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Meet others living with Head & Neck Cancer: Introduce yourself

Posted by Colleen Young, Connect Director @colleenyoung, Nov 13, 2017

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?

Interested in more discussions like this? Go to the Head & Neck Cancer Support Group.

big123 | @big123 | Jun 19 10:10am

Does proton have less side effects than the standard 6 week radiation? Has anyone tried it

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roblem | @roblem | Jun 19 12:23pm

Sure, in 2008 I was officially Stage IVB T2N3M0 on left tonsil caused by HPV and one of my 3 infected lymph nodes was over 7cm and that is not a typo. I had 35 rounds of radiation which amounted to 70 Gy and 3 rounds of the platinum-based chemo Cisplatin and had no surgery whatsoever as I got a second opinion from Froedtert & Medical College of Wisconsin Cancer Center who said I wouldn't need it and were extremely confident I wouldn't need a feeding tube either and they were correct. In addition, cancer free in March of 2009.
Unfortunately, just diagnosed with Tongue cancer on my left side of my mouth on March 1, 2024, and had a left partial glossectomy with a radical forearm free flap surgery on April 3. Also, includes a modified radical neck dissection. This one was not caused by HPV and was most likely from too much radiation from the first cancer as it is literally adjacent to my left tonsil.
One thing I am finding out is this big de-escalation cancer treatments coming about especially for people who got it as a result of HPV. I just talked to my oncologist a few days ago and he said I would have four different options if I had tonsil cancer today. I also attached a couple articles on it here.
You will get better. Hope this helps. Good luck.

Best,
Rob

Shared files

Low-Dose Radiation To Treat HPV Throat Cancer a 'Game Change' 02-12-24 (Low-Dose-Radiation-To-Treat-HPV-Throat-Cancer-a-Game-Change-02-12-24.pdf)

Less Treatment for HPV-Related Oropharyngeal Cancer - NCI article 09_27_23 (Less-Treatment-for-HPV-Related-Oropharyngeal-Cancer-NCI-article-09_27_23.pdf)

In the Office with Dr (In-the-Office-with-Dr.-Marshall-Posner-on-Head-an-Neck-HPV-Cancer-article.pdf)

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ewilde | @ewilde | Jun 19 7:44pm
In reply to @big123 "Hi, my name is Barry, I live in Florida, 72 years old. Two months ago I..." + (show)
@big123

Hi, my name is Barry, I live in Florida, 72 years old. Two months ago I developed a lump on the right side of my neck. No other symptoms. I was diagnosed with squamous cell carcinoma in my neck, which I had to have a radical neck dissection of 3 tumors and removed all my lymph nodes on the right side of my neck and shoulder. After healing somewhat, 3 weeks later I had a second TORS surgery to remove a tumor and cancer in my right tonsil, the primary cancer, that spread to my neck and lymph nodes. Its been about 3 weeks now. And it was HPV P16 positive. I have some trouble swallowing food, dry mouth, drool from the right corner of my mouth, a slight lisp, and much atrophy in my right shoulder. Infact, I was a good tennis player, and now my shoulder is so weak, I can not hit a ball over the net. I will start physical therapy.
Now, my BIGGEST CONCERN. I can manage ok the way I am now. They want me to start 6 weeks of Radiation Therapy as a added measure to hopefully prevent reoccurrence. When I read all the side effects that can greatly effect the quality of my life, I am extremely cautious and petrified to start radiation. I am sure many people have the same situation and same dilemma. I am kind of frozen with fear and do not know what to do. I need guidance. I would greatly appreciate any advice and support. Thank you

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Hi Barry, I am in Florida also. I had both tonsils removed, a portion of my tongue, and 90 plus lymph nodes in my neck (three had cancer). I had similar challenges you listed after the surgery. I was also on a G-Tube for a while. The good news on your shoulder is that the strength should return with physical therapy. I had surgery in May 2023, and I have full mobility in that shoulder now.

