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Meet others living with Head & Neck Cancer: Introduce yourself
Welcome to the Head and Neck Cancer group.
This is a welcoming, safe place where you can meet other people who are living with head and neck cancer. Let’s learn from each other and share experiences from diagnosis through treatment and coping with symptoms and recovery challenges.
As you know, head and neck cancer is the general term for a broad group of cancers that begin in the head and neck region. This include oropharyngeal cancer, hypopharyngeal cancer, laryngeal cancer, lip and oral cavity cancer, nasopharyngeal cancer, paranasal sinus and nasal cavity cancer, salivary gland cancer, squamous cell neck cancer or ameloblastoma.
Let’s get to know one another. Why not start by introducing yourself? What type of cancer have you been diagnosed with?
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Lichen planus was diagnosed about ten years before my squamous cell carcinoma diagnosis. My dentist was very careless in watching the developing cancer. It was only after my bugging him for two years, that he sent me to a specialist, thinking that it was only the lichen planus. But that is water under the bridge and I decided to be proactive and only look at the future. But learning from the past is very important. If you have an open wound in your mouth that does not heal in two three weeks, have it looked at. Bear in mind that only about 2% of lichen planus will turn into cancer. It is very rear. I did not have any treatment for the lichen planus because I did not have any discomfort with it. Only after the open wound did not heal I started having discomfort. I hope this helps.
Loli
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1 ReactionShe does use screen reader software, I will certainly let her know. Thank you.
I really love that, its very true. Our "normal" day to day lives can trap us into inward thinking, I honestly believe that people just don't realize the effect it can have on us and those around us, its unintentional. I did meet some very kind nurses my journey who brought me in fuzzy socks and pajamas. One nurse in particular I will never forget her kindness. I was in quarantine for 3 days due to the high level of radioactive iodine and was not allowed visitors. Most of the nurses came to the front of the room and wouldn't cross the "line," I would get up to greet them. This one nurse put on a suit and came and sat with me on my bed during her lunch breaks and I was just amazed with her generosity, she made a positive impact on my recovery.
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1 ReactionHow long ago was lichen planus diagnosed? Was it treated?
Hi Carrie (@carebear), I'd like to add my welcome. I hope your sister will join us on Mayo Clinic Connect too. The site should be readable by screen readers. Does she use a screen reader software? I'd appreciate her feedback on the accessibility of the site.
Hi again, Carrie. I seem to be replying out of order. So glad your new husband is supportive. You really went through a difficult time there. Living with a new normal so young must have been hard. I'm a big believer in the importance of survivorship care and will share some of my ideas later.
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1 ReactionI can understand how you want to help your sister, Carrie. I have a sister-in-law with incurable head and neck cancer. She is far away, I don't know her well but I want to spare her some of the isolation and stress that we all go through by messaging her frequently. Sometimes I wonder if I am being too pushy but I can only try. Our group in New Zealand has had a donation to help patients like her so I'm thinking of sending her little gifts from time to time. I'm finding my way in this area. There's a slogan that a UK group has, "No one needs to tread this path alone."
Maureen, I love the Facebook group idea, how great! Helping others does help us heal for sure. Even though I cant do much being so far away listening and offering support for my sister has been beneficial for her and is a reminder to me that my experiences can have a positive impact on others who may be feeling terrified, tired, worried, stressed whatever it may be. For me I remember night time being the worst as I my mind would wonder and not rest. Nobody really plans for life to take a sharp turn. We can plan to try to give encouragement.
I hope that your recovery continues to bring you strength!
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2 ReactionsHi, 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.
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5 ReactionsThanks 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!
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