Monday, May 28, 2012

If I Ruled Melanoma World

The first thing I'd do is make using the "c" word, cure, illegal to throw around carelessly and in an uninformed way. Especially for the medical establishment who ought to know better. The only time cure could be used in connection with melanoma is to say something like, "I'm working toward a cure". "I'm praying for a cure". "Support melanoma research for a cure." Until the actual Cure Day comes, to tell someone they are "cured" or "basically cured" of melanoma would be worthy of oh, I don't know, maybe a revocation of one's medical license. Really, how can a person be basically cured of anything? Much less something that currently has no cure?

Because of that, the second thing I would make a hard and fast rule is that anybody, once they are staged, at any stage along the spectrum, would get the scan(s) they need. Currently people with stages 1 and 2 melanoma aren't scanned. No MRIs, CTs, PETs, or PET/CTs. It can happen, but it's rare and usually deemed "unnecessary". It's a dangerous and deadly practice though and if insurance companies were half as smart as they think they are, they'd INSIST on those scans. It would prove highly cost-effective in the long run as melanoma is extremely expensive to treat the later the stages get to. To give someone a stage 1 or 2 diagnosis and NOT scan is totally irresponsible. Melanoma plays on our nerves and stress levels as it is and that's WITH scans. I cannot imagine being sent home knowing there may be a loose cell somewhere, knowing you can be stage 1 today and stage 4 in a matter of months (it happens), and know you're NOT being monitored and scanned...especially if you want it. Not all stage one and two patients may want regular scans, but they are still needed at least every year or two. Certainly people who are stage 3 should get annual scans. But again, even that varies from patient to patient, doctor to doctor, facility to facility, and depending on who is paying the bill. At the very least, scans should be offered and the patient can choose whether or not to have them. But the decision shouldn't be made by anyone other than the patient!

And, because that diagnosis, no matter what our stage, plays on our nerves and stress levels, I would also decree that all offices or facilities have a resource person or department and AS SOON AS that diagnosis is pronounced, the doctor's office would send the patient immediately to this resource person or department where they are plugged into a melanoma support system. Generally doctors' offices don't keep up with what's "out there" as far as support. And, to be fair, they probably have enough to do that that would be asking too much. That's why there needs to be a person, or department, who resources that kind of information. No one should go through melanoma, or any cancer, without the support of others who are going through the same thing. Our families, also, need support systems. They exist but we need help finding them.

We need more help than finding support systems. And because of that I'd decree more viable financial help options. Cancer isn't a cheap thing to live with or fight, and melanoma is among the most expensive. Insurance companies don't like to see this diagnosis. People who don't have insurance at the time of diagnosis probably aren't going to be able to get any with this as a pre-existing condition. Not everyone is able to self-pay. People without insurance and ability to pay don't always get the best of care. That varies from office to office and from facility to facility but it happens.(Note: this in red was written February 15, 2014 and health insurance is now the law in the USA and can't be denied for pre-existing conditions).

I'd decree that all doctors who are NOT melanoma specialists swallow their pride and refer people with melanoma to oncologist and surgical oncologist specialists. Get them into facilities that have melanoma specialists. Don't think melanoma is like other cancers and if you can treat breast cancer then you're qualified for melanoma. You're not. We need specialists and often new patients don't know that. I would rule that ALL doctors, of any kind, know the nearest melanoma specialists to them and that they refer all melanoma patients.

I'd also decree that all doctors learn about melanoma because this is the fastest growing cancer there is and people are joining our ranks far too fast. Learn what it looks like and learn that it can also look like "nothing." Learn to listen to your patient and if they want something removed...remove it. That shouldn't be that hard to do, but apparently it must be brutally difficult for some doctors to do their job. I hear from far too many people that they literally beg their doctors to remove something and the doctor would rather watch it and so they all watch it and it's melanoma and by then it's at a more advanced stage. Doctor: this is not and will not be YOUR melanoma or possibly YOUR death. Remove the blasted place. I, hereby, decree that!

OK, I got carried away. I really can't decree anything. But if I ruled Melanoma World that's what I'd do.

