I have found a group on Facebook "Post Breast Therapy Pain Syndrome" this week. I call the affliction The Dragon. I have also searched medical sites for information. Australia, Scotland and Sweden have done research on this topic. Was formerly believed neuropathy was caused by chemo. Not so. Other countries are reporting that this is common in 40-70% of mastectomy, and some lympectomy, patients whether they received chemo, radiation, or surgery; whether surgery involved 1 sentinel node or removal of all lymph nodes. Doesn't matter if cancer was Stage 0 DCIS or Stage 4. HOWEVER, no one yet has a good solution or a clue regarding the cause. It is the typical topical anesthetic cream or Lidocaine patiches, narcotics, NSAIDS, massage therapy, acupuncture, "nerve" meds such as Lyrica. None of the studies have found a common set of risk factors either. Initially they said young, overweight, extensive surgery. I am 61, reg weight, and plain double mastectomy with 1 sentinel node removed Oct 2010. Had a lumpectomy July 2009; same symptoms with that.
I don't have a cure either but have learned to cope with the symptoms. I am like ReeseeB who posted Sept 2011. I have tried about everything. Initially wrapped an Ace around my chest as tight as possible; could stand this for about an hour. Sometimes I just went topless. Narcotics did not touch the nerve pain and Lyrica gave me a high and my brain did not function. I acted like a drunk. I asked my husband to form a stiff coat hangar into an oval, which I then place over my head, and slip under a stretchy t-shirt. It lifts the shirt off my skin. "The Wire" is my best friend. I had 8 acupuncture treatments and can stand to wear a breast form for several hours/day. Sometimes I last 3-4wks before I need another treatment. Some days a warm rice bag feels good. Other days I can wear breast forms and place a cold, not ice, pack between the form and my skin. I have 4 different types of forms; each day differs regarding which I can tolerate. So I either wear something very tight which compresses the skin, or just a t-shirt with The Wire. I can touch my skin with my hand. It doesn't hurt or burn. Let silk, cotton, even a cold breeze....and The Dragon is released.
Again this neuropathy is not new news. Painful skin sensations are very old news, especially when you are the patient. Wish they would find a cause and a cure.