This was originally meant to be a blog entry about my upcoming radiation treatment, and the tattoos I now have (three small dots) to align the linear accelerator beam, among other things.

The James M. and Ruth P. Clark Center for Radiation Oncology at Massachusetts General Hospital

The James M. and Ruth P. Clark Center for Radiation Oncology at Massachusetts General Hospital

However, at the same time as I was getting set up to start radiation treatment for the end of August, I also had a set of CT scans performed to see if my cancer had metastasized (spread) elsewhere in my body. I got word Friday evening that some areas of concern were found in my scans, but that I would need to wait until Monday (today) to learn the specifics.

Needless to say, there was a lot of stress floating around our apartment, as we feared the worst from the scans.

However, in today’s meeting with the oncologist, we learned that what the scans showed was that my inguinal (groin) lymph nodes are enlarged. In particular, deep under where I already had about 20 lymph nodes removed in my right groin, there is a lymph node that is over 3cm in size (well over an inch), and a number of smaller lymph nodes nearby are larger than they should be as well.

In my left groin region are several lymph nodes that are in the 1.5cm range.

The CT scan cannot tell if any of these lymph nodes are cancerous, but 3cm is huge, and the probability that it is cancerous is almost certain.

The good news is that there was no sign of abnormal growth anywhere other than my lymph nodes, which my doctor says he still considers a regional manifestation, and not distant metastases. That means, for what it’s worth, that I’m still technically Stage IIIC, and not Stage IV.

The actual details of what happens next are still to be worked out once my oncological surgeon returns from vacation next week (I meet with him next Tuesday morning), but I am now scheduled for a PET scan on Wednesday, and the results of that scan will help determine what action should be taken with respect to the swollen lymph nodes in my left groin, such as getting a biopsy or simply removing them outright.

The much larger lymph node in the right groin, however, will definitely need to be surgically removed, along with the other enlarged lymph nodes in the vicinity of that one. The thinking is that I will only have one surgery to deal with nodes on both sides of my groin, and that will require a bit of planning and decision making next week.

So, instead of starting radiation treatment at the end of August, I will likely be recovering from yet another surgery, with lots of mandatory bed rest, and hopefully no drains (or only short-lived ones). I will then get my planned radiation treatment once my wounds have had time to heal for a couple of months.

That in turn throws a hoped for trip to the San Francisco area in late October into disarray, as well as plans we had to return to Bonaire for a short visit this fall.

In terms of my adjuvant treatment, the current thought is that I have not been on Sylatron long enough for it to necessarily have made a real difference yet, so I will likely be sticking with the Sylatron immunotherapy treatment for the foreseeable future (although probably suspended in the time around my surgery). At present, my Sylatron symptoms are the same as before – minimal appetite and significant fatigue. My white blood cell counts are still not great, so we’ll have to see if I take my next dose on Thursday or not.

I keep hoping that I will have some stability in my life, but every time I think I’m getting there, a new twist arises to completely change things. I am grateful the latest problem is “only” more cancer in my lymph nodes as opposed to cancer in my organs, but I would have been a lot happier if there were no new signs of cancer at all. It’s certainly a bumpy ride on the melanoma train.

I’ll post my next blog entry after my meeting with my surgeon next Tuesday. Maybe I will even add a video blog at that time (I am too emotionally drained right now to do a video blog with this post – sorry).

 

When I was first told I had malignant melanoma, one of the leading questions bouncing around my dazed brain was “why me?” And when questions like that start invading one’s consciousness, the answers are rarely satisfactory, and are, in fact, frequently disturbing.

You feel guilt for having somehow contracted a deadly disease, but can’t figure out how you might have contracted it – was it that sunburn in Costa Rica in September 2008? Or too much time spent at high altitude in airplanes? Maybe something we ate at some point? Or too much wine? Or not enough? Could it be our low carb lifestyle? Or did that actually prevent the melanoma from cropping up earlier?

You wonder what you could have done differently so that the diagnosis had come back clean instead of laden with cancer. You wonder if you could have acted sooner to somehow head it off at the pass. You worry that since you got the disease, your loved ones might be susceptible to a similar diagnosis. And, if you’re a person of faith, you might view your diagnosis as some sort of spiritual test.

And this series of “why me?” and “what if?” questions can drive you crazy, stress you out, and depress you – none of which will help one overcome the disease, and could make it even worse, if the theories of mental attitude affecting physical wellness are to be believed (and I do believe them).

