Stage 1b- no scans

My husband had stage 2A in 2012 and clean lymph nodes. AS per protocol he was following with dermatologist every 4 month and had X-rays for the first two years.

In October of 2016 he had a seizure and was admitted to the hospital.

The MRI revealed multiple lesions in brain and CT scan showed several lesions in lungs. Very gloomy results. I am very upset with the existing protocols. If we would have the CT scan or /and MRI at least once a year – I am sure the leasions would be identified earlier.

We still have hopes. He had a surgery to remove the largest brain tumor and then Gamma Knife procedure. He is also started the immunotherapy recently – Keytruda.

My opinion is that protocols have to be changed.

You are most certainly not alone in wanting protocols changed. The dermatologist I see down at USC was talking about this same issue a few years ago. The difficulty is getting medical groups and insurance companies to agree to changes in the "standard of care". They never want to foot the bill for these things. Your husband's case sounds remarkably similar to mine… although I went without xrays at all, and my primary care physician was doing the skin checks vs. sending me to a dermatologist. I was 1a in June 2007… had regular skin checks every 6 months… suffered a seizure in April 2013. Brain and lung mets. I was otherwise in fabulous phsyical condition. Had noooooo idea what was lurking. I'm sure my insurance company could have saved themselves a boat load of money, had we caught this sooner… buuuuuuut… they've no had to cover 2 brain surgeries, a lung lobe removal, MEK inhibitors, Ipi, Keytruda, 10 rounds of Gamma, almost 4 years of brain MRI's and chest/ab/pelvis CT's… not to mention rheumatologist appointments and meds for side effects. I often wonder what their cost would be to cover the folks with early diagnosis… xray, CT, and MRI follow ups… versus what they have now spent and will FOR THE REST OF MY LIFE on life saving treatments for my… that "1 in a million" patient who slipped past the 95% "cure rate" of early diagnosis. I also wonder what it would cost them, if people could more reliably prove that the lack of diagnostic scanning led to disease progression (and in some cases, death). How many law suits would it take, to change their minds? Surely, someone in the insurance industry is keeping an eye on the numbers and out of pocket expenses. No matter how "caring" insurance companies pretend to be, they're not honestly around to help protect people… they're big business, and in the business of making money.

Ok… rant over… 😉  Best wishes to you and your hubs for much success with Keytruda! It turned out to be my magic bullet. 

My husband had stage 2A in 2012 and clean lymph nodes. AS per protocol he was following with dermatologist every 4 month and had X-rays for the first two years.

In October of 2016 he had a seizure and was admitted to the hospital.

The MRI revealed multiple lesions in brain and CT scan showed several lesions in lungs. Very gloomy results. I am very upset with the existing protocols. If we would have the CT scan or /and MRI at least once a year – I am sure the leasions would be identified earlier.

We still have hopes. He had a surgery to remove the largest brain tumor and then Gamma Knife procedure. He is also started the immunotherapy recently – Keytruda.

My opinion is that protocols have to be changed.

Scanning may find something earlier, but studies say it doesn't improve survival numbers.   So if you are stage IV and have small tumors or larger tumors, you are still stage IV and will probably respond the same to a treatment.  New treatments all the time and we can hope this changes.