This is going to be awkward, let me admit to that right upfront. This is one I wish I didn't feel compelled to write, but do. Let me begin by stating that I'm from a "medical" family. My Daddy is a retired dentist. My husband and daughter are both pharmacists as is a brother-in-law, as was my father-in-law and his uncle before him. I have a great medical team. I've always had great medical/dental care. From the moment I first presented my mole to a PA at a Duke Urgent Care for removal, I've been in the Duke system and under the care of melanoma specialists: dermatologist, surgical oncologist, and if ever needed an oncologist (whom I've met a couple of times but, as yet, have not needed the services of. But she's there and has my file if I ever need her).
I've been aware, all my life (well, since I was old enough to actually be aware of this), that not everyone has great medical care, even adequate care. I wish that wasn't the case, but we all know it is. In the world of melanoma I find myself constantly asking people if they are in the care of melanoma specialists as that is crucial. Even then not all specialists are created equal. Some are better than others. Aim At Melanoma has a great tool for finding an oncologist that specializes in melanoma. This list is just for oncologists, but generally, where you find them you'll also find melanoma specialist dermatologists and surgical oncologists.
I am also aware that before we ever get to a specialist, we are diagnosed, usually, by either a dermatologist or primary care physician. Again, some are better than others and all are not created equal. The minute they say the word "melanoma" the next words out of their mouth should be, "Let's get you into the hands of Dr. So-and-So, the best melanoma specialist in our area." In an ideal world that is always said! That ideal world does exist in some places, as I, myself, live there. When I received my diagnosis, in a voice-mail from the doctor at the Urgent Care, after he said my mole had melanoma in it, he said, "I've made you an appointment with a Duke oncologist to see what we're dealing with." That Duke oncologist turned out to be the top melanoma specialist at Duke.
People, there are standards of care when it comes to melanoma. Particularly read this page. You'll see what to expect overall and by stage. This is what to expect. Period. If this isn't happening to you then you've got the wrong doctor. Get referred to another one, even if you are seeing a "melanoma specialist." Remember, not all are created equal.
Now for the awkward part. I'm becoming increasingly aware of sheer ignorance on the part of some in the medical profession when it comes to melanoma. Maybe it's arrogance on the part of some as they may not like to admit they don't know what to do. Maybe it's sheer negligence. Whatever it is, if you have been diagnosed with melanoma, at any stage, and your care does NOT line up with the standards as found at the National Cancer Institute (the two links in the above paragraph) then your life depends on you getting out from under the care of your present doctor that is treating you for melanoma. That simple.
And document what your "care" has been as you may have grounds for a medical malpractice claim. I'm learning of some very alarming practices when it comes to the treatment of melanoma, and not from already questionable clinics and programs. I'm talking about doctors whom their patients trust. When we are given that diagnosis we're stunned to say the least and it's a natural reaction to trust, automatically, the doctor who gives that diagnosis. We already believe our best interests are at heart and we'll do whatever we're told. Often without stopping to think or question.
Thinking and questioning are vital activities! If something doesn't make sense, it may be stupid or even fatal to follow blindly and do as told. You are your own best advocate, maybe even your only advocate, and it's up to you to open your mouth and ask questions. It's up to you to insist on seeing a specialist and it's up to you to demand that second, or third, opinion if you want to.
It's up to you to know the "Doctor's Duty Of Care." This is what to expect from your doctor, any doctor, about any reason to have a doctor. This must be coupled with the melanoma standards of care. If you become aware that your doctor may not have lived up to the standards then this will help you know if you're possibly the victim of negligence. Also, be sure to check the laws in your particular state, especially when it may come to statutes of limitations.
Melanoma is something of a "take charge" disease. Take charge of it or it will surely take charge of you. If it has already spread to at least one lymph node then it is already somewhere in the stage 3 spectrum. If it has spread to at least one vital organ then it is already somewhere in the stage 4 spectrum. It is beneath the body surface and requires being treated as such. If it has not spread to lymph nodes or organs then it is somewhere in the 0-2 spectrum. All must be staged accurately and all must be treated stage appropriately. Not all doctors are able to do that, unfortunately. God bless those that can and do and they're in the majority. Most of us have nothing to worry about when it comes to our standard of care.
Some of us do though and I hope this has proved helpful and provided food for thought and information to set you on the right path.
Word to the wise: if, after reading this and the links within, you have a sick gut feeling that you're not being treated as you should be, take action immediately. ASAP means ASAP. With melanoma you don't have time to sit and worry or cry. Use the Aim At Melanoma Find A Doctor link and do just that. Find a doctor. Call the office, explain your situation and make an appointment for as absolutely soon as possible. Be your own advocate and don't be put off for even a month if at all possible. If you can't be worked in within a week, ask to speak to the next person higher on the ladder and keep climbing that ladder as long as you have to until you talk with someone who will get you in ASAP to see what's going on with you and get you on the right course. Melanoma, if it's in your body, isn't going to wait nicely. It's active and growing.
