September 4, 2006

On Mole-ville, a Public Service Announcement, and the Internet.

Category: Politics,Tech — Biella @ 8:15 am

In a recent post I mentioned that my scalp is adorned with 14 titanium staples. While some may think that I have them because an odd accident incurred during my recent move, I have them because I live in mole-ville and some of them were causing a small disturbance in the hood.

Living here means I have a lot of moles on my body and well, these little masses of brown pigment, while they can be somewhat attractive, and unproblematic, can be unruly creatures that can change on short notice and cause a lot of problems. Now I usually don’t blog about personal things like my moles, but I thought it is worth writing about this as a public service announcement… So if there are any other readers who live in a crowded mole-ville, this is little reminder to check up on your moles, sooner than later.

I have never had a problem with my moles and there is no history of problems in my family but I do have more than the average number of them. In fact, anyone who has met me knows this because they are all over my face, and there is one distinct one, under my left eye that is shaped like a tear, and often mistaken for dirt, more graciously as a tattoo, and most oddly as that black stuff that football players smear under their eyes.

About a year ago, after one of my friends was diagnosed with melanoma (thankfully he is ok), I started checking my moles more frequently and did a full check at the dermatologist. All was ok and when I went to another dermatologist in February, all looked good. Then this summer, as I was running my hands through my hair, I felt a mole and started obsessing over it. I was pretty sure I did not have it a year ago as it was not on my chart and if was, it was probably flat and since I could feel it, it had changed, which is not a good sign… I was traveling most of the summer and it was first in South Africa where I had it checked in a fancy dermatological office in Durban. They dermatologist took a close look and said, “looks fine but have it removed because you can’t track it.” That made me feel a lot better so I enjoyed the rest of my time there and then as soon as I got back I saw a RN at a dermatology office in NJ (it is near to impossible to get a derm appointment without a month’s wait in the US but since they had RNs, I could see someone quick.. More on this in a second).

This person also confirmed what the dermatologists in SA had said but also decided to remove it because I could not track it. A week later a pathology report came back that showed it was dysplastic and that the cells were changing, and thus considered abnormal. Some dermatologists consider this as pre-cancerous, some don’t, but it seems to be that there is more likelihood that this type of mole can turn into cancer. So the “treatment” is a full excision where they remove 1cm all around the mole. I got word of the report around the 8th of August and the only time they could fit me in for surgery was the 25th, a day after I was supposed to leave for Edmonton, which changed my moving plans (and explains why I arrived here so late, making getting my stuff complicated given school is in session and parking is tight).

I then scheduled an appointment for a a full body check and removed another mole that once biposed was confirmed as dysplastic and though not as abnormal as the other, the recommendation was to also remove the surrounding dermis.

Now, when I called the surgical coordinators, they could not fit me in another time slot to expand my appointment for 2 surgeries because they were “full” even though I explained I was moving away from the U.S. They said that it was up to the surgeon to decide whether to operate on the second area and since I was leaving to Canada the NEXT day, he would probably agree but no guarantees.
So of course, I wanted the stuff out because I was not sure how to go about getting the procedure done in Canada. My insurance does kick in the second I sign up and there is no Bull-Sh*t pre-existing clause stuff here but because I could not get an appointment in time, I would probably have to go to a medicenter that performed these operations and not all do. Though I was confident I could get it done eventually, it would take a lot of inquiring and after a 7 day drive and all that follows a big move, I decided it was not the thing I wanted to do.

So I got to the office early on the 25th and one of the first things that comes out of my mouth when I saw the nurse was that I was leaving the next day to Canada and I did not know when I could get care there. Of course the first phrase that pops to mind for many Americans when you say “Canada” and “health care” is “socialized medicine” which most people in the U.S. associate with bad healthcare and long waits.

Now on the one hand, I have to admit I, to some degree, share those fears, which is one of the reasons I wanted the extra dermis removed asap.

