Meet others living with Head & Neck Cancer - Come 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.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by volunteer patient Mentors @adriennef and @alpaca and fellow members when you post to this group. Learn more about Moderators and Mentors on Connect.

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, soft tissue sarcoma or thyroid cancer.

Let’s get to know one another. Why not start by introducing yourself? What type of cancer have you been diagnosed with?

@nanab1219

Hi Everyone,
My name is Bobbielynn from Sunny California. A wonderful 59 year old I ‘ve had Head and neck cancer since 2008. Thought it was a canker sore on my tongue but turned out to be cancer. Recurrence on the day of my five year anniversay I had surgery, radiotherapy, and chemotherapy both times. i have a flap sewn to the bottom of my mouth and a huge scar from the graft on my right arm. I say its a cancer awareness tattoo. I had to learn to speak and eat again however the side effects are the ones hitting me now. My speech and eating was affected but i have adjusted and actually doing well. I had to rethink how I was going to see this as a problem or an adventure (mindfulness) Its been an adventure learning to puree foods to chew hits and misses there. I found out I will be losing my teeth from the radiontherapy bummed sounds swallow but it bothers me.
Hoping healing no pain would be nice, and thinking okay going to have to practice a different smile hmm maybe an Olsen twin smirk. LOL

Anyone have any helpful tips for puree foods or experice tooth loss after treatments?

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Hi Bobbielynn,
I also belong to the tattoo club! Today was my almost five year checkup. Dr Strome was very happy to see me doing so well. I feel well, and I am so glad to see how positive you are about this adventure we have been presented with. I have lost four of my molars, due to radiation. All on the same side, two from the top and two from the bottom. My gums receded in such a way, that the roots were very exposed and infections were festering deep inside. Otherwise, the rest of my denture is healthy. I go for cleaning every three months. I use water pick, brushing and little brushes to clean between the teeth. I am fastidious about cleaning my mouth, and if you are suffering from lack of saliva, as many of us are, you know how everything sticks to your teeth; so cleaning is essential.
I love avocados. If you mash them, you have guacamole. I lived on avocados and cuddled eggs when at my worst. I have been juicing for five years now. Lately, I have been adding collagen to my juices. It helps in the healing process.What about refried beens? You can make them as dry or as runny as you wish.

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Good Morning,

My name is Stephanie and I live in Sacramento, California. I was diagnosed with Adenoid Cystic Carcinoma after a sinus surgery in February 2018. I have no symptoms and no idea that I had anything other than allergies and a blocked sinus cavity. During surgery the surgeon noticed the tumor. I have had one consultation with UCSF and am looking for another option.

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Hello, Stephanie. This is a rare cancer. In my New Zealand head and neck group there are only four with ACC – only 6 in the whole of NZ. It's often an "indolent", slow growing cancer but still troublesome.
You are in the right country for cutting edge treatments.
There's an international support group based in the US for this cancer. If you need another patient to talk to, the chairperson of our NZ group is 4 years down the track after having an ACC tumour removed from her adenoid.
I wish you well, Stephanie, and hope you get a good treatment plan locked in soon.

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Hi Stephanie, along with Maureen, I'd like to add my welcome and introduce you to fellow Connect members talking about Adenoid Cystic Carcinoma. Please meet @dakotapat and @douger. You'll find them in this discussion in the Head & Neck Cancer group:
— Adenoid cystic carcinoma – left tongue base https://connect.mayoclinic.org/discussion/adenoid-cystic-carcinoma-left-tongue-base/

If you would like to seek a second consultation at Mayo Clinic, here is the contact information for all 3 campuses in AZ, FL and MN mayocl.in/1mtmR63

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Hello Stephanie. I know the shock state you are in and sympathize. I want to recommend Mayo as a great choice for another opinion. I had Squamous Cell Carcinoma but in a very rare location near my middle ear and that drew me to look around for opinions. U. Michigan was close, but it turned out a 10 hour drive to Rochester, MN allowed me to experience the Mayo system and meet with an amazing team of doctors. I had surgery and have done all followup at Mayo and so glad that was my choice. I had chemo and radiation at UM because it is only 1 hour from home and the Mayo doctors highly recommended the head and neck radiation oncologist there. That saved me from living in Rochester for 7 weeks during treatment. Good luck to you and don't let distance distract you from where you seek another opinion.

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@sepdvm

Hello Stephanie. I know the shock state you are in and sympathize. I want to recommend Mayo as a great choice for another opinion. I had Squamous Cell Carcinoma but in a very rare location near my middle ear and that drew me to look around for opinions. U. Michigan was close, but it turned out a 10 hour drive to Rochester, MN allowed me to experience the Mayo system and meet with an amazing team of doctors. I had surgery and have done all followup at Mayo and so glad that was my choice. I had chemo and radiation at UM because it is only 1 hour from home and the Mayo doctors highly recommended the head and neck radiation oncologist there. That saved me from living in Rochester for 7 weeks during treatment. Good luck to you and don't let distance distract you from where you seek another opinion.

