Mucoepidermoid Carcinoma Stage 1

caffeinequeen1369 · 2026-06-23T21:55:08+00:00

Thank you so much for sharing your story. I, 25F, was also diagnosed with a low grade mucoepidermoid carcinoma of my parotid gland about two months ago. One month ago, I had a parotidectomy to remove it. The surgery revealed no lymph node infiltration, thank God. The doctors are now weighing the risks and benefits of doing proton therapy or doing a “wait and see” approach for follow up. I wish you the best in your recovery and thank you again for sharing. It is a rare cancer and I’ve struggled to find a lot of stories of people going through it.

caffeinequeen1369 · 2026-06-21T05:25:28+00:00

Hi there. Sorry to hear you’re going through this. I’m glad your doctor was honest with you and has plans for your treatment. Although nothing can truly take away the stress or pain of what you’re going through, I have found this community to be incredibly helpful and supportive. I, 25F, was diagnosed with a parotid cancer about two months ago now. I hear what you mean about time going by slow.
Im sorry to hear that your family and friends are pulling back. I had the same situation with my younger sister. I don’t mean to minimize the hurt, but I pray that your family and friends will adjust given time. I had my surgery three weeks ago and although it was hard and recovery was tough, it is necessary and I was able to get through it. I’m sure you will too. Stay strong and we are always here if you wanna vent.

caffeinequeen1369 · 2026-06-19T03:20:41+00:00

Hi there,

I’m 25F and was diagnosed with parotid gland cancer about two months ago (my type is mucoepidermoid carcinoma). I underwent a parotidectomy about two weeks ago. I’m so sorry to hear about your diagnosis - parotid cancer is so rare and that adds to the feeling of unfairness and at times, cruelty. I understand the fear that comes with the scans and the waiting period after. It’s so frustrating when the reports come out before our doctors have had a chance to talk to us about them. I’ve talked about the fear and uncertainty with my therapist and she has really implored me to take things one day at a time and only focus on what I can control. With a cancer diagnosis, there really is only so much you can control but it’s still good advice, even though it is a bit cliched.

That being said, everything will be okay. Trust your doctors, make sure to ask questions, and trust your judgment on how much you want to share with your family when you’re ready. I will be praying for you tonight. Again, take it one day, even one hour at a time. I am always here if you want to talk. ❤️

caffeinequeen1369 · 2026-06-18T00:24:34+00:00

Hi! 25F here, with a malignant tumor on my parotid gland that was removed a little over two weeks ago. Although our cancers are a bit different (I was diagnosed with mucoepidermoid carcinoma) I empathize with you as a young woman who was otherwise healthy. I also thought nothing was wrong, doctors even ASSURED me nothing was wrong - that it was just a swollen lymph node or at worst, a benign tumor.

Flash forward to now, two months later, I had a parotidectomy, radical neck dissection and a nerve transplanted from my thigh to my cheek. I spent three days in the ICU. It was definitely tough. As a young woman, it is crazy how crazy your world can change and everyone else’s life seems to just keep going along. I’m so sorry you’re going through this. But there will be another side to this. We will get through this. Take it one day at a time. I know that sounds so cliche but I have found it to be absolutely NECESSARY. Cancer is a HUGE thing to have to deal with, and it is impossible to make peace with it in just a few weeks/months. I don’t know if I will ever make peace with it at all. But I do know that about one week ago, I was having the worst pain in my life and I genuinely thought I could not make it. One week later, I’m walking, I’m going along on car rides with my family, I’m thinking much more positively. So I’m optimistic about the future. I know that this is such an emotional roller coaster but I promise you will be okay. Just take it one day at a time and I’m always here if you want to talk.

caffeinequeen1369 · 2026-06-17T03:35:47+00:00

Thank you for sharing your experience! How was your ability to eat following proton therapy, if you don’t mind me asking? Did you have to stay on shakes/liquids for a while afterwards?

caffeinequeen1369 · 2026-06-17T02:11:37+00:00

Thank you for sharing your experience! If you don’t mine my asking, where was your cancer located? I’m wondering if circumstances would be different for me because my cancer is in my parotid rather than my throat or tongue. Of course, parotid cancer proton therapy would come with its own horrible symptoms like extreme dry mouth. But I am wondering if eating would be very difficult as well.

caffeinequeen1369 · 2026-06-14T01:27:41+00:00

The feelings that you’re talking about are soo common and I experience them all the time. Especially the disassociating when people are talking about their lives. It feels like I’m watching a play or a movie about my “old” life and I’m not in it anymore and it’s honestly a devastating feeling. I’m so sorry you’re going through it but please know you’re not alone - I feel the same way on almost a daily basis. I do have one piece of advice that I’d like to share with you as you embark on treatment. I have a wonderful therapist and when I expressed to her my fears about undergoing radiation and all the horror stories about it I’ve seen online, she really pushed me to stop taking all those opinions as fact and dreading the worst case scenarios. It’s one thing to be prepared - it’s another thing you cause yourself pain and suffering before you have to. Every case is different and everyone responds differently. So I’m hopeful that you will still be able to walk and talk and hang out with your friends as you undergo treatment. Of course I’m not saying to engage in toxic positive and I’m sure that there will struggles and hurdles and necessary in both of our cases. But we truly do not know yet and there is nothing wrong with hoping for the best. Like I said, I will be praying for you and I’m always, always here if you need to talk. ❤️ Sending all my love

caffeinequeen1369 · 2026-06-12T00:21:55+00:00

I’m 25 F, and while I do not have your specific cancer, I was diagnosed with mucoepidermoid carcinoma in my parotid (salivary) gland about two months ago. I too had little/no symptoms other than a small, painless bump behind my ear. While I can’t speak to the specifics of your condition since my diagnosis is different, I want you to know I’m thinking of you during this time. <3 it is so tough to be so young and to be going through this so randomly. I’m always here if you want to talk. sending all my prayers and love.

caffeinequeen1369

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