Unlucky lottery winner. Spoiler MEC.

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dan_the_man
dan_the_man Member Posts: 6
edited January 2021 in Head and Neck Cancer #1

Hello Everyone,

 

As you might have guessed from my username, my name is Dan. I couldn’t think of anything clever at the time of creation so the generic, “Dan The Man”, username seemed appropriate. While I find myself be to a new member of the club that nobody wants to be a part of, but I’m glad to be here with you all. Here goes nothing! 

My story is relatively short and has happened in a very quick period of time. On October 30, 2020, I casually walked into my dentist’s office for routine cleaning. During the exam, my dentist performed a physical examination of my neck feeling for anything out of the ordinary. As you might have guessed, he found a “lump”; otherwise, if he had found nothing, you would not be reading this J. Specifically, the lump was located on the left side of my neck under my jaw. My dentist suggested I get the “lump” looked at, however, he felt that it was probably nothing. Heeding his advice, and with the loss of a very close friend to melanoma almost 364-days earlier, I scheduled an appointment with my PCP.

Roughly a week and a half later, I visited with the CNRP in my PCP’s office. He suggests that I might have a blocked salivary gland and recommends sucking on hard candies and chewing gum for a week or two. His hope was the blockage would release and the swollen gland (“lump”) would subside. He also sent me for bloodwork. Fast forward another week, admittedly after going through a bag of LifeSaver’s hard candies and a quarter bag of Jolly Ranchers, the lump did not subside. Since there was no change in the “lump”, the CNRP sent me for an ultrasound. Ultimately, the radiologist noted I had a heterogeneous nodule in the left submandibular region of my neck. He noted a CT with contrast should be performed.

In the middle of December, I have the CT and the radiologist confirms the “lump” is indeed a neoplasm. It is recommended that I see an ENT to have an FNA biopsy performed. December 23, 2020, my ENT reviews my case and performs the biopsy. During the examination, he automatically recommends surgical excision of the tumor regardless of the biopsy results. The surgery was scheduled for Jan 12, 2021. Happy New Year to me! The biopsy results came back before the new-year as undiagnosed. My ENT suggested performing the more extensive surgery: tumor and submandibular gland excision w/ a level 1B neck dissection. I agreed, it was the more cautious approach and gave the green light. 

January 12, 2021, Surgery day! The surgery was a success! While in the PACU, my ENT noted that what he removed did not look good and that my lymph nodes were swollen/enlarged. He also noted that the surgical biopsy results should be completed by my second postop visit on Jan 19, 2021. 

Result day! My doc noted that the incision site looks very good and is healing nicely (yay!!!). In the next breath, which I appreciated, he noted that my tumor was cancerous. He noted that I have T1 intermediate-grade mucoepidermoid carcinoma (MEC) /w a sclerosing variant. He also noted that my lymph nodes and margins clear of cancer! The MEC was localized to the tumor only! Honestly, it’s the second-best result that I could have received (best being a benign tumor, obviously). He mentioned the sclerosing variant is incredibly rare, ~30 reported MEC cases in the medical journals. He also explained that it is essentially scar tissue in the middle of the tumor and from what he can tell, it’s insignificant. Lastly, he noted that he will review my case w/ a tumor board to see if radiation is recommended. He feels that it will not be. The tumor board meets every Thursday. My ENT will be presenting my case later this week. I should know by Friday if I need radiation or not. 

I should also mention that I have become a total nerd about anything medically related to my body since the journey started, specifically with MEC. I’m currently trying to compile as much information as I can about the cancer.

Hope everyone has a great Sunday! I’ll provide an update later this week with the recommendation of the tumor board!

Thanks for reading!

- Dan

Comments

  • PipLily
    PipLily Member Posts: 127 Member
    edited January 2021 #2
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    Welcome Dan-

    Will be praying for good news from the recommendations of the Tumor Board on Thursday. Sounds like you are arming yourself with knowledge, and that is a great tool to have. This forum is also an incredible source of help, so I’m glad you found it as well. It helped my husband so much in the early part of his journey. Let us know after Thursday!

  • dan_the_man
    dan_the_man Member Posts: 6
    edited January 2021 #3
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    PipLily said:

    Welcome Dan-

    Will be praying for good news from the recommendations of the Tumor Board on Thursday. Sounds like you are arming yourself with knowledge, and that is a great tool to have. This forum is also an incredible source of help, so I’m glad you found it as well. It helped my husband so much in the early part of his journey. Let us know after Thursday!

    Hi PipLily! Thank you for the

    Hi PipLily! Thank you for the warm welcome. I will definitely keep everyone update. 

  • wbcgaruss
    wbcgaruss Member Posts: 2,275 Member
    edited January 2021 #4
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    Hello Dan

    And welcome to the forum. I must say you have a very good dentist and it seems you are surrounded by great medical people. They did not fool around and followed through well on your case. Here are well wishes and Prayers that the report on Thursday is positively Good-Take care-God Bless-Russ

  • dan_the_man
    dan_the_man Member Posts: 6
    edited January 2021 #5
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    wbcgaruss said:

    Hello Dan

    And welcome to the forum. I must say you have a very good dentist and it seems you are surrounded by great medical people. They did not fool around and followed through well on your case. Here are well wishes and Prayers that the report on Thursday is positively Good-Take care-God Bless-Russ

    Hi Russ!

    I wholeheardly agree, I have a great medical team behind me! Thank you for the prayers and well wishes. I am sending prayers to everyone here, as well! Take care! God Bless!

