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, soft tissue sarcoma or thyroid cancer.
Let’s get to know one another. Why not start by introducing yourself? What type of cancer have you been diagnosed with?
Interested in more discussions like this? Go to the Head & Neck Cancer Support Group.
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?
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.
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.
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.
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.
Does LP ever go away?
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.
Yes, it does make sense. Doctors do not always have all the answers or sometimes, they have the wrong answers. But YEARS– that’s a long time. Thank you for your information.
That is interesting. I remember having jalapenos for the first time when Subway came to NZ about 15 – 20 years ago (?). I’m terrible at remembering time frames. It was agony and that is when I first remember having oral lichen planus. I’ve heard of people having “light” treatment for lichen planus of the skin. It’s a tricky condition. We have an oral medicine specialist in our group. I’ll ask her what the latest info is on oral lichen planus.
Interesting about the jalapenios. As I said before, I am from Mexico and have had spicy food all my life. I think the jalapenios exacerbate the LP. Now that Maureen mentions it, my oral LP disappeared after surgery. But my LP was fully blown. This were the words of the first specialist I saw. I just had to open my mouth, and he new immediately I had cancer right there, where the LP was very obvious. But I had other symptoms. In my nails and vagina and scalp. Not on my skin though. I had forgotten about it. Hmmmm