Meet others living with Head & Neck Cancer: Introduce yourself

Hi, I assume from your message you may have already been to Mayo. If you’re still there, you may want to inquire about the DART 2.0 study. Its purpose is to investigate the efficacy of de-escalated treatment for HPV related cancer. I enrolled but did not have the less treatment option as the cancer was too far advanced. Nevertheless, involvement in the study was valuable. I had proton therapy radiation on both sides of my neck ending in September and have tested cancer free so far. I had very few side effects, these I have so far are manageable. Good luck to you.

Good morning to all,
Today is my one year Whippleversary as I have Pancreatic cancer. I am celebrating but yesterday my husband went to an ENT only to find out he most likely has tonsil cancer. They are doing a CT scan next week and then more decisions will be coming. I had my surgery done at Mayo in Rochester, Minnesota and that is where I think my husband should go as well, but we live at our house in Arizona in the winter so perhaps Mayo here. I would love to hear more about tonsil cancer, honestly, I did not even know he had tonsils anymore. I do know they plan to take his tonsils out but because he is on Cumiden and is considered a “bleeder”, they said it will be a tricky surgery as there is a lot of bleeding with this surgery in adults anyway. As you can imagine, I have tons of questions and I am not sure he has the right surgeon. Any comments or suggestions would be much appreciated. I am on the Mayo Whipple Warrior survivor site and I know how helpful that has been for my cancer and as my husband’s caretaker I need all the help I can get. Thank you all.

Hi Colleen,
I’m hoping you can help me out. I’ve been recently diagnosed with throat cancer, base of tongue, HPV positive. I’ve scheduled an appointment with Dr. Moore for next week for an initial consult. I’m traveling from New York for this appointment and my question is whether or not it would be possible to meet with other members of the team i.e. oncology, chemotherapy, etc…. If you could point me to the right person in the department that would be awesome, I’d just like to make the most of my visit there - and I’d like to get treatment started ASAP.

I’ve had all of the tests run at the hospital in New York and we have a treatment plan ready to go. The reason I’m looking for a second opinion is because I was hoping to have de-escalated version of radiation as opposed to the six or seven weeks that my Dr’s here in NY are proposing.

Hi @kathyheidt and welcome. As other patients read these pages (and they often do) you will find others with maxillary sinus SSC and what they have gone through or are going through. Further, you can go to the search bar at the top of the page and type in Maxillary Sinus Cancer and you will see several previous discussions that you can read and/or follow.
I personally have not had Maxillary SSC but have had experience in SSC treatment and follow up when things didn't go quite as planned. Either way, there is help here but be patient with patients as not everyone reads these feeds all the time. This is a good place to start.
In the meantime, where in treatment are you or not started yet? Do you have some specific issues you need help with?

I have been diagnosed with squamous cell carcinoma in my maxillary sinus. Can you please connect me with others or advice
Thank you

In October 2022, I was diagnosed with HPV throat cancer I had a tumor growth the size of small marble between my tonsil, my voice box, and at the base of my tongue and a couple of cancerous lymph nodes in my neck .I was extremely frightened, I had a biopsy done in Nevada and then proceeded to go to the Minnesota Mayo Clinic beginning of November 2022 to get 35 sessions zaps of proton radiation to both sides of my neck and throat and seven doses of cisplatin chemotherapy. It has been a long-haul, but the best decision I’ve ever made, the oncology and radiation doctors nurses at the Mayo clinic were wonderful they have become friends of mine I have been cancer free since I do go for testing every 4or 5 months. I have been cancer free since . And I get tested here in Nevada every six weeks. I try to be very vigilant about it. As far as my symptoms are concerned, it took me over a year to get about 80% of my taste buds back. It took me about eight months to swallow without getting food stuck, I do drink, a lot of water and early on I drank a lot of chocolate boost when I could not eat. I have always kept the faith. Things get better and they have !!! so keep the faith !!for me. Prayer has helped a lot and I volunteer at the homeless shelter in Las Vegas . It helps me. Even 13 months after I still get dry mouth but I use a humidifier and I try to be very proactive and keep a positive attitude I am very appreciative to the Minnesota Rochester Mayo clinic doctors and nurses etc. that helped me get
through this challenging time.

William, thank you for the welcome. I began part of my story in 2002, when my dentist noticed “something” . Well after a biopsy they discovered cancer. Never smoked a day in my life, but there it was, second hand smoke cancer. After removing most of my left jawbone, I was considered “cancer free.” Yea, right! Went to my dentist, oncologist, and oral surgeon every two months or so, regularly. Thru the years they removed many suspicious spots. Twenty years later, my oral surgeon, on word from oncologist, did another biopsy on my right side. Did not show any signs of cancer. However my surgeon notice the left side of my cheek to be suspicious and did a biopsy. Stage IVa soft tissue cancer, fast moving new type of cancer. My surgeon, referred me to a younger surgeon, new oncologist, new plan. My doctors said I need newer, younger, specialist. Well, I got them. Lucky enough to live close enough to the Sammons Cancer in Dallas. Am going there now. Have had surgery, 32 rounds of radiation (horrible), and over 50 chemos. While under going radiation and chemo, the cancer come back in my head. They had warned us it could. My Oncologist began chemo, chemo and Key Truda. Key Truda was every third week. Now present day, I told my doctor I wanted to stop my chemo. He said after two clear scans I could and continue with Key Truda every 3 weeks. He said they didn’t know if it was the chemo or Key Truda that said bye to cancer. So right now, I’ve had my first scan since being off. Chemo and it still “cancer free”. I will continue as is until…. Just glad to finally find people like me. Fighting to live.