What does sarcoma feel like?

After my diagnosis, I began making plans for a second opinion. For reasons I'll discuss later, I ended up with an appointment at Memorial Sloan-Kettering Cancer Center in New York, and in preparation for that visit I spent a bit of time on their soft-tissue sarcoma website. 

One particular entry on their FAQ grabbed me:

Is sarcoma painful?

No. Pain is uncommon in sarcoma unless it is very advanced or in special rare sites.

I was (and am) fascinated by that flat "No." 

Sure, there's a little hedging with the advanced and the "special rare sites" business -- what part of the human body, by the way, is "special and rare," where is the sarcoma Area 51? -- but the hallowed Sloan-Kettering is basically saying soft-tissue sarcoma doesn't hurt. 

Well, yay. Caught a break on that one.

Sure, it doesn't hurt -- it doesn't hurt in the way that I imagine that the initial impact of a bullet doesn't hurt. The tearing and rending of flesh part hurts; those darn complications hurt. But initially, you know, it's not so bad. Shock covers it.

I could go on making easy jokes, but despite some stretches of what I would call pretty significant pain, I think there's probably more truth in Sloan's glibly reassuring authority than I am crediting. 

Most of my own pain has been secondary to treatment (radiation was very difficult, as were some of the surgeries) or has resulted from the advancement of the disease. Epithelioid sarcoma is notorious for being diagnosed late -- often as long as a year after showing symptoms -- because it masquerades as something benign like a wart or a shallow little lump under the flesh. The archetypal story is someone noticing a hard little bump on a hand or a foot, eventually getting seen by a dermatologist for some sort of local treatment (perhaps "drainage," or even excision), then the bump returning and/or spreading as doctors and patient get progressively more concerned about the condition and eventually arrive at a correct diagnosis. At one Italian hospital, 29 of 54 ES patients waited longer than six months for diagnosis. From what I've seen in other papers, that kind of delay is fairly typical, maybe even better than average.

When my own (pelvic) bump shifted into high gear, I started feeling a moderate, throbbing pain most nights at about the time I wanted to go to bed. It was enough to make it difficult to sleep, but ibuprofen was enough to take the edge off it. Later, when the tumor spread to the lymph nodes in my groin, I felt a kind of itching, irritated soreness. Sadly, I had no real doubt that the disease had spread before my biopsy -- I could feel its presence, as if something was tentatively but persistently trying to scratch its way out of me -- but it wasn't what I would call painful. If I had to rate the pain, and you know how I struggle with that, I'd put my initial few months with ES at about a 4 on the scale.

So Sloan-Kettering's FAQ is simultaneously ludicrous -- and, maybe, accurate. One thing that interests me about it, which is probably the reason those terse lines lodged in my head for nearly two years, is that I never thought the FAQ's blunt reassurance about pain was accurate, and yet, despite never assigning credibility to the reassurance in the first place, I was reassured in spite of myself. OK, hell, I thought back then, it's going to be tough to get rid of this thing and it will probably get me at some point, but at least it won't hurt.