I am fours years out and still worry whenever anything is not “right.” Cancer survivors deal with this phenomenon all our lives. A simple ache is never a simple ache again.
(Julie Austin, Little Rock, AR, diagnosed in 2000 at age 30)

I am totally frightened of recurrence, but I do remember my medical-oncologist saying, “The longer you can go between now and recurrence, the better your chances are.” Breast self-examination and mammograms may be helpful for early detection in many cases. With inflammatory breast cancer, if your skin goes red and feels hot, make sure that a doctor hears you. It waxes and wanes. You and your doctor won’t be able to see it all the time. Insist on a biopsy.

I read about breast cancer, but I will not let it consume my life. Yes, I feel very discouraged to hear someone has died from breast cancer or any other type of cancer for that matter.

I’m constantly torn between wanting to do BSE every day and never wanting to do them again. I still do them monthly. I’ve tried to maintain a good weight, do yoga and some aerobic exercise. I still try to follow a low-fat, no-red-meat diet. It’s very hard to hear about other people with any kind of cancer. I think BSE is extremely important. My mammogram did not detect the lump. We should take advantage of every means of early detection.

I was 16 years cancer free. I am not sure why I had a recurrence but keep going back to the stress factor. X-ray of chest found a tumor in the lung after I had a long term cold with a cough. Biopsy revealed recurrence and several other tests found traces in the brain, neck, bones and back. I found a doctor who offered positive options and diagnosis for me. I have a very positive attitude and a child (age 11) who makes my determination to be a survivor even greater. I will not allow this disease to beat me! I believe in good medical maintenance, early detection, and a good relationship with your doctor.
(Roberta R. Nordby, Redmond, WA, diagnosed in 1984 at age 29)

Recurrence is not an automatic death sentence. Miracles happen all the time. I am a cancer warrior. I have all the tests regularly and even more. I exercise and try to watch what I eat. I am still taking prescribed vitamins, acidophilus and antioxidants. I try avoiding stressful situations or people. I try to keep up with current information.
(Heather Resnick, Thornhill, ON, diagnosed in 1997 at age 43, recurrence in 1999)

I regularly go for checkups, blood work, and chest X-rays. I read about new research on breast cancer or recent findings to be continually informed. I feel discouraged to hear someone has died from breast cancer as I’m sure most of us are, but I certainly do not want to know the details. I feel that if I wasn’t true to BSE, I might have found it at a stage where it wasn’t as treatable.
(Carolyn S. Olson, diagnosed at age 37)

I live life to the fullest for the moment, and I don’t think too far ahead. I read positive messages and avoid talking about breast cancer. I don’t want to be called a breast cancer survivor. I had breast cancer and now I don’t.
(Yvette, Victoria, BC, diagnosed in 2002 at age 47)

I do not feel discouraged to hear of a death from breast cancer, but it does make me feel I must live each day to the fullest and take time for myself. Eat healthy and exercise daily and do not forget to pamper yourself weekly.

Having to go through it a second time (four years later) is very discouraging indeed. It was more difficult emotionally. I felt it was more serious because it was back, which made me feel defeated after all my
efforts to change. But I had much better support from friends and now I was informed and “plugged in.” I knew where to get help and support. I was 37, had just met someone I thought was the man of my dreams, and I was told I had to have a mastectomy. I had not told this man that I had previously had breast cancer, and I did not want the fun to end. He was very supportive but, after the mastectomy, he lost interest in me sexually. This is a very difficult rejection to get over.
(Donna Tremblay, diagnosed in 1992 at age 33, recurrence in 1996)

A total medical checkup once a year, a complete day in the hospital for all kinds of tests. That day, I think of recurrence. In everyday life, I don’t think about it. I compare myself to the other women, and we all have the same chances of getting cancer or not. I’m optimistic. If ever cancer recurs, I will worry in due time, not beforehand.

My battle plan to cope with cancer has been to continue my normal life and consider myself healthy as long as nothing appears. It simply does not help at all to worry about what might happen. I now have cancer for the second time. I am happy that I lived happily for 4 years in between. My second treatments will be over this summer (2004) and I have already decided to continue my life as healthy again. The fact is that nobody knows what diseases are coming into your life, and they always come totally uninvited. Why worry beforehand?
(Katariina Rautalahti, Järvenpää, Finland, diagnosed in 1999 at age 41, recurrence in 2003 at age 45)

While I was going through treatment I was kept so busy I didn’t have time to think. I felt in control because I was doing something about it. The chemicals, the surgery, the radiation, but now all there is are these little white pills. How can they possibly be keeping the cancer away. I feel like I’m on a ledge ready to fall off. Only someone who’s been there knows what I’m feeling.
(Linda Bryngelson, New Brighton, MN)

Recurrence happened 14 months later. A local recurrence does not in itself worsen the prognosis. No two tumors are exactly alike. Therefore everyone’s story is different. Don’t compare yourself to others. Just do everything you can to live a healthy lifestyle.

