Hi everyone. I am so thankful there is online support like this available. Back in Feb 2013, I coughed up a papilloma. I'd never seen anything like this before and it scared me. It looked like a piece of raw chicken. I'd been having this stuck in throat feeling for months but thought maybe it was my imagination as I was going through other medical female problems and tend to be a hyperchondriac. I took up this coughed up tissue to one of those immediate med type places and the doctor thought it was mucous. I insisted he send it off for pathology. The report came back benign squamous epithelium/papilloma.

Now, Monday morning I woke up and looked in my throat because I had that sensation again. This time I noticed on my uvula, a growth at the end. I almost didn't notice it because it looked like an extension of sorts of the uvula. I'm not sure if that's where the first growth/coughed up tissue came from the uvula.

I went to an ENT and he put a flexible tube down my nose to my throat. He saw no other problems. He ended up cutting off the entire growth on my uvula and said it was likely another papilloma. The results came back and the ENT called me today and said it is a moderate squamous dysplasia with HPV associated cellular change. He recommended I come back in 6 months or sooner if I feel or see anything again. I am thinking I should be going every month for at least a few months.

I did the Dr. Google search and I am very freaked out. I read dysplasia can one day just pop up in your mouth as invasive cancer. I've already had leukemia (bone marrow transplant in 1994) and have terrible health anxiety. I can't imagine having to deal with this constantly wondering if every odd sensation is a new papilloma that will end up being cancer.

Has anyone been in this similar type of situation? I read that many cases of moderate and severe dysplasia do turn in to cancer. Does that mean I basically am waiting to eventually become diagnosed with cancer?

Any thoughts, support and sharing your stories is much appreciated.

Hi Tevs

You are in a difficult position with this level of stress and having prior experience with leukemia.

You have already done the right thing by keeping tabs on your health and you just need to maintain your vigilance - but not to the point of driving yourself crazy.

Somehow you need to keep that balance of looking out for yourself without destroying your life with worrying.

Not a lot can happen between now and then and my feeling is that monthly might be a bit too much if you are keeping an eye on things anyway (just my opinion though). Maybe go in 3 months if you are still going crazy?

Whilst dysplasia can turn into cancer, mostly it doesn't - particularly when it is not severe (yours is classified as "moderate" so is still in the "might but probably won't" category) and often goes away by itself. Your doctor is giving it time to go away by itself. If, the dysplasia is still there after 6 months, your doctor is likely to investigate further but if you go sooner, he may still do nothing as the dysplasia may still go away by itself. I suspect this would not help your stress levels.

Hi Karen,
Thanks so much for your reply. You are right and I know logically, worrying about it stops me from living life. I have yet to find that balance though and it is a constant struggle as I'm sure many of the people on this support site have this internal fight too.

The papilloma containing the dysplasia was completely cut out but I think I will go to an ENT specializing in oral cancers to be checked. I don't know if he should have checked for clear margins as this was on my uvula. This is my second papilloma and the first one I coughed up just this past Feb and was called benign but said nothing as to cell type so maybe that was dysplasia as well.

I'm very scared but trying to get ahold of myself.

I'm glad to read you are doing great and appreciate your positive thoughts. Thank you for listening. :-)

Svet

Welcome Tev's

I would have been scared myself if I coughed up a piece of my inside. That's good you took it to another doctor to be identified. Papilloma's are benign HPV growth, and are likely to come back. There is no way to know which dysplasia is likely to transform to cancer, and seen rates from 3-15% for moderate dysplasia, which in between mild and severe. Did you have a stem cell transplant with the bone marrow transfusion, and GVHD, which I don't much about. but I recall that this increases the risk of oral cancer, how long after, I don't know, and to mention,

I wish the best on your follow-ups, and continued negative cancer findings.

Hi Paul,
Thank you for your response. I did have a transplant from my sister who was only 1-1/2 years old at the time and I didn't have GVHD. I did relapse with CML (leukemia) one year after transplant and had follow treatments/ leukocytes and have been cancer free so far since 2001.

Does this mean that 3-15% become cancer if the lesion/growth is not removed or does this mean that the lesions that may recur are 3-15 percent likely to return as cancer?

Thanks so much and thank you for the support.

Svet

Just in general, that moderate dysplasia has a 3-15%, maybe less, chance of transforming to cancer. Yours was removed, so it cant progress anymore. I don't know the risk of papilloma returning other than likely.

Thank you Paul. My thoughts are with you. It's wonderful to have people on this site to turn to. I've been reading some very supportive, understanding and knowledgable posts.
Svet