I've written many times before, in various posts, my strong belief that people of ALL stages should be scanned at least once a year in an effort to stay on top of their melanoma. If I ruled melanoma world, this would surely happen. Alas. I don't rule melanoma world, or any world for that matter. But, I'm not without a little bit of influence. Which I'm going to use.
I feel a very strong, stepped-up sense of urgency to press all my melahomies, no matter where along the staging spectrum they reside, to demand to be scanned. There are a variety of options that I will leave to each to discuss with their doctor...a melanoma specialist (here's Aim at Melanoma's link to a list of melanoma specialist oncologists. Where you find them you will also find dermatologists and surgical oncologists who are melanoma and skin cancer specialists).
Decide on MRI, CT scan, PET scan, CT/PET scan, x-rays...whatever you and your doctor are comfortable with. Prepare to be your own best advocate and prepare to push for what YOU need to stay on top of this disease and for YOUR peace of mind.You may have to push your doctor. You may have to get another doctor (make sure any doctor is a melanoma specialist and understand they will not all agree. Just because ONE doctor tells you something doesn't mean ALL doctors you see will tell you the exact same thing!) You may have to do battle with your insurance company. You may have to do battle with them every single time your doctor orders scans. OK. While this stinks and isn't how it should be, if this is how it is...do battle. And, if your doctor HAS ordered scans and they are denied, enlist your doctor's office to help you with your insurance company. They/the hospital should have someone on staff trained for this. Use them!
OK. A word to doctors. I'm learning that some of you...not all of you, and for those who scan, I am truly grateful but you are few in number when it comes to scanning stage 2 melahomies and under...some of you...many of you refuse to scan my lower staged melahomies. You, of all people should have a basic understanding of this disease and how it works and that it has NO MO. None. Zilch. Nada. You know people with in situ (stage 0) melanoma can be stage 4 in a matter of months, years, or never. You know that the ONLY way to be sure of what melanoma is, or is not, doing is with a scan. You know the information that is learned with scans. You understand that more scans will call more attention to this dangerous disease. Help us call more attention to it! UGH! For crying out loud, order a yearly scan...your and your patient's choice of monitoring this way, but DO IT. Give my melahomey and your patient...this person who is trusting YOU with their LIFE this much, this peace of mind, this ray of hope.
Frankly, I am beyond dismayed by many doctors. Melanoma specialists at that. I am hearing from too many mamas who have buried their children that their child's DOCTOR was the person who would not order scans. Even when begged. It doesn't just sadden me; it sickens me. These young people were stage 2 and feared spread. And it did spread and it killed and scans were ordered too late. I'm hearing this from spouses who have buried their better half because scans were finally ordered too late. You do know what happens to us when you order scans too late, don't you? Please, please, please, the minute you get a patient with a melanoma diagnosis over their head, get them scanned and scan every year. At least sit your patient down and discuss all scan options with them and if they do not want an annual scan, fine. Make them sign a waiver that you told them and they refused. But at least give them an informed option. Too many aren't even given an option.
Remember doctors, whether you provide scans for ALL patients or not...this melanoma is not YOUR melanoma and unless you live with your own diagnosis, you do not and cannot possibly understand what living with this disease does to us. It is your job to help and do no harm. That's what you swore to do. Do your job. Do no harm. Help. Scan.
And now, insurance companies. I know you've got rules and guidelines. I know our local agents have to do what they're told. I don't know what it will take but I'm telling my melahomies to fight you tooth and nail if they have to in order to get the scans their doctors order and that you all too often deny. Really now, all companies and corporate entities are made up of real-life, flesh and blood people. Get in touch with your inner humanity and stand with us instead of against us. For those of you who DO pay for scans and do it without questioning and making us fight...BLESS YOU! Help us with your fellow insuring companies.
It makes good business sense and will save you money in the long run to pay for our scans upfront. I know the rate of biopsies is rising. And I know the rates of scans will rise. That's the nature of this disease right now. Until people listen and make life changes, our rates will rise. But, eventually those rates will come down. Right now, we're in a rise. So rise with us. You know all to well how costly this disease is once it hits stage 4. It will be far cheaper to pay for scans NOW and catch much disease early, than to let it go unmonitored accurately and let it get out of control in some people and them enter into stage 4. I'm hearing from far too many who are scared because you're denying their doctor ordered scans. Get educated about melanoma.
And...learn from our fellow cancer road travelers who have colon cancer. While melanoma is rising, colon cancer is on the decline! Hallelujah and praise the Lord! Why the 30% decrease in colon cancer rates, you may ask? Because more people than ever before are getting colonoscopies as a preventative measure and precancerous lesions are caught and removed EARLY! Polyps that are cancerous are caught and removed while they're tiny before they become huge problems.
Over 10 MILLION people a year get colonoscopies and you pay for those and now everyone is reaping the benefits! Yes, many more millions than that get scans each year, but only a small percentage are related to melanoma.
We want to reap benefits, too. You can make that happen. And I'll tell you like I told the doctors. Unless you have your own melanoma diagnosis, of any stage, as part of your life, you do not and cannot possibly know what this disease does to us. Want more cost benefits? If you pay for annual scans regardless of stage...you will be able to stop paying for some to take anxiety meds and anti-depressants. Many take those because of what living with this diagnosis does to their nerves. You'll get to stop paying for some to see therapists to help them cope. Being able to get scanned and knowing they are staying more on top of this disease will help in more ways than you can possibly imagine.
I'm hoping and praying that more and more of my fellow travelers on melanoma road will make themselves heard, will advocate for themselves and for their loved ones, and really start to demand proper treatment at all levels and that starts with demanding scanning.
If more and more make those demands, more and more will see results.
But we can only do so much. We can demand.
Will you hear?
Will you help?
Or will you harm and possibly kill?
Please. Stand with us.
We're counting on you.
Remember...one day YOU may hear that YOU'VE got melanoma or that your spouse or your child does or your parent or your sibling...then what? Will you or they have to live with the same rule you've imposed on us? I strongly doubt it.
You'll get it then because you will have gotten it.
Make a difference NOW. Before that happens.
Thank you. I really Do want to rise up and call you "blessed."
charis
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