On the other hand, I think that the claim is a big fat red herring because in fact for many Americans, they *do* have to wait a long time for many procedures (dermatology is classic for this, and even my first procedure took a 3 week wait and if I wanted to schedule the second one, it would have taken 5 weeks) or worse, they have no insurance, which KEEPS many people from going to a doctor in the first place.

So American medicine is not necessarily “fast track” and in a dual sense: in the literal sense because HMO healthcare is like socialized medicine with capitalist prices, and because many people without insurance also probably avoid the doctors until they are in bad shape… And even though I have insurance, they would not pre-approve anything as I am in some awful pre-existing clauses because my insurance had lapsed for 2 months this year. And even though I have never had a problem with a mole in my life and did not even see one doctor in the 6 months before I got my insurance (which is when the pre-existing diagnosis would pertain to) and even saw a dermatologist in my HMO network in February who found nothing wrong, the insurance wants to make sure to add as many roadblocks as possible in the hopes of never paying up. Great.

Now I am very grateful the nurse at the derm office proceeded to get the doctor to perform the 2nd surgery and he also was more than ok to do it. I wanted to give them big fat hugs after the procedure but you know, you just don’t do that type of move in your blue robe after the surgery.

Before the surgery I naturally “hit” the net to gather a lot of information on moles, cancer etc… I join the millions around the world who–for better or for worse–use the Internet to supplement (some I am sure supplant) their doctor’s medical advice. In fact, a key part of my second project on psychiatric survivors looks at how patient communities are building a sphere of amateur but expert medical knowledge exchange. It is an enormous sphere of vibrant peer-to-peer knowledge production but one that many are uncomfortable portraying as such because it involves a lot more risks and ambiguities than exchange knowledge about, you know, how to get your blue tooth working…. But if we bracket the realm of alternative remedies (which admittedly is a HUGE part of this type of exchange), I think in fact, patients are pretty savvy and are engaging in risk-averse behavior by going on the net and illness forums. A lot of what is exchanged are warnings about side-effects, detailed accounts of experiences with procedures, and yet a lot of red flag raising that one’s experience may not match another persons but may be still helpful. It is a lot of information that often may be missed during the exchange with the doctor and derives from what is another type of expert knowledge: one’s bodily experiences with medicine, illness, and other related procedures.

But I have to say that when researching melanoma and moles on the Internet, I was somewhat stumped. There is just too much variation out there to make informed judgments and abnormal but non-malignant moles have the same characteristics as melanomas. The Internet, in this case, seemed helpful to provide some baseline information and then just served to freak me out more than necessary so I turned away for the time being.

For now I am just adjusting to the staples, which come out in another week. The procedure did not hurt much but the first week after the removal my head was much more sore than I had expected. Not so fun when on a marathon road trip, which is finally over!

4 Comments »

  1. Good to see you back on the blog and get well soon!!

    Best

    David

    Comment by David — September 4, 2006 @ 8:43 am

  2. I wonder if part of the reason there’s so much variation in the information available on the Net is simply because there’s so much variation among the experts in the first place. If some dermatologists thinks that cell change is likely to be pre-cancerous, and some don’t, it sounds like our understanding of the politics of mole-ville is not much better than our understanding of (to pick, uh, a random example) the politics of Iraq :-) .

    Comment by Karl Fogel — September 5, 2006 @ 11:33 am

  3. Internet 1, Doctors 0. Hooray!

    Comment by (Julio) — March 21, 2007 @ 6:02 am

  4. Hi there,

    So how are you doing after all the surgeries???

    It’s funny how we feel the same about internet research on moles. Reading your page gave me some confort…

    I had 2 moles removed 2 weeks ago. This morning I got a phone call with the results: one was normal and the other abnormal, so the next step is excision… They couldn’t give me an appointment because they are fully booked and to make matters worse, I don’t have insurance, so they are supposed to get back to me with appointment date and prices….I don’t know what to expect ):

    Emy

    Comment by Emy — July 6, 2007 @ 11:22 am

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