Adding up the number of my days

Have you ever added up the number of your days? If you’re at all like me, you probably have. I can remember doing the math when I was a kid, as someone with an overdeveloped fear of death, and not being happy with the answer. Long before I became a Christian I was an existentialist: someone free to make choices in a big world that I sensed to be largely hostile and unexplainable. I wanted “my number” to be as big as possible. If my life here on earth could not be explained, then how much less that which came after it. The idea of death literally scared the hell out of me.

I can look back now and thank God for that great gift. My idea of hell was not so much a place I might end up as a fear of annihilation—the final and complete cessation of all consciousness. An end to “me.” By God’s grace, I was eventually released from this prison of panic, with a vision of spending eternity with God in his new creation supplanting it: a conviction that life continues after death in greater richness and joy than we can imagine on earth. Some call it heaven. My fears thus relieved, my hope secured, I was set free and life transformed into something much bigger and better. To emphasize my point musically, click here to hear a stunning version of Amazing Grace sung by Judy Collins and the Harlem Boys Choir.

I did the math to calculate “my number” again this afternoon. Now that the end of my days appears to be within sight, I figured it would help to have a hard figure in mind—at least for planning purposes. At the time of my birth, presuming a life expectancy of 75 years, my days could be expected to reach more than 27,000—a large number by any measure. As a kid I saw them stretching out ahead of me, seemingly a luxury of time, but ultimately a finite number. I figured I could safely dismiss the passing of the first 10,000 or 20,000 days before needing to figure out what came next. There was always another day to reckon with destiny. Time was cheap.

No more. As of my last visit with Dr. Curti two weeks ago, I was told I could expect to live another 100 days or so based on his medical prognosis. The exact number is not important, as predictions of my survival have been wrong before and I’m ready for whatever comes anyway. But it’s pretty sobering to hold that number “100” in my mind, knowing that today it’s more like 80, will be 79 tomorrow, 78 on Thursday, ad finem. I hope I’m wrong about this, and that I’ll be embarrassed to discover months from now that things turned out differently. It would be just like melanoma to pull such a stunt, given its wildly unpredictable biology.

I had hoped to be on a road trip out Route 66 this week with a friend, but am instead at home continuing my radiation treatment for the tumor in my spine and spending time with my N&D (nearest and dearest).  Lord willing, I’ll be able to see more of the world beyond the walls of our home later. 80 days might stretch to 180. The therapy seems to be helping. I have minimal pain at night in my lower back, as I did before. I’m holding out hope that if the cancer shrinks enough, I’ll regain strength in my legs and resume normal walking. If you pray, that’s something you might speak to God about on my behalf. Using a walker, I’m lucky to get to the end of the street and back.

In recent days I’ve had the privilege and challenge of saying good-by to people I love. I will continue to do so in what time I have. When all pretense and artifice is stripped away, when every encounter brings with it a sense of finality, some real communication begins. It helps that we don’t have mostly cancer “warfare” to talk about; the artillery is spent. I believe the interpretative constructs we use reveal the narrowness of our minds. In serious illness, our experiences are bounded by verbal armories and the assumption of perpetual conflict. We don’t grow. Rather than permitting the interruptions of our familiar lives (like cancer) to enrich these lives, we impose timeworn patterns of thought upon the experience, reducing it and closing it against insight and discovery.

As author and cancer-survivor Walter Wangerin has written, we fall into patterns that crush into powder our adventures into the unknown. And so “a battle with cancer” is shaped to conform to a schoolyard brawl or the daily news. Nothing new. Nothing to call us into an ever newer light.

Having surrendered in that battle, I am more than ever experiencing the alternative blessing of hearing the collective wisdom of many who have suffered, lived long lives, or who simply have something important to tell me. I welcome their counsel. I will give them mine, such as they wish to receive it. This is Thoreau’s marrow. This is where real life can be found.

Ellen, my family and I are so grateful that you’ve accompanied us all this way. As Wangerin has written in Letters from the Land of Cancer, you’ve carried us when our legs were too weak to walk, our tribe who bears with us the wayward choices of our cells as you have born the sometimes wayward choices of our individual lives.

Were I to write these blog posts without others to receive them, they would lose dimension and resonance. But to write, as it were, "before a chorus of ears and under a choir of minds—this grants me the sense of a surrounding congregation singing glory-hymns, yes, even now, right now, as I sit typing to you.”

And as new news comes, and the brain’s synapses continue to fire, I’ll write again.

