Meet others living with Head & Neck Cancer: Introduce yourself

@jeffk @lisa_sj99 @jtw96 @mrsjhagen18 @sylviapf @lzzie @loli @karly @trudivo @angelag @ssimons @deborahe @gaybinator @emmur16 @udderplace

Welcome to the new Head and Neck Cancer group on Mayo Clinic Connect. This group dedicated to conversations and connections about all types of head and neck cancers will make it easier for members to find a relevant discussion to ask their questions and share information.

If you don’t find a discussion that meets your need then jump right in and create a new one! Be sure to invite other Connect members to join you. Inviting is easy, just tag a member by using their Connect member name which starts with an “@” sign. Also, don't forget to +Follow the group. Learn more about how to follow, @mention and use Connect here: https://connect.mayoclinic.org/get-started-on-connect/

This is your community so let’s help each other by sharing your story, asking questions, and learning while we figure out how to deal with our specific type of cancer or supporting someone with cancer.

Hello everyone. I am Maureen, a New Zealander. I've had head and neck cancer since 2007. A small tongue lesion the first time and then recurrences in 2009 and 2014. The last two have necessitated reconstruction so i have a free flap for half my tongue and a small part of my inner cheek. Both these were on the same side so I had radiotherapy in 2014 to try to stop it recurring. The last surgery left me with a scarred chin and severed facial nerve which means I can dribble saliva (and food) out of my left lip if I'm not careful.
My cancer was a result of long term oral lichen planus, a usually harmless condition that can turn to cancer in rare cases.
My life with cancer has been eased my active participation on online forums. I help run a Facebook group in NZ and used to be actively involved in the Oral Cancer Foundation in the US. Helping others has helped me more than anything else has!

Hello all! I am so excited for this new space for head and neck cancer survivors and caregivers. I'm hopeful that we might support each other as we journey.

I was diagnosed with squamous cell carcinoma ten years ago, at age 24. My dentist found an ulcer under my tongue that looked suspicious. The biopsy was positive. I have had five additional diagnoses/recurrences since then: right neck nodes, floor of mouth, mandible, soft palate, and left neck nodes. I have undergone many different surgeries, chemotherapy (erbitux, cisplatin, taxol, carboplatin), radiation (IMRT and proton-beam), and immunotherapy (PD-L1 inhibitor). I am currently one year cancer-free!

I've learned a lot over the past ten years, and I am hopeful that I might support others as they face diagnoses. I am looking forward to connecting through Mayo Connect!

Hi,
My name is Loli, and I live in Virginia; but I am originally from Mexico City. I was diagnosed with squamous cell cheek cancer resulting from oral lichen planus, like Maureen, in 2013. I underwent surgery which included a reconstructive flap in my cheek, and also radiotherapy, which left me with less saliva, less molars and more life. Sharing with others has been instrumental to my recovery also.I have learnt to be thankful for every little detail in my life. I am doing well, and live a normal life, though one cheek is bigger than the other, and every single day I am aware of certain limitations that remind me of my humanity.

You have been through so much, Adrienne. I'll be very interested to hear about the immunotherapy which is just coming into play here in New Zealand. I'm at the other end of the age spectrum but we have lots in common. It's such a difficult cancer that we need the support and understanding of our peers.

Yes, Loli, I know what you mean. I had some good news today. The local Oral Health department is going to make me a new dental plate - the first one made in 2015 has become uncomfortable. I'm feeling quite pleased with myself.

Hi my name is Carrie and I live in Minnesota. I was diagnosed with thyroid cancer when I was 22 years old. After 3 surgeries and radiation therapy I am now living cancer free but not without reminder each day. I like many of us, will be on medication for the rest of my life, and have a cyst in my throat that continues to fill and empty on its own but never ceases to cause my doctors to wonder! One of these days I might just have it removed but they tell me they will have to cut my tongue in order to get to it as it lives on a nerve. Surgery number two was a successful one but also resulted in the loss of my parathyroid, who knew those tiny buggers (2 small glands) regulated so much in our bodies! it took years of getting used to the medications and finding my appropriate individual
level before I started to feel like myself again. Now my sister has been diagnosed with thyroid cancer so I am also on this site to support her. She is blind so I'm not sure that she will be joining however I will certainly encourage her. I have been cancer free now for about 6 years and sometimes wish I could gain my 20s back but also know that we are stronger because of our challenges. I also want to be supportive and positive for my sister even though she lives in Connecticut, its hard to not be face to face with her.
I am happy to meet all of you, read your stories, and hope to connect and learn more about the demons we face and how we can continue to find strength from our experiences.

Hi Loli! What an encouraging story. I share many similarities: "less saliva, less molars, and more life." It feels worth it, doesn't it? It sounds like you are four years out from treatment. How often do you have follow-up now? Do you have scheduled scans?

Thanks for sharing your story, Carrie! I agree- I always took my saliva for granted before! Have you had any dental issues due to the lack of saliva? I feel like I am constantly getting cavities filled due to my dry mouth.

I totally understand the feeling of losing out on your twenties. It feels like an additional challenge to deal with this at that point in your life. Did you get the support you needed from friends? That felt difficult for me when no one seemed to understand what I was going through.

I'm sorry to hear that your sister is now facing a cancer diagnosis, but what a gift she has in you! Will she have surgery to remove her thyroid? Or will they use radiation?

Also, so happy to meet a fellow Minnesotan!

Hi, Its very nice to meet you! Yes my sister is going to have full removal as I also ended up having after 3 surgeries. My tumors were so large they were pressing on the trachea.
I have ten fillings now and it all started after my first surgery and hormone replacement. I really do think its hormone related.
unfortunately I didn't have a lot of support. When I was diagnosed in my twenties I had just come off my parents insurance and was without insurance as I was a newly wed. I ended up in therapy to assist with my health status. I found out I had cancer a month after my honey moon and my husband at the time was dealing with his grandmother's brain cancer diagnosis, my cancer was considered survivable and I didn't get much responsiveness. I didn't have a computer as I was just starting out and had to take a lot of time off work for my treatments, the Cancer Society offered assistance with rides but I think something like this is wonderful for people with technology to connect! In the end my husband filed for divorce but I do think it was for the better and my overall health. He wasn't able to see my complications from my perspective and didn't want to put forth effort to assist me with my recovery because " it should have been easy enough." It was a trying time.
Its true thyroid cancer has a high success rate and is considered survivable but the recovery is a long road, its really a lifetime. Medications, hormone imbalances, diet and lifestyle changes (just a few) can be tricky for many of us. Now I am dealing with infertility which could have nothing or everything to do with my hormone journey, we just don't know.
Anyhow, I now have a wonderful husband who views life as precious time, he is a courageous man full of support and has a positive outlook on the time we do have together. I am blessed to be able to spend some cancer-free time with him (and hopefully a family some day)!
Congratulations on the one year anniversary! I am happy you are here to connect with and in MN, we are new here just moved this past summer. Happy to meet you.