Cancer Leaves a Mark - Coping With Disfigurements

by Jane Ashley

We don’t always think about the physical disfigurements that cancer may bring to us. Surgery is often the best option to achieve a cure or long remission or extended period of NED. As we have learned from each of our diagnoses, cancer does not pick convenient locations.

Head And Neck Cancer

Cancer can occur almost anywhere in our bodies. Cancer occurs in virtually inaccessible locations. Cancer occurs in organs essential to bodily functions. Cancer is an aggressive disease — getting rid of it can be disfiguring, create loss of a bodily function and cause quality of life issues.

Realizing that others have faced what we are about to experience gives us strength and courage and the will to move forward with treatment. Some procedures that cause physical disfigurement are obvious — others produce unseen disfigurements that impact bodily function and self-image. Let’s look at some examples.

Types of Physical Disfigurements

Many physical disfigurements are visible while others are hidden by clothing. Hidden disfigurements are just as difficult for patients because they, too, impact our self-esteem and confidence. We see every time we get dressed or undressed.

Amputation. Amputation may be required for bone cancer. When cancer occurs in the arms or legs and has invaded tendons, nerves or blood vessels, an amputation may be the only option. When bone cancer occurs in the pelvis or jaw, a wide excision (to obtain clear margins) is performed, and bone grafts are used to rebuild the bones removed. Very skilled surgeons are sometimes able to perform reconstructive surgery after amputation to help preserve function.

Amputation

Head & Neck Surgery. Patients suffer from scars and muscle atrophy in their necks that can’t be easily hidden. Changes in speech patterns and our voices cause lack of confidence and may lead to social isolation. Some patients may have to have part of jaw bone removed creating self-image problems and lack of self-assurance out in public. Cancer of the larynx may require removal of the patient’s larynx (voice box) — a hole (known as a stoma) is created in the throat for the patient to breath. These patients need extra support as they adjust to their new normal.

Incontinence. Incontinence is the inability to control of one’s bladder or bowels. Patients who have bladder, anal, rectal or colon cancer may suffer incontinence as a result of treatment. Surgery or radiation may damage nerves or muscles that control evacuation of our bladders or bowels. Some cancer survivors become reclusive and rarely leave their homes. However, there are a wide selection of products to aid with incontinence. Pelvic floor physical therapy helps some patients regain control. We shouldn’t feel ashamed that a cancer treatment has caused us to be incontinent.

Mastectomy. Mastectomies are the #1 cause of physical disfigurements among cancer patients. If you include lumpectomy scarring, breast cancer accounts for a significant amount of physical disfigurement and loss of self-esteem. Each patient selects their way to address the changes to their body. Options include reconstruction, going flat or decorative tattoos to camouflage the scars. There is no right or wrong way to cope with the aftermath of mastectomies — each patient decides what is right for them.

Ostomy. An ostomy provides a way for urine or stool to leave our body when cancer affects our bladder, rectum, anus or colon. Sometimes, an ostomy is temporary to allow healing after surgery or an injury. Other times, it is permanent because we must have aggressive surgery to save our life. Ostomies are needed by other people too, not just cancer patients, because of disease or injuries.
I have a permanent colostomy, because of my advanced rectal cancer. My oncologist told me on my first appointment that I would need an ostomy (due to the location of my cancer). I did my best to put my worries on the “top shelf” of my brain until the time came for my surgery. I joined an ostomy support group before my surgery so that I would have people who could help me afterward. I’ve adjusted well, exercise regularly, eat almost anything and wear fashionable clothing. Ostomies provide good quality of life without the worry of accidents and urgency to find a bathroom.

Scars. Scars may be seen or unseen. But when we see them in the mirror, they are “forever” a reminder of our cancer experience. Mastectomy, colon and liver resections and wedge resection scars look like roadmaps. Though not visible to the public, we see them. Head and neck and thyroid cancer patients have visible scars that rob them of self-confidence.

Some breast cancer patients have radiation fibrosis scars on their upper chest. Women who receive pelvic radiation for cervical, ovarian, rectal or anal cancer may develop vaginal stenosis causing painful sexual intercourse or preventing sexual relations completely.

Head and neck cancer patients experience scarring and narrowing of the esophagus from radiation, necessitating dilation of the esophagus to swallow more easily.

Larynx

Skin cancer patients experience scarring too. Because melanoma is more likely to spread than other types of skin cancer, doctors remove a larger margin. So scars are larger, about twice as large on average as for basal or squamous cell skin cancers. Special make-ups help camouflage skin scarring.

Ways to cope with disfigurement

Every survivor has to find peace with the aftermath of their treatment. If we don’t make peace within ourselves, we won’t enjoy the life we fought so hard to save.

We are not alone. We are not the first person to experience physical disfigurement from our cancer treatment, nor will we be the last. My surgery, abdominoperineal resection aka APR surgery, sounded so complex that I wondered how anyone could survive. But I found comfort in knowing that many patients before me had this surgery and lived normal lives afterward. If they could, I reasoned, then I could survive it too and thrive afterward.
Sense of humor. Sometimes, laughing about how dire how situation seems is the only way to cope. Trust me … with rectal cancer, I’ve got lots of funny stories to tell.
Positive attitude. A positive attitude goes hand-in-hand with a sense of humor. A positive attitude doesn’t “fix” things, but it helps us live each day more fully. We are stronger than we realize. We are braver than we imagined.
Counseling. Never underestimate the power of a skilled counselor to help you sort through your emotions and find peace.
Support group. Groups like WhatNext and specialized groups for specific medical issues help us realize that we are not alone. People in a support group are willing to share their experiences with new members so that we don’t struggle to find solutions for dressing, walking, or medical supply sources.

We can’t undo our diagnosis. We can’t avoid our potentially curative treatments because they are disfiguring. But with the help of our medical team, our family and our support group, we can find peace and live a full and meaningful life.

Has cancer left a mark on you? What scars or disfigurements do you have and how have they affected your life? Please leave a comment about it. 

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