Shawn's story

Shawn's story 

Please can you tell us about your diagnosis with Adenoid Cystic Carcinoma?

Well, thank you so much for having me here today. My name is Shawn Elizabeth George and I live in Avon, Connecticut in the US and in 2017, I was diagnosed with the rare salivary gland cancer, adenoid cystic carcinoma.

I actually had been going to the doctor for about eight or nine months for sinus issues and the doctor I was going to, I kind of just got frustrated because nothing was working and I decided to change doctors. And in changing doctors in that first appointment, she said, "Something's going on." And so she encouraged me to go see an ENT.

Now, I'm married to my husband Stephen and we have three kids, Kate, Gavin, and Matthew and at the time they were 10, 9, and 4. And I'm on my way to my ENT appointment, but I was kind of like, "Oh, maybe I shouldn't go." But I had this inner like prompting to go. So I went to the ENT appointment and in that appointment I thought I'd leave with probably nasal spray or something and unexpectedly my doctor, Dr. Tessman in Farmington, Connecticut, showed me that he saw a growth in my nasal cavity and it was growing into my palate. And in that moment, he actually said, "Please go next door to get a scan. Call your husband and come back after your scan today with your husband and we're going to review the scan." And so in doing so, there was the tumour that he had seen that showed up on the scan and the next week I had the biopsy and it was confirmed I had adenoid cystic carcinoma.

So things moved very quickly?

Yes, it went through very quickly and as, unfortunately many of you know and you know, it's paralyzing. You know, you're on one path as a in life and suddenly you're just called for whole another one different direction taking a 180.

Did you have to wait long until treatment started?

So, I ended up going to three different places. I think I needed to figure out what was the best path and so this appointment, I believe was in January of 2017. And so I immediately went to Hartford to see a doctor. I went to New York to see a doctor and I went to Boston to see a doctor, to get what they would do. We decided to go to Boston. And so in March of 2017, I went to Mass Eye and Ear with Dr. Emerick and I had what's called a partial maxillectomy. So, I had much of the roof of my mouth removed along with my upper back three teeth and gums to remove the tumour. I did not have clear margins. So fast forward to June, excuse me, May to June of 2017, I end up at Mass General and the treatment was to have seven rounds of low-dose chemo and 35 rounds of proton beam radiation.

After treatments, I ended up going for three-month scans which increased to six-month scans to nine-month scans and I'm at annual scans. And I get a head and neck um MRI and I get a chest CT. Um for many who know of ACC, it is often known to come back in the lungs and liver. So, I am scanned fully and I'm so thankful to be NED which means 'no evidence of disease'. You know, some people say, "Oh, you're in remission." In ACC, you don't get called into remission. It's something because it of the character of the disease, it can come back later.

So, we have to keep an eye on it every year. Um and the prayer is that it never comes back. So, in the meantime, I found myself thankful to be NED, but I'm very aware of friends in our ACC and salivary gland community who don't get the same, you know, NED on their scans. And so, I have made it a point to become an advocate for rare cancer research and awareness.

How do you speak and eat after your surgery?

Absolutely. In March of 2017, after having my partial partial maxillectomy, I have what's called an obturator, which is a artificial removable device that serves as my palate. So, it has, I can take it in and out. Some people opt to have what's called a free flap surgery. So, part of like the skin of a forearm can be reconstructed to into someone's palate. That was not the path that I thought was best for me. And so, I have the obturator and it's been great. I've had this one since 2017, and I'm in the process of getting a new one made. I will just say it's not the easiest process, especially um the coding for a medical device to be taken care of by a dentist or a maxillofacial prosthodontist.

So, if any anyone has questions and wants to ask me about that, um who's going through this, I'd be happy to at least share what I have learned through the process, but I'm very thankful to have the obturator cuz it does help me speak, eat, and drink, but depending upon its fitting, sometimes I can't make like a fishy face. I you know, there's different there's different things, um but overall, it's good. Um yeah, so it's been it's been a blessing.

Does it hurt?

Overall, it does not hurt. Um I can understand people's reservations to getting one and wanting to free flap. I will say the benefits I have experienced from it because of radiation treatment, I do have chronic sinusitis. And so, having that availability to cleanse my sinuses and having doctors keep their eyes on the actual area, I find to be extremely beneficial. The free flap just did not sit right with me, but I know many people who have that and that was the right choice for them. So, people need to determine for themselves what they would like. I will say it has been It has been great.

