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Meet others living with Head & Neck Cancer: Introduce yourself
Welcome to the Head and Neck Cancer group.
This is a welcoming, safe place where you can meet other people who are living with head and neck cancer. Let’s learn from each other and share experiences from diagnosis through treatment and coping with symptoms and recovery challenges.
As you know, head and neck cancer is the general term for a broad group of cancers that begin in the head and neck region. This include oropharyngeal cancer, hypopharyngeal cancer, laryngeal cancer, lip and oral cavity cancer, nasopharyngeal cancer, paranasal sinus and nasal cavity cancer, salivary gland cancer, squamous cell neck cancer or ameloblastoma.
Let’s get to know one another. Why not start by introducing yourself? What type of cancer have you been diagnosed with?
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Hi
Thank you for reaching out!
I’m actually meeting with Mayo tomorrow in Rochester and will inquire about the test. My community hospital was recommending no surgery, 6 1/2 weeks photon radiation and chemo. I’m hopeful that I can forego as much radiation as possible, hoping this is an option.
It’s great to hear that so far things are going well for you, hopefully it stays that way!
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1 ReactionHi Lenny, I realize more than a month has passed since your comment and you have undoubtedly made your initial decision about undergoing treatment. I was diagnosed May 2023 with HPV related squamous cell cancer in my right tonsil and lymph node. It grew quite rapidly over the next month. I began proton radiation and chemotherapy in early July at Mayo Phoenix. Treatment was completed in 7 weeks. I would highly recommend you consider this. I was initially diagnosed in my hometown and like you, the doctors made it sound relatively easy. That was not the case at Mayo, my wife and I were fully informed as to the potential side effects but also given many strategies to avoid them. We followed all of the recommendations and thankfully I have not suffered major problems. So it is possible to undergo the recommended treatment without very serious complications. I admit that my case was very fortunate regarded as unusual by the care teams but again it is possible. It was not in any sense easy and I have been on an emotional and psychological roller coaster for the last 7 months but I’m alive! Best of luck to you.
rrc185, I decided very quickly to have proton radiation therapy rather than photon radiation. The radiation oncologist described how precise the targeting of the proton beam is compared to photon therapy and thus has the potential for much less collateral damage to nearby healthy tissue. My wife and I also went on a tour of the radiation facility at Mayo (the GLOW tour) where a physicist explained the process using very informative videos. The very narrow beam is precisely aimed at numerous points on the tumor over the course of the treatments. The calculations for the targeting process are very detailed and complex. A great deal of time is spent planning the process and adjusting as necessary. They showed my wife about halfway through treatment how distinct the line on my cheek inside my mouth was where the beam was entering to hit the tumor. She said it looked like it had been drawn with a ruler. I have had side effects from it but they haven’t been a a major ongoing disruption. Hope this helps
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1 ReactionThank you for your kind words and for responding. Because our daughter lives in Tampa with her family, we have made the decision to go to Moffitt Cancer Center in Tampa. Even my oncologist at the Phoenix Mayo said they have a very good reputation and I believe having my daughter and granddaughter around will help a lot with the dark moments.
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4 ReactionsOh gosh, @rrc185, somehow I'm only seeing this message today. My apologies for the late reply. How did your appointment go with Dr. Moore? Were you able to meet with other members of your cancer team? What is the treatment plan for you?
Hi Colleen,
No worries, the appointment went well. Very impressed with Dr Moore and his team. I came to Mayo seeking a second opinion and I’m glad I did.
Now the challenge will be getting my insurance company to approve this as it’s out of network for them. The provider that they work with said that surgery was not an option whereas Mayo is actually recommending it as a standard of care.
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2 ReactionsThank you i just met with msk in new york which is near where i live they said the only way to get out of bone is with flap surgery ie take out entire cheek cavity and reconstruct with no guarantees. They implied radiation and chemo could do the same. Not
sure what to do as i am not aware that can get it put of the bone
I also got opinion from nyu permitter and they could do less surgery and scrape? Then radiation
Thank you for your comments. I just met with msk in nyc and they said radiation chemo instead of surgery I have squamous cell carcinoma in maxillary sinus. But it is in the bone. Will radiation get it out of bone. He said flap surgery very invasive and no guarantees
Nice to meet everyone...receiving support from a therapist right after my diagnosis was the best thing I did to help with the stress and anxiety before my two surgeries and treatments. Also seeing an integrative doctor at the hospital to help with my diet was a life saver. my academic medical center had all these added support services at the hospital. the only missing piece was not getting connected to a peer mentor after asking my doctors to connect me to someone from the community who was a survivor.
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2 Reactions@kathyheidt
Do you live near Westchester, NY? If so, may I suggest you reach out to Dr. Peter Costantino.
https://bssny.com/providers/peter-costantino-md/
You may use my name as a reference.