The recommendation was for me to do radiation after the surgery, but I did not because of the eating challenges I was having.

I am more than happy to speak with you via email or phone if you would like.

Eric

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1 reply
kathyheidt | @kathyheidt | Jun 20 10:18am

Hi
I am doing six months of cemiplimab
Immunotherapy (similiar to Keytruda)instead of radiation. After my maxillectomy, my margins and cancer were clear so no radiation for which I am grateful. I start today. Nervous about reactions but hope to tolerate for six months.
Will keep you posted

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1 reply
Ellen2007 | @nnurse | Jun 21 5:01am
In reply to @kathyheidt "Hi I am doing six months of cemiplimab Immunotherapy (similiar to Keytruda)instead of radiation. After my..." + (show)
@kathyheidt

Hi
I am doing six months of cemiplimab
Immunotherapy (similiar to Keytruda)instead of radiation. After my maxillectomy, my margins and cancer were clear so no radiation for which I am grateful. I start today. Nervous about reactions but hope to tolerate for six months.
Will keep you posted

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Glad to see you are not having that brutal radiation. May i ask what stage and grade your cancer was and at what location? I also had a maxillectomy and immunotherapy was never mentioned.

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1 reply
kathyheidt | @kathyheidt | Jun 21 8:19am
In reply to @nnurse "Glad to see you are not having that brutal radiation. May i ask what stage and..." + (show)
@nnurse

Glad to see you are not having that brutal radiation. May i ask what stage and grade your cancer was and at what location? I also had a maxillectomy and immunotherapy was never mentioned.

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I have squamous cell carcinoma in left maxillary, had infrastructure maxillectomy with removal of infraorbital nerve. I was stage 3/4a. I had neoadjuvant chemo/immuno and now after immuno. Removal of ion nerve very difficult to accept as well. What has been your experience

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1 reply
kathyheidt | @kathyheidt | Jun 21 8:21am

Has anyone had removal of the infraornital nerve? If so how do you deal with that loss of feeling

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Mentor
William Olsen, Volunteer Mentor | @hrhwilliam | Jun 21 2:42pm
In reply to @scooter4 "Hi Tom from Illinois, 8 months out from neck dissection, 6 weeks of radiation and chemo...." + (show)
@scooter4

Hi Tom from Illinois, 8 months out from neck dissection, 6 weeks of radiation and chemo.
seek out alternatives to radiation. yes, it can be overcome but there are some long term effects that can be life changing. If radiation is only alternative hopefully you will receive proton and not photon. If it can be done on only one side that would be very helpful

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Ditto. Proton!

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Ellen2007 | @nnurse | Jun 21 2:49pm
In reply to @kathyheidt "I have squamous cell carcinoma in left maxillary, had infrastructure maxillectomy with removal of infraorbital nerve...." + (show)
@kathyheidt

I have squamous cell carcinoma in left maxillary, had infrastructure maxillectomy with removal of infraorbital nerve. I was stage 3/4a. I had neoadjuvant chemo/immuno and now after immuno. Removal of ion nerve very difficult to accept as well. What has been your experience

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SCC of maxillary sinus. Maxillectomy with f/u radiation. Palatal obturator. Where is your treatment done and what did the doctors do to replace your jaw? Hang in there. Its been 4 years since my therapy and although challenges remain you can get through it. Blessings

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2 replies
Mentor
William Olsen, Volunteer Mentor | @hrhwilliam | Jun 21 3:02pm
In reply to @nnurse "SCC of maxillary sinus. Maxillectomy with f/u radiation. Palatal obturator. Where is your treatment done and..." + (show)
@nnurse

SCC of maxillary sinus. Maxillectomy with f/u radiation. Palatal obturator. Where is your treatment done and what did the doctors do to replace your jaw? Hang in there. Its been 4 years since my therapy and although challenges remain you can get through it. Blessings

Jump to this post

You're making me dig out my big old Gray's Anatomy. Ugh! Guess even an old brain can still learn. Palatal obturator............

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