Tuesday, March 12, 2013

Yesterday's "Visit" With Dr. Tyler

Yesterday, as I write, I had my six month check-up with Dr. Douglas Tyler at Duke Cancer Center. He's my surgical oncologist and director of Duke's Melanoma Group. I see him and my dermatologist twice a year. Since I opted not to do Interferon in 2008, I don't see an oncologist, though one does have my file and I have met with her a couple of times. She's there if I ever need her.

Since I've gotten into the habit of writing about my appointments, let me share the highlight of this one. No, it wasn't being surrounded by people carrying on "private" conversations on their phones in the waiting area. While an inane soap opera droned in the background. I got a glimpse of what hell must be like. And it wasn't the cute little sign on the back of the door in my own little room in the back: "Dear Guest, When you are finished with your visit, please leave the door open when you leave. Thank you." Or something very similar. I distinctly remember the "guest" and "visit" parts. What's next? Changing the name of the place to "Duke Cancer Hilton"?

No. The highlight was asking him a couple of questions and getting a new prayer focus as well as the conversation kicking a few of my brains cells into gear.

A little background. I've chosen to control my melanoma with surgery only. So far, in almost five years, I've had my melanoma mole removed, and two surgeries to remove all 27 lymph nodes under my left arm (during the first of those surgeries Dr. Tyler also removed more of the area where my mole was). Besides quickly developing lymphedema in that arm, that's all I've done. No recurrences. No Interferon. And because I know how I react to even "simple" drugs like aspirin, I've already chosen to control any recurrences, should I have them, with surgery only. If, and only if, surgery cannot reach a met, and is not an option, will I consider whatever drug options I'm given. Blessedly, there are more options than in 2008 and they're showing great promise. But, even then, they don't work for everyone.

I have a Facebook friend, who is stage 4 and his melanoma spread to his brain. He has been NED (no evidence of disease) for four years now by controlling his with surgery only. I told him I would ask my surgeon if people like us have ever been studied...people who chose the "surgery only" route.

So, yesterday, I asked and I told Dr. Tyler about my friend. He and his nurse, Karen, both beamed at hearing about this guy who has been NED 4 years with brain mets. And he told me "surgery only" has been the control arm of some trials.

But, as our conversation progressed, he told me something I found interesting. He said that there are some people who do well with this disease no matter what they do, like me and my friend. And there are some people that don't do well with this disease no matter what they do. He said we need to find out why some people do well, no matter what, and some people don't.

As my brain later thought back on that, I thought about Braf, for example. We're either positive for the Braf mutation or negative. People who are positive are considered to be good candidates for Zelboraf while people who are negative, aren't. But not everyone who takes Zelboraf will see positive results. It will be great for some, but not for others. Why? Same goes for any option, including "surgery only." No matter what is chosen, some will do great and some won't. We need to find out what the common denominators are.

My brain began to think about my own family history with this disease. I'm third generation. My maternal granddaddy had many melanomas removed in his lifetime. I first started hearing the word in the late 1960s I guess. Maybe the early '70s. He died in January 1990 in his 80s. He did well with his melanoma. In the 60s he lost six feet of his colon to cancer and I've wondered was that "colon cancer" or melanoma that had spread. He never did any chemo. He died of lung cancer and I've wondered "lung cancer" or "melanoma"? Whichever, he still did well with his melanoma. After I was diagnosed, my mama mentioned one time that she had a melanoma removed, but I don't know when that was. She's 82 and has done well with her melanoma. Have I done well because of a genetic propensity to do well with melanoma? Would I do equally well if I had another type of cancer? Other family members on mama's side have died quick deaths from other cancers. Were they missing a gene that I was fortunate enough to get?

I hope a seed was either planted or watered with Dr. Tyler yesterday. I know I'm praying now, not just for a cure and for more and better treatment options until that cure is found, but I'm also praying they find out why some of us do well, no matter what we do, and some of us don't. They can set the criteria for "well" and "not well" and get busy looking at patient histories around the world. If I meet those criteria, I'll be glad to be studied. I bet we all would if it would move us closer to the Promised Land of a cure.

Every choice we make on this road is made after much prayer, study, reflection, deciding what we can do and cannot do, what we're willing to try and what we aren't willing to try. No matter what we choose, there are NO guarantees. None. None of us know when we start out if we'll do well or if we'll have to keep trying every option that comes our way.

All I know is that, since I was diagnosed stage 3b in July 2008, many people at lesser stages but diagnosed at the same time or since then, have died. Why haven't I not even had a recurrence? I'm not complaining, mind you. I'm grateful. But I'm curious. And is there something in me that can point to something some people are missing in their DNA or lifestyle or both?

Do I share more than a common battle plan with my stage 4, surgery only friend? I have friends who have done intense drug therapies and have been NED years. Do we all share something besides a common disease? Is there a common thread that ties us together that should be studied? I'm beginning to think so.

Maybe my melanoma specialist surgical oncologist researcher is too.

Praying so.




  1. After watching a program about the "cancer treatment" killing people before the cancer. I think I would go the surgery only route as well. I think my sister-in-law who died of bone cancer last year would still be here if they had not done all the chemo and radiation. I'm not saying she would be well, but radiation and chemo took her out.

    1. Hi, thanks for taking the time to read this and to tell me about your sister-in-law. I'm sorry. Prayers!

  2. Hey Carol, this was the perfect entry for me. I'm a surgery only, too. I had my surgeries and that was it, no treatment. I turned down Interferon and couldn't do a trial because of family and financial reasons. In two days I will be 2 years out and NED. I've often wondered why I'm still NED when others were diagnosed the same time and are gone now. If I could take part in an NED study, I would do it in a heartbeat. Anything I could do to help find a cure! I hope the docs pay attention to what you said.

    1. Thanks, Becca. I'm with you. In a heartbeat. In 2008, Interferon was the only thing I was offered. No trials. Times have sure changed.

  3. Carol,

    Thank you for this. I am still deciding if I am going to go through with the interferon treatments. I was diagnosed in Jan 2013. I have had two surgeries and am clear today. However my husband is in the Army reserves and has been in Afghanistan since Sept 2012, he is hopefully coming home in June, which is what I am waiting for, so that he can talk to the doctor and ask question too. I am still trying to decided if I want to go through the treatments or not and this really helps me.
    Thank you again

    1. Hi Lori, Please connect with me at Melanoma Prayer Center if you want to and we can talk. I hope you also read the blog entry that's linked to in the first paragraph. That particular post explains why I chose not to do Interferon. And the comments after that post may help you, too. It's a big decision and one we don't get do-overs for. You're wise to wait for your husband to get home and make him part of the conversation. No matter what you do will affect him as well. Blessings.


Thank you.