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Joined: Oct 2006
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Joined: Oct 2006
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I have recommended the OCF site and patient forums before as a medical librarian and on my personal blog now for a couple of months, so I thought it was time I introduced myself. I had experienced left cheek pain on contact for the past 3 years, but didn't think it was important. I figured it was due to:a)too much phone use at work; b)stress when my husband was activated for military duty the next year; and/or c)being the mother of two (wonderful) teens. I mentioned it to my dentist last November, who said it wasn't TMJ, and that I should see my family doctor. I noticed a lump coming up in April 2006, and the pain was constant and increasing. One of my coworkers saw me holding my cheek, and said she would nag me until I went to the doctor - that did it! When I saw my doctor, she ran her hands down both sides of my face, making me gasp (I went out of my way to avoid hugs or anything on that side of my face!). She predicted it was a parotid tumor, and referred me to the head and neck guys. After a titre for mumps (well, they have to prove everything, I suppose, and patients' word doesn't count), I underwent a core biopsy which was inconclusive (turns out they were looking for lymphoma). The next week (June 22) I went in for another biopsy, with the knowledge that if they found anything, they would take the parotid. That was fine with me - I figured it was best at room temperature anyway, since all it was causing me was pain. I visited the surgeon the next week (June 30), and he told me he was very surprised to find a tumor, and that it was adenoid cystic carcinoma, and that I would need radiation. The tumor board would meet the following Monday to decide if I should have a radical neck operation done - but the decision was that radiation would be all the treatment I required at this time. My IMRT radiation experience is pretty much outlined on my blog http://cheekylibrarian.blogspot.com, with the hope that anyone else having to go through it will find something useful. I don't know when taste will return, but I haven't had mouth sores for a week now, so I figure things are healing. I have learned a lot from this forum, and hope that I will be able to give back to others. I just want all family members, friends, and fellow survivors to know that we all can use medical and public libraries for access to information for our health questions. Tell them Teresa sent you!

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Thanks. I start IMRT and chemo Oct 17 (6-8 wks)for CUP and have saved your blog to read through carefully. It is hard to learn all this information and know what to read first and then what to push for with the doc. Your blog looks very informative with all the good links. The first thing I asked for from the RO I got back an answer something to the effect of don't worry he is an expert and is up on all the latest in the field. But when I asked if I could email them a report I had a question no one there had email??? How can they be up on the latest without access to the internet? You don't need to answer this I'm just rambling bkz of the way I felt put off by the questions I tried to ask about my treatment. I have decided to put my questions in writing and present them to him and ask for a written response so I can study what he has said and have a record of it. Seems like many time I ask a question and I can't remember what the response is later. That's where the library comes in handy. and this forum


Monty Cunningham, metastatic squamous cell carconoma with UP,(re-occuring) & thyroid cancer
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HI Teresa
I was diagnosed with ACC in Jun 06. Unlike you ended up having an Operation to remove the tumour. Due to start Rad within the next 14 day

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Hi Rolf,
I had the operation June 22. I didn't know until I woke up if they found a tumor or not, then had to wait for a week for the cancer diagnosis. Stay close to your radiation therapy team - I found the therapists and the clinic nurse my strongest allies. I hope some of my travels help you out. -Teresa

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Hi Monty,
good luck with your questions and answers. I have found many sources of answers, and generally run them by the physician and/or nurse at the clinic for verification that the answers were what I should pay attention to (some haven't been at all). Your team has access to the internet, but they may not give out their email addresses (or may not have email) due to liability concerns. I brought copies of articles in with me during most of the weekly checkups I had during radiation, just to make sure I was following the right path. I tried to show the professionals (in a non-confrontational way) that I was interested in following the path they prescribed and to stay as healthy as possible during the trip. It is kind of a two-way trust building. My family caught most of my frustations - I remained calm when talking with the health professionals (even though this is probably the most stressed=out time in my entire life!). I look forward to hearing about your treatment path to come. -Teresa


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