Waving the white flag

I needed a day like yesterday to be humbled and driven back to my knees before God. First, I had my first of 10 radiation sessions to treat the hot-dog-sized tumor in my spine. There is no pain from this mass nor from the treatment itself, but also no quick or easy relief. My legs are very weak. I use a cane now to get around the house, and if this nerve compression (Cauda Equina Syndrome) worsens, I could end up paraplegic. The radiation should eventually calm the nerves in the upper legs as they exit my spine, but there’s no guarantee it will. It’s very hard for me to accept this slow loss of mobility. I may take to a walker if I don’t soon regain muscular strength.

I also got an email from Dr. Curti yesterday stating that melanoma specialists at Fred Hutchinson Cancer Center in Seattle agreed with his plan for palliative radiation to the spine and did not think that gamma knife would benefit the brain for the reasons that were explained to me last week (e.g. since melanoma cells are traveling through the cerebral-spinal fluid, there will only be more deposits in the near term). In addition, the large area that needs to be treated with gamma knife would likely result in negative cognitive changes. Although another course of ipi or temozolomide chemotherapy could be offered, they have a low probability of response and a high probability of side effects. There appear to be no clinical trials of melanoma drugs on the West Coast for which I might be eligible.

When your medical history includes as many comebacks as mine has, it’s easy to imagine I must have another one in me. Realistically, I don’t. I believe I‘ve been tested this week: to resist the temptation to seek more curative treatment in the hope that I can yet beat melanoma. Almost every patient with advanced cancer will know what I mean by this. No matter how strong your character or religious convictions, it’s a brutal decision to finally wave the white flag. To say, “Enough. I’m done.” To know there’s no alternative to surrendering to the biological imperative that God has designed into our genes. To tell yourself, “Death is near.”

I have no particular sense of what I want my last days or weeks to look like. I’ve lived my bucket list—been everywhere I wanted to go and done all I needed to do. I’ve been blessed in life beyond measure, to which I hope this blog is testament. I now mostly want to be around family and friends, most of whom are fortuitously located nearby (two of them down a flight of stairs!). Should I regain strength in my legs, I hope to get back into more of God’s creation this spring and summer and to enjoy its pleasures. If I don’t, I have the consolation of the peace of Jesus, of prayer, of reading and of conversation with the people I love most. My days are full.

Having lived a good life, I pray to God that I would now die a good death. While I am staunchly pro-life, I am not equally anti-death. The devaluing of life at its end as at its conception is equally abhorrent. Assessing the value of life at its completion is different, however, than the same assessment at its beginning. Destroying life at its beginning rejects God’s sovereign arrangement in creating it, abandons hope in God’s sufficient grace and does not trust in God’s ability to care for what he creates.

Life’s sanctity, however, does not demand its preservation at all costs when a lifetime is fulfilled. Those Christians who say the sanctity of life requires us to use any medical means to stay alive contribute to our inability to routinely teach and practice dying well. Let it never be said about me that “I have fought the good fight” (2 Timothy 4:7), as this quote from the apostle Paul is typically misconstrued to be less about spiritual things than about trying every medical option to stay alive. My gradual dying has given me the advantage of advanced warning. I don’t want to squander the gift of generous time for end-of-life preparation than most people are given. In many respects, the last few years have been the most precious of my life. I’ve been able to accomplish what many people are not granted in a sudden death.

I met with a social-worker friend this afternoon to talk about hospice care and the choices to be made. It was a good exchange of practical information, but also a little surreal as Martha is someone with whom I've run many times in both formal events and just around the streets and trails of our neighborhood. I haven’t run in three months now and likely won’t again, which in itself is a small death. The process of gradually giving up things I love is sad, but clearly part of God’s plan. I take comfort in knowing that what I love most—my wife, my family and my friends—will be the last thing I see and am blessed by in this life. He leaves us with the best till the end.

If I can 1) glorify God by living a full life, 2) accept his plan for its end, 3) trust in continued life in Christ, and 4) know that that he will see me through from this world to the next, then I live contentedly and gratefully. I fear nothing.

MRI of the soul

This has been a week of deep introspection. Adding to the usual spiritual intensity of Holy Week were a set of MRI scans made on Monday and Tuesday in which my brain and spine were interrogated, not by the Holy Spirit, but by magnetic and radio-frequency energy that makes MRI the diagnostic powerhouse that it is. Combined with prayer and contemplation, I’ve been examined into the deepest recesses of who I am.

