It feels so unfair: breast cancer treatment can cause lymphedema. This accumulation of fluid is often painful and can seriously limit your daily life.
Yasmine Esser9 september 2023, 09:00
To immediately clear up a misunderstanding: not every woman who has had breast cancer will experience a swollen arm, breast or armpit as a result of lymphedema after the treatments. Dermatologist Robert Damstra of the Expertise Center for Lymphovascular Medicine at the Nij Smellinghe hospital in Drachten estimates that nowadays between 6 and 30 percent of breast cancer patients develop lymphedema afterwards. That is considerably less than before, because breast cancer is now treated differently.
Until the late 1990s, all lymph nodes in the armpit were removed or irradiated as standard. That seemed safe at the time, to prevent metastases. Nowadays, operations are much more economical. For example, the sentinel node, also called the gatekeeper gland, is first examined. That is the first gland where the cancer cells go from the breast. If no cancer cells are found there, there is a good chance that the other armpit glands are also clean and it is not necessary to remove or treat everything there.
If metastases are found, irradiation of the armpit may be necessary. Or a so-called armpit toilet, in which all lymph nodes in the armpit are removed. The more treatment is done, the greater the risk of lymphedema. Logical: if many lymph nodes are removed, the lymphatic fluid cannot drain properly and fluid accumulation can occur. And that is edema.
The lymphatic system is located parallel to the blood vessels and plays an important role in the immune system. Lymphatic vessels drain the lymphatic fluid, which consists of fluid, cell debris and bacteria. This goes to the lymph nodes in the neck, groin, armpits and torso.
The lymph nodes contain white blood cells that purify the fluid from culprits such as pathogens and bacteria.
Sanne (54) was diagnosed with breast cancer at the age of 37. A few days after the first radiation treatments, she suffered from lymphedema.
“It controls my life. I’m always working on it, if not physically, then in my head. Enough exercise, sports. I massage myself several times a day, which is called self-drainage, and see a practitioner every other week.
The edema isn’t pretty, but I could live with that
I’m not one to complain about the arm sleeve or my compression shirts.
The worst part is the pain. Household tasks are a lot more difficult, it is not possible to hold something for a while or to make the same movement over and over again. For example, cutting vegetables is no longer possible. My arm then feels cramped, sore and heavy. Typing or sitting behind the computer for a day also hurts too much. I had to purchase speech software at work and was therefore no longer able to sit in the open-plan office with my colleagues. In the end I was completely rejected, I was not yet fifty years old at the time.
What bothers me is how nonchalant some doctors are about it. They don’t take it seriously and often don’t have answers to my questions. I’m lucky to be alive and with that fat arm or swollen chest I have to figure it out for myself, while lymphedema has so much influence on my life. There could be a little more attention and understanding for this.”
Chronic
Such a swollen arm can be simply annoying, but it can also be so painful that it has a major impact on your life. What makes the impact so great is that the condition is chronic. There is no cure, only learning to deal with it. Enough exercise is important, it stimulates the drainage of lymphatic fluid. Eating healthy also helps. Being overweight can increase the risk of lymphedema and worsen the symptoms. The extra body weight puts more pressure on the lymphatic vessels, which impedes the drainage of lymphatic fluid.
Furthermore, the treatment may consist of a compression device, such as an arm stocking and possibly massages from an edema therapist.
A swollen, painful arm and wearing an arm stocking are things that can have a major impact on the well-being of women, says plastic surgeon Tiara Lopez Penha of the Spaarne Gasthuis hospital in Haarlem. Yet they rarely talk about it. After breast cancer treatment, most women are happy and grateful to be alive and do not want to complain. “In addition, doctors often make light of it, which means that many women have the idea that their problems are not important,” says Lopez Penha, who received her PhD in 2016 on the quality of life of people with lymphedema after breast cancer. This condition is often more than just annoying, she says. “Some women can no longer work because of the pain. The condition also affects their self-image and their sex life. Moreover, that arm is a permanent reminder of the fact that you have had breast cancer. Even if you have been declared cured, you continue to feel like a patient.”
Sandra (46) sometimes suffers from a thicker arm due to lymphedema.
The physiotherapist taught her how to best deal with this.
“Just before my breast-conserving surgery, the doctors said: ‘It may not be necessary to remove all the armpit nodes, but we advise you to do it, then you can be sure that it is safe.’ This was a few years ago, it didn’t feel like I had a choice. All I wanted at that moment was to live. I thought: I have to go through this process and soon it will be over, then I can get my life back on track. I didn’t know that the aftermath might be even worse than the breast cancer treatments.
