As I said a few years ago, I merged my thyroid cancer blog with my breast cancer blog to make sort of a " two-fer" blog. I devote most of my blogs to issues dealing with thyroid cancer, however. Mostly because I feel like there are fewer thyroid cancer blogs than breast cancer blogs. So I feel that there is a greater need for information about thyroid cancer.
I have been experiencing some phantom breast pain for some time now. I did not know it was a "actual thing" until recently. Any chest pain after breast cancer surgery/reconstruction should be immediately addressed with a patient's physician or surgeon, of course. When other possible causes have been ruled out, then perhaps the pain, itching, pressure, etc, can be attributed to phantom breast pain. I think that most people have heard about phantom limb pain or sensory perception in a missing limb, but as I said, I had never heard about phantom breast pain until recently. So what is it and how is it treated?
I have read that anywhere from 10% to 60% of women have phantom breast syndrome after mastectomy. Phantom breast syndrome means that a woman has the sensation of a breast ( or breasts in my case) being present after removal. This can be temporary, but up to 50 % of women have chronic breast pain after surgery for breast cancer. This pain could be a symptom of phantom breast syndrome or nerve cell damage after surgery.
Other phantom breast syndrome symptoms, besides pain, include the following:
* itching ( usually deep inside of the chest wall, and not relieved by itching)
*tingling
* pressure or a heavy feeling in the chest area
* a burning or stabbing sensation
* throbbing
* an electric shock type sensation
What can cause phantom breast pain or some or all of the symptoms mentioned above? The central nervous system ( the brain and spinal cord) may receive incorrect messages or signals from the damaged nerves caused by mastectomy. One study found that this syndrome may be more common in younger women and/or women who are more educated. The only reason that I can imagine that would explain why younger or more educated women may have more phantom breast pain, is that perhaps women in these groups see their doctors more often and possibly feel more comfortable discussing their symptoms to their physicians.
Sadly, I did not have any after care, other than checkups from my surgeon and oncologist, after my breast cancer surgery and treatment. It was shocking and confusing to me to go from such structured treatments and surgery to being " on my own". What was I to do now? I have a very supportive family and group of friends, but no one understands what a breast cancer patient is feeling better than another breast cancer patient. I was not offered counseling or physical therapy of any kind after my medical treatment was completed. I felt, and still feel ( I fear that my phantom breast syndrome is chronic at this point) sensations of pain and intense itching that come and go, but have not completely resolved. The treatment options for chronic phantom breast syndrome (CPBS- my abbreviation, because I am tired of typing in the whole thing) are not any that I found suitable for me. This is not a one size fits all, so these options may work for others. They include:
* opioids in severe cases ( not ideal, as addiction is a real concern)
* anti-seizure drugs ( well known, and loved by some, include Neurontin( or gabapentin)
* antidepressants ( too many to list)
* Mexitil ( which is a medicine for abnormal hearth rhythms) not sure how this is supposed to work...
* the miscellaneous category, which include clonidine ( usually used for blood pressure) and others
There are also topical medications which have the advantage of fewer side effects; these include:
* topical lidocaine patches - please use caution here! These can affect the heart ( arrhythmias for example) and should only be used after talking to one's physician.
* Capsaicin patches( 8%)- these have FDA approval for treatment of chronic pain. As a reminder though, while they may be useful, patients should be mindful of the fact that this drug is derived from hot peppers and will bind to the skin making it difficult to wash off should the effect become too intense.
* CBD oil- with or without the presence of THC. In some states, the topical preparation with THC is legal and in other states it is not. In my state of North Carolina, the CBD oil with THC is not legal. I am using a CBD salve without any THC. It does contain eucalyptus, lavender and beeswax and is all organic. Personally, this works fairly well for me. Of course, the action of massaging the salve into my skin may be helpful as well.
Which brings up another important component of obtaining a better quality of life after breast cancer. Counseling- for the physical discomfort as well as for the emotional pain that breast cancer patients have to deal with. Counseling was never suggested to me. I just assumed that I needed to deal with the after effects of breast cancer on my own- in the best ways that I could. I feel very strongly that EVERY woman dealing with breast cancer should at least have the option of counseling. I have read that counseling after treatment/surgery for breast cancer may in fact increase the survival rate of some patients.
Even though I feel that traditional medicine is the first line treatment for breast cancer, and other serious health disorders, complementary alternative therapies can be an important part of the treatment. These could include the following:
* acupuncture
*massage
*yoga
*qigong
*meditation
*music therapy
*art therapy
* pet therapy ( who does not love to pet a dog or cat? Studies have shown that petting a dog for just 15 minutes can lower blood pressure by 10% and can even lower cortisol ( which is a stress hormone) in the body.
The above listed items are adjunct therapies- to be used along with but not in place of traditional medical treatments. They are pleasant parts in our treatment plans to help breast cancer patients, perhaps those dealing with CPBS, obtain better quality of life and outcomes.
Another important treatment, that may improve CPBS, as well as promote a better quality of life, is Physical therapy. This was not offered to me after my surgery for breast cancer. Some doctors feel that this is an important part of rehabilitation after breast cancer. I would have to agree with this. I would urge breast cancer patients, those with CPBS or not, to discuss a referral from their physician to a physical therapist who has experience helping breast cancer patients.
The takeaway from this blog about Phantom breast pain is that little is known about the prevention or treatment of this disorder. Even though I am late to the game, and have been dealing with CPBS for some time now, I am being my best own patient advocate and seeking out some effective ( or so I hope) treatment for the CPBS. I hope that by talking about this disorder, women who have been experiencing the symptoms of CPBS will seek out the appropriate help. Even better, I hope that newly diagnosed breast cancer patients will be able to recognize problems early and address their issues.
