Surviving Survivorship

You are about to undertake a new, leg of your journey. This one is all about adjusting to your life as a breast cancer survivor. In many ways, it will be a lot like the life you had before, but in other ways, it will be very different. Call it your “new normal.”

Not everyone, who has had cancer, likes the word “survivor.” The reasons for this may vary. For instance, some may simply identify more with being “a person who has had cancer.” Or if they are dealing with cancer every day they may describe themselves as “living with cancer.” Therefore, they may not think of themselves as a survivor.

Technically, you become a Breast Cancer Survivor on the day that you are diagnosed. However, many woman don’t really feel like survivors until they’ve completed treatment, therapy or surgeries. Others have told me that they have really never felt like they are survivors and don’t care for the term. No matter what your stance on survivorship is, it’s helpful to know how the medical community thinks of it.

I met a wonderful woman, in my oncologist office, who has been a survivor now for three years, this time. But her first go round was over a decade ago. She told me that finishing very toxic treatments, which was very debilitating, she was encouraged to go home and heal on her own. She told me how she had received excellent acute care, but felt incredibly vulnerable mentally. She was never offered any mental rehabilitation services, which she said she desperately needed. She told me that as a mental rehabilitation physician (physiatrist), she came to realize that nearly everyone with a serious illness or injury – from strokes to sports injuries – receive individualized rehabilitation interventions, except for cancer survivors.

After her second bout with breast cancer, she became part of a group of cancer survivors at her church. Then she started inviting people who were patients at her Oncologist office. And now they meet every other week to talk about how they are coping with treatment, and the daily riggers of life.

Since her second diagnosis, she has also changed her focus at work. Changing from standard care to include cancer rehabilitation interventions. To help survivors heal as well as possible whether they are cured, in remission or living with cancer as a chronic disease.

She explained to me that everyone who goes through cancer treatment, such as radiation and/or chemo, has a document that explains what was already done, what is recommended now and what should be evaluated in the future. And that Survivorship care plans are an excellent idea and are being implemented at many hospitals and cancer centers across the United States.

Physically surviving surgeries and treatment isn’t the extent of your survival. The mental impact of loosing your breast is more than you will ever expect it to be. What once was will never be again…reconstruction might resemble the old with clothing over them, but it is not the same. They are merely an accessory put under you skin and muscle to fulfill your vanity. Talking about your loss helps you to gain mental stability. Survival is both physical and mental…strive to over come all the physical battles and mental anguish that goes with the changes to your body.

I had a wonderful woman named Jennifer, a Registered Nurse, who called after I was registered as a Breast Cancer patient. She explained to me that many insurance companies don’t tell you, neither do the doctors, that mental health is also covered under your treatment plans and these services could be requested at anytime I might need them. She asked if I would give her my appointment schedule…and she called a day after each appointment, asking how I felt about it and answering any questions I had. She did this for the first year after diagnosis.

It’s not uncommon for a woman to feel an emotional letdown once treatment is over. The crisis is over, but a lingering sense of anxiety remains. New stressors can enter the picture, too. Friends and family might have unrealistic expectations about how fast everyone concerned can return to their former lives. Plus, after facing one of life’s greatest challenges, some woman find their “before” life goals no longer fit.

Successfully negotiating the process takes courage, humor and a large measure of patience, starting with realistic expectations.

It’s not possible to “flip a switch” and immediately go back to a former life at full throttle. The body is in repair mode and women have to pace themselves. In fact, it may take a year or more to regain a sufficient level of energy and sense of well being.

While there’s a huge relief in being done with treatment, it can also be frightening. We tend to worry that cancer cells may be hiding and, without ongoing treatment, will be free to flourish and grow. We could experience “separation anxiety” from our oncologist. Every headache, cough or pain can take on ominous significance. The truth is a regular schedule of follow-up visits with your primary care physician is fine, and perhaps even better for you.

We also must cope with the longer-term physical effects of treatment. For instance, even after tissue sparing surgery or reconstruction, breasts usually look different than they did before. They feel different after radiation. Some women experience lymphedema and chronic pain in areas that have been radiated. Mental changes, or “chemobrain,” can result in problems with memory and the ability to focus. And ongoing treatments to prevent the recurrence of breast cancer, like tamoxifen, can have their own set of effects.

Returning to sex and intimacy can be intimidating, to say the least. Some women have enormous concerns related to body image (yes, I am one of these women) and self-esteem. Some may have been thrown into early menopause and experience all the associated sexual issues such as vaginal dryness, reduced libido (or complete loss of) and much less or absent response in places in the body that used to be hypersensitive. They have to relearn what works for them.

Life after breast cancer is, indeed, a different part of life and getting used to whatever it will be takes a while.

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