My previous post describes in brief what the MRI scans discovered. The images were not a pretty sight. Filling much of the space from which my brain tumor was excised last August is a moonscape of recurrent melanoma—a heterogenous jumble of rind and pith. If I hadn’t seen for myself just how large and extensive the mets were, I don’t think I would have believed it. I can understand why surgery     and radiation therapy are not good options for me. The visual evidence is damning.

Complicating my medical outlook is that melanoma cells have migrated from the tumor bed on the right side to the brain’s left ventricle and established a 3-mm met there. With such open access to the cerebral spinal fluid, cells have also floated down the spine and set up colonies, including a large lesion that descends 4 cm below L1. This region will be treated by standard radiotherapy starting next week, which should palliate the worst of the symptoms caused by the tumor (e.g. low back pain) and make me more comfortable.

This wide dissemination of melanoma weakens what little logic remains for treating the really serious mets in the brain. If they were the full extent of my problems, a good gamma knife team might do me some good. Unfortunately--to employ the medical cliché of the week--the cows are now out of the barn. Even though the only evidence of melanoma outside of the central nervous system is one small met in my right axilla, the brain is a notoriously difficult organ to treat and mine is in a hell of a mess. We’ve done about as much surgery and radiotherapy as can be tolerated without turning my brain to mush. I’m not willing to make that tradeoff given that I’ve already seen how hard it is claw back from brain treatment.

So while I reserve the right to change my mind, my decision—made with input from my family—is to not intervene in the brain. I met separately this week with my medical oncologist, radiation oncologist and neurosurgeon, and they all agree that Gamma Knife is unlikely to do me much good therapeutically and almost certainly would diminish my quality of life in the two to four months they believe I have to live. Dr. Curti, who does melanoma research himself, will check with specialists elsewhere to make sure there isn’t a clinical trial he doesn’t know about that might be open to patients with brain mets (which is rare) and for which the downside of treatment isn’t worse than what I’ve already experienced. I don’t regret having tried the ipi-whole brain radiation regimen; that was our best shot. It probably bought me some time, but was very unpleasant and I’m seriously disinclined to do anything like it again.

So in the last three days I’ve been assimilating the implications of my do-nothing strategy (other than palliative radiation to the spine). This is where the examination of my heart during Holy Week comes in. I’ve asked God for his clear diagnosis on my spiritual health. While probing our heart of hearts requires peace, calm and focused attention, it at least doesn't require the use of technology. This is a private exercise open to us all. I know that corruption lies within my heart and that this is where healing is needed most. While the odds of surviving the cancer in my brain are pretty slim, I know that God’s grace covers my heart. I will live into eternity based on the promises he has already made to me.

“Physicians will not heal you, for you will die in the end, but it is I who will heal you and make your body immortal.” –Pascal’s Pensees

I will in coming days be spending time with family and friends, resting as needed, and talking with God pretty much nonstop. As best as I am able, I will be sucking out the marrow of life. While I don’t know the number of my days, I expect to enjoy each of them to the extent my health allows. Radiotherapy of my spine should make my legs stronger in coming weeks so that I hopefully can walk comfortably again. We’ll be spending Easter morning with my Mom at her church in the Portland area, and tucking afterwards into what I expect will be a tasty brunch. After that we’ll head to our beach house near Waldport and enjoy a day or two of unusually mild spring weather. Is there any finer sight in Oregon than a blue-green corrugation of wild surf stretching out to a sky of robin's egg blue. Well, there may be, but this is one of the best for those of us lucky enough to live here.

I’m not happy about how melanoma has sidetracked the life I’d hoped to have while approaching my 60^th birthday, but none of us gets a guarantee of our physical health as we age. We all are mortal. We all will die. I’ve been blessed with a splendid life and I know that when it ends it’s just beginning. On this Easter eve, my heart and mind turn to Jesus in the tomb, about to explode forth in new light and new life. His resurrection presages our own. Hallelujah!

Recurrence

What follows comes from an email we sent this morning to our nearest and dearest, and that does the job of cutting to the chase. I’ve decided to post it here rather than trying to find some other way to say essentially the same thing. There’s so much I do want to say, but that can come later. At this time, I just want to rest, pray and listen carefully to whatever God has to tell me. More soon.

