Wednesday, April 16, 2014

Post-mastectomy pain

This photo of Grand Rapids through the Ford Museum window hasn't anything to do with the subject at hand but is part of my current project to make a book of my favorite photos. The window makes it appear almost like a water color
Post-mastectomy pain syndrome (PMPS) is experienced by 20-68% of breast cancer survivors according  to Cure magazine. Not sure why they report such a huge range of sufferers..maybe the info was gleaned from several studies. Despite its name, PMPS is more commonly experienced by lumpectomy patients than mastectomy patients. The only way this makes sense to me is that it must be due to the radiation that the lumpectomy people receive as the surgery  for a mastectomy is more extensive and thus more prone to damaging the intercostobrachial nerve. Most mastectomy patients get to skip the radiation (unless their lymph nodes were affected). Also personal evidence: I really did not feel the effects of this until after radiation despite my two surgeries.

The intercostobrachial nerve serves the upper arm, under arm, shoulder and chest region. The pain can be constant or intermittent. In my case, it led to frozen shoulder. For almost a year, I could not extend my arm upwards. As I had physical therapy for frozen shoulder on my other arm due to breaking it a year before my stay in Cancerland, I knew the drill and eventually was able to get most of my  mobility back though I still feel a twinge when I do the pull downs at the Y.

What is left is occasional stabbing pains in my rib cage. The first time I felt this, I panicked as I thought it was bone mets. But the pain went away within hours, sometimes within minutes. Also it isn't always the same ribs. Sometimes it feels suspiciously like a heart attack but I chose wisely at the Cancer Store: get the right breast kind, well away from the left sided heart.

I will go for months without feeling anything and then it will hit: just last month I was sitting in a car somewhere in Pennsylvania driving back from NY and I feel a crushing pain taking my breath away. It passed within 10 minutes. More often I feel this in the middle of the night. But it always fades, which I always have to repeat to myself even when I feel I am going to pass out.

The article in Cure (winter 2013, p 48)lists all sorts of medications that might help. But as it is most likely neuropathic pain (damage to nerves themselves), only substances such as gabapentin might help and that takes 2 weeks to kick in. In my case, it happens so rarely I just have to buck-up, Buttercup.

The pain can occur anywhere from a couple months after surgery and last for more than 6 years. So if surgery caused it, why didn't it immediately show up (radiation seems more like the culprit). Also Taxol can damage nerves but usually in the fingers and toes. I seem to have less attacks as time goes on so maybe it is fading away.

Ah still cold. I am waiting for it to warm up a bit before my run. The insurance inspector is here to make sure we got a new roof. Yesterday it would not have been obvious underneath that 4 inches of snow. Hopefully it melted.

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