Saturday, October 24, 2009

The challenges of breast cancer in young women

 Unique and Challenging

I just wished another friend of mine a happy 40th birthday. It reminded me of what I got for my 40th birthday just this year. Breast cancer was the furthest thing from my mind when planning my life at this age. I’ve been generally healthy and enjoying life watching my young boys grow up. I haven’t lived hard, I eat whole and organic foods, I rarely eat out at restaurants (never fast food), I exercised regularly; but all of that didn’t prevent me from getting cancer. Research is going on right now that is looking at how and why women get breast cancer and I’m a part of that study. Some say being overweight may trigger something; I’m not overweight. Some say an unhealthy diet high in fats and sugars may trigger something; my diet is free of processed foods and sugars with occasional low fat meat. Genetics is another place that is being looked at. I have no family history and I was tested negative for that magic breast cancer gene everyone is talking about. What is the smoking gun? Perhaps there isn’t any one smoking gun. Sometimes people just get cancer for some reason. I have been asked so many times why I think I got cancer. Who’s to say? What’s the difference now? Why look for blame? I have it and now I need to fight it.

Before my diagnosis, I had no clue someone healthy and young like myself could get this disease. It was the last thing on my mind to check for on any regular basis. Now as I’ve turned 40, I am finding out how many young women even younger than me get breast cancer. The challenging thing is that when we have even the slightest of symptoms, we’re often told not to worry, “you’re young”, “and it’s probably nothing to worry about”. So we go on with our young busy lives never letting it cross our minds that we could have breast cancer growing inside. I’ve complained of an inconsistent odd pain in one side of my chest for the past 10 years. I was told at one point it was because of exercise and given medication for asthma. The “asthma” miraculously disappeared one year, but the tenderness remained. Once my kids were born, breastfeeding on one side was extremely painful. I was told that was normal and to feed more on the painful side as that would possibly relieve the pain. It didn’t. As my kids got older, hugging them at times was painful. I’ve done self breast exams all these years and never felt a lump. My doctor was told of my tenderness and occasional sharp pain out of nowhere, but for years, she never felt a lump either. I no longer have that doctor. Anger and blame can be felt toward that doctor, but what’s the point. Even only 10 years ago, doctors were not instructed to think of looking for “breast cancer” in someone so young. It too has been the last thing on their minds. Even currently doctors are questioning whether instructing young patients in the practice of self exams is useful.

I’ve since learned that my experience is all too common. Young women do get breast cancer. 1 in 10 women with breast cancer are under the age of 40. Young women are more likely to be diagnosed with more aggressive and later staged cancer for many reasons. For one, because our tissues are young and dense, we are less likely to “feel” anything early on. (I still was unable to feel my lump until it was over 2” in size.) The next reason is one that has to change in the medical community as well as the community at large: our complaints and worries are not taken seriously. And finally one other popular reason is simply lack of early detection methods and knowledge in young women.

In fact, although breast cancer is more common in older women, about 13,700 women younger than 40 years of age will get breast cancer this year in the United States. I always thought breast cancer was an older woman’s disease too. The medical community tells you to get your “first” mammogram starting at age 40. I got mine at 39 and then it was too late. Even as I went through my testing process, my mammogram was unable to identify my large golf ball size tumor. I was given an ultrasound next which identified enlarged lymph nodes under my arm. It was the next thing, a biopsy that finally gave a positive diagnosis and visibly measured my tumor. A mammogram is nearly useless, but still done initially because that is the order of things currently.

Special Circumstances

Women under 40 who get breast cancer face unique challenges as they fight the disease. Most find less information and often less support than older women with breast cancer. “Your average 30-something doesn’t know another 30-something with breast cancer,” says Ann Partridge, MD, an oncologist at Dana-Farber Cancer Institute in Boston. “It’s true that most of the research studies in breast cancer are done on older women, but since the discovery of the BRCA genes, we are learning more about breast cancer in young women.” This may be true for some and I’m glad such a test exists, but I’m worried that young women are being told that if they have a strong family history of breast cancer to go get this genetic test, and if they have a positive result, they have a higher risk. I hear of so many stories of young women who meet that criteria test positive and then get double mastectomies as a preventative measure. While I don’t consider anything wrong with a woman’s personal decision to do what she feels is right, I do feel many young women are being misinformed or simply not informed at all. Again I for example have no family history and tested negative for that gene. While October has been washed in Pink this year, the message is still predominately that this is an older woman’s disease. The infomercials that do exist primarily target women over 50.

Young women with breast cancer are truly in a unique position. A cancer diagnosis can feel particularly disruptive at an age when a woman may be just starting out in a marriage or relationship, building a career or starting a family. “Younger women are more likely to be at a stage in their life when things like sexual functioning, beauty and attractiveness, fertility and family planning may be of the utmost importance,” says Partridge. Young women who plan to have children in the future confront difficult challenges regarding treatment. Both chemotherapy and hormone therapy for breast cancer can affect the ability to have children. Younger women also have a longer time to have long-term complications such as early menopause and osteoporosis.  That said, there are even more challenges younger women face that are social and identity based.

While I consider myself lucky to be past the point of having my children, my late stage diagnosis makes me wonder about when this all really started and went on undetected. Had I been diagnosed at an earlier stage of my cancer when I began my complaints, it is likely I would have received a diagnosis around my late twenties to early thirties.  Now I simply feel "stuck in the middle".  I am now turned 40, above the  cut off for the "too young for cancer" group, and too young for the "typical breast cancer age group".   Even with breast cancer, I feel like I don't "fit in" anywhere. 

