It's amazing what doctors won't tell you because they think you don't need to know, wouldn't understand or would over react to. Trying to get info from doctors has been like pulling teeth for me. I never knew what questions to ask while I was there. I wasn't given enough to know what to ask. There's still stuff I don't understand. If I can't grasp it all now, at least let me write stuff down and I can look it up. But doctors don't trust us to find good information without them. That or they just can't remember how to talk to normal people. My insurance is changing. This isn't easy having to write melanoma on the application. Now insuring me is expensive even though I'm healthier than most people. I run 9-11 miles a week, lift weights, and have normal numbers on all of my blood tests. I don't smoke. I don't drink and I'm not overweight. I have no melanoma that I know of right now and there's a good chance I never will again. I'm not bragging about all this. I'm just frustated that insurance companies treat me like a leper and it's affecting Quantum and all the people who work there. I have to live with that guilt and there's nothing I can do about it. Frustrating. But that's actually a tangent. Let me get back to my point.

In applying for the insurance I had to list my stage and Clark's level. Oddly enough, Clark's level is an outdated measurement and staging is much more complicated than the simple number they want. In fact, I was never even told my stage. Here's the point of my story. I didn't really know my stage. I wasn't even sure about my Clark's level or my Breslow's depth (the more accurate measurement). I just today called around to get it for the insurance. I found it kind of funny that I had cancer but couldn't remember anything about it. It didn't really matter to me and apparently the doctors didn't find it all that imperative that I know. I had to talk to two nurses and two records people (some might call them secretaries). I thought I would summarize what I've learned for anybody interested. I mainly just want to have it written down somewhere so I can look back if I forget.

My first biopsy was in June 2005. This was before we knew anything. It was called a punch biopsy. It's like a circular drill bit. It's a small, hollow circle that's jagged on the end. It's pushed on the skin and turned. For this particular biopsy it was only able to take a small part of the mole. So then it's bottled up and shipped off to a pathologist. It's sliced into tiny slices and looked at under a microscope. From this first path report I was told it was Clark's level IV. This by itself is bad. It says I have a 54% chance of survival. It has something to do with layers of the skin that are affected. Mine had reached the lower dermis. The problem is it's too broad a range and pretty inaccurate when it comes to the seriousness of the cancer.

I was also told the Breslow's thickness, or depth. It was 0.4mm. Breslow measures the vertical thickness of the tumor. 0.4mm is tiny. Less than 1 millimeter has very little chance of spreading. This is much more accurate in my case. This number is the reason why I never had to have my lymph nodes tested or take any adjuvant therapy like chemotherapy. This is a very good number. The insurance company never asked for this number.

Of course this was my first biopsy. I had to have the rest of it removed. It's called a wide margin excision. It used to be pretty standard procedure to remove several inches all around the tumor just to be safe. Fortunately for me they have more practical guidelines to determine how much really needs to come off. This is also determined by the Breslow number. You may be seeing the significance of this number by now. For me I only needed 1.5 cm all around, so it's about 3 cm across. Several inches would have been my whole foot. Anyways, this excision revealed that the part left was actually Clark's level III which means just the upper dermis. But it had a Breslow's thickness of 0.65mm. I really don't understand this discrepancy. Just another thing I have to ask about next time I go back in April. I'm only putting the pieces together.

Now there's a much more complicated way of staging. Simply put: I'm stage 1. It means less than 2mm thick, no ulceration (open on the surface) and hasn't spread. But there's more to it. This fascinates me. I like the detail. Under stage 1 there's a and b, stage II has a,b and c (then there's stage III and IV). There's also a TNM scale. Here's a good summary I found:

T stands for tumor (its size and how far it has spread within the skin). The T category for melanoma is based on the tumor's thickness and whether it is not ulcerated (a) or ulcerated (b). Ulceration means the layer of skin covering the melanoma is absent. This is only well seen under a microscope after a biopsy.

N stands for spread to lymph nodes (small bean-shaped collections of immune system cells that help the body fight infections and cancers) near the melanoma. The N category also reflects whether the melanoma cells have begun to spread to lymph nodes and are found in the lymphatic channels under the skin connecting to the lymph nodes. A cancer is labeled N(a) if it can be seen with the microscope. If the cancer in the lymph nodes can be seen as a tumor with the naked eye, this is called N(b). Another category called N(c) refers to melanoma that is in skin lymphatic channels around the original tumor.

M is for metastasis (spread) to distant organ.

My stage was 1B which means the tumor has measured less than 1 mm but has penetrated to the lower dermis.

It's also T2. That's the confusing part. T2 usually means between 1 and 2 mm thick. Mine isn't but I think that the Clarks level (the layer it reaches to) bumps it up. Remember the skin on the top of your foot is very thin. That may have something to do with it.

I'm also N0 (thats a zero). This means there are no signs that it spread to my lymph nodes. I never had them tested though. They are basing my need on the thickness being less than 1mm and by physical touch. Each time I go in, Dr. Burry feels the lymph nodes behind my right knee and on my right groin and they haven't changed.

They don't even mention M for me since I had no N. So no metastisis, meaning it hasn't spread to another organ.

So I was Clark's III and IV, Breslow's depth of 0.4mm and 0.65mm, stage 1B T2 N0. I'm sorry if all this was boring. I like this stuff and am fascinated by what there is to know and by the fact I was never really explained all this. I had to look it up online.

Here's the kicker. I had another unusual mole biosied in December. I actually saw the pathology report on this one. Dr. Inzerello (my family doctor) had no idea what it meant and I had another pathologist look at it and he didn't really know. What language are all these doctors using to over complicate things? Well, it wasn't melanoma. It was called "abnormal". That's real comforting. Thanks doctors. I'll see a dermatologist in the spring if we get our insurance taken care of. If we don't, then I won't see any doctors until next year when we actually have insurance money. It's all gone right now to pay for last years surgeries. I still owe Dr. Burry. Will this ever be behind me? I'll always have the scars. I'm dine with that. I just want some peace. I hate owing people. I hate being a victim of the insurance companies' every whim, begging them to accept me, feeling like they control whether or not we can afford for my kids to go to the dentist and the pediatrician or whether I can go to the dermatolgist and my surgeon and my family doctor for all of my follow ups. Isn't having cancer hard enough without all the financial fear?

Maybe I've said too much. But most of you never made it this far in the entry anyways.