I get scared when I hear someone has passed away from breast cancer. Recently I dealt with first death within the support group. It’s hard.
(Cordelia Styles, Quesnel, BC)

It’s important for women to know the geography of their own breasts so that they can recognize changes and get help. Recurrence in same location in 2001, found on mammogram. I had a second lumpectomy on the same breast, contrary to the usual recommendation in this country. Hearing the news the second time was much easier.
(Bev Parker, Naperville, IL, diagnosed in 1985 at age 40, recurrence in 2001)

Every time I get an ache or pain anywhere in my body, it’s back. This I understand will never go away. Mammograms sure helped me, and I wished I had had one sooner.
(Jacqui, Courtenay, BC, diagnosed in 2002 at 38)

What triggers the fear? I think anyone who has experienced a life-threatening disease of any kind secretly wonders about recurrence, not all the time but it’s there, in the back of her mind. I know my body now, and if I think there’s something that needs looking at, I will not stop until I get the answers.

I definitely believe in mammograms, and I always ask for the radiologist to be there to read it before I leave. That always eases my mind.
(S.R., Columbus, OH)

My regular checkups always trigger my fear of recurrence. I think most women feel blindsided by their diagnosis. They go to the doctor feeling perfectly fine and come out with a life-threatening disease. If it can happen once, it can happen again.
(Rita, Palos Verdes, CA)

I have a very strong fear of recurrence. Because doctors are unable to give you definitive guidelines or predictions, you always wonder with every little pain if it’s recurred. It is difficult to treat Her2Neu+ breast cancer and the prognosis is fairly grim because it is so aggressive. Although when I write this it seems frightening and exhausting to have to endure such a treatment, I looked at it as relentless attacks on my cancer and was actually more frightened when it all ended.
(Catherine, Pointe Claire, QC, diagnosed in 2001 at age 39)

13 years later, I found a lump in my other breast. I enjoy helping others who are recently diagnosed. I like telling them my story and giving them courage. Always believe you can fight this. Half the battle is believing you can overcome this. I become fearful when I have a mammogram, I become fearful when I have a checkup.
(Marie, Co. Mayo, Ireland, diagnosed in 1987, recurrence 13 years later)

My fear of recurrence is not centered around the possibility of death, but around the possibility of having to go through treatment again. I don’t know if I could consent to chemo again, so it’s a fear of causing my own death because I’m too chicken to do anything about it. I hate it whenever I hear of anyone getting cancer or dying of cancer. I work in a hospital, so this is constantly in my peripheral vision.
(Judith Quinlan, diagnosed in 2001 at age 52)

Fear is an important element of the equation of breast cancer. I see fear as the factor that gets us in touch with our strength. Fear serves as the backdrop for what we are trying to learn or to overcome. I found that by realizing what my greatest fears were that I knew where I needed to start my healing journey. Death was my greatest fear of breast cancer. I had to learn about death, and what and why I was so afraid of it. Once I learned about death, fear had no hold over me. I found that I was actually starting the first and most important step of the healing journey by seeing I couldn’t heal while I was bound by my fears to make decisions from a place of fear. I was regularly making decisions from a foundation of fear, instead of from a place of empowerment.
(Beverly Vote, Lebanon, MO, diagnosed in 2002 at age 37)

I used to fear finding a lump, but now I fear more missing a lump. Once you’ve been through this, you really understand the benefits of early detection.

I have over 200 books on breast cancer and positive thinking. I like to read all I can about it. I do think about it coming back but do not dwell on it. I feel self-exams are important. If I hadn’t done mine I would never have found the lump.

The outcomes are different for all of us. I remain optimistic and hopeful that the years of good lifestyle/eating/exercising, etc. will keep me healthy. I think women should be encouraged to do self-exams.

Whenever I hear that someone has died of breast cancer, I automatically want to know her estrogen receptor status, her type of treatment, and how long it’s been since her initial diagnosis. Since I’m active in the Young Survival Coalition and on the WebMd boards, I’ve known several women who have died, which just makes me want to fight harder for a cure. I don’t think mammograms are effective in women under 40. My tumor was over 2 centimeters, and it didn’t even show up on the mammogram. Luckily it was painful, so I knew that something was there. An ultrasound located it.
(Leslie, Springfield, VA)

