Wednesday, March 20, 2013

Melanoma? GET A MELANOMA SPECIALIST! and keep reading

I just want to cry. But, that wouldn't accomplish a darn thing. So, I'm going to drag out my trusty soapbox, the extra large one with plenty of room to move about on, and preach. Sista's GOT to preach! I know I've got a fully-packed "Amen!" Corner, so this isn't for them. This is for two groups of people that need to hear this. First to certain doctors and then to melahomies who don't know but need to.

Doctors, first. Now, mind you, this isn't to all doctors. Only the ones who, for some unknown reason to me, will NOT refer their patients with melanoma to melanoma specialists! I don't get it, but I'm getting plenty of messages about it and I am ticked. Really ticked. I take my melahomies health and well-being very seriously. Why don't you? Doctors who DO refer, please back me up with your colleagues here.

Doctors, you know what your specialty is, if you have a specialty. You know if you are a melanoma specialist oncologist or if you are a general oncologist or if you are an oncologist who specializes in a cancer other than melanoma. YOU KNOW! Your patients, however, may NOT KNOW!!! Let's be frank. You're possibly killing them by not referring them. There are some general oncologists who are keeping up with the world of melanoma. Good. There are some oncologists who specialize in cancers other than melanoma who are keeping up with the world of melanoma. Good. If that's you and you can get your patients the treatments they NEED, if you have access to Yervoy and IL-2 and Zelboraf and anything else they may require...fine. But, if you DON'T and if you are NOT up on the world of melanoma, PLEASE, get your melanoma patients into the hands of a melanoma specialist!

Their very lives are at risk and depend on it! They are trusting you and the vast majority may not even know there IS such a doctor as a "melanoma specialist." They aren't asking you about referring them because they DON'T KNOW TO ASK! But YOU do!

To be fair, you may not know exactly who you need to refer them to. Let me help you out. Aim at Melanoma has a list of oncologists who are melanoma specialists. Where you find the mel spec oncs, you'll also find surgical oncologists and dermatologists who, also, specialize in melanoma.

But I'm going to level with you, I'm mad enough to spit nails. When something in the world of melanoma hits my desk twice in two days, that means it's happening A LOT, far more often than it should. Twice, in two days, so far this week and today is just Wednesday, I've heard from two different people with two different daddies in two different places...BOTH daddies have recently been diagnosed with stage 4 melanoma, one already has brain mets and the other man's has spread to his abdomen. Both men, upon further conversation with their children who contacted me, are in the hands of doctors who are not melanoma specialists! One is in the hands of an internist and an hematologist! The other is in the hands of a radiologist! I sent them the above link to Aim's list and you know what? And I am still livid over this one...one of these men is 45 (FORTY-FIVE) MINUTES away from a cancer center with a melanoma specialist...and the doctor he has entrusted his life and fight with has not only NOT told him this and NOT referred him, but his doctor has told him there is nothing left to do and sent him home to die.

I'm sure I'm not the only person who sees something seriously wrong with this picture!

By now, fellow melahomey, you see something wrong with this picture, too. So, now, let me talk with you. If you are being treated in a small, local hospital, more than likely you are not in the hands of a melanoma specialist. They are, generally, found in the much larger facilities with large cancer centers...but keep in mind...not ALL hospitals with "cancer centers" have a melanoma specialist on staff. Ask. Ask your doctor if he or she is a specialist in melanoma. Check Aim's list. Look up your hospital's website, search for your doctor and see what his or her listed specialty is. There may be a list of areas. If "melanoma" is not specifically listed, you are not in the hands of a specialist. It's just that simple. And you need to be. Your life, or the life of a loved one, depends on it.

If your doctor cannot get you or a loved one what you need, you are not where you need to be.

If your doctor sends you or a loved one home to die and says there's nothing left to do, you may not be where you need to be. True, this time will come to all of us, BUT, if you've been "given months" to live, live them getting a second opinion!

If you've been told your melanoma tumor(s) are in "impossible to reach" places and your surgeon won't try and your onc says there's nothing to do but wait to die, you may not be where you need to be. If that "impossible" surgery is what's standing between your life and your death, ask yourself, "What will I lose and what will I gain if I seek out a melanoma specialist who WILL operate?" Even if a melanoma specialist is the one who will not try the procedure...there is one, somewhere, who WILL! If your melanoma has reached this point, you're going to die if you don't seek out a surgeon who will take that chance...if you WANT that chance. Yes, you may still die from the surgery. But you know what? You might NOT! You might just get several more YEARS! I know people that can testify to that. It's up to you though, what you're willing to risk and try and what you aren't. Just know that you DO have options! You CAN get a second opinion. You just might add years to your life.

All right. I've said what I need to say. Don't make me come down there and say it again (insert annoying smiley face here).

I'll say it as often as I need to. Really.

I don't understand the doctor's mentality that will not refer a patient with melanoma to a melanoma specialist. That's the first thing that should be done immediately upon diagnosis. If I ruled Melanoma World, it would happen and insurance companies would insist on it and so would the AMA, WHO, and any other health organization with some clout. I was handed to Duke on a silver platter. If I had NOT been, I would be among the countless melahomies who don't know to ask about melanoma specialists. I know I would be. That scares me. That's a position no one should be in.

If you're reading this and you honestly don't know if you or your loved one with melanoma is in the hands of a specialist, follow the advice above. Send the link to this post to the people you know with melanoma and say, "Please read and make sure you're where you need to be."

I'm getting off my soapbox now. I know you're grateful!

Follow my advice and I'll be grateful, too!

charis!