Dear friends: As some of you know, we've been to Portland the last two days for my quarterly scans and a consultation with Dr. Curti, my medical oncologist. I'm afraid we got bad news this time. The melanoma has recurred aggressively in my brain and spread to my spine. This news comes as a shock but not a surprise, if that makes sense to you. I've lived with melanoma for years and in the absence of serious symptoms, figured I was good for many more miles. Well, maybe not.

Treatment in these circumstances would typically be a form of radiotherapy called Gamma Knife, but my doctors have concluded that the cancer is too extensive to treat without causing grievous damage to my brain function and at any rate wouldn't prevent its recurrence. I would likely lose part of my sight and motion. I might spend months in rehab, during which new mets would likely form. The prognosis is dire, but we are not without hope. Ellen and I and rest of the family are in prayer for God's guidance and we're at peace with whatever should happen. We'll be making a decision in days ahead whether to pursue other options or not.

Thanks for your thoughts and prayers.

Song of hope

 

An artist friend sent this verse of a Dickinson poem to me several years ago, relatively early in my cancer journey. The calligraphy, which she penned herself, is matted and framed and sits atop my bedroom dresser. I’ve read that this simple, metaphorical description of hope is typical of Dickinson’s homiletic style, derived from Psalms and religious hymns. It continuously inspires me.

We hadn’t seen KL in 20 years or so when she, her husband Blair, and adult son Brett stopped by for a short visit earlier this week on a drive down the West Coast. KL has survived a bout of breast cancer herself, so knows something personal about this bird that perches in the soul. I got to finally thank her in person for her thoughtful gift, but more importantly spend time with a family we love and respect and for whom “hope” is more than wishful thinking.

In his book, “Turn my Mourning Into Dancing,” Henri Nouwen takes several runs at defining what he means by “hope.” His best attempt, in my opinion, is the following: “For those who have eyes to see and ears to hear, much in our fleeting lives is not passing but lasting, not dying but coming to life, not temporary but eternal. Amid the fragility of our lives, we have wonderful reason for hope.”

A briefer definition is that hope is the life of the divine Spirit within us. Become aware of this mysterious presence and life takes on deeper meaning.

In the Gospel of John (6:40), the apostle writes that anyone who believes in Jesus has eternal life. That’s a radical, even revolutionary thought, that in this fleeting, temporary world he comes to plant the seed of eternal life. Nouwen adds that in many ways this is what is meant by the term “the spiritual life”—the nurturing of the eternal amid the temporal, the lasting within the passing, God’s presence in the human family. We often see this presence in the friends and family who surround us. His love is demonstrated through the love of others with whom we may share affection but no social obligation. I would call this hidden reality “grace,” when people who have not laid eyes on each other in years can reconnect, love and once again learn from each other, as we experienced on Tuesday.

As people who have had lives interrupted by cancer, KL, I and many others have learned that hope does not mean that we will avoid or be able to ignore suffering. I believe that hope born of faith matures and is purified through difficulty. The pain and complications of cancer have their consolations, of course. Hope is much more than the surprise we sometimes experience when things turn out better than we expected. It does not depend on the results of our latest scans or blood test. For even when we get bad news, we can still live with a keen hope, the basis of which is the One who is stronger than life and suffering.

“Faith opens us up to God’s sustaining, healing presence,” Nouwen writes. “A person in difficulty can trust because of a belief that something else is possible. To trust is to allow for hope.”

This also means that to trust is not always to demand specifics of what will transpire. God wants us to know life, but what that actually means is open-ended. He wants me to experience healing, but how can I know precisely what healing looks like? If my cancer remains in remission but my life is slammed by a seizure and Addison’s Disease, do I remain any less in God’s grace? I believe not. I know that regardless of my physical health, he wants to bring me to a new place of faithfulness. If I try to figure it all out intellectually I risk losing a trusting spirit.

During this season of Lent, I have prayed that I relent in my constant desire to have all the answers. God is going to work out the details anyway that I’m tempted to seek after but ultimately cannot entirely grasp. I desire to see God even amid my weakness. I want to be open to him every day and in each moment, providing space for his spirit to perch in my soul.

No mountain climbing for now

The performance-enhancing potential of steroids in many sports is well known, but not so much mountaineering. The use of dexamethasone has apparently become rampant, however, corrupting the climbing game and putting at risk the lives of those who compensate pharmaceutically for what they lack in skill and training. What was once reserved as a way to treat severe mountain sickness has mushroomed into the drug of choice for climbers who want to make sure they peak out on extreme alpine ascents, reports Outside magazine. Dex has left in its wake a trail of neurological wreckage that disturbs but doesn’t surprise me.

