MAC is not a computer!

Debbysue
Debbysue Member Posts: 16 Member

Microcystic Adnexal Carcinoma -- Is there anyone else out there who's been affected by this? Would love to chat!! 

My husband had major surgery to remove this from his face in 8/16. Followed by radiation, ultrasound mist, & now hyperbaric oxygen (due to exposed skull base bone not healing over yet.) Should we be concerned about his brain? He does have some mental changes, but maybe I'm just being paranoid?

Comments

  • AussieNana
    AussieNana Member Posts: 6 Member
    edited January 2018 #2
    MAC

    Hi, I just found out I have this, but it is in the middle of my back. My doctor cut it out, then I had surgery (with a skin graft) to get any remaining cancer and now I've just had my third of 30 radiology treatments. I hope your husband is better now?

  • suechase
    suechase Member Posts: 4 Member

    I’ve been searching for at least one other person in the world that was diagnosed with M.A.C. ( I was told I’m among the very small number in the country) October of 2022 I underwent 4 treatments of MOHS then next day my first of 3 reconstruction surgeries,on my face. I still haven’t found as of February 2024 anyone to talk to I FEEL SO ALONE ( medical personnel can’t answer any of my worries) cause it’s such a rare cancer

  • suechase
    suechase Member Posts: 4 Member

    Why did you have radiation? I was told MAC doesn’t respond to radiation or chemo

  • AussieNana
    AussieNana Member Posts: 6 Member

    That's what the oncologist directed to make sure they got all the cancer. Maybe they've learned more in the years since then?

  • Debbysue
    Debbysue Member Posts: 16 Member

    Hi AussieNana! I can't believe I stopped checking for replies to my post after only 8-9 months! I just now found yours. Thank the Lord, my husband is still cancer-free as of his last scan almost a year ago! He has adjusted well to his "new normal", as we call it, but it obviously still impacts his self-esteem. I hope you are doing well and have not had any recurrences?!

  • Debbysue
    Debbysue Member Posts: 16 Member

    Dear suechase, it appears you've found 2! Today is the first time I've found anyone but my husband who's had this! He'll be happy to hear he's not alone in the world too!! Where was it on your face? I'm glad they could get it with MOHS! John's had grown through the (I think) trigeminal nerve root from just beside his nose and was attached to his right eye, pulling it out of alignment. We were blessed to be referred to a neurosurgeon who had actually dealt with MAC before. The pathologists weren't sure exactly what it was. After John's surgery, when they had the entire "tumor", they confirmed it was MAC. How great they did reconstructive surgery for you! You are NOT alone. We are here for you! How can we help?

  • Debbysue
    Debbysue Member Posts: 16 Member

    Rare is right! Most PCPs haven't even heard of it. In 2016 I found only 48 cases mentioned online -- EVER!! The good news is it very seldom recurs. If it does, it's most likely in the same area. I have yet to find an instance of metastasis or death. John was 51yo at surgery, and his doc has told him he'll have a normal lifespan, and that he "may die WITH it, but you won't die FROM it." John did radiation for 30(?) days as a precaution because the "tumor" had "fingered out" so close to his brain. The radiologist and physicists took extreme care to save his sight in his left eye and his teeth. All are good to this day! He did start having weird, sudden headaches about a year ago, but so far they're not an issue. They usually go away within a few minutes. The surgery took his right eye, cheek (to the nose), 42 lymph nodes in his neck, and it can't be reconstructed. He may get a flap at some point, but he left it open so we could see any new cancer. (it was VERY hard to detect except through biopsy.) You'll be glad for your reconstruction! Sending light and love your way! I'll check back here daily, and if you want to chat with one of us, we're here for you!

  • suechase
    suechase Member Posts: 4 Member

    Debbie sue My Emotions are on the roller coaster of a ride since reading your message; I do promise to get back to you ( when I can see thr my tears ) BLESS YOU FOR ANSWERING, ITS CLOSE TO BED NOW BUT I DO PROMISE TO GET BACK TO YOU

  • AussieNana
    AussieNana Member Posts: 6 Member

    DebbySue, no recurrence, thankfully. The cancer clinic did 3 monthly, then 6 monthly, then annual check-ups and scans for 5 years and just dismissed me in December. What country are you in? I'm in Australia and being on Age Pension, the whole ordeal - surgery, radiation, scans - cost me ZERO! I can't believe it AND I can't imagine someone having to pay those thousands and thousands of dollars.