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Dear friends,

I have been reading all your posts, and kind of unable to put in words what has been going on in my life as of lately.
My sister's cancer has come back. She had squamous cell in her jaw 14 months ago. She had a very successful surgery at Mayo in Scottsdale, but she did not have radiation or chemo. After six months, she started having pain in her face, close to her ear, and it was diagnosed that it was nerve damage. A few days ago, she had her checkup, and they found out that the cancer had jumped to her cheekbone, near the ear, and now she will have to have both, radiation and quemo. We have been organizing ourselves, and I will be her caregiver for three weeks at the end of March and I will be there for the bell ringing. She lives in Mexico City and I in Virginia; so it is a great endeavor for all of us; but we have great faith in Mayo, and she in Dr Hinni.
I remind you that I had Squamous cell in my mouth, and had surgery and radiation at University of Maryland five years ago. I did have radiation for eight weeks after surgery, and also very happy with Dr. Strome and UM. I just recently read that we are close to 20 million cancer survivors in the USA! There is HOPE for all of us. We need to be positive and forward going, and our own advocates.
Love you all, Loli

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Did any doctor ever tell you how someone gets cancer in the jaw? Or did he speculate on the answer? It's not something that comes up in medical news very often (like breast, colon, lung, etc). These stories are incredibly scary.

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@sepdvm

Hello Stephanie. I know the shock state you are in and sympathize. I want to recommend Mayo as a great choice for another opinion. I had Squamous Cell Carcinoma but in a very rare location near my middle ear and that drew me to look around for opinions. U. Michigan was close, but it turned out a 10 hour drive to Rochester, MN allowed me to experience the Mayo system and meet with an amazing team of doctors. I had surgery and have done all followup at Mayo and so glad that was my choice. I had chemo and radiation at UM because it is only 1 hour from home and the Mayo doctors highly recommended the head and neck radiation oncologist there. That saved me from living in Rochester for 7 weeks during treatment. Good luck to you and don't let distance distract you from where you seek another opinion.

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So sorry to hear what your sister has endured. I really admire your family organisation. Having you there for three weeks will take so much pressure off her. I hope she is well enough during the treatment to enjoy the togetherness with her sister:)

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Like all cancer, squamous cell cancer can pop up randomly I assume. And from what I have seen over the years, cancer is unpredictable. You can have successful removal of the first tumour and in most cases that is enough but in rarer cases the cells were there lurking all the time. Sometimes I think those of us who have survived HNC or who are living with it on and off are lucky to have stopped it at the pass. There are amazing surgeries that can be done to replace the jaw and reconstruct other areas of the face. Much love to all.

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Thank you all for your support. This is our club, where we can empty with people that understand. You are important in my life; thank you.
Loli

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@loli

Thank you all for your support. This is our club, where we can empty with people that understand. You are important in my life; thank you.
Loli

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It may not be possible to understand precisely a given medical problem, but everyone should understand pain and fear.

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Hi, my name is Elaine, and I have been having dental problems over the past 6 weeks with my Gums. My Gums are pulling away from my teeth on the upper right side. I had SRS radiation treatments in December 2017 for a Tentorial meningioma on. And the place I went to Spectrum Health Lemmen-Holton Cancer Pavilion said that these treatments do not cause this problem. So I must be special because it is has happen to me. Has anyone else have this problem with SRS Treatments for their meningioma brain tumor?

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@mrser52

Hi, my name is Elaine, and I have been having dental problems over the past 6 weeks with my Gums. My Gums are pulling away from my teeth on the upper right side. I had SRS radiation treatments in December 2017 for a Tentorial meningioma on. And the place I went to Spectrum Health Lemmen-Holton Cancer Pavilion said that these treatments do not cause this problem. So I must be special because it is has happen to me. Has anyone else have this problem with SRS Treatments for their meningioma brain tumor?

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Hi Elaine,
I had radiation therapy in 2013. My gums started pulling away maybe three months after treatment. I have been fastidious about oral hygiene and still I have lost three molars on the side of radiation, which is my right, because infections reached the roots. When I had the last molar out, well, I thought, one molar less to take care of. Have been chewing on my left side forgive years, and I am just happy to be alive. I know some other people that have had the same happen with oral cancer and radiation. I hope this info helps.

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@mrser52

Hi, my name is Elaine, and I have been having dental problems over the past 6 weeks with my Gums. My Gums are pulling away from my teeth on the upper right side. I had SRS radiation treatments in December 2017 for a Tentorial meningioma on. And the place I went to Spectrum Health Lemmen-Holton Cancer Pavilion said that these treatments do not cause this problem. So I must be special because it is has happen to me. Has anyone else have this problem with SRS Treatments for their meningioma brain tumor?

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Shouldn't the doctors tell us this could happen when we have this treatment?

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@mrser52

Hi, my name is Elaine, and I have been having dental problems over the past 6 weeks with my Gums. My Gums are pulling away from my teeth on the upper right side. I had SRS radiation treatments in December 2017 for a Tentorial meningioma on. And the place I went to Spectrum Health Lemmen-Holton Cancer Pavilion said that these treatments do not cause this problem. So I must be special because it is has happen to me. Has anyone else have this problem with SRS Treatments for their meningioma brain tumor?

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Hi Elaine. I have had dental problems after radiotherapy. The two bottom front teeth are hanging in there but look pretty awful and are loose. They've been stuck together so that I can hang onto them a bit longer. Lost a lot of teeth during surgery too so wear a partial metal denture. I don't know why SRS caused this for you. We were warned that radiation for head and neck cancer would affect our production of saliva and hence give rise to rapid dental decay unless a lot of fluoride was used etc. Radiation also affects the blood flow to jaw so it's dangerous to have a tooth extracted in the radiated field without hyperbaric oxygen therapy.
I have not heard of brain tumor patients having this problem – but everyone is different. Hope you can get answers about this.

Liked by loli

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