A Conversation with Military Spouse and Cancer Survivor, Lesley Worley.
Sunday, June 2, was National Cancer Survivors Day. “A ‘survivor’ is anyone living with a history of cancer – from the moment of diagnosis through the remainder of life,” according to the National Cancer Survivors Day Foundation. Events are being held all over the world to celebrate and honor cancer survivors and the people who have supported them along the way. Not only is Lesley Worley a military spouse, key spouse for her husband’s squadron, professional photographer, mother to two adorable little boys and is stationed at McGuire AFB with her husband, Justin, she is also one of my dearest friends. She was more than happy to share her journey and also gives advice about what to do in the event you receive a cancer diagnosis.
What kind of cancer do you have and how did you find out about it?
I was diagnosed with papillary thyroid carcinoma in January of 2005. I first went to the doctor for some enlarged lymph nodes in my neck. At first my doctor diagnosed it just as a lymph node infection…but after a few months, a second doctor did a biopsy and determined I had Stage 3 Thyroid Cancer.
Did you have any problems finding a doctor on base or with Tricare approving your procedures?
Tricare was really amazing through the whole process. It was actually an on base ENT doctor that first diagnosed my cancer, and they immediately referred me to outside specialists. It is so important that the medical providers and insurance carry the same sense of urgency, in making sure that you are getting you to the right specialists. I have never had any issues with getting referrals.
The biggest tip I have, is continuing communication with your on base PCM. Your specialists off base DOES NOT continually send updated reports to your PCM, during your continued care process. It’s important for you to continually keep them in the loop, or make sure that the specialists are sending in your reports. Referrals are only good for 6 months, and if you are not on a managed care program, TriCare, nor your specialist, will let you know that your referral is close to expiring. It’s YOUR responsibility to make sure you have your PCM put in new referrals for you, for your off base continued care. From personal experience, I have on a few occasions, forgotten, only to find out at my appointment, that I didn’t have a referral on file. They will still see you, but you:
A.) Have to sign in as a Point of Service, which means you are liable for costs, if the referral doesn’t go through….AND
B.) Make sure your PCM back dates a referral; to cover your current appointment. It’s a more difficult, headache inducing process, so make sure you stay on top of your referrals!
How long did the initial treatment take and how did it affect you and the others around you?
The initial treatment was a 10 hour surgery that removed my thyroid and most of the lymph nodes on the right side of my neck. Followed by radiation treatment where I was quarantined for 4 days. It was hard, being 25 years old; battling cancer was not something that was in my life’s plan or in my line of sight. It was hard, on the marriage I had at the time, which unfortunately contributed to a divorce later that year. It was hard on my family, as they were extremely worried, but we are a close family, so I always had their love and support.
In 2006, a year after my divorce, and my cancer treatments, I met the man who is my husband now. Three months into dating, I found out my cancer had come back, and had spread. My husband was extremely supportive in helping me with my fight. I was so lucky that I was referred to the top thyroid cancer surgeon in the country at the Mayo Clinic in Scottsdale, AZ. After another 10 hour surgery, I was told that my cancer is radiation resistant, which means that other than surgery, there were only experimental treatments available. My husband proposed to me four months after my surgery, and we got married, three months after that. He has been my rock and my biggest supporter for sure, during this whole process.
How easy was it finding an on base doctor to help you or are you using civilian doctors?
I do have an on base PCM for general medical needs, however all specialists are done off base. It was very easy to find good off base specialists who meet my specific managed care needs. I have in the past, had a specialist that I personally didn’t click with or feel his approach was in my best interest. Both my PCM and TriCare, was really helpful in finding me a new specialist. Especially if you are dealing with a cancer or other life threatening diagnosis, everyone involved, has the same goal, to get you the best care possible.
What were some myths that you heard about or were scared of when you received your diagnosis that you busted or found to not be true?
There weren’t really any myths I had heard. I had never heard of papillary thyroid carcinoma, when I was diagnosed, and was surprised, that actually it is the fastest growing cancer rate for women in the country. Luckily the survival rate is extremely good, even for someone with more advanced thyroid cancer.
Are you currently going through treatment now?
Unfortunately due to my inconsistent test results, I am currently still not considered in remission. Right now I am monitored with tests every 3 months, as well as an ultrasound every year and full body scans every two years. I am on thyroid hormone replacement as well as some other medications.
Recently, you had another cancer scare. How did that make you feel?
I had some news about some precancerous cells, which is definitely disconcerting. I may not be as concerned, had I not already known that my body has the ability to mutate cells. Does it make me more of a candidate for other cancers? I don’t know, but I’m making sure I am proactive on getting it treated before it happens.
Are you concerned about having to change doctors if you get ordered to move somewhere else?
NOPE! Since my Cancer diagnosis, we have PCS’d from Arizona to New Jersey, and the system is fairly painless…IF you are proactive, and take the necessary steps. It’s all up to you. Once you move, and you are enrolled with Tricare at your new location, and have either your new on or off base PCM, it will be very efficient. You can even start a lot of the leg work before you PCS, by contacting TriCare, and figuring out which specialists you want before you move.
What advice would you give others?
Advice to others…be proactive….I waited three months after my first diagnosis, before I went for a second opinion. I should have gotten a second opinion sooner. Be your own best advocate! Educate yourself…on diagnosis, treatment options and especially on how to take care of yourself, but don’t take mortality rates to heart! Everyone is different, and it only makes it harder to be optimistic. Make sure you have a good support system, be family friends, coworkers, other cancer survivors….some days you just don’t feel like being happy or strong, and having people there to support you for both the good and bad days is a huge help.
Thank you, Lesley, for sharing your inspirational story with the military spouse community! Do you have a story you would like to share? Please leave a comment below.