It was a course of dexamethasone at sea level that snapped me out of my adrenal crisis a few weeks ago, so I have no complaint about the proper use of the drug. I know something about its magical power to resuscitate and stimulate. It brought me back from the dead. A month ago I powered down to 20-mg doses of prednisone and this week to 15 mg. Like many who take corticosteroids for chronic medical conditions, I’m tweaking my dosage to find what minimizes my exposure to their side-effects while managing the symptoms of my Addison’s disease. It appears it will be a trickier process than I expected.

The prednisone I take replaces the cortisol, the body’s “stress hormone,” that my adrenal glands no longer produce. I’ve learned the last few days that moving too quickly to a lower dose can induce the symptoms I previously experienced during my adrenal crisis, including muscle pain, sleeplessness (I was up at 4:30 this morning), fatigue and loss of appetite. I’m hoping I’ll perk back up with the slight adjustment I made in my dosage starting yesterday. I plan to finish a St. Patrick’s Day 5K on Sunday but to my great disappointment, I’ll likely be a walker and not a runner. I just don’t have the juice right now to move very quickly.

Fortunately, there appears to be no reason why I can’t resume my exercise regime now that I better understand how to manage my prednisone. Daily doses can be safely increased for a short time when I know my body is going to be stressed. Most people establish by trial and error when they need to top-up their meds. My aim will be to keep any extra dosage to a minimum while gradually building up fitness again. Running is great weight-bearing exercise, which compensates for the osteoporosis that steroids can cause. I’ll take a pass for now on the mountain climbing.

The Ogler turns 5

Come Easter (March 31), The Ogler will celebrate its fifth anniversary. That’s not bad for a cancer blog. If you’ve ever spent time cruising this category of blogs, you’ll know that most who blog either quickly lose interest in it and stop or they die. There’s an argument to be made that mine has gone on long enough, but I sense I haven't finished what needs to be said. Don’t delete my bookmark just yet. I intend to keep on going for as long as the Lord gives me strength and clarity of mind to do so.

I read in The New York Times yesterday that writer and filmmaker Nora Ephron wrote 100 blog posts, albeit none of them about the leukemia that finally killed her last summer at age 72. Counting this one, I’m up to 443 blog posts, which leaves Ephron's total in the dust. Impressive, eh? Of course, in the six years she had cancer, Ephron also wrote two books, two plays and directed a movie (“Julie and Julia”). While cancer may unleash what little literary talent some of us have, it can’t create something out of nothing. I’d love to try my hand at a screenplay some day, but only if Tom Hanks or Billy Crystal is willing to play The Ogler. Anyone care to be my agent?

This blog is about much more than just melanoma, but its audience is nonetheless pretty limited. Other than posting an occasional link on my facebook page, I do nothing to promote what I’ve written. A few other melanoma bloggers have found me and added me to their blogrolls, which I appreciate as it directs stray readers my way. Unfortunately, most melanoma blogs are not well written, but often do include useful information and encouragement for the newly diagnosed. The vast majority are written by younger women; very few by older guys like me.

I get anywhere from 80 to 200 pageviews/day, which doesn’t mean a lot to me. “Pageview” strikes me as a hopelessly vague metric, but seems to be a pretty standard unit for the web. I have a few (18) followers and other friends and family who check in regularly. Most traffic to The Ogler comes from people who first do random searches and stumble upon something I’ve written. I don’t understand search engine optimization very well, and frankly don’t care to jump down that rabbit hole. I’ve ignored Google analytics. I figure that over time, anyone who is meant to find The Ogler probably does.

What I find fascinating is the relative popularity of my blog posts. If you scroll down this page you’ll find on the left a list of the “top 10” most Popular Posts. Leading the parade with 1142 pageviews is “The world’s best-known melanoma survivor,” written about John McCain’s history of melanoma during his run for the Presidency in 2008. That’s weird, in my opinion. Of the top 5 posts, two each are on religious and medical topics. I tend to get high readership anytime I write about a famous personage: Ted Kennedy, Steve Jobs, Friedrich Nietzsche, Lance Armstrong, Grete Waitz. There’s no accounting for taste.

A good place to finish today is with a reference to the most popular post in the last month (258 pageviews), “Living in the Light of the Resurrection,” which is appropriate for this season of Lent. I don’t put much trust in numbers provided by Google, but I do have a sense of what “sells.” There’s definitely more substance in this post than anything I wrote about John McCain. As a rerun, I highly recommend it.

