If you follow my FB page, you know I recently took about 6 days off from my yoga practice because I was traveling for my husband’s birthday. I often still practice when I travel, but for some reason on this trip, I just wanted it to be about us relaxing at the beach together, and I didn’t want to have to interrupt our time with my yoga practice. It felt great and we had a lovely time, and I actually wrote a short post on FB about how it is good, sometimes, to take a few days off for perspective and reflection on your practice.
Well, after we returned home, I remembered why I usually don’t take more than a day or two off from my practice. Ouch! I have felt, on and off since my mastectomy and full axillary node dissection, some strange nerve pains in the underarm, the side of my chest wall, and down into my upper inner arm. The pains range from a vague numb discomfort type sensation (like after your foot goes to sleep because you were sitting on it) to pins and needles, to sometimes a deep burning sensation like a hot poker is sticking into me, or even a very sharp searing/tearing sensation, like the muscle or skin is being ripped apart. The last one is really weird because I will be able to tell that I am clearly NOT overstretching anything or causing enough tension to result in that tearing sort of feeling. Sometimes it happens when I am sitting completely still! So clearly, these are all nerve sensations, related in some way to nerves that were damaged at surgery, maybe are trying to grow back, or to the development of neuromas (nerve overgrowths, in this case benign and related to trauma to the nerve). This syndrome is called Post Mastectomy Pain Syndrome (PMPS), and refers primarily to this nerve pain in the breast, chest wall, shoulderblade, underarm, and even down into the arm. But PMPS also often includes pain related to lymphedema, capsular contracture, shoulder dysfunction, or other downstream effects of breast surgery (mastectomy or lumpectomy), axillary node sampling, reconstruction, or radiation. Because it can occur with surgery other than mastectomy, it is sometimes called Post Breast Surgery Pain Syndrome instead.
Shockingly, PMPS occurs in as many as 50-60% of people who undergo these types of surgeries, so if you have it like me, you are in good company! Some things make it more likely, including full axillary node dissection (as opposed to sentinel node), implant reconstruction, and radiation. Interestingly, younger age, depression and anxiety, poor/passive coping strategies, lack of cognitive flexibility, and underlying other pain syndromes are also risk factors for PMPS. And protective factors, such as resilience (defined here as a person’s ability to maintain relatively stable, healthy levels of psychological and physical functioning even when exposed to highly disruptive events”) have been correlated with lower levels of PMPS. So how long does it last? To differentiate this from normal postsurgical healing, PMPS is defined as pain that persists beyond 3 months after surgery. Many women with PMPS will have slow improvement in pain over time, but a sizeable percentage will still have pain years later. In fact in one study of women reporting PMPS, nearly half of them still had symptoms at 9 years of follow up.
So for those of us who have this, we gotta learn how to minimize it so it doesn’t limit us or cause us to suffer any more than it has to! Fortunately we do have some control over how we deal with this.
As with most things in medicine, lots of different treatments have been studied, and some may work for some women and others better for others. As you may have guessed, physical exercise has been shown to improve outcomes, including reducing pain, improving function, and improving quality of life. It stretches the tissues, keeps shoulder alignment healthy, improves blood flow, and helps with scar tissue. This is why I think yoga helps me so much. If I stick to my regimen of regular yoga practice, it seems to me that I keep the tissues of my chest wall and underarm nice and mobile, stretched, soft, and elastic. If I don’t move my shoulder and chest wall enough, things seem to get stuck again, and wham! The pain comes back. I’ve been back from vacation for 4-5 days now, and back to my usual regimen of yoga, and the sharp searing pain I was having is basically gone. I need to remember this next time I think I’ll just skip stretching for days on end. As you know from my other blogs, yoga has specifically been studied in breast cancer survivors and shown to improve pain, physical function, mood, and quality of life (among other benefits). So yoga has got to be good for PMPS, and I am a perfect example.
Physical therapy, massage, and acupuncture have also been shown to be of benefit in some women. Medications are often used in severe cases, including nerve pain modulating medications, such as gabapentin. I saw one report of topical capsaicin being of some help. Psychological therapies, such as mindfulness based therapies, cognitive behavioral therapies, meditation, and hypnosis have also shown benefit. Interestingly, yoga incorporates many of these psychological strategies in our practices as well, so you get a double bonus benefit with yoga! And then finally, some surgical approaches and interventional procedures, such as nerve blocks, fat grafting, and targeted muscle reinnervation have been used in some refractory and severe cases.
So that may be waaay more than you ever wanted to know about post mastectomy pain. But since I occasionally suffer with it myself, I thought some of you might also be in the same boat. It is such a strange sensation. It helps me some just to know what it is, so that my fear response doesn’t kick in and start catastrophizing all of the horrible things that it might be. That being said, if you have pain that persists and/or worsens, talk to your Dr about whether you need any imaging, and especially about what options you might have for treatment. Because there are things that can help! And make sure you are moving your body. This is what helps me the most!