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.