Over the past 2 decades, the media
has painted a picture of the ideal breast cancer survivor. We see a smiling white middle aged woman telling the world how she beat breast cancer with her positive attitude and her unwillingness to ever give up the fight. She doesn’t just stop with the lessons of how she beat breast cancer. She continues her story with how having conquered cancer, her whole life has changed for the better. To her, cancer was the greatest gift she ever received from the benevolent universe.
We sometimes hear that her reconstructed breasts look better than
they did pre-cancer. How lucky she was to have gotten a free boob job! The hair loss was a bit of a drag but it grew back better than before. She speaks of how breast cancer has brought her closer to her friends and family. Breast cancer was a tiny blip in her life, no more annoying or life threatening than a root canal. Breast cancer has been described as the “good” cancer to get as everyone wears pink, races around a lot, and nobody ever dies.
I have no doubt that this does represent reality for some breast cancer survivors. It is also possible that some of these smiling women have repressed the worst aspects of their breast cancer experience and are choosing to only publicize the positive things that happened along the way. They present their stories through a gauzy pink veil that filters out the bad memories leaving only the good. We don’t see pictures of the very young or the pregnant or the Stage 4 breast cancer patients. We don’t see many pictures of women as they are trudging through treatment, pale and bald. We don’t hear about the single mothers who go through treatment with little family support. We don’t see the black faces or the Asian, or the Hispanic ones. The media has painted a simplified and unrealistic picture that doesn’t accurately reflect the many faces or feelings of breast cancer.
The problems with this stereotype are many and they are troubling. Most survivors I”ve met in person or online do not relate to breast cancer being the greatest experience of their life. They remember the fear they felt when first diagnosed. Until they had the tumour removed and all the tests done, they didn’t know if the cancer had spread and if they were already dying. They remember the pain of their treatment, whether it was surgery, chemotherapy, radiation, or some combination of all three. They may have received a lot of emotional and practical support during the diagnostic and the early treatment phases of their cancer only to find people slipping away the more time passes.
If they had reconstruction on one or both breasts, there may have been multiple painful surgeries involved with tissue expanders, implants, or the removal of another body part (skin and muscle from the stomach, back, or buttocks) to create the new breast(s). The end result of this surgery may still leave them with body image issues with the reconstructed breast not matching the natural one, the implant becoming hard and encapsulated with scar tissue, or even the body rejecting the transplanted body part and the person being left with no breast(s) at all, either temporarily or permanently. And what is never mentioned is that even if the reconstructed breasts look cosmetically wonderful, almost all feeling and sensation is gone. Forever.
Women are often fearful of the cancer recurring again or it spreading and metastisizing to their bones, lungs, liver, or brain. They may fear leaving young children behind should their cancer spread and they die. They may find their shaky marriages dissolving from the extra weight of a cancer diagnosis. They will soon learn who their true friends are and will watch others in their life simply disappear as news of their breast cancer becomes known.
About 10% of breast cancer patients will learn that they are already Stage 4 at the time of the initial diagnosis. Another 30% will reach this stage eventually even if their initial cancers were caught at an early stage. There is no Stage 5. Stage 4 means the cancer has already spread elsewhere in the body. It can only be treated, not cured. Stage 4 is the only kind of cancer that kills although medical advances have allowed women to live longer with Stage 4 cancer than ever before. But for these women, chemotherapy and other treatments may go on for the rest of their lives, to keep the cancer from spreading even further. They will never “beat cancer”. Their stories aren’t popular in the media.
Other women like myself will have cancer recurrences or grow new primary breast cancers in the same or the other breast. We do not die from local recurrences but the fear is even greater the second (or third or fourth time around). We know we are pushing our luck on the cancer wheel of fortune. How often can we keep catching recurrences in time before they spread into distant body parts? You don’t see many women in commercials saying I thought I beat cancer once but then it came back and I am in treatment again. This doesn’t fit with the storyline that if it is caught early and you survive 5 years, you have beaten cancer.
Stage 1 – 3 patients may be strong and full of fighting spirit while going through treatment but then fall apart when treatment ends. This is a fairly common occurrence as it feels that
your medical safety net is gone without the constant monitoring of your health by medical professionals. While active treatment can be very tough, there is still something reassuring about being seen by a medical team on a regular basis. Also, cancer treatment is like a full-time job with numerous appointments to see oncologists, plastic surgeons, and lab technicians. It is easy to set milestones and goals – 1 chemo down, 5 more to go. Treatment gives structure to your days and a final goal to keep working towards – the end of treatment. When that abruptly comes to an end, many survivors are left wondering, “what happens now?”