After 30 years I still feel a little apprehensive when it’s time for my yearly checkup with the breast surgeon..... I know it can happen again. However, I have lost the excess weight, go to the gym five days a week, and I am fit for the first time in my life. I stopped smoking in 1974 when diagnosed with cancer. I eat right and take antioxidants. I feel great and no longer fear that I will die of cancer. My mother died at the age of 41 from uterine cancer so when I got cancer at 41, I needed several months of therapy to get over that fear. I am a very happily married artist and keep a very busy schedule. I take care of myself these days.
(Gloria J. “Mimi” Winer, Point Pleasant, NY, diagnosed in 1974))

I am scared to death of recurrence. My mother-in-law recently died from advanced stages of breast cancer, and it was very hard to take. I try and deal with things in a positive manner, but sometimes you just have to cry!
(Peggy Scott, Waldorf, MD, diagnosed in 2002 at age 46)

Any ache or pain triggers unspoken fear of recurrence. I don’t know any survivor who doesn’t experience this. My battle plan is to eat well, laugh a lot, and make the best of each day.

Women have to realize that not feeling a lump doesn’t mean they don’t have cancer. I had no lump.
(Cheryl Otting, Elkford, BC, diagnosed in 2002 at age 53)

In the first few years, I was very fearful. About four years after, a routine mammogram found what they believed were calcifications in my right breast... and, until the biopsy results came back, I was a real nut case! If I hear someone has died of breast cancer, I think how very fortunate I am to still be here.

I feel like I have a sisterhood with these women and I feel the loss when one of us is taken. I am not afraid to hear the stories.
(Deborah, diagnosed in 2002 at age 46)

My doctors have made it very clear that I am at a very high risk for recurrence so I deal with fear every day. It’s hard.
(Jennifer, diagnosed in 2001 at age 27)

What triggers my fear is when I feel overtired and stressed. I became acutely aware of the passing of time and what is meant by quality of life. I weeded out friends who were exhausting and dependent. I became more aware of my nutrition. I spent less time cleaning my apartment and more time out in the country, hiking, cycling, walking, exercising. I cut back on my work hours. I am strapped a bit financially, but it is worth it. I get impatient with people who want to delve in details and who take up too much of my time for no good reason.
(Donna Tremblay, diagnosed in 1992 at age 33, recurrence in 1996))

I worry that it may come back. I want all tests done every six months. Oncologists do not want that, saying that they think it creates more stress. They do not realize that with every clear test, it leaves us with hope that we made it one more time. And if it is not a clear test, why not know as soon as possible and hopefully do something about it? The mammogram missed my cancers. We have to find a better way to diagnose.
(Sharron, diagnosed in 2002 at age 62)

My recurrence began with a pain in my side when I would roll over in bed, with a few back pains thrown in. It was exactly two years after I had completed the initial treatments, and I had been on tamoxifen. The bone scan revealed the metastasis to the ribs, vertebrae, and hips. There is a lack of knowledge about metastasis and the emotional ups and downs we go through. The biggest comment everyone gets from friends is, “But you look so good!” My online support group has constant discussions about this, as it is frustrating to everyone. Living with the
constant fear and knowledge that your time on earth is limited and you need to make the most of it right now, is somewhat of a struggle. That is true for the whole population, but having the reminder “in your face” daily is a challenge. Making plans even six months ahead is difficult as you always wonder, “Will I still be feeling well by then?’

Staying busy and occupied was very helpful. I didn’t experience depression until after all the treatments. Seemed like when the treatments were over all the constant attention came to an abrupt halt and everyone (in medical support) went away. I felt alone and scared. I don’t know if I will ever not wonder if it is back every time I have a weird pain or symptom.

I just hope that if it does happen, it’s somewhere in the future when there will be a cure.

Each day this disease kills many women who might have been saved by regular breast exams or mammograms. An annual mammogram is
inexpensive, an appointment will take less than an hour of your time, and it could save your life.

Fear of recurrence is so huge... it gets in the way of believing that you have a future to plan. Service to others helped a lot. Getting involved in public education about breast cancer, in Race for the Cure and working with other survivors helped me tremendously.
(Janel Dolan Jones, Fort Worth, TX)

My first breast cancer was eight years ago, the second was four years ago, and I recently have been diagnosed with another recurrence. My first warning sign was pain in the sternum for over a year, not necessarily typical. A PET scan showed a bright area over the sternum but nothing showed on MRI so it was decided this was just some sort of inflammation. The pain persisted but my oncologist felt it was just part of the healing from the reconstruction. Then my husband and I noticed a fullness or raised area, another PET scan showed a larger area of brightness, and a CT scan confirmed a mass invading the sternum, ribs and pectoralis muscle along with an internal mammary node. Because I work in the oncology field as a radiation therapist, I see a lot of situations. It can be scary to see young women come in with recurrences. But I also know of women who had recurrences 10 to 15 years ago and no one thought they’d be around, and they’re still going strong. I plan to be one of those women.