1. < Head & Neck Cancer
Moderator

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.

Mentor
William Olsen, Volunteer Mentor | @hrhwilliam | Dec 9, 2023
In reply to @zeip8288 "Hi! Jon here. I was diagnosed with tongue cancer, lower right mid-July 2023. I had surgery..." + (show)
@zeip8288

Hi! Jon here. I was diagnosed with tongue cancer, lower right mid-July 2023. I had surgery on July 31st to remove the tumor. The surgeon also removed my right toncil. The surgery was quite successful and I was givin the option to simply go home, as the surgeon felt very confident that he got it all with good margins. Of course, then I got the "insurance" discussion and did opt for 2 weeks (2x/day) of low intensity radiation with one low dose Chemo/week.
My last treatment was on September 8th 2023. I could never have imagined how difficult the first 3 weeks of recovery would be. I was so sick and in so much pain that I just wanted the end, however that was to come. Week 4 started with a little bit of hope. Weeks 5 and 6 were getting better and i started to feel physically better. Then, was the worst emotional and mental crash/attack. Anxiety way off the charts with panic every single day for about a month. I found myself in another very dark version of hell again. Thankfully, Mayo came through and prescribed some medications that has taken a huge edge off. My very 1st 3-month check-up in 3 days!

Jump to this post

Hi Jon @zeip8288 and welcome to this Head and Neck group. Your story strikes a chord with not only myself but many of us who have had the misfortune of cancer treatments. So I guess the surgery was just too easy so you may as well have a little Chemo and Radiation? Just kidding of course. Glad to hear you are on the uptake and doing better with time. I would suspect you will have issues for a few months to perhaps a couple of years but we learn to live with them and then they seem to go away eventually.
The effects from radiation enlightens us to contemplate what survivors of nuclear bombs or bomb tests must have experienced back in the day. Physically ill as well as pain, taste, digestion, etc all seem to be issues for most.
I'm sure the check-ups will give you pause but try not to think the worst as most likely the news will be good. This will go on for years for most of us and any malady or pain you will for years think the worst, only to find out you have an illness like anyone else and it goes away. I wish you well. Keep in touch on this feed and your input to others will be greatly appreciated.

REPLY
1 reply
zeip8288 | @zeip8288 | Dec 10, 2023
In reply to @hrhwilliam "Hi Jon @zeip8288 and welcome to this Head and Neck group. Your story strikes a chord..." + (show)
@hrhwilliam

Hi Jon @zeip8288 and welcome to this Head and Neck group. Your story strikes a chord with not only myself but many of us who have had the misfortune of cancer treatments. So I guess the surgery was just too easy so you may as well have a little Chemo and Radiation? Just kidding of course. Glad to hear you are on the uptake and doing better with time. I would suspect you will have issues for a few months to perhaps a couple of years but we learn to live with them and then they seem to go away eventually.
The effects from radiation enlightens us to contemplate what survivors of nuclear bombs or bomb tests must have experienced back in the day. Physically ill as well as pain, taste, digestion, etc all seem to be issues for most.
I'm sure the check-ups will give you pause but try not to think the worst as most likely the news will be good. This will go on for years for most of us and any malady or pain you will for years think the worst, only to find out you have an illness like anyone else and it goes away. I wish you well. Keep in touch on this feed and your input to others will be greatly appreciated.

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Thanks so much for the response. I now realize that there’s just nothing that can prepare one for what I'm experiencing. Physically, emotionally, mentally and spiritually. All aspects of my life have been significantly impacted. Of course, I'm singing to the choir. Physically, I really didn't think I would survive the other worldly pain and sickness while recovering. After about 4 weeks in, I started to feel a little bit better physically. Then, I crashed so hard emotionally and mentally. Intense anxiety and panic off the charts! Everyday, 24/7. Damn close to debilitating and incapacitating. This went on for a month. Everyday and every second feeling like I was going to completely lose control, flip out, go insane. It was basically one second at a time. I've never been so scared almost every waking moment.
Anyone else experience off the charts anxiety and panic during your recovery? Mayo, thankfully, prescribed some medications that relieved most of the anxiety and panic and is allowing me to sleep.
This has been like a horrible, pain ridden nightmare. It's a damn good thing that I never completely lost all hope!

REPLY
1 reply
jersey3422 | @jersey3422 | Dec 10, 2023
In reply to @zeip8288 "Thanks so much for the response. I now realize that there’s just nothing that can prepare..." + (show)
@zeip8288

Thanks so much for the response. I now realize that there’s just nothing that can prepare one for what I'm experiencing. Physically, emotionally, mentally and spiritually. All aspects of my life have been significantly impacted. Of course, I'm singing to the choir. Physically, I really didn't think I would survive the other worldly pain and sickness while recovering. After about 4 weeks in, I started to feel a little bit better physically. Then, I crashed so hard emotionally and mentally. Intense anxiety and panic off the charts! Everyday, 24/7. Damn close to debilitating and incapacitating. This went on for a month. Everyday and every second feeling like I was going to completely lose control, flip out, go insane. It was basically one second at a time. I've never been so scared almost every waking moment.
Anyone else experience off the charts anxiety and panic during your recovery? Mayo, thankfully, prescribed some medications that relieved most of the anxiety and panic and is allowing me to sleep.
This has been like a horrible, pain ridden nightmare. It's a damn good thing that I never completely lost all hope!

