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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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Mine went away when the cancer was removed and I haven't had it since which makes me wonder if it really was lichen planus in the end if that makes sense. I was told it usually goes away by itself after a few years.
Does LP ever go away?
Began as extremely painful sores under tongue, so I had to get some answers. Doc diagnosed pretty quickly. Not cancer, which he said was very rare. But I am quite nervous because it is still there to an extent. Interestingly, the medical books and other info always stress this is rarely painful.
Began as extremely painful sores under tongue-- came and went. Quickly diagnoses as LP. Only treatment was steroids, which i didn't want to do. It came and went a couple of times. Doc said cancer does not come and go. Eventually settled down to minor irritation, but that is still there. It changed my entire life. No spicy food (which I love), had to give up green peppers (possible trigger), which i used to eat every day. Hot liquids hurt somewhat.
Yes, mine was painful too. Had to take steroids to kill the pain while I was on an overseas trip. But initially, when it consists of a white stripy rash in your mouth, it isn't very sore - just makes certain foods sting.
About lichen planus, my situation was similar to Loli's except that I had a very painful lesion which I think was called erosive lichen planus. In 2007 after many years of pain, I had it diagnosed as squamous cell carcinoma. Maybe it had been that for a long time. Very rare for it to turn to cancer which is why my GP and dentist believed the LP diagnosis that the oral surgeon gave - for years. Like Loli, I regard it as water under the bridge BUT I'd hate anyone else to go through what I did. As she says, any sore that doesn't heal for 2 - 3 weeks insist that it is seen by a specialist.
Hi @jshdma, can you tell us a bit more about your experience with lichen planus -- if you're comfortable doing so of course? How did you get diagnosed? Were you diagnosed with cancer as well?
Thank you so much. For me LP was extremely painful from the beginning, but no open sores. All I read about LP says "NO PAIN." But this is far from true. I wonder where this myth comes from.
I like your post very much. It brought back memories of all the kind nurses that I had contact with. This are the kind of memories we need to remember every day. Having positive memories is healthy, and also being thankful every day is healthy. I am thankful for you all. I am very happy this group has been brought back to life. Thank you Colleen
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1 ReactionLichen 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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