    It IS wonderful to find someone else who has had a MAC. When my wise doctor took a biopsy - "just in case" - we didn't get an answer for weeks because they had to send it off to Sydney before anyone could identify it! Crazy stuff. I wonder if there is any trauma in your background? I lived with domestic violence and mental abuse for 40 years and have had other strange symptoms - like my whole torso going numb for a couple months - that all the tests in the world could find no cause for. The book "The Body Keeps the Score" is insightful concerning health and abuse issues. Anyway, just a thought.

  • AussieNana
    AussieNana Member Posts: 6 Member

    Sorry, I'm unfamiliar with MOHS. What does it stand for, please?

  • Debbysue
    Debbysue Member Posts: 16 Member

    Dear suechase, I hope your emotions and imagination are doing better by now. Believe me, WE GET IT!! I read your messages to my hubby (John), and he was SO GLAD to hear from someone else who has had this sneaky, disfiguring --- but thankfully curable! --- cancer. He wanted you to know that even though he still has times when he worries that it may have returned, those frights become fewer and farther in-between as time goes on. He is still 100% cancer-free after 7 1/2 years, and says he rarely gives a thought to his face and 'new normal' routine anymore. The same is true for me, our families, and all of our friends. He is simply John. The same handsome, spiritual, witty, ornery, loving guy we all came to know and love. I'm sure your situation will be much the same. Those who love us--and new friends who come to love us-- see who we ARE inside, and that overcomes all.

    Where do you live? We are in western Colorado, USA. We would love to hear more about you when you're ready to share! Hang in there!! This part of life gets easier, I promise. And the rest of life gets better at the most unexpected (and expected) moments!

    Thinking of you,

    Debbysue

  • Debbysue
    Debbysue Member Posts: 16 Member

    I helped out a friend who's had this done several times; the largest surgery was on her leg. I took care of her Yorkie 2-3 times a day while she healed, as she couldn't put any weight on her leg for a couple of weeks. It was melanoma, but she's been healthy as a horse in the years since! It must be pretty effective! 😊

  • Debbysue
    Debbysue Member Posts: 16 Member

    We're in western Colorado, USA and were very lucky financially with my hubby's surgery too. The company he worked for (he's now retired and on disability due to the loss of his eye and therefore not eligible to do his job anymore) was wonderful to him AND had a terrific health insurance program that covered the vast majority of the bills. John has been cancer-free for 7 1/2 years now, and is looking forward to a long life of riding his motorized "toys" well into his 80s, when he swears he'll go either on his motorcycle or snowmobile -- climbing a mountain and having a heart attack on the way back down! (I absolutely HATE it every time he tells me this, but I'll be in my 90s by then with dementia, so.....🙄🥴)

    Interesting that you've had lots of trauma in your past too! John had a lot of physical and emotional abuse as a child and teenager, and also had to deal with his mom's mental illness on his own. I went through an abusive childhood too, but nothing like what he did. It's so ironic that we survivors tend to gravitate toward one another, isn't it? And I've often wondered how much those childhood traumas and illnesses relate to our adult physical maladies. Cancers, digestive disorders, fibromyalgia (my main thing), heart diseases, arthritis, etc. For instance, I know of several other people with fibromyalgia who had every childhood illness that came around and also rheumatic fever -- just like I did (twice). Perhaps someday scientists will discover a link between something in our childhoods that gives us a greater chance of getting cancer and discover a way to reverse that!

    But for right now, I've ordered the book you recommended but haven't downloaded it yet. I hope to be able to just take a whole day and read the entire thing at once. (I tend to retain more info that way.)

    That's baffling that you whole torso went numb. Especially for that long! I can't imagine how weird that must have felt! I hope you're doing well now! Would love to hear from you again!

    Debbysue