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Adenoid Cystic Carcinoma. I'm almost 100% sure no one on here has had it


  • 24 Comments sorted by Votes Date Added
  • DMMDMM Community Member
    Jason Kratky;3695 said:
    but it's worth asking.

    Yep, I think you are the first and only so far. I finally found a couple of people who had my first type of cancer a few months ago, but still haven't found anyone who had my second cancer. I like to tell people, the cancer fair was so nice...she gave it to me twice...i wish someone would kick that b-itch's butt! Anyway, sorry you got tangled up with the Big C too....but glad you are here. You will find a lot of great people and support on the forums.
  • Thanks DMM. The cancer I have/had/whatever averages people 2x my age. I've always been a statistical anomaly, this just further proves that I'm just special :) Found it in January and here I am now, still kicking.
  • DMMDMM Community Member
    Jason Kratky;3699 said:
    Thanks DMM. The cancer I have/had/whatever averages people 2x my age. I've always been a statistical anomaly, this just further proves that I'm just special :) Found it in January and here I am now, still kicking.

    After two separate cancers, diagnoses 10 years apart......I keep telling my doctors I am tired of being special. LOL
  • DMM;3700 said:
    After two separate cancers, diagnoses 10 years apart......I keep telling my doctors I am tired of being special. LOL

    That made me laugh.
  • Hello Jason, I too had Adenoid Cystic Carcinoma mine was of the Parotid Gland age 32, with 6mth old daughter. It was an intense time but happy to say that it was over 7 years ago. I consider myself a cancer thriver and I have written a book about the transformation cancer triggered in my life which is being published and in bookstores this Oct/Nov. Know that you have the resources of your healing already within you, you got this! You sound a positive person and your optimism and humor will serve you, continue to stand in your power. In your service, Michele
  • Appreciate it Michelle. Congrats on the publication. My AdCC was found on my soft palate.
  • Thanks, I like your quote. My treatment appears similar to yours, it was long and I had some complications, I worked with energy through chakras and emotional freedom tapping, and lots of visualization. I even named my radiation machine and would greet is daily with "Alright, 600 lets kills some cancer". Keep your mind on what you want. Best2u
  • I like it. My focus now is getting back to some sort of normalcy.
  • LeesuhmLeesuhm Community Member
    You certainly aren't the only one! Mine started in my parotid. Followed up with 30 radiation treatments. Unfortunately, I had both ignored my tumor, and been told by several dentist that it was "probably nothing" for the better part of 15 years! Sounds crazy now, I know. So, I found out about a month ago that they are nearly 100% sure it has spread to my lungs. So, I am starting a clinical trial for a new radiosurgery protocol so that they will "zap" the spots where it is in my lungs.

    No exactly a positive story, I know, but I just wanted to let you know you aren't alone!
  • Thanks Leesuhm. AdCC blows. I hate that it has spread to your lungs. Hopefully the new treatment works well.
  • zaccoopzaccoop Community Member
    Hey Jason (and others),

    I have ACC of the minor salivery gland (junction of hard and soft palate). I was diagnosed over 3 years ago at 26 and have been cancer free for about 3 years. I only had a partial maxillectomy and no chemo or radiation so I might not be the best at answering questions but feel free. You aren't the only one....just one of the few under 50 :) I have yet to meet another young adult with ACC but I have briefly interacted with one other through facebook. Hope you are doing well and staying strong.

  • LeesuhmLeesuhm Community Member
    I have yet to actually meet anyone with ACC, but I email a couple of people I met online. I don't know if you all have checked out and, but they both have a ton of good info. It can be a little scary to see it all spelled out, though. If you are interested, the yahoo list on is very active, but be warned - a lot of the people on there have serious health issues resulting from this lovely disease. OTOH, it is always nice to hear from people out there who have been living with this 20 or even 40 years, and there are quite a few who were diagnosed in their teens, 20s and 30s.

  • LeesuhmLeesuhm Community Member
    Jason Kratky;4214 said:
    AdCC blows. I hate that it has spread to your lungs.

