The rosy glow of ‘Pinktober‘ is everywhere this month, so we asked Guardian readers how cancer has changed their lives
‘I had chemotherapy during my last two trimesters of pregnancy’
Heidi, 44, Indiana
I was pregnant when diagnosed with breast cancer, and had chemotherapy during my last two trimesters of pregnancy. I’ve had lumpectomies, a mastectomy, reconstruction, oophorectomy, chemotherapy, radiation, and have taken more medicine than I can remember. My son was born healthy, strong and very handsome, in spite of his dangerous start. He is wonderful. Chronic pain and fatigue are constant reminders of my cancer, but knowing I persevered for someone other than myself is the greatest reward.
On ‘Pinktober’: To me, the positive comes from helping other people going through this journey – women, men, children. When one person in a family is diagnosed, they all play a part in what happens after diagnosis. Friends, colleagues or church members all want to help, but are sometimes unsure what to do. I’ve found great comfort in helping people identify those needs.
Also, not all charities actually care about breast cancer patients. Some, horribly, only see cancer as a business model or a strategic plan to help boost product sales or worse, careers. People need to diligently research where their money is going, and if it actually helps patients.
‘Two experiences with breast cancer: my wife’s and my own’
Oliver, 47, Houston, Texas
I have two experiences with breast cancer: as caregiver for my wife as she went through treatment six years ago, and my own diagnosis and treatment starting in September 2012. We had near-identical treatments: six months of chemo, mastectomy and then radiation, followed by years of Tamoxifen. Of course the odds of this are small. Sharing this experience has brought us closer in an unexpected way, and we understand each other’s fear of recurrence completely.
On ‘Pinktober’: The stark reality of what breast cancer means to many people gets lost [in awareness campaigns.] The focus is on early stage disease in women, with relatively easy treatment and good outcomes. People are invited to celebrate cancer. For many it is a threat to their well being, even their life. Male breast cancer, metastatic breast cancer, triple negative breast cancer, inflammatory breast cancer and breast cancer in young women all get lost.
‘I tested positive for the BRCA gene mutation’
Lori, 46, New York, New York
I was diagnosed with breast cancer on 28 March 2011. The tumor was in my left breast and was an invasive ductal carcinoma that was 3.5cm long, Estrogen, Progesterone and HER positive, stage IIB. The only reason I even knew something was wrong was that I had pain in my left breast. I went to the doctor who referred me to a radiologist. I was given a mammogram, an ultrasound and a very, very painful biopsy. After a very long weekend, I was told by phone that I had cancer.
I was presented with three options: a lumpectomy, a single mastectomy, or double mastectomy. The deciding factor would be a test for the BRCA gene mutation, but this would delay any action by at least two weeks. After careful consideration that day, I opted for a double mastectomy. I joked that I had wanted a breast reduction anyway and that it should be a matching pair, but honestly, I had a strong suspicion about how the test would turn out since Ashkenazi (eastern European) Jews, of which I am one, have the highest risk of being a carrier. As it turned out, I was right.
A few nights before the double mastectomy, I decided that the only way to decimate a bully (cancer) is to laugh at it. So I invited my friends to my “Bye Bye Boobies” Party. We spared no insult to the boobies that were making my life hell. A Triple-D red velvet cake, lots of dairy products and a song, set to “Bye Bye Baby” to wish them boobies a long goodbye.
On ‘Pinktober’: It misses the actuality of what breast cancer really is. Pink ribbons infantilize the disease and make it appear to be cute – “Pretty in Pink“. There is nothing about breast cancer that is pretty or pink. More information needs to get out to the public about the genetic factors and environmental factors that cause breast cancer and how we need to address these in a way to put people out of harm’s way.
‘I began to think about this as a journey of silver linings’
Ljuba, 31, Cupertino, California
My breast cancer diagnosis hit me straight in my face. I had given birth to beautiful twin girls nine months prior. Saying that my husband and I had our hands full would be putting it mildly. I got “the call” while being told about a potentially necessary skull surgery for one of my twin daughters. “Do you have some time to talk?” my doctor asked. I knew it before she talked me through the rest. My husband knew just by looking at my face. Talk about curveballs.
Me? Now? I was 31, too young for any routine screening. With two babies and a very aggressively growing tumor. One week it measured at 1cm, three weeks later it was estimated at 4cm. The next couple of weeks revolved around waiting for more tests and appointments, while feeling and seeing the mass in my breast grow. This was my rock bottom. It could only get better from there.
But this is where the unexpected part came in.
My daughter didn’t need the surgery after all and I was referred to one of the best cancer centers in the US. The first word that I heard from my oncologist was “curable”. I was surrounded with a team of doctors, surgeons, nurses, dieticians and genetics specialists. I received my first chemotherapy and suddenly began to think about this as a journey of silver linings. An aggressively growing tumor also meant in my case that it was “hungry” and thus eagerly absorbing the chemo. It was half its size after two treatments. The fast metabolism of a young and otherwise healthy body initially caused the cancer to grow quickly, but on the flip side mastered the task of coping with the side effects of the nuclear cocktails injected into my veins.
