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AdCC -

PostPosted: Thu Jan 26, 2012 12:53 pm
by kellygirl
Hi - my name is Kelly. I was dx w/AdCC while 9 months pregnant with my second son. I had developed a sore throat and was looking down my throat with a flashlight and discovered the lump on my palate. I went to my OB and of course he sent me to ENT. Because I was pregnant and close to giving birth we opted to wait and then run a CAT scan. At the time they didn't think it was anything to worry about. So a couple weeks later I gave birth and I followed up with my ENT. I remember receiving the "phone call" telling me that they couldn't be sure but it looked like a malignancy. My ENT sent me to a another ENT who was a specialist in head and neck cancers and he did a biopsy. That's when the diagnosis was confirmed that I had a tumor in the soft palate, AdCC. One month later I underwent a neck dissection, free flap, resection and reconstruction of the soft palate to remove the tumor. I developed a MRSA infection and double pnemonia and stayed a month in the hospital. I left the hospital with a PIC line for 6 more weeks of IV antibiotic therapy. From there, I began 35 treatments of IMRT and finally ended treatment in March of 2004.

About 6 months later I realized that my jaw was shifting and went back to see the ENT who performed the surgery. They opted not to pursue futher reconstruction as it was too risky. They sent me to another ENT who was doing high risk reconstruction. I met with him and decided to that he could help to reposistion the jaw back into occulusion and scheduled the reconstruction. I ended up undergoing 36 hours of surgery in 5 days including a corotid artery blowout while on the table. The surgeon was able to save my life but in order to do that the facial nerve was cut and my pectoralis was cut and attached to my neck. When all was said and done I was lucky to be alive. I hid for a year or two because of they way I had looked. I went to numerous surgeons looking for someone to help me to no avail. I was told repeatedly it was to risky.

Finally, I found a ENT who did help me and underwent reconstruction. It was very successful and I focused on healing from another big surgery. By now I was about 4 1/2 years cancer free, but not for long. During my routine PET they found 3 nodules in my lung. The cancer had returned so I opted for surgery to remove the tumors. 6 months later another tumor was discovered in the opposite lung. So once again, I had the tumor removed. Now all along I've continued to undergo plastic and reconstructive surgeries to refine things, improve my ability to eat and speak.

So, I had about another 2 years under my belt and just found out a couple weeks ago I have another reoccurance in lung. The location make surgery not advisable because it would remove just over half of the lung. So, I'm scheduled to start radiation in a couple weeks. I'm glad to at least have an option at this time for treatment but sad at the same time. I'm only 43 years old with 2 boys ages 8 and 11. I've undergone well over 30 surgeries. I'm a single mom now and have changed my life radically. I now teach yoga to individuals who have had cancer touch their lives and find it very rewarding. But most importantly, I woke up this morning and watched the sun rise!