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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.

judyrichter | @judyrichter | Jan 3 3:58pm
In reply to @hrhwilliam "Hello @judyrichter Welcome to the Head and Neck Cancer group. If you have a question you..." + (show)
@hrhwilliam

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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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.

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2 replies
Mentor
William Olsen, Volunteer Mentor | @hrhwilliam | Jan 3 7:33pm
In reply to @judyrichter "William, thank you for the welcome. I began part of my story in 2002, when my..." + (show)
@judyrichter

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.

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I have heard of others who have had good results with Keytruda. Perhaps this is your answer finally.

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worth | @worth | Jan 4 8:32am
In reply to @rkaspet "In October 2022, I was diagnosed with HPV throat cancer I had a tumor growth the..." + (show)
@rkaspet

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.

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Thank you for writing about your experience and mentioning the humidifier!!! Small detail but I am hoping it will help with the dry mouth.

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rkaspet | @rkaspet | Jan 4 8:53am

Yes, it’s the little things that turn into the big things that makes life a little easier. I find myself very fortunate, but I am constantly trying to find ways to improve my life..

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davehutsell | @davehutsell | Jan 4 12:52pm

Hi
I was diagnosed with Squamous Cell Carcinoma /HPV at base of my tongue. Feb.2023. I had a lymph node that had enlarged and grown into my neck muscle and around a main artery in my neck. My ENT did not wnat to entertain surgery. I was given 7 weeks of radiation-35 doses and weekly Chemo. To be clear it was not much fun. My pain was held in check with Oxy, Fentanyl Patches and Tylenol. Still much pain. I lost 45 lbs, and lived mostly on Boost 530. I remember it took me an hour to get one down because of the throat pain.
Many of you have mentioned faith in Jesus Christ. I can tell you, He showed up for me daily and His Word was a constant comfort. I prayed the Psalms and I do not know how i would have come through this without His presence. It is real. My friends and family contributed greatly in prayer and acts of comfort.
Today i have had 2 cancer free scans. I still have some loss of taste but other than that, I am good. I appreciate the team at Mayo for always being upfront on what i could expect. They have been a constant source of encouragement.
I am a cancer survivor and I pray you will be as well.

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kathyheidt | @kathyheidt | Jan 5 10:51am

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

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2 replies
Mentor
William Olsen, Volunteer Mentor | @hrhwilliam | Jan 5 2:23pm
In reply to @kathyheidt "I have been diagnosed with squamous cell carcinoma in my maxillary sinus. Can you please connect..." + (show)
@kathyheidt

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

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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?

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1 reply
kathyheidt | @kathyheidt | Jan 5 2:31pm
In reply to @hrhwilliam "Hi @kathyheidt and welcome. As other patients read these pages (and they often do) you will..." + (show)
@hrhwilliam

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?

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Thank you. The SCC is in the bone and nerve as well so stage 4a. No lymph nodes. They plan to reimage to see if went to skull with pet scan and mri in two weeks once swelling goes down from removal of the inverted papilloma mass and biopsy two weeks ago .

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marksur | @marksur | Jan 9 12:32pm
In reply to @rrc185 "Hi Colleen, I’m hoping you can help me out. I’ve been recently diagnosed with throat cancer,..." + (show)
@rrc185

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.

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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.

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2 replies
marksur | @marksur | Jan 9 12:49pm
In reply to @dgoinvestments "Good morning to all, Today is my one year Whippleversary as I have Pancreatic cancer. I..." + (show)
@dgoinvestments

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.

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Hi, I was diagnosed with HPV related cancer in my tonsil and a lymph node on the right side of my neck in May 2023. It grew too quickly for surgery, so I had seven weeks of proton therapy radiation - every weekday for a total of 35 treatments and chemotherapy once a week at Mayo in Phoenix. The treatment was excellent, the chemo and radiation care teams were top notch professionals and very compassionate and supportive. In addition, my wife and I were provided with an incredible array of auxiliary treatment, a really excellent Speech-Language Pathologist, Audiologist, Social Worker and Gastroenterology team. I don’t have any experience with the Rochester Mayo but highly recommend the Phoenix campus.
My wife and I found that the waiting rooms designated specifically for radiation and medical oncology (chemo) were very helpful. We made a point of striking up conversations with other patients and their caregivers which provided an invaluable sense of community. Knowing you’re not alone in the struggle is priceless. Best of luck to you

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