Hello, I am very glad to have found such a wonderful support group for oral cancer. This process is scary and being able to read about others' experiences has been helpful and reassuring for me.
Before I tell my personal story I need to give you some background on my experience with cancer. My father-in-law died of tongue cancer 10 years ago after a 2 year battle. His tumor was located on the back of his tongue and was quite progressed at the time of Dx. He had radiation, chemo, and surgery, but he unfortunately was not able to beat it. With the help of hospice we were able to care for him at home and we were all there for his final few weeks. Four years ago my husband had malignant skin cancer that was successfully removed and he has one more year to being cancer-free.
Earlier this spring I noticed an irritation on the right side of my tongue, and I thought I had bit it. As with anytime you bite your cheek, tongue, lip, etc I kept biting it and even woke up one night chewing on it (very odd for me) - so I figured it wasn't healing because I kept irritating it. I bought mouth guards to wear at night, but they didn't work. When it turned into an abnormal growth I went to see my doctor right away and he sent me to a specialist. It was biopsied and came back
HPV P16+ SCC. Unlike most
HPV oral cancers, mine is located on the side of the tongue rather than the back of it. I was sent to my surgeon who specializes in reconstruction. My CT scans showed that it hasn't spread to my lungs, but they will not know if it is in my lymph system until after my surgery. My surgery date is scheduled for August 20th, I will have a partial glossectomy and neck dissection where they will sample 3 lymph nodes. I am not sure how much of my tongue will need to be removed, so I don't know the extent of my reconstruction and recovery just yet. I will find out after my surgery if I will need radiation and/or chemo treatments. I have met with the radiation and chemo doctors and they have gone over my treatment options and side effects with me in case I will need to have it. I have also met with my speech therapist to begin planning for my recovery therapy.
I am usually quite healthy and can't even remember the last time I was sick. I don't do well with hospitals, needles, IVs, etc and feel quite anxious, queasy and uneasy. The first shot I remember as a child at age 4 the nurse stuck the needle all the way through my arm - I thought I had recovered from it but I now have anxiety issues. Do any of you have any suggestions for relaxation techniques or overcoming a fear of needles?
From researching it myself it appears that
HPV cancers respond better to treatment. This is kind of a double edged sword for me because I am very upset with the
HPV diagnosis. I have always been very careful and my husband and I have only been with each other and we've been together for 16 years. To find out that I have a cancer caused by an STD, and one that you can transmit simply from kissing and that could be dormant for so long is very upsetting and disturbing for me. My mother had
HPV dysplasia in the late 70s and I have seen studies that suggest it can be passed on to children from their mother through the bloodstream, breastfeeding, and close contact. I am worried for my husband and hope that he doesn't develop any
HPV-related cancer in the future. He has been totally loving and supporting through this process and isn't very concerned. This is more of an issue for me, and I am very afraid for him now.
Overall, I am healthy and have early detection so I am expected to recover just fine. I am staying positive and keeping busy. I am also very appreciative of this support group where I am able to discuss my issues and fears.