     

    - Dan

  • motorcycleguy
    motorcycleguy Member Posts: 478 Member
    edited January 2021 #6
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    dan,

    I hope you find out that Radiation is not necessary - and that you have the best possible outcome!

    It's always tough to wait for news like that. It seems the unknowns are always the toughest...

    mg

  • big G
    big G Member Posts: 176 Member
    edited January 2021 #7
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    motorcycleguy said:

    dan,

    I hope you find out that Radiation is not necessary - and that you have the best possible outcome!

    It's always tough to wait for news like that. It seems the unknowns are always the toughest...

    mg

    Dan

    Dan, sounds like you have a really good dentist. Your team took quick action which usually bodes well. Wishing you the best! 

     

    Trust in your medical team that they will guide you through this.

  • Logan51
    Logan51 Member Posts: 464 Member
    edited January 2021 #8
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    Yep

    I ditto all of the above. 

  • dan_the_man
    dan_the_man Member Posts: 6
    edited January 2021 #9
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    Thank you!

    Thank you everyone for the kind words and wishes! I talked with the ENT yesterday and we should know tomorrow or Friday. I'm looking forward to the news whether it is favorable or not. 

  • dan_the_man
    dan_the_man Member Posts: 6
    edited January 2021 #10
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    No radiation!

    I heard back from my ENT this afternoon, and he said the tumor board does not feel that radiation is needed! This is super exciting news! My next follow-up appointment is in April and then another 3 months after that! I'm feeling very blessed today!

  • ljsunflower
    ljsunflower Member Posts: 10 Member
    #11
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    dan_the_man said:

    No radiation!

    I heard back from my ENT this afternoon, and he said the tumor board does not feel that radiation is needed! This is super exciting news! My next follow-up appointment is in April and then another 3 months after that! I'm feeling very blessed today!

    Great News!

    Dan, this is great news! You are definitely blessed! Keep us updated on how things go. I am praying for you.

  • wbcgaruss
    wbcgaruss Member Posts: 2,275 Member
    #12
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    Dan Congratulations

    Less treatment is always better if possible. You avoid the effects of the treatment but especially you avoid the lifelong after-effects they can cause. I am glad they are on top of doing follow-ups to keep watch on your situation. Best Wishes-Take Care-God Bless-Russ

  • dan_the_man
    dan_the_man Member Posts: 6
    edited February 2021 #13
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    Thank you!

    Thank you LJ and Russ! It is definitely great news. My family and I are extremely relieved! I'm praying for all of you! 

  • Mikemetz
    Mikemetz Member Posts: 465 Member
    edited February 2021 #14
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    Dan_the_bullet_dodger

    Very glad to hear about your prognosis, and the fact that radiation will not be needed.  While chemo is no walk in the park, it's rads that can cause a number of severe and long-lasting side effects--a gift that keeps on giving, we like to say here.  YOur MEC also caught my attention.  Mine was MEC way back in 2009, and so little was known about it back then that the radiation oncologist just decided to treat it the same as a SCC tumor.

     

    Real kudos go out to your dentist, who prevented you from going from T1 to maybe T4.  I went to 3 different dentists over a stretch of 4-5 months, until one suggested I see an ENT, who found my tumor.  By then I was T4, and rads were necessary.

    mike

     

  • tommyodavey
    tommyodavey Member Posts: 727 Member
    #15
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    Good News

    As another MEC survivor I am glad yours turned out okay.  As long as there are clear margins radiation is not always necessary.  It's great you caught it early.  Congrats!

  • motorcycleguy
    motorcycleguy Member Posts: 478 Member
    edited February 2021 #16
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    Dan,

    GREAT NEWS!

    It sounds like you should get through any follow up, fairly easily; I'm happy for you!

    mg

  • MECsupport
    MECsupport Member Posts: 3
    edited February 2021 #17
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    On the same (unlucky) boat

    Hi Dan, I was also recently diagnosed with MEC. I am 33 and it came as a total shock. Have never even broken a bone in my life! I noticed a lump behind my ear in Sept. My PCP thought it was just an infection and I took some antibiotics. The small little bump evolved into something more jelly like and then hardened eventually. That's when I went to an ENT in Nov. He thought the worse case scenario was a benign tumor and was reluctant to do a biopsy. But my friend, who is now my medical oncologist, insisted on a biopsy and I was diagnosed with stage 4 low grade MEC. 

    I am about 6 weeks out of surgery. My surgeon is very insistent that I don't need radiation since it's low grade. 4 lymphnodes also came out positive but he says the mass was very small. I went to see a radiation oncologist who says I MUST get radiation. Their pathology report shows my MEC is intermediate and not low grade. Rad onc says my risk of recurrence is at 30-40% without radiation and around 15% with radiation. My oncologist surgeon thinks my risk of recurrence is less than 5%, which is why he thinks imaging and close monitoring is the way to go. He says because I'm so young, I am risking diminishing my quality of life for a very long time. I am now trying to decide whether or not I should go for radiation, but keep feeling like there's no right answer here...

    Glad to have stumbled on this group though! Every bit of info/advice will help. Thanks

  • tommyodavey
    tommyodavey Member Posts: 727 Member
    edited March 2021 #18
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    MEC

    I had MEC base of tongue and also had clear margins.  Both my doctor and rad onc said it would be best to be sure they get all of it.  In my case they gave me low dose rads. 25 sessions at about 5700 gys.  Not exactly sure of the numbers as it was awhile ago.

    So far no side effects after 8 years since treatment.  Do what you think is best.

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