I was diagnosed with Papillary Thyroid Cancer in February 1994 following a surgical (open) biopsy. My two eldest children had just celebrated their second and fourth birthdays in January and February respectively. By the end of that year I’d had further surgery to have a total thyroidectomy and removal of cancerous lymph nodes (which resulted in permanent hypo-parathyroidism), various types of scans, fine needle aspiration, surgery to remove two suspect nodules (non-cancerous) and radioiodine ablation treatment. After the radioiodine ablation further scans were inconclusive and a second dose of radioiodine ablation was suggested; however, I couldn’t face being away from my young family again. Instead I was placed on levothyroxine and continued to take the vitamin ‘D’ supplement Alfacalcidol. I went on to have my third child in August 1996 without any complications to either my baby or myself (I have a lot to be thankful for).

For many years after my initial treatment, the care I received from my GP and the hospital, on the whole, worked. I had an annual check up at the hospital and my GP was in charge of providing me with my repeat prescriptions and primary care. The communication between them was excellent. Any symptoms that developed (some which I continue to experience) were reviewed, and I fully accepted and trusted any decision they made. Beyond being told everything was fine, I never felt the need to have in depth technical details of my diagnosis and subsequent results. There came a time however when this was no longer a viable choice.

My GP retired and one of the new GP’s decided to review and reduce the amount of Levothyroxine I was taking following the results of a blood test. Not knowing that the GP may not be familiar with thyroid cancer I trusted and accepted the revised treatment unaware of the implications due to my lack of knowledge. When I next saw my consultant he immediately increased my Levothyroxine. He explained to me why it is important that the thyroid stimulating hormone (TSH) must be suppressed in thyroid cancer patients. This meant that the dosage of Levothyroxine must be high enough to suppress TSH which generally results in the FT4 level being at the higher end of the reference range (more detailed explanations of thyroid cancer, blood tests results and reference ranges can be found on the BTF web site, in a leaflet and the revised edition of ‘Thyroid Cancer for patients, by patients’ supplied by BTF head office upon request).

Following my annual checkups at the hospital the consultant always writes to the GP confirming the dosage I am meant to be on. Even with this communication on my file, with my GP surgery remaining in charge of my repeat prescriptions, they insist on periodic medication reviews and subsequently a blood test usually resulting in a request by them to review my medication. I therefore decided I needed to have more control over my own health that meant more information and knowledge. I found details of BTF on the internet and became a member in early 2008. Knowing the importance of having information and in self-management, I was so impressed by the support provided by the BTF that I decided to volunteer to become more involved. In January 2009 I became the BTF Local Coordinator for Birmingham.

With help from my consultant, Professor John Watkinson and the patient group of the Get A-Head charity (based at the Queen Elizabeth Hospital Birmingham), the first meeting took place on the 13th June 2009. The first meeting was well received generating interest in the second meeting (November 2009) and future meetings. However I would like to acknowledge that none of this would be possible without the guest speakers, volunteers of the patient group of the Get A-Head charity, Alison & Nigel, Susan & Peter and Maureen together with members of my family, freely giving up their time. With a family and a day job I appreciate and willingly accept all the help that is offered.

From the feedback I have received from just the first two meetings it is evident that sharing experiences and information between patients, information provided by the guest speakers and resources provided have proven invaluable to many of those who have attended. I, myself, through conversation with a BTF member have gone on to become a volunteer tutor of the Chronic Disease Self Management Course for the Expert Patient Programme. This course is free to any person who has a long-term health condition.