Connect
← Return to Meet others living with Head & Neck Cancer: Introduce yourself
Discussion
Meet others living with Head & Neck Cancer: Introduce yourself
Head & Neck Cancer | Last Active: Apr 14 10:24am | Replies (456)Comment receiving replies
Good Evening all. I am in the process of fighting my second cancer at the age of 45. I beat breast cancer in 2014 but somehow ended up with a fairly rare cancer - Olfactory Neuroblastoma in April 2018. My ENT did surgery March 2018 thinking he was simply removing a nasal polyp. They called me in April 2018 letting me know that I was at a Stage B (2) and needed to be seen. I live in Kansas City but decided to go straight to the Mayo Clinic because of their reputation. I flew to Jacksonville for consultations with my new team of doctors. They had me scheduled and ready to move forward with our treatment plan 2 weeks later. They were able to get clear margins and my pathology report came back clean, but I will start Proton radiation therapy next Monday at the Mayo in Rochester as a precaution. I was in Minnesota last week for my simulation. I've been told that the Proton therapy is easier on your body. I will have some side effects but not as bad as if I was using a different type of radiation. I'm having some anxiety about starting radiation. I was ok until they clamped my head to the table while in the mask. That was the strangest feeling ever. I'm concerned about the nasal congestion and mouth sores and dry mouth. I'm on the waiting list for the lodge but will be staying at one of the Marriotts near the Clinic. I did a tour of part of the lodge but couldn't see my sleeping area so I am a little antsy right now. My main concern was where I would sleep and bathe but they were only able to show pictures. So I have a few questions..... anyone experiencing/ed Olfactory Neuroblastoma? My radiation will be to my nasal area. Anyone have that area treated before? If so, what were your side effects like? Anyone staying/ed at the Lodge in Rochester? If so, what was it like? Thank you for your input and I wish everyone well during their treatments. ~Trina
Replies to "Good Evening all. I am in the process of fighting my second cancer at the age..."
Hello @squirrelsnanna,
Have you seen the "Visiting Mayo Clinic" group on Connect? https://connect.mayoclinic.org/group/traveling-to-mayo-clinic-minnesota/
I'd sincerely encourage you to go through some of the conversations taking place, join in and ask questions, or start a new discussion there. For instance, you might wish to read this discussion:
– What are your accommodation recommendations when coming to Mayo? https://connect.mayoclinic.org/discussion/what-are-your-accommodation-recommendations-when-coming-to-mayo/
Mayo Clinic Concierge service can also assist you with questions related to lodging, transportation, local businesses and attractions. You can find out get many more details here:
https://www.mayoclinic.org/patient-visitor-guide/minnesota/becoming-a-patient/concierge-travel-services
Hi squirrelsnanna,
How lucky you are you will have proton radiation. Five years ago, there were only three places in the USA, and they were using proton only in children and very hard to reach places in the body.
I know about the mask, but only think that it is so they do not radiate your eye rather than your nose! Radiation is only a few minutes, so I would close my eyes and think of beautiful things, or pray. It went fast.
I stayed at the cancer society lodge in Baltimore. It was a great experience. We were about 40 patients and 40 companions. We called radiation "the tanning both". People went in the evenings and brought dinner, some of them survivors. We joked and laughed and shared. The lodge had been a hotel in the past, so it was confortable. We shared a kitchen. A space in a fridge. Mrs. Brown( the manager) was like a sergeant, and kept us on a leash. We made friends that we keep in contact with and it is so nice when you hear their voices and they are still alive! Do not be afraid; all of this will pass. Even my mouth is not so dry as of lately.
It will be difficult. The burning of the mouth is the toughest, because they do not want you to loose weight. Keep your mouth very clean. They will give you a mixture of pink stuff to swish your mouth. Use it. Follow their directions to the t. They are great at mayo. I was not treated there, but my sister was, just recently. In Scottsdale. First class. I spent three weeks with her in April.
I would be very interested to hear about your experience with proton.
Good luck! Loli
Connect
It sounds as if you are on a good path to recovery. The mask is daunting but after a few goes it becomes bearable. I like to think of it as a curative element to keep our heads in place for the treatment.
I know a few people who have been radiated in the nasal area. They seemed to have the same side effects as me: inflamed mouth, burnt neck skin but from what I have heard proton therapy is a lot better: more effective and safer. The treatment is really worth it to stamp out any remaining cancer cells - a good insurance policy.
I've had two cancers too but not so young - by age 60. Seem to be okay now and I hoping for the same outcome for you. @squirrelsnanna