Parotid gland tumor. Will need surgery. Your experience at Mayo?

@sue thank you so much. My Momma is a silent sufferer which makes it harder not knowing what she is thinking or feeling & Im most definitely sure she would object to “driving” to far for treatment but I can not take no for an answer this time. I am trying to keep my faith & hope but then I get that sick feeling in my stomach. The dread. The fear of the unknown is suffocating. I’ve started the process online with a Mayo Clinic appointment but did not have her insurance information but I’ll get it. I’m going to jot down your question suggestions for me so I’m better prepared for tomorrow. I mean them no disrespect but I do believe in 2nd opinions. I’m trying to educate myself like my life depends upon it because I feel like it does.

@missy78 Any cancer diagnosis is a huge shock to everyone. It forces us to face our own mortality and it takes over your life while you secure diagnosis and treatment. It is healthy and normal to have emotions like you are. As you face this new realization, you will find an inner strength that you didn't know you had. When you see the doctor tomorrow have a few questions prepared such as a request for a second opinion at a larger cancer /referral/teaching hospital, the odds of successful treatment?, side effects of the treatment?. Talk to your mom beforehand about considering travel to a referral canter for best medical care. Initially it seems like just an added burden, but if medical care is limited at home, travel may be worth it. Sometimes, once you have a firm diagnosis and scan results, a video visit can be done where you share your results with a specialist to see if there are better options for treatment.
My cancer was a rather rare location and we began with a referral to a teaching hospital an hour away, but ended up at Mayo Clinic in Rochester MN, 10 hours away. I feel that I am alive today because we chose that route. Instead of surgery by an ENT locally who has done a few, I had surgery by two specialists who do these surgeries daily. I continue to return there 14 years later for that standard of care. Initially it may seem difficult, maybe too difficult, but it should be something to consider, whether she chooses that route or not. Be strong. Have hope. You both can get through this and return to a normal life.

My Momma has a swollen lymph node in her neck. It’s about the size of a plum & been like that since September of ‘25 and noticed a spot lower in her neck (thyroid) biopsy results came back yesterday from the lymph node & it’s cancer. We go tomorrow to talk about her options. Have not gotten results back from thyroid yet but assuming it will be cancer as well. I’m paralyzed with fear. I feel like I could throw up & all I can do is cry. I’m scared. I have no one to talk to hence why I’m here. I do not trust the Dr’s in my small town & definitely want her to get the best PROPER CARE!!! Any help, words of advise etc & all the prayers appreciated!! All I want to do is sit & be with my Momma but not sure that’s what she wants.

My appointment with Dr. Dey went well. He is warm and welcoming at every visit. I was numbed in the office and sat for about 45 minutes before I was taken to another room where the microneedling took place. RF Microneedling was more painful than I expected, but I just let him do the work. He answered all my questions. Cannot lift the upper lip anymore surgically because there is a risk that my lips won't completely seal. He said, and I agree, that I am doing absolutely everything in my power to achieve my smile/speech results, but it will take years. I'm still in the early stages of healing from the January 21 surgery. Each day, I'm learning something. Mirror exercise is my newest routine. I will continue OT/Speech and Red Light Therapy, and work out daily to keep blood flowing. I also take Lion's Mane to help nerve production. I am not giving up on getting a smile. My face looks so good now, I wish I had asked Dr. Dey for a nose job!

@trainwife, how did your appointment go?

@sepdvm I can not tell you how much your reply means to me, so thank you from the bottom of my heart❤️. I have an appointment with Dr. Dey on Friday, so we will leave on Thursday around noon, as it takes 4.5 hours to get there. Well worth the trip, and I have all my questions. He loves questions, no matter how insane they may sound, so ask away! He is a very dedicated doctor with a compassionate manner and calming voice. He cares about his patients. I’ve been taking the lion’s mane, doing red therapy mask daily, OC, and speech therapy twice a week, and am thinking about starting online speech therapy as well if my insurance agrees to pay for both. I'm excited to see Dr. Dey - he will be doing RF micro needling and some touchups on my face. We will talk about another surgery in the future, as my most recent surgery was only 2.5 months ago. Keep in touch and let me know how you like Dr. Dey. He knows me well

@trainwife I can understand your distress. Appearance is a big part of who we are and these paralysis changes are tough to live with. I am currently having more facial issues which I feel to be more muscle atrophy and fibrosis from radiation. Facial exercises seem to help, as does infrared light therapy. I was just referred to a Dr. Dey at Mayo Rochester who specializes in facial reanimation and see him in June. I am not sure that is what I need but my new ENT had no suggestions. If nerve damage is part of your paralysis as mine was, give it time. Nerve tissue is very slow to heal and regenerate function. I was still improving many years later. Research Lion's Mane mushrooms for a nerve supplement. When I started taking that from RealMushrooms.com I had a definite improvement in nerve control. Tho it is hard to look in the mirror some days, your family and friends do not judge you for your appearance. It can be the new normal. Keep up your exercises and look into red light therapy. Enjoy spending time in nature as it relieves some stress. This can still improve for you, just keep looking for new options.

It has been over 2 years since we last messaged. I hope you are doing well. I had a setback on June 2, 2025. My scan of May 27, 2025, showed a malignant nodule on the tip of my lung (the same cancer). I had a lung resection on July 1, 2025, at Mayo. Since then, I have had a few more surgeries on my face, focusing on the lips and smile. I am losing hope, I will never smile again. I go to speech therapy and do daily facial exercises, and still talk out of one side of my mouth. The top right of my lip does not move. My quality of life is not good. I am lucky that my husband has stood by my side, although marriage is difficult. I see a counselor every other week, but I am still my own worst enemy. When I hear of stories like yours, 12 years is a long time. No one ever told me before my surgery that I would never smile again. I miss my old self.

Hello @anchor2025.
That was certainly a hard hit to take when you are on the home stretch with the previous cancer. I have had the SCC from my external ear canal reappear as metastases in my lung twice, on the surface of a muscle, and in a kidney and lymph nodes this last time in 2020. Metastatic SCC has been incurable so far but we have tackled each met with surgery until this last time since it was in the lymphatics. I had 2 years on an immunotherapy drug Libtayo ( Cemiplimab) which so far has eradicated the cancer. All mets were the same tumor as original per pathology.
All we can do is to keep battling as these things reappear. It is success to make your cancer into a chronic disease instead of a death sentence. May not be what we hope for, but sometimes it is the best we can get.

Went to Johns Hopkins in Baltimore in 2010 for parotid cancer since they were rated number 1 for head and neck cancers. Still alive so I am satisfied with my surgeons there.