NED: How do you know?

Believing in the importance of scans in late-stage melanoma is almost religious dogma for some patients and their doctors. A spirited discussion at the Melanoma Research Foundation’s web site in recent days bears this out with opinion of whether follow-up scans are worthwhile or not falling on the side of “more is better.” I rarely participate on this bulletin board, but did on this occasion as I have a strong opinion on the topic, as you’ll see below.

Here’s the original post from the MRF site that got people talking, followed by an edited selection of responses:

Question: Let me start by saying that I am stage 3c, 39 years old, and undergoing no treatment currently. I had surgery in Sept 2012 to remove a single infected  lymph node in my upper left arm…they took a few sentinel nodes as well and they were all clear. I am seeing a melanoma specialist who does not really believe in scans, but he did plan to do another PET scan at the one-year mark. So my question is, how do you know if you have a problem? I feel great - I have started eating better and lost some weight. I hit the gym hard several times a week and feel stronger than I have in years. Does some physical symptom typically manifest itself if you become stage 4?  How many people cruise along thinking everything is great and then have some kind of routine scan to find out otherwise?

Response: Unfortunately, you can have issues and have no external signs.  A year ago, I had just completed my annual physical and everything was great. Nothing in my lab work or the way I felt would have let me know that I was stage IV with at least 9 areas of melanoma - lungs, liver, bone, etc.  It was only by a miracle that a routine scan to check for artery plaque showed a "shadow" on my left lung that led to the diagnosis. This was 13 years after an original bout with melanoma behind my right ear and no lymph node involvement. I am coming up on my one-year anniversay taking Zelboraf and have been NED since last summer.

Response: I was stage I for 6 years, and felt great until one day my hand started developing a tremor.  Within 2 days I had lost the use of the right side of my body due to a tumor that hemorrhaged in my brain. Tumor was removed and now I have very few problems from that. PET scan and CAT scans found a few small lung tumors that didn't even show up on chest x-ray taken at the hospital 5 days before the CAT. So in my experience it just showed back up with no warning.  Important to keep up all followup care.

Response: I can only tell you our experience. My husband was Stage 3 and had completed his one year of interferon two months earlier. He was feeling GREAT when he went in for routine scans in July 2011. He had been playing basketball with our son and we were all vacationing on Cape Cod. We thought all would be good when we traveled to Boston for those scans, yet they revealed one lung tumor which was over 1 cm. So, with no symptoms whatsoever, Phil became Stage 4 and needed lung surgery. Not a great way to end our vacation. I think it's crazy that a doctor doesn't believe in scans, especially since melanoma is the most unpredictable of cancers.

The Ogler's response: After I completed interferon for stage III melanoma, I opted to minimize all care, including scans, and even though I soon moved up to stage IV (subq mets) experienced almost four years of blissful good health. That came to a crashing end last summer with a brain tumor that "came out of nowhere." A well timed brain MRI might have detected it before it bleed, but there's no guarantee of that. Here's my blog post ("haunting question") in which I contemplate the choice I made to live life and to let the chips fall where they might. I believe not having quarterly scans per my doctor's recommendation was still the right decision for me. (Here's my argument, in case you're interested).

Response: In reference to your question, my husband (who was stage IIIC) was feeling fine and went back to the surgeon for one last check up at the 6 month time.  He found a lesion in the scar area of the surgery that was done about 1 year before and it was pressing on the spine at the cervical area in the neck and was deemed inoperable.  Imagine our shock when we thought we were in the clear and going to be able to live life for awhile and he had been feeling just like his old self doing everything he enjoyed.  He was sent for scans and found they were also in the liver and lungs so now he would be Stage IV.  That was 2-1/2 years ago and he has been on Ipi (Yervoy) for 2 years now and is NED (no evidence of disease).

Response: My doctors are the same: no scans unless there is evidence. I told my local onc about feeling cruddy, headaches, weight loss, etc., on two occasions and he would just say, "That's interferon." When I saw my surgical onc they sent me for scans. Low and behond, there was a spot on my brain. I made it a year from my original diagnosis. I knew something was off but kept being told it was the medicine. Don't be scared to fight for your health.

