Friday, December 14, 2012

Misconceptions In Melaland & What To Do About Them

The misconceptions kinda revolve around a big preconception--which is wrong--and that is that melanoma can be cut out, give a big high five to the doctor, pay the bill, and all will be well when the stitches are removed. After all, it is just skin cancer! Right?! No big deal. The only time you really have to worry is if you get staged in the 3-4 range. As long as it's less than 3, noooooooooooo biggie!

And heads in melaland shake in dismay and disbelief.

People with stage 2 melanoma know very real fears and concerns. And folks can understand that. I mean, they are right under stage 3...so, we'll give them that. But not too much. (And I'm using my sarcastic voice and imitating those that just don't get it). The reality is that people with a stage 2 diagnosis have well-grounded fears which are heightened by the fact that, usually, doctors don't do scans for stage 2s, though some do. People with a stage 2 diagnosis get it. They know their reality even if the people around them do not.

Frankly, it's the people with stage 0 and stage 1 diagnoses that concern me. So often, they themselves don't get the seriousness of this diagnosis. They can fall victim to the idea that it has been cut out and they're OK now. They may even use the "cure" word. The medical profession does absolutely nothing proactive for stage 0s and 1s like scans. Some of the lesser-informed in the medical world can, also, throw around the "cure" word.

And, truthfully, many will heal and be OK. They'll never have another melanoma to deal with. Some will continue to have more places on their skin that have to be removed...some of these will be more melanomas, some will be other skin cancers, some will be nothing. They aren't "cured" because there is no cure for melanoma and also, because it can come back. And come back stage 4.

Yes. Stage 0 and stage 1 can come back stage 4. It can take decades, or, it can take months. I'm seeing it. I'm hearing the stories. Granted, I'm seeing and hearing only a very small tip of a gigantic iceberg, but experience has taught me that where there is one, there are more. Where there are a few, there are many. While I, personally, know of one person whose stage 0, zero, melanoma roared back stage 4 in a short matter of time...that means there are others around the world this is happening to. It happens. People who have been diagnosed with stage 0 melanoma, do not let your guard down.

While I personally know of around 10 people whose stage 1, one, melanoma roared back stage 4 (some it took a while and some it didn't)...that means there are many more around the world this is happening to. It happens. People who have been diagnosed with stage 1 melanoma, do not let your guard down.

These are people that I know their stories. There are hundreds of people I come in contact with, dealing with melanoma, and I don't know their stories.

My issue is, if I'm seeing it, why isn't the medical profession seeing it and taking better, more proactive steps with their patients with stage 0 and stage 1 melanoma? Why aren't insurance companies insisting on scans immediately upon any diagnosis? Melanoma is far easier and cheaper to treat the earlier it is caught. Once it hits stage 4, it's a nightmare of monumental proportion...much of which may have been prevented if better standards were in place.

Standard number one should be: upon any melanoma diagnosis, of any stage, by any doctor...refer patient immediately to the nearest melanoma specialist. ASAP means ASAP!

Standard number two should be: melanoma specialist has full-body scans ordered for the patient, regardless of stage. Full-body means full-body...not just chest x-rays or brain scans. Perform every year or two...I'll let the patient and doctor confer on that one. But the minimum standard will be every two years. This is a disease that must be stayed on top of. That's imperative.

Standard number three should be: deciding on a uniform practice of what to do about lymph nodes when one or more light up the screen. Remove some or all? Ugh!  Doctors in the same facility can differ on that one. Needless to say, doctors around the world differ. My personal preference is to remove them all. Don't leave behind any nodes where that renegade cell may be hiding. It won't completely remove all chances of "no return," but it sure is a good start.

Standard number four would be: burning ALL tanning beds in home, office, business, you name it.

Standard number five would be: full-body skin checks, done by skin cancer specialist dermatologists once a year for people with no history of skin cancer, and twice a year for people with a history. During these visits the doctors will inform their patients of safe-sun practices for them and their children.

Standard number six: drop "just" from the name of any skin cancer. Skin cancer is cancer. You can't cut it out and be fine. Having one increases the chances of having any of the others. All are scarring and disfiguring. And, newsflash, though melanoma is considered to be "skin cancer" (which I strongly object and have blogged about...search this site for those posts)...it is not the only one that is potentially fatal. Not to mention the fact that there are links to melanoma and breast cancer, and melanoma and pancreatic cancer, and melanoma and other cancers. Established links.

Standard number seven: love the skin you're in. Don't tan it, bleach it, bake it, or broil it. Take care of it. Be good to it and it should be good to you. Though there are no guarantees.

Standard number eight: learn there are no standards when it comes to melanoma. It behaves differently in everybody. It doesn't care who you are, how old you are, what skin color you have, or what gender you are. It is an equal opportunity cancer. It can be fatal. If "melanoma" has been attached to you, know your enemy, know your God, and get support. Stay vigilant. Start getting your children's skin checked by a melanoma specialist dermatologist...they now have this disease in their family history.

Standard number nine: don't let melanoma define you. You define melanoma. Live your life and love it. You have cancer. Don't let it have you. Learn what's important and what isn't. Love the ones that matter and let go of toxic people. Forgive, move on, take time to smell the roses and let the thorns teach you. Life is good. Life is a gift. Life is short. Life has purpose and you have meaning.

Standard number ten: Pray. Draw near to God and God will draw near to you. Be blessed and be a blessing.

charis

16 comments:

  1. Great post Bossy. As many of you know, Jillian was diagnosed with stage 2, and after a PET scan that her dear surgeon, yes, surgeon,ordered one year later,it was discovered that she was Stage IV. Because of that scan, we have been blessed to have her with us for two more years. We are cherishing the time she has left with us.I pray with all my heart that those with any stage of melanoma take it deadly seriously.

