Survivorship Care That Works

“For the first time, It feels like I’m truly doing something to take care of myself.”
Carcinoid Cancer Survivor
Tuesday, September 19, 2017 - 4:59pm

There are countless things to say about going through cancer treatment and testing, but in my experience, it’s the elements of survivorship that often go ignored or are put off to deal with at a later date. For some, that could only be a few weeks or even days. For others, it can mean years between finishing treatment and receiving survivorship care.

Just to clarify, I’m not talking about the periodic follow-up scans and bloodwork that help doctors ensure your cancer doesn’t come back. Survivorship care is literally taking care of the survivor, physically, mentally, emotionally and sometimes spiritually.

When I got the all-clear from my team of doctors, it took me only about a month to start asking around about counseling services. I had found some open spots through my primary care physician, but I knew I had a big suitcase of emotions to unpack, and it was imperative that I talk to someone who knew how to help cancer survivors. When I finally got ahold of a practice, my hopes of finding an ally were crushed.

“I’m sorry — we can only treat active patients.”

Never miss another Cancer Talk blog!
Sign up to receive our monthly Cancer Talk e-newsletter.

Sign up!

Those defeating words made me feel like I’d been dropped off in the middle of an unfamiliar place with no map. It felt like my supportive medical team had abandoned me, just because I was no longer surrounded by consistent, attentive medical care. Despite what everyone says about how proud you should be to have survived cancer, the strong messages of encouragement and support disappeared, and coupled with my lack of adequate survivorship services, that left me completely unequipped to deal with anything.

There was nowhere for me to go except to return to my primary care practice, where I started seeing a social worker about one year after my diagnosis. She was nice, but she honestly didn’t offer me any help with trying to navigate the sea of emotions cancer had subjected me to. She wanted to speak about other things and ask different questions, but I wanted to talk about cancer. After a year of stagnant sessions and trying an anti-anxiety medication that seemed to be ineffective, I was stuck again.

That was the time when I really committed to participating in the Young Adult Program support group, which I’ve happily been a part of since. But despite meeting with other amazing survivors, sharing stories and finally connecting with people who understood what I was going through, I started realizing there were many more personal feelings I haven’t admitted to anyone, not even my journal.

While I’ve also found blogging to be a valuable outlet for sharing my experience as a survivor, it becomes more apparent with every word I write that there are still a LOT of things I need to talk about, and I needed help dealing with them.

Thankfully, around the same time, our group was told that the Roswell Park Survivorship Center was open and available to us as a free resource. (If you or anyone you know has gone through cancer, you know that free support services are as invaluable as it gets). We could go to counseling, try acupuncture, aromatherapy, reflexology, acupressure or even get a massage. It took me a few months to make the call and schedule my appointment, but I couldn’t be happier that I did.

I’ve been going once or twice a week for acupuncture and counseling. So far, I’ve really enjoyed it. It feels like I’m truly doing something to take care of myself, and for the first time EVER, I don’t even have to worry about the cost. All the stress around going into a doctor’s office and worrying about insurance just melted away after my first visit.

Everyone there is dedicated to helping survivors deal with whatever they might need. I’m excited to see how the center will expand and enhance its offerings in the future. If you’re even remotely interested, please call and make an appointment! I can assure you that you won’t regret it.

Editor’s Note: Cancer patient outcomes and experiences may vary, even for those with the same type of cancer. An individual patient’s story should not be used as a prediction of how another patient will respond to treatment. Roswell Park is transparent about the survival rates of our patients as compared to national standards, and provides this information, when available, within the cancer type sections of this website.