Tuesday, March 06, 2007

Thyroid Cancer - You are done! Cured - NOT - Time for a 2nd opinion

On June 6, 2000 I went for my follow up appointment with my ENT post RAI. He took my vital signs and looked me over. He asked how I was doing and then told me that I was done. I looked at him oddly and said “Done, what do you mean?” He said, “You are done. You do not need to see me again.” I said “Never?”. He said “No, not unless you have problems.” I asked him who was going to watch me over the next few years. He told me that I did not need to be watched and that the RAI had taken care of the cancer. I got a very uneasy feeling. As I mentioned previously I had joined some e-mail groups that were formed by other thyroid cancer patients. I knew that I was not done. I knew that I would need to have my thyroid levels checked and that I needed to have my TSH suppressed to .1 or below. I had learned that someone would need to watch my thyroglobulin (Tg) levels to determine if there was active cancer. Experts stated that scanning was required at one year post RAI treatment to determine if the treatment was successful. I left the office knowing that I needed more than he could give and questioning my treatment and care to this point. Had we done the right things I wondered?

After a few days of thinking and reading I decided that I needed to seek the opinion of another doctor. By this point I had learned that Endocrinologists were the specialist of choice for thyroid cancer. I talked to my OB/GYN to get a referral to the local Thyroid Specialist. I called and scheduled an appointment with the local thyroid endocrinologist for July 19, 2000.

I contacted my ENT’s office and told them that I wanted copies of everything in my file. They did not want to give it to me which made me nervous. I told them I had a legal right to them. They told me it would take 24 hours. I arrived at the office the following day to pick up my records and they were not ready. The office manager told me that I could not have them. I told her I was not leaving until I had them in my hands. A few minutes later my doctor appeared in the waiting room physically shaking. He questioned why I wanted my records. I told him that I was not comfortable with his comment that I was done with my treatment. I told him that the research I had done on this type of cancer dictated that I be watched closely for 5 years after removal/treatment. I commented that many things should have been done. There were no antibodies checked, no thyroglobulin levels and no low iodine diet followed prior to RAI. I emphasized that I wanted to see someone who had experience with thyroid cancer and asked him why he had not referred me to someone who was experienced. He had no answer and disappeared to have his office manager prepare my records. Looking through the documents I felt like there were pages missing. I was to find out a few years later in 2005 when I requested records from the hospital that there were in fact documents regarding my treatment missing.

I had high hopes for my appointment with the endocrinologist. I felt a sense of relief that I would be seeing someone who was skilled in thyroid issues and more importantly had treated many patients with thyroid cancer.

I was nearing the end of June and a decision needed to be made about my job. My leave of absence was over on July 4th. My surgeries and tests were over for the most part but physically I was not well. I was tired and had substantial brain fog. The thought of getting up at 6 am or earlier to get on an airplane to fly to a client for 3 days was not appealing at all. I did not know how I would manage to be effective in my job. After discussing it with my husband we decided that I would resign from my job at the firm. It was somewhat hard for me to give up the only real career I had had. I really loved what I did but in my current condition there was no way I could handle the stress and pressure of the job. The managing partner told me that I was always welcome back when I regained my health and felt ready. So on July 3rd my resignation was tendered and accepted. A sense of relief fell over me that this decision was made.

I had been out of work for almost 8 mos at this point and my income had comprised 60% of our total household income. Thankfully, shortly before having my son I was given an inheritance from my grandmother who had died the previous year. We were able to pay off our house taking a large burden of over $1,200 per month out of our budget. We were also able to pay off both of our car loans giving us another $500 per month to pay for other necessities. Thankfully we were debt free after these items were paid off and helped relieve the financial stress that would have otherwise plagued us.

My Final Post ..... The Ending of a Journey

It is a very strange feeling to be writing this post.  It will be the last update that I post to this blog.  The blog itself will remain up ...