Meet others living with Head & Neck Cancer: Introduce yourself

had total thyroidectomy in October due to cancer Waiting to start RAI in January I am scared about all that has happened to me Lymph nodes also removed due to cancer

@kathleenmkastrup Hello and welcome to the Head and Neck cancer group. I am certain you would rather be welcomed aboard a cruise ship or similar however this is where life has brought you today.
Most of us here are patients or former patients who have gone down the road you have recently been detoured. As this journey progresses, feel free to ask any questions you might have, start your own discussion (a great way to get specific attention to your issues), or simply gather information from other discussions you find here. This cancer journey is a difficult one. We can answer from experience, which is something most medical staff cannot do. Together, the work of your medical team and patients found here can and will get you through the weeks and months ahead. You are scared because you are wise. Sometimes in life we must surrender ourselves to hope, skill, prayer, and perhaps luck in order to continue.
For now, let's take it day to day. Do you know specifics such as Stage and Type?

@hrhwilliam thank you for teaching out to me. I have such sad and mad feelings. I was diagnosed with an aggressive form of papillary thyroid cancer, i think stage 2. I need to get clarity on that

I had complained to my pcp for a year that i was having difficulty breathing and swallowing. He kept prescribing inhalers that didn’t work. He finally sent me for an ultrasound that showed cancer. He then sent me to a pulmonologist who looked at the scan and told me a tumor was pushing Against my esophagus and windpipe. HE sent me to a ENT who said it was not bad and sent me to another ENT who could do surgery sooner. He also doubted that it was cancer, saying that a biopsy i had done after diagnosis “suspicious with 25% odds of malignancy “. The 2nd ENT looked at the PET scan i had done and immediately sent me to the ED at Yale.

The drs up until this point were not from Yale.

The wonderful surgeon st Yale spent 8 hours working on me. The tumor had grown beneath my breast bone and had to be scooped out. The cancer had metastasized into lymph nodes that had to be removed. The tumor was .9

I am exhausted just writing this and crying. I am so afraid of what will happen to me and EXTREMELY angry at my pcp

@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.

Thank you for your thoughtful response I probably won't die from this but know I am in for a rough ride I just want to get the treatment going and over with I am not a patient person by nature and do not like either being care for or relying on people I am just 8 weeks or so post op and going to speech therapy and lymphedema pt
Plus, I am scheduled for surgery on my vocal cord since it was damaged when cancer was removed from it The result is that I am not getting my voice back and am breathless most of the time I am hanging my hat on that the surgery will help Please root for me

I have been struggling with my feelings about this and couldn't put my finger on just what I was feeling until a few minutes ago It's that I have not really been sick all my life and God knows I have taken my lumps and survived them So why NOW? Why?

I stopped working 3 years ago I turned 78 last week I was an adoption and foster care social worker for 37 years
I supported and helped hundreds of children and adults to the best of my ability, and I am proud of my work So, why now? Why me? Why do this to my children who now take care of me? They watched my husband, their father, die a slow death while on home Hospice. Don't make them do it again I am weary and resentful

Thanks for listening to whining It helps

@kathleenmkastrup Hello and I am so sorry you have this treatment to look forward to. I understand your feelings about not wanting to need caregivers and family to help. You were always the one to be giving, not receiving the care. I've been there also in my head and neck cancer saga. It may help to think about how gratifying it is to help others in need. You are giving your family members and friends a chance to experience this (for a second time, perhaps). Many of our friends, when offering their assistance, really do want you to tell them how they can help you in this battle.
As for your pcp, I agree with your feelings but anger is not a helpful emotion. It causes you stress and anxiety. A helpful action if you want to keep this doctor is to write all your feelings down in a letter or email, but then file it away or delete it. It helps you to release your anger but not damage your doctor patient relationship. When my husband's bladder cancer was missed by a local radiologist and urologist, then luckily addressed by Mayo Clinic, I felt the need to educate these doctors as to their errors. I wrote a detailed letter to the radiologist noting that Mayo radiology diagnosed a malignant tumor from the same CT scan that they declared negative. My hope was that perhaps they would look back on that scan and perhaps learn what they missed. Or maybe they just filed my letter in the trash. My husband and I had a recheck appt with the urologist so that we could ask questions about missing important information and possibly cause him to be more careful in the future with other patients. Of course he is no longer my husband's local urologist. I am a veterinarian (for 40+ yrs) and if I misdiagnosed something I wanted to know about it and learn from my mistakes. Medicine is an inexact science with many shades of gray, not black and white. Doctors are constantly learning by experience and continuing education and perhaps by learning about their errors. Long story short, it can help you lose some anger and feel better about this path you are taking. I hope it helps. I wish you strength and great skillful doctors and a good outcome back to health. Keep in touch.

@kathleenmkastrup I don't think you're whining, just expressing your feelings. I think you are a very strong person!

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.

Sorry for all you are going through. Gold weights can be placed in your eyelid to enable closing. Paralysis is permanent. Too late now, but for others, go to a large teaching hospital that specializes in head and neck cancer, first, not as a last resort. You get the best surgeons and testing facilities. Radiation is brutal with tons of side-effects, some temporary and some your forever friends. Unfortunately as the years go on you may see new radiation damage issues arise. I am living proof after 15 years that, at least for me, it only continues to worsen. Please consider finding more competent doctors and if necessary, go to their offices and say you won't leave until the doctor sees you. It has worked gor me. Desparate times need desparate actions. Sometimes you must shout to heard and you are your best advocate. Take care.

I have completed surgery and treatment for tonsil and throat cancer. Post surgery I had 33 radiation treatment but no chemo. The cancer did not travel to lymph nodes.
It was a difficult process that resulted in weight loss, swallowing issues and dry mouth. Now two years cancer free and living normal life other than more selectivity in my diet. Fatigue was high year 1 and has improved. Had excellent ENT surgeon, oncologist and radiation team.