Friends and family may not be as supportive now that treatment is over. They feel that the worst is over now that you have completed surgery , chemotherapy, and/or radiation. They move on to other people and things, leaving you alone at a time when you might need their emotional support the most.
You may feel pushed and rushed by others to immediately resume your pre-cancer life once treatment ends and to put all that negative cancer stuff behind you. You may question yourself as to why you aren’t bouncing back from treatment more quickly like your friends, family, and the pink media ladies say you should. Your doctors may tell you to find your “new normal” before you even have had time to reflect on the very abnormal process that you have just experienced.
Once you have had cancer, every follow- up oncologist appointment and every new scan, mammogram, or blood test brings anxiety levels up sky high again. Every new headache could be a brain tumour and every new ache and pain could be a sign that the cancer has spread to your bones.
You may wonder to yourself what you are doing wrong – why you didn’t find your pot of gold at the end of the pink rainbow.
It does a disservice to those newly diagnosed and those just starting their cancer treatment process to portray breast cancer survivors as a uniformly brave, strong, courageous, and positive group of women. We survivors are all those things and more. But we are also scared, anxious, in pain, confused, disoriented, and angry at times. And that is normal. And that is okay.
Doctors have known for decades that a cancer diagnosis is an extremely stressful event and freely hand out anti-anxiety medication throughout the treatment process. They have heard their chemotherapy patients complain for years about “chemo brain” where forgetfulness and short term memory loss are common features that linger on after chemotherapy ends. They know many women suffer from the shock of a completely altered body with their breasts removed by mastectomy, their hair lost to chemotherapy, and their reproductive systems pushed into early menopause, either temporarily or permanently, by chemotherapy. New American studies have shown that approximately 25% of breast cancer patients will suffer from post-traumatic stress disorder sometime between diagnosis and the end of treatment. European studies have placed that number at closer to 50% of patients.
Many of these newly diagnosed women are in their 20’s and 30’s, just starting careers or families. Many received their breast cancer diagnosis while pregnant or while still breast feeding shortly after giving birth. Others are encouraged to undergo fertility treatment before starting chemotherapy so that their eggs can be frozen in the event that premature ovarian failure or permanent menopause prevents a future pregnancy.
More women each year are being tested for genetic defects that can hugely increase their risk of breast and ovarian cancers. If they test positive for a mutation, they will be strongly encouraged to have a double mastectomy and to have their ovaries and fallopian tubes removed by age 35. If they test positive for a mutation, this becomes a family affair with the whole immediate and extended family having to decide if they too should be tested to see if they also have the same genetic mutation. If a woman already has children, she will learn that each of her children, male and female, have a 50% chance of also inheriting this mutated gene. As genetic testing is not carried out on children, she will have to wait until they turn 18 and decide whether to get tested to see if she has passed her mutated gene onto her children.
It can be encouraging to read stories of women who have survived for many years after a cancer diagnosis without a recurrence or without the cancer spreading. All the memes on the internet urging you “to fight like a girl” or “to beat cancer’s ass” or even the more blunt and to the point, “Fuck cancer”, can be very empowering for both the woman undergoing treatment and the long term survivor. But I know for myself that it is difficult to stay in fighter mode 24 hours per day, 7 days per week. Again, speaking only for myself, I can’t live on a constant diet of positivity messages when I read or talk about cancer. It is like living on a high sugar diet. After awhile, the sugar buzz fades and I come crashing down. Hard.
Cancer has definitely changed my life, not always for the better. I need to read about the struggles of the newly diagnosed, the stories of women going through treatment, and especially the stories of the women with Stage 4 cancer. I need the grit of painful reality so I don’t forget where I came from and what I went through. I need these stories so I don’t sugar coat my story for the next person struggling with some of breast cancer’s less positive realities, thinking to myself that cancer or treatment or facing multiple new primaries wasn’t all that bad. It was that bad and some days still is. What is your cancer story? Do you prefer only to read positive stories or can you make room for some less positive ones as well?
Sharon Greene November 23, 2014
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