After dwelling on these thoughts for a while, and doing some research, which confirmed that even the really smart medical people really don’t know exactly why some people get melanoma and others don’t, I came to the conclusion that the reason I ended up with cancer boiled down to chaos theory, or, in other words, “shit happens” (with apologies to my kids for using the “s” word).

As I have been learning, cancer is the result of cell mutation, which, in simple terms, results in particular cells growing out of control either because they have mutated in a way that accelerates cellular reproduction (mutated oncogenes) or disables the cellular controls that prevent such rapid reproduction (mutated anti-oncogenes). Dr. Siddhartha Mukherjee, author of “The Emperor of All Maladies: A Biography of Cancer” equates these mutations to the controls of a vehicle: the accelerator pedal being pressed all the way down (the mutated oncogenes) or the brake pedal failing (the mutated anti-oncogenes).

In the case of melanoma, the type of cell that has gone nuts – at least initially – is a melanocyte, a pigmented skin cell, hence the classification of melanoma as a skin cancer and warnings by folks like the World Health Organization warning about sun exposure being the cause of skin cancers including melanoma.

However, according to a friend in the field of cancer treatment research (thanks David S.), the mutation can come from any of a number of causes, including, but not limited to, sun exposure, chemicals, or simply the build up of random errors that occur during normal cell division. So, in other words, we’re back to “shit happens”.

In a way, the idea that my cancer was a random, unpredictable occurrence is a bit of a relief, as it allows me to not have to worry about the past, and instead focus on the future.

And that future involves surgery next Monday, and then some sort of treatment – most likely immunotherapy – starting at some point in June.

The surgery I am having on Monday morning is called a “lymphadenectomy”, and involves the removal of all of the lymph nodes in the area where my sentinel lymph node was removed, namely in the region of my right groin. More specifically, I’m having an inguinal lymphadenectomy, “inguinal” referring to the groin and lowest lateral regions of the abdomen (per Merriam-Webster’s dictionary). The surgery will take between two and three hours, and will result in several incisions ranging from the middle/upper part of my right thigh up to my lower abdomen – probably an area about 12-18 inches high in total.

The reason for the lymphadenectomy is that it is believed to be a way to surgically treat cancer which has spread to the lymph nodes but has not metastasized beyond them. The lymph nodes appear to act as a dam of sorts to the cancer cells, collecting and preventing them from easily spreading in the rest of the body, but at some point they can get overwhelmed and then the cancer cells will spread to invade organs and other parts of the body. So, by removing the affected lymph nodes surgically, the hope is that it will also remove the cancerous cells (see, e.g., WebMD). There will be a biopsy performed on all the lymph nodes removed during the surgery to determine how wide spread (if at all) the cancer was in my lymphatic system.

As a bit of background, the lymphatic system is part of a body’s immune system, including the fighting of bacteria, viruses, and even cancerous cells. The clear fluid carried in the lymphatic system is called “lymph”, and lymph nodes act as a filter against foreign materials. There is a good overview of what the lymphatic system is and does here. A diagram from that link showing the lymphatic system and the lymph nodes can be seen below:

(From http://penile-cancer.ca/pc/lymphadenectomy.htm)

Of course, no externally induced physical changes to a biological organism can be made without some sort of side effects, and for lymphadenectomies, the side effects will likely include swelling from the build-up of lymph, now that the lymphatic system has been disrupted by the removal of all the lymph nodes in a given region. This swelling may or may not be temporary, and is called lymphedema. Dealing with the swelling and lymphedema in a leg would require the use of a pressure stocking. Also, during the recovery period after the lymphadenectomy, until the body has adjusted to the lack of particular lymph nodes, will also require the use of a drain to remove excess fluid build-up. The drain I was shown during my initial appointment to discuss the lymphadenectomy was about the size and shape of a hand grenade.

I expect to be kept in the hospital for a couple of days – probably getting released on Wednesday, and already have a follow-up appointment scheduled at the end of the month, followed by meetings with the clinical staff at the hospital to determine my adjuvant treatment, which will likely involve immunotherapy. Unlike chemotherapy, which involves using cellular toxins to try and kill cancer cells in the body, immunotherapy tries to boost the body’s immune system to help attack any cancer cells remaining in the body after surgical removal of cancerous bits (lymph nodes in my case).

On a separate note, the skin graft on my wide excision has, for the most part, failed to bond. Blood formed under part of the skin graft and prevented it from grafting properly. The downside to this diagnosis is that it will take longer for the excision to heal, and I will have a noticeable scar on my right thigh, but both of those items are, in my view, not significant in comparison to the greater challenges I face in fighting my cancer.