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    1. I wish we could get the ear of those in the medical profession who could make it happen. Glad Jillian's surgeon ordered that scan!

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  2. Jeff was diagnosed with melanoma in 2004...no stage identified. We assume stage 1. No scans followed...only skin checks and blood work. He met the 97% survival rate after 5 years...he never quite made it to 6 years as he was diagnosed stage 4 with no warning. He was gone 3 months later. I always wonder, "What if he had been scanned regularly?" Great post Rev!

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    1. I didn't realize, Al. Wow. You'd think by now that the medical profession would have caught on and be doing those scans. How many more have to die? And, yes, that does sound like a potential blog post...for somebody...or two...

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  3. When it comes back from a stage 0 to a 4 what happens? Is it another mole? Is it an internal thing where you feel something is wrong? I was diagnosed stage 0 and all I get are skin checks. I wish they would have scanned me, but they didn't. This diagnosis has had terrible affect on me

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    1. Penny, stage 4, no matter what stage it advances from...stage 4 always means it has spread into an internal organ. That's what's so scary about melanoma and why ALL stages should be scanned. It can happen and does, that stage 0, 1, and 2 can spread to 4. Not often, but when you're the person it happens to, and it might have been caught earlier...well, those scans can make a huge difference in a person's life.

      Right now, no one that I've heard of scans 0 and 1 patients and few scan 2s. That needs to change.

      Remember that not all surface melanoma presents in moles. So don't just watch for those changes. Prayerfully, you'll never have any more melanoma. You are at increased risk, though for basal cell and squamous cell skin cancer because of your melanoma diagnosis.

      Also, make SURE you are under the care of a melanoma specialist dermatologist. Not all are. Make sure you get full-body checks twice a year and "full body" means "full body". When were you diagnosed and where do you go?

      If you're on Facebook, please feel free to connect with me at Melanoma Prayer Center. This way is good too.
      Blessings and prayers...

      Grace and peace,
      Carol

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  4. My doctors seem to take my melanoma seriously - as far as follow up visits and exams. Yet I too am left wondering why not more? My melanoma was found early - and I am diligent about seeing my dermatologist regularly, but when I read stories of how someone is diagnosed with stage 1 and then down the road it comes back stage 3 or 4 - it does make me wonder . . . why wait? And it makes me worry. I have an enlarged lymph node which my oncologist is taking serious because of my melanoma, yet I am not completely comfortable with the, "come back in three months and if it still there we will biopsy it then." (because right now it isn't the size where they automatically do the biopsy). I think the scariest thing for me is always wondering . . . will it come back? It has been about a year now since I had surgery - but it seems like it is always somewhere in my thoughts.
    Love standard #9 - God and prayers is what helps me.
    Bless you!

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    1. I understand that! There is a "size" they wait for because it does biopsy better. I wish doctors would understand what that attitude does to us though. Are you seeing a melanoma specialist? If not, please get your records and make an appt for a second opinion. If you are, wait your 3 months, but keep a DAILY check on that swollen node. And get someone who shares your household, or good trusted someone if you live alone, to also feel it daily...same person to palpitate it each day. If you ever feel that thing getting ever so slightly bigger during that 3 months, call and insist on being seen asap. In the grand scheme of things, 3 months isn't too terrible. If he had said 6, I'd slap him for you :).

      The medical profession really does need a better understanding of what this diagnosis does to us.

      Blessings and let me know what happens. Prayers.
      And, please, if you're on Facebook, connect with me and a great support system at Melanoma Prayer Center.

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  5. I'm stage II and have been NED for two years now. I get scans every 6 months. Insurance will not pay for PET/CT, but they will pay for CT scans(head,neck,chest,abdomin ,pelvis). My oncologist will continue to order as long I want them. My doctors were very aggressive with my treatment. I feel very fortunate to have the doctors that I have. Considering all the stories that I read about.

    Scot

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    1. The next time you see your drs...give them hug for me and tell them "thank you" from a fan. You are truly blessed, Scot. I wish they could get their colleagues to follow suit.

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  6. In-situ stage in December 2004 to stage 2A in April of 2007. Onward to stage 4 in my right lung in December 2009. Never was stage 3! Melanoma is a disease of the blood. I see a hematologist melanoma specialist. Hematology studies diseases of the blood not skin! Of course melanoma can begin on the skin but I have talked to people who never had a skin lesion or the lesion was never found. It makes me wonder if there are different kinds of melanoma. Thank you for speaking up in a forceful good way! Rebecca

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    1. Hi Rebecca! I think there's so much to learn about this disease...there may well be different kinds of melanoma. I know we know that it's different in everyone who has it. I just wish we could get the attention of doctors and insurance companies. I mean, seriously, WE know these things...surely THEY do, so why aren't they acting on what they know? It could be any of them one day!
      Quick! Kick my soapbox out from under me! Blessings!

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  7. My husband was diagnosed stage1 March 2012. A wide local excision was done and lymph nodes removed in his armpit and groin. No other scans were done until April 2013. He was diagnosed stage IV in May. He earned his wings November 22, 2013. If we only knew then what we know now

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    1. How horrible, Kimberly! I am so, so very sorry! Prayers for you and for your family as you move forward.

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  8. Great post thank you. I too get very upset when I tell others I had Melanoma I get either isn’t that an old peoples disease or don’t you just get it cut out . There is not enough people educated and that is why we all feel so alone others think we are being dramatic unless it has actually affected them some how. I love my Melanoma family and how we all work together for the same outcome ..

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    1. I hear you, Barbara! We've got our work cut out for us, but we're up to it. I love us, too. Blessings!

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Thank you.