    Thanks Jason. actually, problem is that AdCC doesn't blow. Otherwise, there'd be no problem with it being in my lungs. ha! ok, I know that's really bad, but I couldn't pass it up ;)
  • This is my first post on here, but I wanted to let you know that you aren't alone in this diagnosis, as well. I was just diagnosed on Sept 30th of this year, and had the surgery to remove the tumor from my parotid gland on Oct. 28th. I have my first follow-up appointment tomorrow with the surgeon to find out where we go from here, and I'm a little scared. What's been hard for me is, when they cut the tumor out, they had to cut my facial nerve, so now I can't feel the right side of my face, and I can't move those muscles, either. Did you have any of those sorts of troubles?

    By the way, I agree with you... I didn't want a rare form of cancer, either. I've always known I was special. Cancer doesn't need to reinforce that. :P
  • Hey Dawn, Welcome to our exclusive club! We're all special around here - or at least "unique" ;)

    How did the follow up go? Are you looking at radiation? It's no fun, but you'll get through that as well.

    My AdCC was in my parotid as well, and I lost one branch of my facial nerve, but not all. Some online friends, though, have lost all movement due to surgery, so if you have specific questions, I can ask them, or give you their emails. Any chance for you of doing a nerve graft?

    Have you checked out ? The forum there is full of great people who all have parotid related issues. They are a big part of the reason I stayed sane through surgery and radiation.

    I feel a little like I'm playing 20 questions, sorry! It's just that what I know of your story is so similar to mine. (and it's a little rare, as I am sure you have found out)

  • Thanks for the welcome, Lisa. :) What a club we all get to belong to, eh?

    The follow-up went well. I'm getting treated at the James at OSU in Columbus, which is supposed to be an awesome cancer center, so I feel pretty lucky. The doctor said he wants me to start proton radiation at IU Bloomington, about 6-7 weeks of it. I've got my initial consultation with the IU proton radiation doctor on Friday. He wanted me to do the proton radiation, something for which I'm pretty thankful for, when looking at the side effects of regular radiation vs proton radiation.

    They did do a nerve graft during the surgery, and he thinks about 50% of my facial movement should come back, don't know when, but god knows I'd love to be able to smile at myself in the mirror again. That's been one of the hardest parts, issues with speech, missing my full smile, feeling like I don't look like myself.

    I haven't checked out, but I joined the ACC Yahoo group. I find it a bit discouraging, because they talk about so many horrible side effects. It's hard to read about that all the time. I'm glad I found these forums, though. Also, it's nice to speak with someone who is my age with this diagnosis. I'll definitely keep you updated. Thanks again!
  • Jason, Micheleh, Zaccoop, Leesuhm and Dawn, I'm pleased to make your acquaintance. I was diagnosed with ACC (in the sinus) last September. You all sound like you've got a great attitude in dealing with our common condition. All the best, and to your health!
  • I think that DMM is really an expert in this area and he is full of experience and kind-hearted person.
  • i have small swelling on posterior portion of my hard plate..and I have occational numbness in teeth and sore throat..I have done a biopsi and reesult shows no maignancy but nonspecific inflamtion and atypia.should i be worried?
  • My 17 year old has a new diagnosis of ACC of the submandibular gland. Going through radiation her senior year :(
  • Sorry about your daughters diagnosis. My 27 year old daughter in law was diagnosed with ACC of the submandibular gland 2 weeks ago. She has surgery scheduled for November 14. She and my son's wedding was just 8 weeks ago and they have a 3 year old daughter and an 18 month old son. She has a pet scan on November 6th. Hoping and praying it hasn't spread anywhere. The tumor is 2cm. I feel like it's constantly on my mind! Hoping for the best for your daughter
  • I’m so sorry Chrissy. She has now completed treatment and is doing pretty well. We have scans in 3 months. I will say an extra prayer. It is definitely consuming. I’m so glad she has you to support. My daughter came home after 2 months of treatment and her boyfriend broke up with her. Tough for a teen girl under any circumstance, but especially hard right now.
  • Hi @khoecken. My daughter was also dx w ACC in 2017 (at age 14) of the parotid gland. I have been working for the the last several months tirelessly to get information and resources to our pediatric/teen acc community and their parents since it's so incredibly rare. We have a couple of Facebook pages just for our unique situation (one for parents and one for the patients) and we just launched our website this week: I hope you and any others who have been diagnosed with ACC as a child or teen will come find us. We have even been fortunate to start fundraising for the first ever research being done on our population through Memorial Sloan Kettering for this upcoming Spring.

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