- A mother of two from Ireland with a history of benign cysts was told the lump in her breast was nothing to worry about, but it turned out to be breast cancer.
- As part of her treatment plan, Rachel Akkoç also underwent surgery to remove the tumor from her left breast and the cancerous growths on that side of her body. But after surgery, she developed lymphedema.
- Lymphedema is a condition in which extra lymph fluid builds up in tissues and causes swelling, usually in the arm and hand. Lymphedema in the arms and hands is a common side effect of breast cancer surgery and radiation treatment.
For Rachel Akkoç, it all started in 2016.Read More
“I was assessed and told everything was OK, that the pain was most likely cyclical, and I could benefit from taking evening primrose oil,” she continued.
“But in my heart of hearts, I had a feeling that it was something more sinister — and if I had known then what I know now about breast cancer, I would certainly have sought a second opinion, as cancer in dense breasts is often hard to detect because it appears white on the mammogram.”
Rachel’s Breast Cancer Diagnosis
Two years passed before Rachel’s symptoms began to get worse. She was experiencing “stabbing pain,” so she went back to her doctor, who discovered a lump in her armpit.
Rachel had felt this lump herself as well, but she assumed it was a swollen gland or just another benign cyst, she said, since she has a history of cysts.
The breast lump prompted Rachel’s general practitioner to refer her to a breast clinic for another assessment and opinion on what the lump could be. It was at this point, she said, that she began to worry that something was “seriously wrong.”
“By the time the mammogram was done, I knew something was up and began involuntarily shaking from fear,” she said. “… I was told that I would need three biopsies on the left breast and the armpit. Then I was brought to see the consultant and I remember the nurse placing a box of tissues in front of me, so I knew it was going to be bad news — and it was.”
“I was told straight away that I had breast cancer and biopsy results would reveal more information,” Rachel added.
The further tests would reveal that her breast cancer was stage 2 hormone sensitive breast cancer — invasive ductal carcinoma. The doctor told her the cancer “was more than likely also in my lymph nodes on the left side.” She received her official diagnosis in November 2018.
“I was told that I would need chemotherapy, surgery, radiation and endocrine therapy — basically the works,” Rachel said.
“The consultant said they would also need to see if the cancer had spread anywhere else in my body, so I underwent ‘staging scans’ throughout December and the ‘not knowing’ whether or not I was riddled with cancer over the Christmas period floored me both mentally and physically and I spent Christmas Day in floods of tears.”
Thankfully, in January 2019, Rachel was told there was no evidence that the cancer had spread further.
Rachel’s Breast Cancer Treatment
Once Rachel began treatment, she said she felt like the “walking dead” as she found it to be extremely hard on her body and very isolating.
As part of her treatment plan, she also underwent surgery to remove the tumor from her left breast and the cancerous growths on that side of her body.
But after surgery, she developed lymphedema in her left arm, which caused it to swell. Rachel now has to wear a compression sleeve and undergo daily lymphatic massage.
“I’m two years into a 10-year plan and to say that I’m living for the day it finishes, is an understatement, as most days I feel like a 90-year-old woman,” she said. “But it’s a necessary evil and if it prevents my cancer from coming back, then it will have been worth it.”
Lymphedema is a condition in which extra lymph fluid builds up in tissues and causes swelling, usually in the arm and hand. Lymphedema in the arms and hands is a common side effect of breast cancer surgery and radiation treatment.
Lymphedema can happen shortly after treatment or even years later.
SurvivorNet experts say it is critical that you monitor for swelling since detecting lymphedema early is key. While this condition is uncomfortable and can be painful, there are a number of ways to manage it, as there’s no cure.
Managing the Pain & Swelling
While there’s no cure for lymphedema, there are a number of ways to manage the symptoms, Dr. Dung Nguyen, a clinical associate professor at Stanford Medicine in the division of plastic and reconstructive surgery, previously told SurvivorNet. (As previously mentioned, lymphedema is primarily a side effect of breast cancer treatment, and we spoke with Dr. Nguyen about lymphedema in breast cancer patients specifically.)
“We have surgical options as well as non-surgical options that help to control the progression of the disease,” she said.
When a patient presents with stage 0 lymphedema, typically doctors will start with conservative therapy, which includes physiotherapy (treatment to restore, maintain and make the most of a patient’s mobility, function and well-being) and compression garments.
Patients who present with stage 1 lymphedema are surgical candidates, she said. The most common form of surgery that offers effective results is lymphovenous bypass, which is a procedure that involves identifying obstructed lymphatics in the patient’s extremity and then bypassing it to a working superficial vein.
Typically, Dr. Nguyen said, when a patient presents with stage 2 lymphedema, “this is (a) more advanced disease where they tend to have recurrent infections.”
“In this group of patients, vascularized lymph node transfer is the option of choice,” she said. “That is because with lymph node transfer, the lymph nodes themselves will bring lymphatic tissue to the extremity and help fight infection.”
The risks and the rate of infection significantly decreases with lymph node transfer, she said.
In patients who present with severe lymphedema, the first approach is to debulk the dense fiber fatty tissue that’s built up.
“We do this using a technique called dry liposuction,” Dr. Nguyen said. This technique is done by extracting the tissue from the extremity using a suction device.
“Once the patient has recovered from the surgery — and this typically takes a good year to year and a half — then that patient can become a candidate for procedures like lymph node transfer or the lymphovenous bypass procedure to help re-establish the lymphatic drainage system in the extremity,” Dr. Nguyen explained.
Contributing: SurvivorNet staff reports