And that's damn scary. I know. But it's also the truth. It's not going to play around and neither will I.
Somebody's got to be honest with you and give you a fighting chance. And if that person is me, well, then...
I'm grateful for the opportunity. Let whosoever has ears to hear, listen.
My husband had an initial biopsy done by a primary care physician in 2002 with a diagnosis of in-situ melanoma. Then facial surgery a few weeks later with a plastic surgeon got clean margins. He was told to follow-up with a dermatologist every 6-12 months for mole checks. He did that and sometimes even walked out of the office several times looking like a piece of swiss cheese. Everything always came back normal or dysplastic but nothing to worry about. Then speed up to 2011 when he had a horrendous headache and was in an altered mental status. A few hours in the ER gave us the diagnosis of Stage IV Malignant Melanoma. We were referred to a local oncologist who also worked in conjunction with the Univ. of Wisconsin. We met the Melanoma specialist at UW and was not impressed. We met with another physician who was a Melanoma specialist (and he was like night and day to the other one) at Northwestern University; we really liked him. My husband wanted to give a clinical trial a shot at University of Michigan with another Melanoma specialist, although my husband needed another biopsy done first. There was not enough tissue sample from the initial biopsy after 3 doctors looked at them. So we saw the original local oncologist to get the biopsy done locally and she said unequivocally "no" to the biopsy. My husband had "wasted a lot of time and he needed to start treatment and start it now." He said ok and I broke down crying. This was because he and I had a very clear agreement that we were going the Michigan route if he qualified for the clinical trial or the Northwestern way. My husband felt his local oncologist (who was not a melanoma specialist BTW) had his best interest in mind and we should stay (or as I put it - settle) with her. At that point I knew he was in charge of his care and although I had a degree in biology, he was a big boy and could make up his own mind and decisions. He proceeded to go thru 2 rounds of chemotherapy with lackluster results.
ReplyDeleteLater in August, when things were not going well (more tumors, present ones getting bigger), I put a call into the Mayo Clinic in Minnesota. They got him an appointment in less than 3 weeks (we even cancelled our trip to Hawaii for this) with their Melanoma specialist. This doctor impressed us and the doctor was equally impressed with my husband. He told us that there was a new drug just released from clinical trials (yes - the one and the same from Michigan - it was Zelboraf) and would he like that biopsy to see if he qualified. The next morning he had the biopsy and 2 weeks later the Mayo Clinic's doctor called to tell me my husband did qualify for the drug. The doctor asked if we wanted the script filled down in Illinois where we were and I said yes. The doctor asked if we would face any opposition from the local oncologist with getting the drug filled here and I basically replied "Heck yeah." He said he would handle the situation and not to worry. Once Zelboraf got into my husband's system, he never had another ounce of pain until pneumonia settled in 4 months later and he passed away 11 months to the day he was diagnosed.
The "intellectual bullying" (as I call it) the local oncologist did with my husband was not fair nor ethical. I will never forget that. Although he may not have been cured, he could have been on Zelboraf sooner and longer for a better quality of life and that would have meant the world to us.
Maureen
Missing WJH
Maureen, I'm so sorry you and Bill went through all that! Thank you for sharing. Prayers.
ReplyDeleteThank you, Carol. I apologize for getting wordy. But my intent was to agree with you - that it does matter who you seek medical opinions and treatment from. If nothing else, let my story teach someone what they should or shouldn't do or allow.
ReplyDeleteMaureen
Missing WJH
Don't you dare apologize for a thing, Maureen! You've got something to say, please say it. I'm here for you.
DeleteThis is such a scary story and also among the thousand of examples of medical mal practice. but now thanks to strict medical laws and increased people awareness.people are now very much aware about the rights they have.
ReplyDeleteI am in stage three and under the care of a plastic surgeon.HEtells me there is no prentive therapy for stage three melanoma and chemo doesn't do well with stage three.Iam scared because I FOUND a small black spot on my orignal cancer site that the tumor was removed in april.Ifear that he may not believe me because it is so small. Norah Pickard
ReplyDeleteNorah, with melanoma, any stage, but especially as we climb the ladder and hit stage 3...you need to be in the care of a melanoma specialist and not, not a plastic surgeon. Your medical records are yours and you are entitled to them. My advice: get them asap, and even if they won't release them, get yourself to your nearest facility with a specialist. These days, we usually don't need referrals. Aim at Melanoma has a great list to help you find a melanoma specialist oncologist. Where you find an oncologist, you should also find melanoma specialists dermatologists and surgical oncologists. Get out of the hands of this plastic surgeon asap. Your life depends on it. http://www.aimatmelanoma.org/en/aim-for-answers/path-to-getting-a-diagnosis/finding-the-right-doctor.html
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