Letting go of how I thought recovery “should look” was key to finding my path to emotional and physical recovery after breast cancer, a mastectomy, and breast implant illness.
Five years ago, I received a diagnosis of ductal carcinoma in situ (DCIS) breast cancer. I was devastated and totally surprised by the diagnosis. No one in my family had ever had breast cancer, and I didn’t know what to expect. I cried a lot in those first few months, even though my outlook was good.
I decided to have a mastectomy and then get breast implants when I was in remission. Getting breast implants was one of the worst decisions I made. I developed breast implant illness, but for almost 5 years I didn’t know why I was sick.
Until recently, breast implant illness was not considered to be an official medical diagnosis, but more research has emerged.
Breast implant illness is believed to be a chronic health concern in which your immune system is impacted by breast implants or the materials within them. More recent studies have suggested that there may be a link between breast implants and certain autoimmune conditions.
Symptoms of breast implant illness include pain around the implants, misshapen breasts, fatigue, breathing problems, headache, and more. These symptoms may also be caused by other autoimmune or connective tissue disorders like rheumatoid arthritis and systemic sclerosis.
A few months ago, I had my breast implants removed. My emotional and physical recovery has not happened instantaneously, but I’m in the healing process now. One maxim I’ve found to be particularly true about my experience dealing with a serious disease is: “It’s a marathon, not a sprint.”
Here are nine things I learned over the past 5 years navigating both DCIS and breast implant illness.
Some people will blame themselves and say, “If I hadn’t done this or that, maybe I wouldn’t have gotten cancer.” In reality, you might never know the exact reason behind a breast cancer diagnosis.
Maybe you had a clear genetic family history. Maybe the stress or injury from a previous
In that first year, I felt sorry for myself a lot. I was only 39 years old at the time of diagnosis, and it felt like I was in a nightmare. At the same time, I felt incredibly guilty because I knew my DCIS was caught at an early stage. I had a good prognosis, and I knew so many others didn’t.
It was hard to find the support I needed from my friends. Often, I found that what I actually wanted was for a friend to just let me vent without offering solutions.
Emotional self-care, support, and, if necessary, professional mental health services are crucial both during and after breast cancer treatment. I had the mistaken belief I would be able to just quickly bounce back emotionally without actively working on it. Don’t do what I did. Prioritize your emotional and mental health.
You may want to consider online or in-person breast cancer support groups, as well as individual counseling. Larger cancer treatment centers often have resources like classes, programs, and groups for people living with breast cancer as well as for people in remission.
It’s an emotional process when a person with breasts is told they must have any kind of chest surgery. Letting go of the idea of having perfect breasts, or having nipples at all, is a difficult change. Now, I can joke about how nipples are overrated — before, not so much.
Many people who go through mastectomies will have to adjust to a drastic and sometimes unwelcome physical change. Someone who has had a unilateral mastectomy, like me, must also adjust to visible asymmetry between the two breasts, where one breast might remain the same and the other side is flat or nearly flat.
Following a double or unilateral mastectomy, some breast surgeons and plastic surgeon teams recommend scheduling a breast implant surgery or fat transfer surgery as quickly as possible. Other surgeons suggest leaving time to recover from the mastectomy first. My advice is not to try for surgical perfection as quickly as possible, and instead focus on healing, physically and emotionally.
After surgery, you may end up with scars or noticeable differences in how your breasts feel and look. All of these postsurgical changes can lead to an extended period of emotional adjustment. It’s OK to take your time making that adjustment.
Another consideration for people with mastectomy and lumpectomy medical histories is chronic pain. Long after the surgery, you may experience different forms of mild to severe discomfort. Some people experience both numbness and intermittent tingling sensations, known as phantom pain.
Another medical condition known as lymphedema, which involves swelling of the arm and armpit tissue following the removal of or radiation damage to the lymph nodes, may also require regular long-term medical care. Ignoring physical changes could potentially backfire in the long run.
I was shocked after receiving my diagnosis, and my initial reaction was to go separate myself from the world and keep everything a secret. I realized that this wouldn’t do anything to help me or the people in my life. After a few weeks, I started to tell everyone, including people I had not spoken to in years. Connecting with these people I cared about helped me avoid feeling isolated.
I don’t regret sharing my diagnosis, but I did learn that sometimes you don’t get the warm or compassionate response you were hoping for. However, you will find out who your friends really are after a breast cancer diagnosis and make new friends, especially fellow “breasties.”
Join a support group, virtual or in person, if you are having a tough time. As the joke goes, it’s not a club that you may have wanted to join, but once you’re a member, you meet the most amazing people.
Most specialists work together with and closely monitor breast cancer survivors over a 5-year period. As part of this aftercare, working on mental and emotional health is essential. Some survivors may experience significant anxiety and stress over whether breast cancer will return at a more advanced stage, sometimes for years after the initial diagnosis.
In my case, my anxiety and stress levels become incredibly more pronounced when I see specialists during annual mammograms, sonograms, blood tests, and other regular procedures. Journaling helps soothe my anxiety and get back on track with my emotional recovery.
Chronic fatigue is a mainstay for people who have experienced breast cancer, even after treatment has ended. In the early weeks and months of treatment, in the midst of chemotherapy or recovering from surgery, it can be hard for partners, caretakers, relatives, and friends to fully understand what you are going through.
People may question why you are not “back to normal” when your treatment is considered complete. Know that there is no timeline for recovery, and you will learn to operate at a new normal.
Cancer patients and survivors have better clinical outcomes if they engage in self-care, seek out support, and have access to mental health support.
In addition to group therapy, teletherapy and individual counseling can help improve your mental health.
It’s normal to have some days when you feel exhausted, but it’s important to take action when something doesn’t feel right. Persistent fatigue or unexplained symptoms could be linked to a separate, coexisting autoimmune issue or could be an indication of breast implant illness.
The Food and Drug Administration has also recently recognized breast implants as a potential cause of a rare type of cancer called breast implant-associated anaplastic large cell lymphoma (BIA-ALCL).
Going to a doctor for a full physical is necessary to rule out other conditions like thyroid issues, asthma, diabetes, and cardiovascular health concerns.
These conditions are not always mutually exclusive, and preventive healthcare and testing are the only way to take care of yourself. Trust your body and remember that you are the only one who can tell when something feels off.
It’s important to remember that everyone’s experience with breast cancer is different — and that’s OK. It’s not productive to compare your journey to other people’s journeys.
Following treatment, some people may feel ready to jump right back into what life was like beforehand — hectic jobs, caring for family members, busy social lives. Some might be visiting the gym several times a week just a few months out from treatment. Others might take months before they feel physically able to grab a cup of coffee with a friend. Everybody is different.
Recovery is hard enough without measuring your progress against the progress of others. It’s essential to prioritize what’s best for you. For me, letting go of how I thought recovery “should look” was key to finding my path to emotional recovery after breast cancer.
Pamela Appea is a New York City-based independent journalist who covers health, wellness, and other topics. Her work has appeared in Glamour, Salon, Wired, Newsweek, The Root, The Independent, Prism, The River, and elsewhere. You can follow her on Twitter.