I lost my hair and started wearing a wig. Getting ready in the morning became a piece of cake. No endless manoeuvring of styling tools and products – perfect salon hair in seconds. My nails stopped growing and manicures would last for weeks. I had a double mastectomy a month ago and am in the process of plastic reconstruction. I can choose my bra cup size and these babies will never sag – what’s not to like? Sure, there were plenty of “one step forward, two steps back” moments in my journey and I am not at the finish line quite yet, but focusing on maintaining a sense of normalcy in my life (I worked part-time, taking days off for treatment, and most of my colleagues still don’t know of my diagnosis) helped me to get through this. But at the core of everything were the silver linings. They will continue to carry me to the last page of this chapter of my life.
On ‘Pinktober’: While I support awareness initiatives, especially for serious illnesses, breast cancer awareness month here in the US has a slightly foul aftertaste of what we call a Hallmark holiday. Pink ribbons on everything from yogurt to toilet paper. A potentially lethal and devastating disease reduced to a sparkly bumper sticker. And while I am thrilled that a percentage of these funds goes towards research, I can’t get rid of this foul aftertaste.
‘I never had a breakdown cry or questioned why’
Amy, 39, Huntsville, Alabama
I found out in April, at age 38, that I had breast cancer. I never had a breakdown cry or questioned why. Surprise! Not even once! It’s not because I’m unaware of how serious cancer is, nor is it because I’m in some denial of what I have or what I could lose. It’s not because I’m especially strong or fearless.
I believe it helps that I look at the entire process through the eyes of acceptance and think about what I’m gaining. I accept that I have cancer and the possible outcomes. I accept that it does not define me. I will gain knowledge and experience from having cancer, as well as gain the ability to display my beliefs and principles, and set a good example for my children and family. I believe the most important life lessons don’t come from easy paths; it’s the struggles that show us what we’re made of.
Cancer throws you into a new world, one that can be consumed by your own existence, pain, and treatment. Finding a way to step outside of yourself and look beyond your own cancer is beneficial. There is good in making time and focusing on others, because someone else always has it worse.
When I look around during any chemotherapy treatment, I see that it could be worse: someone younger, someone older, someone suffering more, someone suffering alone … the list goes on. I have spent every one of my chemo sessions talking to the nurses, doctors and volunteers that come my way. I try to remember something personal about them for when I see them again. I have joked and teased with my chemo buddies and tried to make them laugh and feel better, because often I see how lucky I am when I’m there. I see people of all ages afraid, unsure and worried. I feel fortunate by getting to know someone and find a way to get a smile or laugh out of them, and most of the time I do. That is a gift for me!
Cancer does not define me, how I handle cancer defines me. I am going to keep my crazy positive outlook and feel fortunate that I have the ability to fight cancer.
‘I had to learn to shut out the opinions of other people’
Lana, 52, Denver, Colorado
I had stage two triple negative breast cancer, no metastases. Several friends and family members were mortified that I was going to have chemotherapy. They insisted I should try alternative therapies or homeopathic remedies rather than “put poison in my body”. I know those comments came from a place of fear and love for me, but I soon learned to shut out the opinions of other people and march on with the course of treatment my oncologist told me was the only option to kill “the monster.”
No one really knows what it’s like to have cancer, unless they’ve had cancer. That’s the bottom line. We all do what we have to do, individually, to face it, fight it and move on.
On ‘Pinktober’: There seems to be an ever-growing perception (through marketing messages) that we have control over our bodies and can avoid getting cancer. In turn, that translates to many of us as “if you got breast cancer, you must have done something to get it” – ate too much sugar; had a lousy diet; didn’t exercise, etc. There are many of us out here who did everything right (diet, exercise) and got cancer anyway.
I call it The Cancer Crap Shoot. We don’t carry the identified genes and don’t have a family history. So, I think the emphasis needs to be on empowerment: early detection, learning your risk factors and demanding screening (particularly for women 40 and younger if you are at high risk), and even bypassing traditional diagnostics (going straight to MRI or whole-breast ultrasound if you have dense breast tissue).
Yes, diet and exercise are important, however, other physiological factors have been determined to impact risk and women should be educated about them as well (inflammation; keeping your immune system healthy; learning healthy ways of coping with stress).
‘Damage was done to my brain’
Anne Marie, New York, New York
It has been very difficult for me to accept the limitations caused by whatever damage was done to my brain. I was always super organized and could multitask without any issues. Now, I’m lucky if I pay my bills on time.
Realizing I can’t accomplish half of what I could in the past is disappointing, but the fact that I was forced to change directions from office management to writing has been fulfilling in ways I could not have dreamed possible. I try to focus on the fact that I am doing something I love.
On ‘Pinktober’: Breast cancer research has seen many successes over the past decades. Yet, when it is broken down and really examined, we haven’t made the great strides that are hyped, especially during October as we are strangled by pink ribbons.
Treatment is still barbaric. The fact that early detection doesn’t guarantee the disease won’t spread outside the breast is rarely spoken about. The fact that the death rate is substantially unchanged in over 40 years is another problem. Breast cancer is not the great success story it’s hyped to be, it’s just the one that’s been marketed the best.