Dear DR.,
Thank you for your time, as a scrub I know how valuable that is.
I had a DX of FTC stage 1 on Mar. 24 2010. The RN for Moffitt phoned me to say she needed to get with the specialist to find out next steps and would call by the end of the day. I heard from her on the 26th as they were in clinic and she was busy I presume. I was confirmed for the DX and told to wait for 6 months to get UTS done, however I remindes her I had one last Oct. and was at the 6 mth mark already so should I proceed now? She said go with that. Results were not signifigant for growth. The nodule on the left side is still under 1cm. however it grew some mm. Will have to look at report to have correct measurement. They were comfortable to wait another 6 mos.
I was not comfortable waiting so I consulted with my ENT to have other lobe removed. The final path report read benign (rt. lobe) with degenerative changes. He did not get DX of FTC from Moffitt and was shocked to hear of the DX from the 2nd opinion.
I called Moffitt's path dept to speak with the Dr who did the path there to get the addendum added so the second lobe could be removed. She called me to say she could not change path as there was no CA. I was shocked as I was called over 1 mo. before and got the DX myself. She spoke with dept head and he called me personally to assure me there was no DX. I work for a clinic as an MA and I found later he thought I was not the patient when he called as he told me the PT. must be delusional and mental to go telling people she had CA when in fact she did not. I told him we needed to get to the bottom of this immediately as MY case was to go before the tumor board in my county per my hematologist/oncologist the following Wed and the office closes at 12 CST and it is Fri. and he was embarrassed and went to the specialist himself and called the RN in for a meeting to get to the bottom of all of this. I called my husband and told him I was at the end of my rope, could he please handle this for me. He called the office to speak to the RN and had her paged... she got on the phone and told him she was in a meeting could she get back to him at 1pm EST. The specialist himself called my husband to explain that I did NOT have FTC and yes there were changes but it had not turned into CA yet, yes they got it all and apologized for the RN making the call and she was new and should have not been put in the position to have made the call. He is comfortable to wait and watch the other nodule on the left lobe. I was notified that I did not need surgery and apologized to. I told them thankfully that happened to me and not someone else, since I am in the medical field. It took several days to believe I did not have FTC as I had lived over 1 mo. being a CA pt.I also told my family that I was very grateful I had listed my husband in my records to be able to talk about my case and that the Dr. called him personally or everyone may not have believed me. This has taught me several things. I am very grateful for my life, and will try not to take things for granted. I am allowed with my offices permission to make those calls but I only say verbatim what my Physicians tell me to say to our patients. I know mistakes can happen and I'm very grateful that the mistake was not made in reverse and told I did not have CA when in fact I did, if you know what I mean. I have had CA 2x before this and I never want to hear the words you have Cancer ever again.
I have gotten somewhat back to normal, but will have to watch and wait for the other side due to the fact that if I decide to have the left lobe and ithsmus removed it will be considered elective and may not be covered.
So for now we wait. I will be establishing with MD Anderson soon with Hematology as through all of this I have found out I have VonWillebrand's Disease. It has been confirmed, I just have to be typed. I suffer from post surgical hematomas. So I will be ready if I ever have to go under again.
Again thank you for your time.
Sincerely,
DA Reynolds M.A., C.S.T.