But I also wouldn't lay everything at the feet of the medical establishment and absolve us from responsibility.

I'd decree that those with melanoma, any stage, get involved in finding that cure, fund research, do the walks, spread awareness, tell your stories.

I'd also decree that we stop calling melanoma "skin cancer." It is far more than that and it creates a false sense of security and a huge misunderstanding of what melanoma really is.  It's melanoma. Melanoma cancer, even. But it's not melanoma skin cancer and it's not malignant melanoma. As a friend correctly points out, there's no such thing as non-malignant melanoma. Melanoma is cancer and because it is cancer it is malignant. Malignant melanoma is very redundant.

For those who don't have melanoma I'd decree that you pay attention to us and listen and not politely either, but proactively. A lot, not all but a lot, of melanoma can actually be PREVENTED!

Those melanomas that can be prevented are lives that can be changed and maybe deaths that won't happen because of this disease.

I don't want to rule the whole world, just the melanoma part of it. This is what I'd do if I had that kind of power. Since I don't, I'll dream the dream, advocate, and do what I can to push for change.

And I'll pray. Every day I pray for that elusive cure. Every day I pray for those that need that cure yesterday, today, and will need it tomorrow. I love you guys!

And I am grateful that God hears our prayers and one day, one day, I'll be grateful for that cure.


  1. Amen, sister!!! I wish you ruled the melanoma world!! My brother was Stage 3, had surgery, and his surgeon said he was "clinically free" of cancer. I pushed for a scan, and they said no, and my brother had faith in his surgeon (even though it was his family doctor that wouldn't remove the original mole). By the time he had his PET, 2 months later and after 3 weeks of needless radiation, he had widespread metastisis. I think the metastisis was there before he even had the surgery (his first CT was 5 weeks prior to his surgery). I hate melanoma - I hate cancer in general - and I hate the doctors who play God when they have no right.

  2. Here- Here!!!! Wonderful written!!!
    I was diagnosed stage 1 twice - and both times I insisted on scans. I was blessed with awesome doctors who agreed and found me all the resources I needed as well as the support.

  3. I was told at Stage 2a that I was all clear after my surgery. No scans. It hasn't set well with me at all and I have an appointment at the University of Michigan soon for a second opinion and I am going to insist on one. They are also going to re-read my original biopsy. They do scans on patients with stage 1 breast cancer and they even do chemo for them. I just don't thin
    k I want to risk it. Be proactive and if something doesn't feel right, get a second opinion. It may just save your life. Thanks so much for writing this. I wish you ruled melanoma world! You would be great!

  4. I wish you ruled the melanoma world too! My husband being a Stage 3a at onset and several surgeries since to remove melanoma makes us both appreciate how important it was for us to switch doctors and find a Melanoma Team that worked together for you. You have to be your own advocate it's very important! If we could vote we would vote you in you would be excellent!

  5. We keep fighting, we keep pushing, we make our voices heard. And then we do it all over again. And again.

    I believe Jillian wouldn't be here today if it weren't for the PT scan that her Dr. randomly ordered. And once we found that it had spread to her liver,it was recommended that we see a melanoma specialist. We already had an appointment lined up, but not everyone knows to do this. We put too much faith into our doctors because we are already reeling from the news of cancer. Having Melanoma Cancer is complicated. A person must see a specialist to get the proper treatment, and all doctors should be educated of that fact.

  6. Amen ! Thank you for this post. Nick Stage 2a.

  7. Amen to everyone who has posted and Especially Carol. Always be your best advocate! I was mis diagnosed and recv' d. too much of the wrong chemo. drug. My oncologist was using me to try to get the drug approved through the FDA. She allowed me to suffer for her own benefit. Always get a 2nd opinion. Always make sure that your oncologist does everything they can to confirm diagnosis. They should explain every CT scan and have the pathologist look at biopsy later if cancer is questioned. If an oncolgist is questioning if chemo is wking have them do a PET scan. If you are BRAFpositive, confirm that your tumor is BRAF too. Most of all trust Jesus and remember your oncologist should never play God. I hope this helps others.


Thank you.