Response: Peter "The Ogler" preferred to live his life without worrying about cancer. I know that some people adopt that attitude and most of them probably never encounter melanoma again. But as the father of  three young children, I think you need to be more responsible than that. Metastizing melanoma has no symptoms until it's too late-- like Peter's stroke that came from out of the blue. Or my brother's, for that matter.

Response: I haven't read all the replies, but there are definitely melanoma centers that do not do scans without symptoms. In studies, scans have not proven to increase survival. It's not just some piddly institutions who don't scan; there are more than a few. Like it or not, it's not an isolated instance.

Response: Maybe, just maybe, not doing scans for stage IIIc made sense when there were no effective treatments for state IV. What is the point of the expense and the radiation exposure and the "scanxiety" if there is nothing you can do to stop the spread anyway? The problem is that many oncologists still seem to have that attitude. I know that the senior radiation oncologist who treated my brother had that attitude. He essentially said, "Stage IV melanoma? Forget it. You're a goner." But things have changed in the field of melanoma in the last five years. If a scan reveals a single met in the lung or liver, SSR or surgery might be appropriate. BRAF, MEK, ipi, anti-PDI and other treatments are now possible for stage IV, so the sooner you find the metastases the better.

Response: I'm just playing devil's advocate here. I'm not pro or con when it comes to scans as I feel that is something that needs to worked out individually between patient and medical provider.

You mention new treatments. Yes, we have BRAF and Yervoy. But while some people do have durable responses to new treatments, mostly the life expectancy is increased by less than six months if you take these drugs. If you are a responder with minimal disease, it is likely you'd be a responder with more widespread disease. I know the arguments both ways from a general and personal point of view, but until there is a treatment that increases life expectancy in a large population by a significant amount, I don't see the scan issue changing. Scans are big business and big money makers, and some medical centers refuse to buy in to their supposed benefit.

Now if we had a treatment that increased durable response in 50% of the population and it was determined that "earlier is better," the argument would be different. Yes, there are some uninformed doctors who say "stage IV, you're a goner." But that doesn't mean there aren't some very well informed doctors who feel that scans do not improve outcome.

Response: My melanoma oncologist and I had a long discussion about scans. She says there is no evidence to support that scans actually increase lifespans. Those who have scans showing recurrence and who undergo heroic surgeries and treatments do not statistically live longer as a group than those not receiving scans in the first place. From what I understand the statistical variance with melanoma is quite large. It is more "random" than other cancers.

Response: In my case, we are now doing brain MRI and body CT bimonthly. I'm not sure I care if the scans increase my chances of long term survival.....I just want to know where I stand. I don't like the idea of giving melanoma a six month to twelve month head start in this race.....it already gets enough of an advantage. I'm a pretty positive person, determined to fight this. But I like having a "scorecard" to know how it's going.

Response: Interesting timing on this topic. I just went for scans and have been NED for 22 months. My onc considers this two years and says that scans at this point would be more harmful than good. He is a melanoma specialist and is well known and respected in Chicago.

Now here's the kicker...I never had a primary that my dermatologist was concerned about. Yes, I had 1 or 2 things removed in the past but they came back clear. During a visit I asked him about a tiny lump on my face. He said it was probably a sebaceous cyst.....well, it was melanoma (this also happened to The Ogler, as reported here). Once I found a specialist he went through old path slides to rule out previous mole removals....all clear. I had the PET/CT...all clear. My oncologist felt this was a primary dermal melanoma which some of the fine people on this board educated me on. It's rare but he said it is not out of the realm and given that this lump in my cheek was there for a year; he felt it was likely.

Anyway, I went on to have wide excision of cheek as margins from derm removing "cyst" weren't clear and had SLNB under right jaw bone. Finally, margins and SLNB clear and no treatment. Tumor was pea sized...width was 5.7mm and depth would be considered stage III but he didn't stage me and said it was irrelevant as I'm NED now and had no lymph node involvement. I asked about blood stream and given that the lump in my cheek was there for close to 18 months he felt it was highly unlikely or would be first case in his close to 25 years of dealing with melanoma.

Response: My friend is stage iv and is as fit as a fiddle. She's now outlived her prognosis. She is training for a 10k and 5k race at the moment. I think though, from what I have found out about this disease, that I would want her to be scanned often even at stage 3. You can be in front of the 8 ball at stage 4 nowadays. I have read about many people living with this disease for many years at stage iv and now I feel that great things are coming. Don't just go on what one bloke (doctor or not) says. What do you think/want? It's a balance between knowing what's going on and living your life.