Breast cancer was the last thing on anyone’s minds when I voiced my complaints mentioned above years ago. My unique challenges now exist for my treatment. I rarely see another woman my age when I walk into the waiting room of my oncologist’s office. Most of my roommates at chemotherapy spoke of their grandchildren. At first I wondered if I’d get to see my sons grow up let alone ever see any grandchildren. I had my children after 30.  They are still young now.  It was upsetting to think such thoughts, but my fears were realistic. The later the diagnosis the grimmer the prognosis. At first their self-pity made me feel angry. Although cancer is cruel and unfair for anyone to experience, they led twice the life I’ve led. I allowed my emotions to flow, but then I knew mind over matter now was of utmost importance. All around me would follow my lead. If I was depressed and worried, my children would become depressed and worried. I should know more than anyone, that much of the time, denial is an unhealthy and disruptive mechanism. I never knew until now, a certain amount of denial can be a powerful tool in fighting cancer and maintaining a positive attitude.

Chemotherapy, Treatment and the Young Woman

It is understood that young breast cancer patients often have more aggressive disease than older women. Because young patients can usually tolerate more intense chemotherapeutic drugs, they tend to receive particularly toxic regimens.
Though this is true, the experience was not something I could prepare for in my mind. In the beginning I felt very alone in the waiting rooms and chemotherapy rooms. I was at times, mistaken by other patients as being a daughter waiting for my mother. “How is your mother doing?” asked by a stranger, met with the look of surprise when I was the one who got up when called wearing my plastic ID bracelet. Most of the time though, I was sitting alone with my husband in the waiting room apart from all of the other much older patients.

I also felt frustrated that my body went downhill so fast during my chemotherapy treatments. I watched as most of my chemo roommates came and went walking on their own and driving on their own. I soon realized that I was being given a very aggressive treatment unique from those “others” I watched walking in and out. I quickly got to a point that I needed a wheelchair from the car to the treatment room. I could not walk down the hall on my own strength. Chemotherapy had beaten my once strong body down to that of dependent and weak. I went from riding my bike 40 miles without effort, lifting weights and running with my dog; to feeling breathless getting out of bed and walking to the kitchen.

Chemotherapy also took my social life away. I could no longer be myself, as much as I tried. I became extremely dependent upon everyone around me, including my own children. I am supposed to be there for them, not the other way around. I was met by some with discomfort and coldness when I did show up wearing a scarf on my head. I was immediately excluded from certain groups because they pitied me or questioned my ability. My usefulness was taken away. I realized that many in my age group are not used to dealing with someone like me and so they don’t know what to say.  They don't know that it is just okay to behave the same way around me before I wore scarves.

Despite the many challenges, I found strength from deep inside and went on each day attempting normalcy as much as possible. I knew in my mind that if I did not dwell upon the things that were destroying my body and fogging my mind, I could rise up and fight to get my life back. This has been the largest challenge of all. My diminished abilities and everything I see in the mirror, and feel in my body only remind me of what’s there getting in the way of everything. The last thing I can’t do is feel sorry for myself. This is not a part of my nature.

If I can do anything it is to share my feelings and experience to let others know this is real and common for everyone like me. This is a disease that does not discriminate. It is not something to be ashamed of or hide from just because it is “breast” cancer. You’d be surprised though how many still treat it with shame and can’t even say the words “breast” or “cancer” out loud.

Not Alone

It has been so important to have a good support system. They don’t tell you how critical this will become in your life. I just assumed we’d figure out how to get along as we always have. When things go wrong, we have always been private people retreating and coping on our own. I assumed we would just “disappear” for awhile like those movie stars do when the have a baby or a “procedure”! We had no real concept of how much we would really need other people. Being 40 with a young family, career and social obligations, living hundreds of miles away from relatives poses its unique challenges when breast cancer comes along.
We have so many to thank. We have been so touched by people’s willingness and commitment to make life continue to run. Neighbors have manicured our yard all season without asking. Many have been bringing meals. My kids have been cared for when I couldn’t make it home from treatments before school was let out. Most meaningful of all has been the company of those closest to me, making life feel “normal” during a very stressful time.

When you have breast cancer at this age, going through it is challenging enough. You have to endure loosing your mind to “chemo brain”: being forgetful, foggy, inarticulate, tongue twisted, disconnected. Then you have to think of who will take your kids to soccer practice when you can’t drive. Others parents work too and have busy lives, or simply not enough seats in the car. You have to think of how the laundry will get done or how the weeds will get pulled when you were the primary one to do those things. You have to think about how to take care of your kids when they get sick when you’re too sick to take care of yourself. You have to feel the sadness when you can’t play with your children. You have to think of what will happen with your job and your income. You have to think of never being eligible for healthcare or life insurance again. You have to worry about becoming bankrupt with medical bills that insurance won’t cover. You have to not look or feel beautiful for your husband even though he says you are anyway (if you are fortunate to have a husband like I do). You have to endure when your children tell you they miss your hair and forget what you used to look like.  Those are just some of the things that have gone through my mind in my personal circumstance. 

For others, there are so many other issues.  I have come to learn that for many, the disease takes a toll on many relationships and marriages.  Many friendships and marriages end.  It takes it's toll on a child's mental outlook as the secure world and person they depend upon is not able to be that source of security.  It creates a world of insecurity, financial worry and puts a tremendous strain on all aspects of life.  Everyone is in a different place in life.  Every cancer and experience with cancer is unique.  Each challenge: emotional, physical, sexual, relational, financial, spiritual and social is what we all face as individuals with cancer. Remembering we are unique but  equally important is key in survival.  In facing our challenges, we must find that we do not suffer alone.

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