you don't have the best luck!" Finally, someone gets just how "special" I am!!
They expect the referral to come back before my follow up with my onco on May 5th. At that time I can chose to see what he has to say or give him the finger :-) The cooperation of Blue Shield will dictate the course I take. Please pray that the powers that be at good ole Blue Shield will finally see that they could have saved TONS of $$ if only they had sent me to a doc that actually has heard of desmoids and more importantly that the hell I've been through for the past 3 years has been torture only exacerbated by their unwillingness to allow me to see a slightly more expensive doctor in an effort to treat me more like a human and less like a lab rat.
I'll keep you posted :-)
Stacey
Monday, March 21, 2011
You all don't need to check in, you know what happened. He wasn't ready, blamed it on me and put me off until we decide if the ovary needs to come out. But that's ok because it gives me more time to figure out how to get outta there :-)
I'm hoping my primary can get me to a tertiary care center that specializes in this exact type of cancer. It's good to have goals...right?
I'll keep you posted. Next scheduled appointment is ultrasound to check in on my ovary. I'm prepared that it may have to come out and deal with the aftermath of awakening the "sleeping" white elephant in my back!!
I'm hoping my primary can get me to a tertiary care center that specializes in this exact type of cancer. It's good to have goals...right?
I'll keep you posted. Next scheduled appointment is ultrasound to check in on my ovary. I'm prepared that it may have to come out and deal with the aftermath of awakening the "sleeping" white elephant in my back!!
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