Without it, I sound like somebody um who is deaf. And the reason I say this is because um I never really thought about what I sounded like, but I was brushing my teeth one day and I went to my front door. The doorbell had rang and there was a gentleman there and I started talking and I didn't have it in. And he was so sweet, he started signing to me. So, he thought I was deaf. And I thought it was like the sweetest moment because this person met me where I was. So, you know, it is one of those things where I don't articulate very well without it. So, um it's a blessing to be able to have this device and be able to, you know, speak to loved ones or strangers at my door.

What advice would you give someone who has been diagnosed with ACC?

Well, I mean, I think the the four words or the the motto I live by is pause, breathe, pray, and live out love. And the pause is you're it's scary. It's unknown. There's so much. And the thoughts that we have I remember like having a moment in my bedroom with my husband, crying my eyes out and I'm like, I just see the family of five turning into a family of four. Like the snowball of thoughts. And so, I would just encourage to pause and notice the thoughts that are coming in and then not every thought you have is real.

And then the breathe is take a deep breath and you know, we're still here and that's such a gift. And so, just remember there's breath in our lungs and we are here and even though the path may not be easy or certain, you know, we still get to be here and get to walk beside our loved ones. And so, how we we can't control the circumstances, but we can control our response to them. Um and sometimes we don't feel like we're in control of our response to them. I'll be honest, you know, it's hard. Uh yeah, but that practice of pausing, breathing, and then prayer is important to me.

I know that doesn't resonate with everybody, but I would also say align with love. If prayer is not part of your life to align with love and just, you know, just remembering to for me it's prayer and just really surrendering the circumstances for me to God and aligning with love, which is being patient to be, you know, kind to myself, to be kind to others even though the circumstances may make me feel like I'm a little unnerved and I can get short with others. Just um just try to align and just become prayerful and align with love. And then living out love, the fourth part is I found at times I had to live out love towards myself. I may need to rest. I may not be able to show up for people. I might be too undone to really be present for people.

So, living out love might be taking time to be still myself, but also I found in my treatments um going for treatment and stuff was my first I would say this, my first week of being in Boston, I was really heavy-hearted. I was just very focused on I'm away from my three kids. You know, it was it was heavy, it was hard. What is the circumstance What are the outcome going to be? I had no clue and I was just so undone. And then I went home that weekend and I had this, you know, awareness of I'm in Boston, but maybe I'm not just in Boston for me. Maybe there's someone on an elevator who needs a smile. Maybe there's somebody who is sitting in the waiting room next to me who needs someone to listen to them. Maybe there's someone who needs to be encouraged, like a nurse who needs to be encouraged. So, I kind of shifted my perspective of yes, these are my circumstances.

Yes, this isn't easy, but also I still get to be a vessel of love wherever I am. And so, some days we might have that in us and some days again, living out love might be towards ourselves. But I would encourage people going through it is just give, you know, pause and notice where your thoughts are, breathe, pray, and then live out love. And, you know, invite people around you is the other thing I would say. Don't try to do this alone. And, you know, there are circles of love around you. Um for me, like I said, faith, but also your your family is around you, your friends.

4th October is World Salivary Gland Cancer Day. Will you be supporting it and is it important to you?

Absolutely, I'll be supporting it because we need to raise awareness and funds for salivary gland cancers. You know, it is a rare, it is a rare cancer. And the you know, when there's more people who have it, more awareness is drawn in. So, we need to make noise and be loud in a loving way, but say we're here. We have loved ones who are going through this. You know, I'm currently NED, but the people who are going through it matter to me, you know, and I just want there to be people are aware of it and that there is research being done to help create better treatment options for our rare cancer and salivary gland community. And one day that there could be a cure, you know? And again, just going from different angles, you know, just be salivary gland, there's many of them, but let's partner together and do what we can to raise awareness, raise the funds so we can get better treatments, and one day there'll be a cure.

Do you have any messages for the SGC community?

I'm here to listen if anyone needs to talk. You know, I really feel like knowing that someone hears you, so finding somebody who has been through a parallel experience, there's just a knowing and understanding each other. I mean, I call it my ACC family. You know, we have a salivary gland cancer family. You know, we never asked to be invited to this family, but we are a part of it. And why not be here to support each other? We may I may not have answers, but I can be a listening ear. We can be bridges for people, and I I'd be happy to be here to support somebody in listening, be a bridge, um and just know that they're seen, they're heard, they're loved, and they don't have to go through this alone.

Last updated October 2026