Jump to this post

I don’t want to sound preachy, but I don’t think I ever lost hope because I started praying. I always thought in my head that I would fight until my last breath, but I am also certain that God gave me that strength. Now that I’m cured I say thank you for that every night. Try praying. It can’t hurt right?

REPLY
1 reply
zeip8288 | @zeip8288 | Dec 10, 2023
In reply to @jersey3422 "I don’t want to sound preachy, but I don’t think I ever lost hope because I..." + (show)
@jersey3422

I don’t want to sound preachy, but I don’t think I ever lost hope because I started praying. I always thought in my head that I would fight until my last breath, but I am also certain that God gave me that strength. Now that I’m cured I say thank you for that every night. Try praying. It can’t hurt right?

Jump to this post

Oh....I've been praying plenty!

REPLY
rkaspet | @rkaspet | Dec 13, 2023
In reply to @stephenrfleury "I also had SCC at the base of my tongue, and was treated with chemo and..." + (show)
@stephenrfleury

I also had SCC at the base of my tongue, and was treated with chemo and radiation, completing treatment in December 2020. In most cases, the lack of taste buds is temporary in nature. When I was being treated Mayo's dietician kept me focused on protein (120 grams per day) and calories ( 2500 per day).

I understand how hard it is but I am not sure recipes are the issue. I believe you just need to grind through these few weeks and wait for your taste to return. Keep focused on the protein and calories and most importantly, getting rid of the cancer. For me, my taste never returned and I have come to realize that while food has a huge social aspect, but eating, at it's basic level, it is really to sustain life. The good news is I can eat anything I can swallow!

Good luck in your treatment.

Jump to this post

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.

REPLY
1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Dec 14, 2023
In reply to @zeip8288 "Hi! Jon here. I was diagnosed with tongue cancer, lower right mid-July 2023. I had surgery..." + (show)
@zeip8288

Hi! Jon here. I was diagnosed with tongue cancer, lower right mid-July 2023. I had surgery on July 31st to remove the tumor. The surgeon also removed my right toncil. The surgery was quite successful and I was givin the option to simply go home, as the surgeon felt very confident that he got it all with good margins. Of course, then I got the "insurance" discussion and did opt for 2 weeks (2x/day) of low intensity radiation with one low dose Chemo/week.
My last treatment was on September 8th 2023. I could never have imagined how difficult the first 3 weeks of recovery would be. I was so sick and in so much pain that I just wanted the end, however that was to come. Week 4 started with a little bit of hope. Weeks 5 and 6 were getting better and i started to feel physically better. Then, was the worst emotional and mental crash/attack. Anxiety way off the charts with panic every single day for about a month. I found myself in another very dark version of hell again. Thankfully, Mayo came through and prescribed some medications that has taken a huge edge off. My very 1st 3-month check-up in 3 days!

Jump to this post

@zeip8288, just checking in. How did the check-up go? How are you doing?

REPLY
zeip8288 | @zeip8288 | Dec 14, 2023

It was very good news all the way around. On to my next adventure and chapter.
Thanks, Jon

REPLY
rrc185 | @rrc185 | Jan 1 10:55am
In reply to @colleenyoung "@jeffk @lisa_sj99 @jtw96 @mrsjhagen18 @sylviapf @lzzie @loli @karly @trudivo @angelag @ssimons @deborahe @gaybinator @emmur16 @udderplace Welcome..." + (show)
@colleenyoung

@jeffk @lisa_sj99 @jtw96 @mrsjhagen18 @sylviapf @lzzie @loli @karly @trudivo @angelag @ssimons @deborahe @gaybinator @emmur16 @udderplace

Welcome to the new Head and Neck Cancer group on Mayo Clinic Connect. This group dedicated to conversations and connections about all types of head and neck cancers will make it easier for members to find a relevant discussion to ask their questions and share information.

If you don’t find a discussion that meets your need then jump right in and create a new one! Be sure to invite other Connect members to join you. Inviting is easy, just tag a member by using their Connect member name which starts with an “@” sign. Also, don't forget to +Follow the group. Learn more about how to follow, @mention and use Connect here: https://connect.mayoclinic.org/get-started-on-connect/

This is your community so let’s help each other by sharing your story, asking questions, and learning while we figure out how to deal with our specific type of cancer or supporting someone with cancer.

Jump to this post

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.

REPLY
2 replies
judyrichter | @judyrichter | Jan 3 2:07pm

Squamous cell oral cavity head & neck cancer

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1 reply
Mentor
William Olsen, Volunteer Mentor | @hrhwilliam | Jan 3 3:23pm
In reply to @judyrichter "Squamous cell oral cavity head & neck cancer" + (show)
@judyrichter

Squamous cell oral cavity head & neck cancer

Jump to this post

Hello @judyrichter Welcome to the Head and Neck Cancer group. If you have a question you can begin a new discussion or hop on an existing discussion. If you have a comment on another discussion just feel free to jump in. We are simply patients helping patients. Those of us who have been down the long road can often help those who are just beginning the journey. The doctors, unless they have actually had cancer, can only answer second hand if at all to issues we go through.
Personally I would rather belong to a church choir than a cancer group but alas cancer has taken my voice somewhat, so I play the cards I've been delt and there we are.
Are you new to this cancer?

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