Lymphedema is abnormal swelling that can develop in the arm, hand, breast, or torso as a side effect of breast cancer surgery and/or radiation therapy. Lymphedema can appear in some people during the months or even years after treatment ends. Loraine has a problem with this now, therefore we are now doing therapy for it at home. This therapy will be a daily thing for one hour of each day of the rest of her life. It is another thing we never knew of before her diagnosis.
What is lymphedema?
Lymph is a thin, clear fluid that circulates throughout the body to remove wastes, bacteria, and other substances from tissues. Edema is the buildup of excess fluid. So lymphedema occurs when too much lymph collects in any area of the body. If lymphedema develops in people who’ve been treated for breast cancer, it usually occurs in the arm and hand, but sometimes it affects the breast, underarm, chest, trunk, and/or back. Loraine’s lymphedema is affecting her left arm and lower torso.
Why does lymphedema happen?
As part of a mastectomy for breast cancer, many people will have at least two or three lymph nodes removed from under the arm (sentinel lymph node biopsy), and sometimes many more nodes (axillary lymph node dissection). When breast cancer spreads, it usually moves into the underarm lymph nodes first because they drain lymph from the breast. Surgery and radiation treatments can cut off or damage some of the nodes and vessels that lymph moves through. Over time, the flow of lymph can overwhelm the remaining pathways, resulting in a backup of fluid into the body’s tissues.
I remember the discussion about the possibilities of lymphedema before Loraine’s mastectomy, but there was so much to absorb just in getting her well. We were aware of it well enough that I did write about it before she got it. But still, you do not understand the full ramifications until it has occurred. Lymphedema can sometime turn into a very debilitating condition if left untreated.
The Randy Suit
The first time we put Loraine’s compression garment on her, she reminded me of the little boy named Randy in the movie A Christmas Story. As you can see in the picture above, she is splayed out like Randy after his mother had bundled him up for the winter cold.
The “Randy Suit” is a pneumatic pump — also called an intermittent pneumatic compression pump — that has an inflatable garments attached to it. The arm and torso garments have multiple chambers that inflate one after the other to stimulate the flow of lymph in the right direction. So far, this therapy combined with visits to her specialized therapist seems to be helping. We are going to remain optimistic!
Some may question whether this treatment is worth doing. Lymphedema can’t be cured, but you can control the swelling and keep it from getting worse. So, in my opinion, it is definitely worth it.
Treating the chest pain that never goes away.
Shortly after Loraine’s mastectomy, she pulled a pectoral muscle and another muscle in her back. A year later, and these muscles are still knotted up. They cause her a great deal of pain which wakes her up at night in agony. The problem is compounded by the keloid scarring that was caused, or at least worsened by her staph infection that settled in before she had begun her radiation treatments.
After a year of pain, Loraine began a therapy for it this week. The treatment consists of receiving 200 units of Botox injected into nine locations with a long needle. The purpose of the Botox injections is to get the muscles to relax instead of remaining in a permanent state of spasm. She will get another 200 units of Botox soon, and will then undergo physical therapy to not only work the muscles by deep tissue massage. The therapy will also be focused on breaking down the keloid scarring to remove some of the tension on the pectoral muscle.
We have learned more than I care to know since Loraine’s breast cancer diagnosis. however, I would rather face all of her issues from a vantage point of knowledge. In my last article, I was hoping to not have much more to write in this series, but it seems there may be quite a bit more to come. Until then, God bless and thank you for your prayers and support.
Loraine’s strength and determination to fight are qualities that I revere. You, my friend, are an incredible caregiver. If I could award you a nursing license, I would. BRAVO! to the both of you!⭐ Your article removes the dread and ignorance that shrouds this procedure. Great work! Randy suit, no less… I love the sense of humor that you both display. ❤
Awe thanks, that means a lot.
My boyfriend suffered from lymphedema in his legs for years. The doctors could not figure out the cause of his lymphedema. They figured his lymphatic system just was not functioning properly. No one knew what to do to ease his discomfort, until we finally found a doctor that referred him to an oncologist. The oncologist sent him for massage therapy. The massage therapy worked for his legs, but the lymphatic fluid found another place to collect. It collected in his pannus (the bottom part of the belly).
After it collected there for a couple of years, it became a large mass. It became increasingly difficult for him to walk, because the mass hung almost to his knees. He found a plastic surgeon that said he would remove the mass. The surgery took 10 hours, and the mass weighed 69 pounds. There were more complications after the surgery.
The lymphedema was still there. The doctors never figured out why he had it, and the lymphatic fluid began collecting in his scrotum. There was nothing anyone could do to solve this problem. He had other medical issues, besides this. Eventually, this became the least of his worries, as his liver became a major concern.
He passed away last May.
Oh goodness, it sounds like you both went through quite an ordeal. I’m sorry for your loss, but appreciate you sharing your story with us.
My boyfriend suffered from lymphedema in his legs for years. The doctors could not figure out the cause of his lymphedema. They figured his lymphatic system just was not functioning properly. No one knew what to do to ease his discomfort, until we finally found a doctor that referred him to an oncologist. The oncologist sent him for massage therapy. The massage therapy worked for his legs, but the lymphatic fluid found another place to collect. It collected in his pannus (the bottom part of the belly).
After it collected there for a couple of years, it became a large mass. It became increasingly difficult for him to walk, because the mass hung almost to his knees. He found a plastic surgeon that said he would remove the mass. The surgery took 10 hours, and the mass weighed 69 pounds. There were more complications after the surgery.
The lymphedema was still there. The doctors never figured out why he had it, and the lymphatic fluid began collecting in his scrotum. There was nothing anyone could do to solve this problem. He had other medical issues, besides this. Eventually, this became the least of his worries, as his liver became a major concern.
He passed away last May.
Sounds like you both a really going through it. At least they warned you in advance. Sometimes the possibility of this side effect gets glossed over. I’ve had lymphedema as a result of surgery and chemo for several years now. Immediately following the surgery it was quite acute for the reasons you mention. Now, it has turned into a chronic condition. It isn’t, however, too bad. Mostly, I have to wear compression socks, make sure I get light exercise, and elevate at times.
Thank you for reading and commenting. My wife now has a special sleeve and shorts attached to a pump that keeps lymph moving as it should. It’s an hour long treatment she has to do every day to try to keep the lymphedema at bay. Thanks for sharing how lymphedema has affected you my friend. You will be in my prayers.
David