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The Specialist I Wish I'd Had on My Cancer Treatment Team

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For the past year, I have gone through so many phases of emotions — some that have felt unbearable. In July of 2021, I was diagnosed with stage 3 of a rare cancer that I had never heard of in my life: adenoid cystic carcinoma.

This cancer was noticed by chance by my ear, nose, and throat specialist (ENT). I had a reoccurring sinus infection and did not want to continue taking antibiotics, so I asked my ENT to check to see what was going on. She was under the assumption that I had a polyp, and she said she would “just remove the polyp and clean up the infection.”

When people say “My life was turned upside down,” that’s an understatement for what I felt when I found out about my cancer. As I returned to my ENT for a post-op visit, she came to tell me, “I’m afraid I don’t have good news.” She proceeded to tell me how rare this cancer is and that she would send me immediately to the cancer center for an oncology consult.

However, as she was telling me this, all I really heard was a muffled sound — like the kind you would hear in a cartoon. What she was saying just didn’t register with me, so I joked and said, “Leave it to me to get a rare cancer!” and immediately left her office. As I walked out to my car, I started to think of what I was just told, still not processing it, but the moment I got in my car, WHAM! The floodgates had opened, and I was crying uncontrollably. I tried calling my husband,  but I couldn’t speak, so I texted him what had happened.

I was on schedule that day as usual with therapy appointments and had to be back at the clinic to sit for the rest of my daughter’s therapy session. Thinking about how I was going to move forward after hearing my cancer news was not easy to say the least. We have a daughter with disabilities — which means endless therapies, doctor visits, surgeries and homeschooling. I did what I always do, though — keep pushing. My husband and I agreed to not tell our older kids and family about my cancer until I had gotten to see my team of oncologists for more information.

Within two weeks, I had met seven doctors on my oncology team: dental oncologist, medical oncologist, radiology oncologist, reconstructive oncologist, ENT oncologist, neurology oncologist, and nutritionist. Talk about overwhelming! Meeting all of these specialists felt comparable to being on a never-ending rollercoaster. The amount of information that was thrown at me was making my head spin — and there were no signs that it would slow down.

I learned that I had a tumor on the right side of my face — from my nose to my ear, just under my eye. I went from hearing that my top teeth needed to be pulled to getting the pallet of my mouth permanently opened, losing feeling and movement on the right side of my face, having cheek bone being removed and replaced with a 3D graft or a piece of bone from my back, having potential speech difficulties and not being able to eat like I once did, losing my ability to taste and smell, losing the ability to breathe normally through my nose, and losing the ability to feel my right ear. I’m sure I was told even more, but it all seems like a blur to me now.

Just days before surgery, I was told that the surgeon would also be doing a neck dissection where they would be removing all the lymph nodes on the right side of my neck to prevent the possibility of my cancer traveling down through my lymph nodes. It just kept getting better!

Surgery time came — and on my 48th birthday of all days! I woke up to a face full of sutures and a neck lined with staples along with a drainage tube. I was on my way to six weeks of recovery.

It was time to get fitted for my new best friend for the next six weeks of radiation: the infamous hard mesh mask for proton radiation treatment. As I tried to gear myself up mentally for treatment, my insurance threw in a monkey wrench and denied my treatment. That put me at the mercy of my team to overturn my insurance’s decision — which caused me unnecessary added stress but was successfully overturned. My treatment called for 30 days of 30-minute radiation treatments over six weeks, and they felt like the longest six weeks of my life.

Three weeks into treatment, I met an eighth doctor on my team — the pain management doctor. She was so needed because I had reached my breaking point and wanted to give up — crying to and from treatments. The pain was getting unbearable, and I wasn’t just breaking down physically but also mentally and emotionally.

I dug down deep and somehow made it through those six weeks of treatment — which included infusion treatments to keep me hydrated. My “graduation day” came, and I was an emotional wreck. I cried during the entire last session — from start to finish. To this day, I remember all the days when I would go to treatments and appointments crying and hearing everyone remind me how hard this type of cancer treatment is and how well I was doing. That helped me tremendously.

My family and close friends played such an important part in this whole process, but to this day, I feel that my surgeon needed to add an important specialist to my team: a psychologist. I believe a psychologist should have been number one, not number nine. Nothing can prepare you for what you may go through when you’re given the news I was given and the journey I have been on. Out of all the doctors I met with on my team, not one mentioned what this fight could and would do to me mentally and emotionally.

Mental health is such an important part of living with and treating cancer, and without help and support, your mental health can quickly bring down your physical health. I truly thought that my radiation treatments were going to be the hardest to get through, but I’m finding that I’m struggling the most with post-treatment life. In learning to accept the new me, I have physically, emotionally, and mentally changed. How do I get others to accept who I am now and not judge?

I didn’t stop crying at least once a day until I hit six months post-radiation, and even now with constant therapies for my shoulder due to my neck dissection, lymphoma therapies to keep swelling down, and pushing myself to stay physically active to rebuild the muscle I lost, I still have moments when I just want to give into negative thoughts, hide in my room, and cry. This journey has broken me mentally and emotionally, and I find myself having a hard time processing it. I learned quickly who my “real,” supportive family members and friends are and how to let the others go. I am at the point where I recognize that I need outside help and support — someone who isn’t biased and can give me a different point of view. So I reached out to my primary doctor and asked to see a psychologist to help me manage all of these emotions.

If I knew then what I know now, my very first conversation with my cancer treatment team would have been, “You forgot an important member of my team: a psychologist to help me get through this journey.” Nothing and no one can prepare someone for the amount of overwhelming emotions they may face after a cancer diagnosis, but having a psychologist on your team can help the process feel a little less confusing, emotional, and overwhelming. If you are ever faced with any type of life-changing event, add a psychologist to your team — even if you think, “I’ve got this.” That extra support can make all the difference in your mental health.

Image via contributor.

Originally published: December 8, 2022
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