Six months after the treatments I noticed that my arm felt different. Tighter. As if there was a blood pressure monitor around it. The physiotherapist gave me exercises and they work well. I still keep it under control because of that, but I always have to pay attention. I no longer carry heavy groceries. Or shave my armpit. I only garden with gloves on.
Because all it takes is a small wound and my entire arm can swell and become red. I also no longer go to the sauna, even though I always enjoyed it. But the heat can trigger lymphedema and I do everything I can to prevent it from getting worse.
It took me a while to accept that I now have a chronic condition. I felt alone because I didn’t know where to go with questions. Other women who had had breast cancer never mentioned lymphedema. Now I think: that’s just how it is.
I’m glad I’m still here. Besides, I can do a lot of things.”
Lymphedema is the result of a disturbed drainage of lymphatic fluid. This may be congenital (primary), the lymph nodes or vessels do not work properly or are not constructed properly. The condition can also develop later in life (secondary), for example due to the treatment of breast cancer or other cancer treatments. It can also be caused by untreated varicose veins, muscles that no longer work due to an accident or illness, obesity, or erysipelas.
New treatments
Is there really nothing possible to permanently tackle this condition, Lopez Penha wondered. She investigated whether microsurgical treatment methods are possible for lymphedema in the arm. This concerns treatments in which small lymphatic vessels that are still intact are connected to another vessel. This would allow the moisture to escape and reduce the need for therapy with massages and arm stockings. This was already done in Asia, but it had never been looked at in a scientifically substantiated way.
“We looked at what was known in the field of lymphatic microsurgery and this laid the foundation for further research. This will be done over the next six years by the Maastricht UMC+ in collaboration with the Radboud University Medical Center and Erasmus MC.”
Another option is a lymph node transplant. This operation is possible in the Netherlands in a number of academic hospitals.
The plastic surgeon then moves one or more lymph nodes from another place in the body, usually the groin or neck, to the armpit. This transplant may improve the edema, but patients will probably still need to wear the arm stocking. Dermatologist Robert Damstra has his doubts about this method. “The chance of improvement is small. So in my opinion, such a treatment creates false expectations.”
Although lymphedema in the arm has become less common in recent years, more women are experiencing lymphedema in the breast. “This form can occur during breast-conserving operations and radiation,” says dermatologist Robert Damstra. “Because the treatment has changed and the axillary nodes are spared more, there is a small group of patients who suffer more from edema in the breast. This is a different form than edema in the arm, so the treatment is often different.”
Second opinion
Although a miracle cure does not (yet) exist, it is advisable to seek help so that the edema does not get worse. Damstra: “Sometimes the arm becomes thicker immediately after treatment, but it can also happen two years later. Women may have gained weight or exercised more or less. But also have this checked by the oncologist to rule out that the cancer has returned.”
Both Damstra and surgeon Lopez Penha emphasize that women who are dissatisfied with the treatment or do not feel taken seriously can request a second opinion. Lopez Penha: “Lymphedema is an underestimated and debilitating condition. If someone says to you, ‘Oh, that’s nothing,’ keep looking or get a referral.”
Anita (60) developed lymphedema in her breast a few months after her breast cancer treatments.
It inspired her to develop a special bra, the Bratelle.
“My chest became rock hard and my skin was tense. In the beginning I had to go to the edema therapist three times a week, terrible! They were not pleasant treatments. I lay there half naked and she had to massage away some kind of clay, or at least that’s what it felt like. It was also a burden on my agenda, as I had a busy job at the time. And I was healed, right? I didn’t want to have a therapist appointment three times a week.
I decided to look for a way to massage away the lymphatic fluid myself. In collaboration with a designer I have developed a special bra, the Bratelle.
It is made of 3D knitted yarn and the ribs in the fabric take over the massage, as it were. In combination with compression, this ensures that moisture is removed. I hardly ever have to go to the edema therapist anymore!
What started as a personal quest is now a foundation. In recent years we have helped about five hundred women. It would be nice if the bra was included in basic care. Arm stockings are reimbursed and that is nice, but there are also women who have lymphedema in their chest and they have to pay for everything themselves. Of course I’m not happy that I got breast cancer, but I can now help others. This is rewarding and valuable work.”
9 september 2023
2023-09-09 14:51:51
#Lymphedema #breast #cancer #controls #life
