Microcystic Adnexal Carcinoma???

I'm the wife/caretaker of a wonderful man who was diagnosed with carcinoma in his face on June 28, 2016. To make a long story short, after his surgery on August 1, 2016, the cancer was finally diagnosed as Microcystic Adnexal Carcinoma (MAC). His surgery involved a right orbital exenteration, partial maxilectomy, removal of some sinuses, removal of 40 lymph nodes in his neck, & biopsy of his right parotid gland. There was lots of perineural invasion, but the cancer had not invaded the bone. A second surgery was performed on August 8 to "clean up" the wound area & implant 4 titanium posts (pins?) that will eventually hold a prosthetic "eye/side of face". That won't happen for another 6 months or so, as the wound must be completely healed so it won't change shape/size after the prosthetic is made.

He's also been through 30 rounds of radiation since his surgery, daily wound care by me, 3/week wound care at the hospital with ultrasonic mist, acupuncture for dry mouth, other integrated therapies, counseling (continuing), just started allografts to try to get tissue to grow over the exposed bone (skull base), & now we're hoping to get him approved for hyperbaric chamber treatments to aid in healing. His doctors are concerned about the exposed bone because not only does it pose a risk for infection, it's also quite thin. They had to scrape it to get clean margins during surgery & made sure there was no CSF leakage at that time, but debridement now would be very risky.

My husband made the decision to leave the wound open (rather than having a flap from his thigh sewn on to cover it). We all felt that considering the inclination of head & neck cancers to recur, & especially how long it took to identify this one, an open wound will allow for much easier monitoring. Neither of us realized the extent & duration of this complete change in our lives. 

He's gone from working up to 60 hours a week, driving a semi at night over multiple mountain passes in all kinds of weather, to being unable to work at all. His treatments keep us traveling from one hospital to another (& one town to another) almost daily. His energy level still hasn't rebounded, even though his radiation treatments ended on October 31 -- 2 1/2 months ago. He has head "pain", "wooziness" upon standing, still has dry mouth (although acupuncture helps tremendously), gains weight back only to lose it again, has a sensitive stomach, & has memory & cognitive thinking issues which seem to be getting worse (at least to us).

Needless to say, I'm also worried, stressed out, & exhausted. My biggest fear right now is that some of the cancer cells may have escaped the radiation, resulting in invasion into the brain. Even though "negative margins" were achieved in the surgery (a miracle, considering the size of the tumor!), "skip lesions" along nerves are possible.

Praying I'm just being a paranoid wife/caretaker & that this MAC is completely & permanently exiled from my dear husband's body!! Any help out there???


  • AussieNana
    AussieNana Member Posts: 3
    edited January 2018 #2

    I'm so sorry to hear about your husband's horrible problems and complications. You are a brave woman. I found out a lump in my mid-back was a MAC and had it cut out, then the rest surgically removed, with a flap from below the area stretched up and over the hole that was too big to stitch. I've now had 3 of 30 radiation treatments and am waiting to see what happens. I hope things get better for your husband and you soon.  You are not alone.