There is a common perception that once a woman finishes the major components of breast cancer treatment — surgery, chemotherapy, radiation and reconstruction — that she is on the other side of the disease, and her life can go back to normal. Nothing could be further from the truth.
Not only do these women need care and assistance during their treatments, but they also need our understanding and continued support once they are in remission.
Here are some of the realities of a breast cancer survivor’s “new normal” even when her medical oncologist gives her the great news that there is No Evidence of Disease (NED).
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The amputation of one or two breasts is a significant loss physically, emotionally, maternally and sexually. Even if reconstruction is performed, the manufactured breasts have damaged or missing nerves, so the feeling will never be the same.
Breast cancer survivors may have significant scars from lumpectomies and mastectomies, especially if they chose not to have reconstruction. Most patients who went through chemotherapy will also have a scar near a shoulder blade, where a quarter-sized port was placed under their skin to inject treatments directly into their vein.
While these scars aren’t usually on display to the public, a survivor is faced with a visual reminder of her breast cancer on a daily basis.
Chemotherapy treatments are chemicals that are released in a patient’s body targeted to kill cancer cells. Unfortunately, they can also attack healthy cells. Chemo has a long list of side effects. Many fade once the treatments are finished, but some can last much longer.
Breast cancer patients undergoing chemo usually lose hair from their entire body, including eyelashes and eyebrows. Their hair may come back in a different thickness, straightness or color.
There is a condition known as chemo-brain, where a patient’s head is described as being in a fog. Short-term memory loss, lack of concentration and mental slowness are cognitive dysfunctions that can persist for years.
Chemo treatments also can result in neuropathy, a nerve condition where patients lose feeling in their hands and feet. Their balance may be affected as well as their dexterity. Again, this condition could last for years. For some, it never completely goes away.
Radiation is a treatment where high-energy X-rays are focused on the area of tissue that has cancer. It is an effective way to kill diseased cells, but it also leaves lasting changes to the treated tissue area. The skin may have a different color, like a sunburn, and different elasticity from untreated skin.
Radiation, as well as surgery, can affect a patient’s lymph nodes, a system of white blood cells that is a part of the immune system. When these cells are damaged or removed, it can cause lymphedema, a condition where the patient’s arm swells with fluid. People suffering from lymphedema often wear skin-tight sleeves to keep the swelling down. They also may have to limit their physical activities as to not overly jar or shake their arm and limit how much they lift. This condition is irreversible.
Many women opt for breast reconstruction surgery after dealing with breast cancer. This is a far different and much more complicated surgery than a breast enhancement. A plastic surgeon performing a breast enhancement is typically dealing with a healthy breast tissue, skin, nerves and blood flow. Adding an implant to increase breast cup size is a fairly easy surgery when compared with what a surgeon has to do to re-create a breast when the tissue has been removed, the skin is damaged from radiation, the nerves have been severed and the blood flow is compromised.
The most common reconstruction surgeries require tissue to be moved from the lower abdomen (TRAM or DIEP flaps), or from a patient’s upper back (Latissimus dorsi flap) to their chest. Tissue can also come from thighs and buttocks to help reconstruct the breast shape. These surgeries have benefits but also have their own potential complications, including a higher risk for abdominal hernias or a loss of range of motion and back weakness. It also means additional scars on the woman’s body.
If an implant is going to be used as part of the reconstructions described in the previous paragraph, the doctor will start with a temporary expander. This implant will serve to stretch the skin, hopefully to the woman’s desired size. This stretching will be limited to what the skin and transplanted tissue can hold. The expander has a valve that the doctor will use to inject saline to continue increasing its size. This process takes several months. Finally, the doctor will switch out the expander for an implant, which requires another surgery. As with any implant, it will need to be replaced every 10 to 15 years.
None of these reconstructed breasts, no matter the process, have significant feeling in them. They may help recover a feminine physique, which may be important to a breast cancer survivor, but they will never truly replace their loss.
The type and classification of breast cancer will determine the drug regimens a woman will take once her treatments are over. Cancers can be fed by one of two hormones (estrogen or progesterone) and can also be classified according to whether or not there is an overabundance of the HER2/neu protein. Drug therapies are given to survivors based on these factors. The goal is to keep a woman cancer-free for five years, a benchmark at which point her odds of recurrence are significantly reduced.
Unfortunately, these therapies aren’t without their own complications. For example, if a woman’s breast cancer has tested as being estrogen positive, she will be given drugs that help block the effects of that hormone. These medicines will put her into a drug-induced menopause with all the side effects to go with it no matter what her age is. For younger women, this will affect their ability to become pregnant; for women already past menopause, these drugs increase the odds of getting uterine cancer. Many times these medications are paired with anti-anxiety drugs because of their side effects.
Recent studies have shown a benefit of staying on these hormone-blocking drugs for 10 years instead of five to help reduce recurrence. Some women experience this five- to 10-year stint of life-altering medicines and their side effects as an additional penalty for having breast cancer.
The fear of recurrence for a breast cancer survivor is significant, even when a woman has been given a clean bill of health. The odds are that 30 percent of all women with breast cancer in an early stage will end up having their cancer metastasize to other areas of their body, eventually leading to their deaths.
A NED diagnosis is worth being celebrated, yet the reality is that it just moves the survivor into a new category of being cautiously optimistic. Follow-up exams, appointments and scans will follow every three to six months for the next five years. After that point, it may change to yearly appointments for the rest of her life.
While follow-up care is extremely important, it also presents the opportunity for fear to come to the forefront of a survivor’s mind. These check-ups can be a very emotional time as someone is faced with the disease all over again. Until the scans again come back as “all clear,” the survivor is very much still fighting the effects of breast cancer.
Finally, while the rest of society’s persistent backaches, headaches, chest pains and stomachaches can likely be from a wide array of causes, when a breast cancer survivor has one of these unrelenting symptoms, she needs to see the oncologist again. Breast cancer is curable when it is located in the breast tissue. Unfortunately, when it metastasizes to a patient’s bones, brain, lungs or liver, it is only treatable, and then for only a measure of time.
Breast cancer survivors need and deserve the support of their family, friends and community not only when they are in their initial treatments, but for the remainder of their lives.
Celebrate their milestones with them, be mindful of their appointments and never expect them to be back to their old selves, as their lives are forever altered. Instead, ask them questions about what they are currently facing, educate yourself about their symptoms and embrace the new realities of their lives.
Chad Estes is a Boise photographer and writer whose project, “The Reveal Mission,” showcases stories of breast cancer survivors and fighters. Learn more at revealmission.org.