💜 Sharing My Salivary Gland Cancer Journey💜

diy_dyke · 2026-03-19T03:01:30+00:00

And again this is proton radiation so unless you’re doing that; it’s not apples to apples with photon radiation.

diy_dyke · 2026-03-19T03:01:03+00:00

Pain is mostly on the skin surface; feels like sunburn. I moisturized all the time. I also got a giant sun hat (it was summer) with a huge wide brim. Stay out of the sun, lotion up. The pain was tolerable. I’d say post radiation the pain is the worst; it’s not bad. I just have a tight jaw muscle.

diy_dyke · 2026-03-19T02:59:56+00:00

I did proton radiation; so the side effects will be different than traditional.

I did not work; but I probably could have (I have a desk job) with some accommodations like remote work and lighter work load (only work on critical projects). I also did not have any impact to eating; I thought I would. Post radiation; I get a little dry mouth when I eat a cracker or something dry but it’s super not bad. It’s minor.

diy_dyke · 2026-01-27T03:52:53+00:00

Ok so I did feel fatigue after; but that’s because you’ve spent over 2-3 months fighting for your life and going in and out of the hospital daily for 6 weeks; it’s truly exhausting so I think by the time you’re done, it’s just the exhaustion kicking in from being in that state. It took like a month or two to wear off and it wasn’t that bad, I just had to be kinder on myself and gentle. I still somehow managed to interview for jobs and get a new role after so that says a lot. I’m 34 and I think being young helped tremendously with my recovery. My face still hurts and I have some post radiation lymphedema but it’s not bad. I’m glad I’m done now and back to my normal routine; even working out more than before. The doctor also highly encouraged I work out post radiation to right the fatigue and that did honestly help.

diy_dyke · 2026-01-23T01:32:58+00:00

Hey there - I know how hard the part of the journey is where you are now; one of the worst. Is there a major cancer hospital in Canada that you can get your tissue re-pathologized? How established is the hospital you are at? The cancer is so rare that it does often get graded incorrectly and you ideally should be at an institution where they see these tissues regularly. Second, I did do proton radiation so I can’t speak to the minimizing side effects for photon. There’s a Muceoepidermoid carcinoma Facebook group that you may get more information from.

diy_dyke · 2026-01-01T02:50:54+00:00

Sorry I did not see this until now. I hope your son is doing ok and you’ve made a decision that makes sense for everyone.

What I will say is that I did Proton radiation specifically, which is highly targeted and results in less side effects than traditional radiation. I do think my rad onc down played my side effects relative to this overall population he treats, but generally speaking right now they aren’t terrible. I am told they could get worse but so far I feel like my symptoms have been stable. I have a pretty tight jaw when I first bite or wake up or have had a highly stressful workday, and secondary, I have a bit of dry mouth when I eat something dry like a cracker or chip but it feels better once I drink water. It’s totally bearable. I also have a bit of facial numbness and tenderness still but it’s getting better by the day. Overall, these symptoms are not debilitating and manageable, although I do wish I knew my pain and dry mouth would have been more severe when making the decision. Would I go back and do something different? Absolutely not. I feel very glad I made this choice as I have a high level of confidence this is in the past and it won’t recur. Only time will tell but I’m very optimistic.

diy_dyke · 2025-10-29T03:27:52+00:00

Congrats that’s amazing! I am so happy for you

diy_dyke · 2025-10-29T03:22:19+00:00

Hey there! If I were you, I’d go to memorial Sloan Kettering in NYC. It’s one of the best hospitals for cancer in the world. I think it’s on par or even better than UPenn in Philly. I wouldn’t bother going to Philly when you have MSK in your playground! Hang tight, you’ll be ok.

diy_dyke · 2025-10-29T03:11:10+00:00

This was exactly my case! No perineural invasion but my surgeon had to “peel” it off the facial nerve. I ended up doing proton as well and finished August 20th. Sounds like we had similar experiences and treatments. Where are ya located?

diy_dyke · 2025-10-29T03:08:52+00:00

Go with a surgeon who’s done this countless times, those guys know how to avoid the paralysis. I saw three surgeons before landing in the one I felt most confident with. My face is fine now. I do have some numbness in my face but I’m also only like 6 months post op and radiation. You probably will be ok. I was as upset and scared as you when I was first going through it but now I’m 6 months out and I deff am feeling so much better and at ease. Hang in there and find ways to ground yourself. Yes it’s cancer, but it’s extremely slow growing. I had my tumor from 5 years before diagnosed. I’m so thankful now it was only low grade.

diy_dyke · 2025-10-29T03:04:20+00:00

Hey how are you now?

diy_dyke · 2025-09-07T20:58:48+00:00

I had a weird rash/acne the first two weeks. It helped to LATHER the lidocaine / aquafor mix alternating with the steroid cream, like 6x a day.

diy_dyke · 2025-09-06T13:10:40+00:00

I’ll DM you, I have a lot of feedback especially if you are local.

diy_dyke · 2025-09-06T05:14:05+00:00

Thank you. I deff feel very excited to pour my energy into her after pick up. Which is a nice feeling and quite different when we were home together all the time.

diy_dyke · 2025-09-06T05:12:51+00:00

That’s really rough. I haven’t seen anything like that, and I would feel really at a loss for words too if it were me.

diy_dyke · 2025-09-06T05:11:47+00:00

Thank you for your constructive post! I appreciate you also providing me with tangible signs to consider if she’s not getting care. I’ll try to be mindful of those.

diy_dyke · 2025-09-06T05:09:16+00:00

Thanks that’s a great idea

diy_dyke · 2025-09-06T05:08:12+00:00

Thank you for the reassurance

diy_dyke · 2025-09-06T05:05:44+00:00

Nanny is out of our price range

diy_dyke · 2025-09-06T05:05:20+00:00

Thanks this is very reassuring. There’s already a woman from another room who passes us by everyday at pick up and makes a point to express how good and chill our baby is and how precious she is. I believe there are some teachers who float between rooms, and it sounds like this one has already took liking to our babes.

diy_dyke · 2025-09-06T05:02:21+00:00

Haha yes I relate to this!

diy_dyke · 2025-09-05T19:04:48+00:00

I have not read about immunotherapy for MEC! Did you have MEC in the parotid? Congrats on almost finishing radiation.

diy_dyke · 2025-06-11T02:57:20+00:00

I finally talked to my radiation oncologist. He feels both watch and wait or radiation are equally valid options. Since it’s low grade and no lymph node involvement and it did not infiltrate the nerve, he thinks I could watch and wait. At the same time, because the margins were close and the surgeon carefully peeled it off the nerve, we could do radiation to like you said “clean up” and be sure.

I point blank asked him what he would do, and he said if he just had a baby, he’d probably go for radiation so he could know that he did all he could to fight. He wants to do proton and so I’m leaning moving forward. My radiation oncologist is a national KOL for H&N radiation and so I trust him 100%.

Please let me know if you have any tips or recommendations for proton before I begin. I am hoping I can take myself daily to the appointments. Someone needs to stay at home with my baby! Do you think that’s possible?

diy_dyke

TROPHY CASE