Meet others living with Head & Neck Cancer: Introduce yourself

Hi All. My name is Larry. I had squamos cell carcinoma in my neck in 2009. The VA oncologist said that surgery is too invasive so I had 35 radiation treatments. I was cancer free for 16 years. In Jan 2025 I had a 1/4 inch lump on my neck behind my ear. My primary care at the VA thought it was a cyst. Three months later it was the size of a US quarter. Primary care sent me to an ENT in the community , appointment 4 months later . After 3 months it was an open sore. My dermatologist said he could drain it one week before the ENT appointment . I agreed . At the ENT appointment she refused to treat me because someone else had drained it. I needed to find another ENT. That appointment was in 2 months. The tumor behind my ear had been growing for almost one year. The surgery to remove the tumor was more involved than the doctor thought it would be. It went from behind my ear to below my larynx. He didn't get all the cancer.
The surgery was in March 2025 and left one side of my face paralized because he cut a nerve . When I asked him what he could do he said I would need to learn to live with it ! I had an oozing wound on my neck after surgery that became infected. After antibiotics it stopped leaking and formed a hard scab. I still have a hard scab after 10 months. My eye does not close and becomes dry and very sore. It affects my sight and ballance. My mouth does not close all the way making eating very difficult. After surgery my dentures no longer fit in my mouth. I needed to get new dentures. I am waiting for an appointment with an immunotherapist. I no longer trust doctors!
Since I had cancer in 2009 I think my primary care at the VA should have caught the cancer long before she did. The tumor grew and spread for almost one year befor the botched surgery.
Cancer doesn't wait while you are waiting for an appointment ! Get 2 or 3 2nd opinions and stay in their face.

Hi All. My name is Larry. I had squamos cell carcinoma in my neck in 2009. The VA oncologist said that surgery is too invasive so I had 35 radiation treatments. I was cancer free for 16 years. In Jan 2025 I had a 1/4 inch lump on my neck behind my ear. My primary care at the VA thought it was a cyst. Three months later it was the size of a US quarter. Primary care sent me to an ENT in the community , appointment 4 months later . After 3 months it was an open sore. My dermatologist said he could drain it one week before the ENT appointment . I agreed . At the ENT appointment she refused to treat me because someone else had drained it. I needed to find another ENT. That appointment was in 2 months. The tumor behind my ear had been growing for almost one year. The surgery to remove the tumor was more involved than the doctor thought it would be. It went from behind my ear to below my larynx. He didn't get all the cancer.
The surgery was in March 2025 and left one side of my face paralized because he cut a nerve . When I asked him what he could do he said I would need to learn to live with it ! I had an oozing wound on my neck after surgery that became infected. After antibiotics it stopped leaking and formed a hard scab. I still have a hard scab after 10 months. My eye does not close and becomes dry and very sore. It affects my sight and ballance. My mouth does not close all the way making eating very difficult. After surgery my dentures no longer fit in my mouth. I needed to get new dentures. I am waiting for an appointment with an immunotherapist. I no longer trust doctors!
Since I had cancer in 2009 I think my primary care at the VA should have caught the cancer long before she did. The tumor grew and spread for almost one year befor the botched surgery.
Cancer doesn't wait while you are waiting for an appointment ! Get 2 or 3 2nd opinions and stay in their face.

Hi All. My name is Larry. I had squamos cell carcinoma in my neck in 2009. The VA oncologist said that surgery is too invasive so I had 35 radiation treatments. I was cancer free for 16 years. In Jan 2025 I had a 1/4 inch lump on my neck behind my ear. My primary care at the VA thought it was a cyst. Three months later it was the size of a US quarter. Primary care sent me to an ENT in the community , appointment 4 months later . After 3 months it was an open sore. My dermatologist said he could drain it one week before the ENT appointment . I agreed . At the ENT appointment she refused to treat me because someone else had drained it. I needed to find another ENT. That appointment was in 2 months. The tumor behind my ear had been growing for almost one year. The surgery to remove the tumor was more involved than the doctor thought it would be. It went from behind my ear to below my larynx. He didn't get all the cancer.
The surgery was in March 2025 and left one side of my face paralized because he cut a nerve . When I asked him what he could do he said I would need to learn to live with it ! I had an oozing wound on my neck after surgery that became infected. After antibiotics it stopped leaking and formed a hard scab. I still have a hard scab after 10 months. My eye does not close and becomes dry and very sore. It affects my sight and ballance. My mouth does not close all the way making eating very difficult. After surgery my dentures no longer fit in my mouth. I needed to get new dentures. I am waiting for an appointment with an immunotherapist. I no longer trust doctors!
Since I had cancer in 2009 I think my primary care at the VA should have caught the cancer long before she did. The tumor grew and spread for almost one year befor the botched surgery.
Cancer doesn't wait while you are waiting for an appointment ! Get 2 or 3 2nd opinions and stay in their face.

@kathleenmkastrup It is surprising how often doctors overlook cancer while looking elsewhere to cure you with medicines. The fact is most doctors rarely see cancers in patients. I am glad you got this sorted out after being passed around hither and fro, doctor to doctor.
Yale has a good reputation and tries to put the patient first. They might send you somewhere else for follow up treatments, I don’t really know how they handle things in the land of tweed.
Less than 1cm and some lymph involved so I would guess that is a stage two. Don’t quote me as I don’t practice medicine.
You are afraid of what might happen to you. Likely you will be fine after some rather annoying radiation and perhaps Chemo. For me, I came to grips that this might be the end. Of course it wasn’t but that peace has been with me ever since. I have said for years that if I die I will have no regrets. I have lived a good life (actually an amazing life never imagined).
As for you, you are not stage four plus. You don’t have an expiration date stamped “soon”. You just have a battle to face, a battle you didn’t choose but one you must fight nevertheless. You are going to put the brakes on your everyday life until you get this sorted out. You don’t have an option here. You must do this. And hopefully/likely this time next year this will all be pretty much in your past. Courage.

@hrhwilliam

Having a really bad day Just so sad I miss my husband and don't want to upset my kids by wallowing in my pity party I wake up each morning, and wish I didn't

Supposed to start radiation therapy, and dr is having trouble getting medicare to approve the shots I need before treatment I just want to get it over with Look in the mirror and see an old, sad woman looking back at me This is really taking a toll on me

Going to see a new dr today to see if there is a good fit for her to be my pcp My last dr left me undiagnosed for a year even though I told him I was having trouble breathing and swallowing When finally diagnosed by a different dr, cancer had spread into my lymph nodes and necessitated an 8 hour surgery

This is another reason I am sad and mad I have 8 siblings and none of them have lost a spouse and been diagnosed with cancer Why am I being picked on?

@kathleenmkastrup Some days we wake up and wonder why we are still here. Life isn’t fair. But within us somewhere is a part that keeps us going in hopes of better days.