The question I would like you to reflect on before reading this post is if your treatment plan included a mastectomy, were you ever advised by your medical team of the possibility of developing a condition known as Post-Mastectomy Pain Syndrome (PMPS)? I was not, and I experienced something following my double mastectomy that I was totally unprepared for, I developed debilitating shoulder pain which evolved into a condition known as “frozen shoulder”. This condition didn’t occur immediately after my surgery but months later. By this time, I had achieved full range of arm motion so this new pain, which was quite severe, was totally unexpected. Unfortunately, it a condition that at times still impacts me.
What distressed me was that although I hadn’t been warned of the possibility of PMPS, the development of this condition is indeed quite common. In the words of my physical therapist, “Something breast surgery patients should always be made aware of”, so when it happens, it is recognized and treatment can begin.
The following passage from the American Cancer Society’s Website:
“After having breast cancer surgery, some patients have problems with nerve (neuropathic) pain in the chest wall, armpit, and/or arm that doesn’t go away over time. This is called post-mastectomy pain syndrome (PMPS) because it was first noticed in women who had mastectomies, but it can also happen after other types of breast-conserving surgery (such as a lumpectomy).
The classic symptoms of PMPS are pain and tingling in the chest wall, armpit, and/or arm. Pain may also be felt in the shoulder or surgical scar area. Other common complaints include: numbness, shooting or pricking pain, or unbearable itching. Most women with PMPS say their symptoms are not severe but still cause anxiety.
Statistics note that between 20% and 30% of women develop symptoms of PMPS after surgery. It's most common after operations that remove tissue in the upper outside portion of the breast or the underarm area. PMPS is thought to be linked to damage done to the nerves in the armpit and chest during surgery. But the causes are not known for sure.”
So why…if the statistics show that 20-30% of breast surgeries result in this condition, why are patients not advised of the possibility? Not only can it occur following, mastectomy but to any breast and chest surgery including when expanders are exchanged for implants.
When my frozen shoulder happened, I thought I had pulled a muscle. At first, I could manage the pain with Tylenol, but it progressively degraded to the point when I could not move my arm without a shooting pain. To manage the situation, I tried not to use that arm and the net result was a frozen shoulder. I should have called my oncologist when the pain first occurred, but I had no idea at the time that it was related to my breast cancer surgery. As I said, I merely thought I had pulled a muscle.
After discussing this with my oncologist, I received a prescription for six weeks of physical therapy twice a week. The therapy included massage therapy, and more, but different, range of motion exercises. Since this was a nerve condition and not a muscle pull, the therapy that seemed to help the most was TENS therapy.
Transcutaneous electrical nerve stimulation referred to as TENS is a therapy that uses low voltage electrical current to provide pain relief. A TENS unit consists of a battery-powered device that delivers electrical impulses through electrodes placed on the surface of your skin. This therapy would be used at the end of each therapy session and was followed by an ice pack applied to the area for 20 minutes.
Although my situation gradually improved and the pain subsided, that shoulder is still weaker than the other and occasionally pain returns. It is interesting that it occurred in my left shoulder, and the left breast contained the most invasive cancer. Since the exact cause of the condition is not certain, I can’t be sure if this is at all relevant. Compared to cancer, this condition seems not to be of great concern to the medical community since there appears to be little interest in further research.
Another similar condition which actually occurs in the breast is a condition known as “Phantom Breast Syndrome” or (PBS). PBS is a condition in which patients have a sensation of residual breast tissue and can include both non-painful sensations as well as phantom breast pain. Patients with PBS may experience pain, discomfort, itching, pins and needles sensations, tingling, pressure, burning, or throbbing. The syndrome can start anytime following surgery, even years later. Incidence statistics vary across different studies, ranging from approximately 30% to as high as 80% of patients after mastectomy. It seriously affects quality of life due to the impact of the physical disability and emotional stress.
The prevalence of phantom breast syndrome (the sensation that a breast is still present after it is removed) varies between different studies, but is thought to occur in 10% to 55% of women following a mastectomy. Phantom breast pain and sensations usually begin within the first year following a mastectomy and often become less noticeable two years after surgery.
Symptoms that can be experienced with phantom breast syndrome are similar to those experienced after amputation of an arm or a leg (but usually less painful). These may include:
Itching (though scratching doesn't help and this can be distressing)
A pins and needles sensation
Pressure or heaviness
Electric shock type sensations
Premenstrual breast discomfort type of symptoms
The sensations may be felt all over the breast, just the nipple, or in localized sites.
Just like post-mastectomy pain syndrome, the cause of phantom breast syndrome isn't entirely clear, but it's thought that phantom pain and other phantom breast sensations occur via different mechanisms (although both are often present). Both central nervous system (brain and spinal cord), and peripheral nervous system (damaged nerves) may play a role. Nerves cut during a mastectomy may send an incorrect message to the brain, which is then interpreted abnormally. Or instead, without any input to the brain from the breast which has been removed, the brain may attribute messages coming from another area as coming from the breast.
Two of the most common drugs used for treatment are anti-depressants and Opioids. While there is some evidence that opioids can cause changes in the brain that might alleviate phantom limb pain, their use for phantom breast pain is usually discouraged because of their addictive nature.
An alternative is the use of topical treatments that have the advantage of fewer side effects. Examples of topical treatments that can be used are:
Topical lidocaine patches
High dose capsaicin patches (8%) have been approved by the FDA for the treatment of chronic pain. When used for chronic pain associated with phantom breast pain, capsaicin patches have been found to significantly reduce pain, and fMRI scans have confirmed changes in the brain that correlate with this improvement. Capsaicin 8% patches have also been found to provide significant pain relief in people who are living with chemotherapy-induced peripheral neuropathy. With neuropathy, it's thought that the patches may actually lead to regeneration and restoration of the sensory nerve fibers responsible for symptoms, suggesting that the patches may be beneficial over the long term rather than just while they are being used.
Phantom breast syndrome can seriously affect a woman's quality of life. For this reason, working with a cancer counselor may be an extremely helpful adjunct to physical treatments for the disease. Many oncologists believe that nearly anyone who is facing, or has faced breast cancer, could benefit from working with a therapist for support of the many issues that arise. Some studies (but not all) have even suggested that counseling and other forms of psychosocial support may have a survival benefit for breast cancer patients. I spoke in a previous podcast about my own experience with therapy, and how it was extremely helpful in coping with my diagnosis and the resulting stress and anxiety.
Therapies that can help alleviate symptoms focus on relaxation. Some examples are:
Many women hesitate to bring up phantom breast symptoms to their doctors, but of course, as always, it's important to share what you are feeling. These sensations are very common and normal, and addressing both the physical symptoms, and the emotional impact they have, can help ensure you are living your best life after mastectomy.
Again, we realize that we must be our own best advocates. If something doesn’t feel right, talk to your doctor about it. Of course, after having cancer, every new ache and pain brings the fear of possible recurrence. It’s just part of the new normal after a cancer diagnosis. That makes knowledge even more essential. By getting answers as soon as possible, and understanding each situation, we can prevent unnecessary anxiety and stress.