i AM NEW HERE ALSO, APPEARS AS THOUGH IF ONE HAS THE BEST ENT DOCTORS- ROBOTIC SURGEONS THEY
KNOW WHAT TO DO.

Me again 🙂 I guess I should have kept scrolling- we seem to have a lot in common!

I have had very similar responses from doctors. You and I are probably wild cards, and doctors haven't seen many patients that have necessarily fit our patterns. I beg my doctor each time to pull out his crystal ball and give me something, but I can't get it out of him 🙂 On one hand, it really sucks. I want to know what my prognosis might be. BUT, after six bouts of cancer, I recognize that tomorrow is not guaranteed in a way that only survivors know. I am living each day intentionally, trying to make as many memories with my six year-old as possible, not knowing what the future might be.

Here is a snapshot of my story (FYI @jamienolson):

2007: I was diagnosed with squamous cell carcinoma in my tongue at age 24. It was not HPV related. I had a partial glossectomy and neck dissection. The surgeon left positive margins in my tongue, so I sought out a new surgeon. I underwent a second surgery, chemotherapy (erbitux), and six weeks of IMRT.

2008: A little over a year later the cancer recurred in the lymph nodes in my neck. At this point, my doctors recommended cisplatin for chemo, so I ended up going through fertility preservation and freezing my eggs. Had another major surgery (removed muscle, cut nerves, removed many levels of lymph nodes in right neck), chemo (cisplatin and taxol), and six weeks of IMRT.

2013: I made it ALMOST FIVE YEARS, and became a mother during that time. Then, in 2013, cancer was found in the floor of my mouth. I only had surgery for treatment because radiation wasn't an option (the tissue had already sustained so much radiation) and chemo alone didn't make sense (it didn't seem necessary as I wasn't at a palliative stage).

2014: Throughout 2014 I dealt with a lot of pain and doctors thought I had osteoradionecrosis. We found out at the end of the year that it was cancer that had infiltrated my jawbone.

2015: I went down to MD Anderson and found fantastic surgeons (although I am quite a big fan of Mayo these days!). They removed my mandible and rebuilt it with my fibula. I also managed to get a tummy tuck out of it (hey, you gotta get every perk out of this you can!). I had a tracheotomy and feeding tube put in. The surgery had negative margins, and I thought I was in the clear. I didn't make it three months before the cancer returned. This time in my soft palate. Different surgeon attempted to remove it and left positive margins. He decided it was too big to remove without affecting my quality of life. Spent the summer getting chemo (carboplatin and taxol). My soft palate "healed" up and no gross tumor has returned there. A miracle! However, that December, I noticed two lymph nodes on the left side of my neck (all cancer thus far had been on the right side).

2016: Began immunotherapy clinical trial at Mayo. Cancer seemed to respond for a month or two and then started growing exponentially. Dr. Moore at Mayo performed a surgery in July to remove the malignant lymph nodes. I followed up with proton beam radiation and chemo (carboplatin and erbitux). December: CT WITH NO EVIDENCE OF DISEASE!

2017: CT every three months. No evidence of disease so far!

@adriennef Hello Adriene! I thought I would read some of your posts in order to learn more about you. Girl, you are a miracle, and an extraordinary woman. I am very glad that joined the Connect group as a mentor. I can see where you can be the bright beaken of hope for those who are going through something so scary. For all that you have gone through, I wish I could send you a thousand hugs. -Terri