When I was diagnosed with breast cancer, I found many online resources that answered my health and medical questions about the disease, but few that could answer my other questions.
I wanted to know how to deal with my feelings, manage my family's needs and talk with others about what I was going through.
Here, breast cancer survivors will try answering your questions by sharing their experiences and stories with you. You will see from their answers that there are many different ways of living with and surviving breast cancer.
Breat Cancer FAQ :
"I've just been diagnosed and I have to make decisions about my treatment quickly but I'm so overwhelmed, I don't know where to start. Help!"
"I was numb when I found out and felt too stupefied to make an intelligent decision. What if I did something wrong and I died? I talked with a breast cancer survivor - I think she was called a Peer Counsellor at Willow , a breast cancer information centre in my community. She suggested that I learn what I could in the time that I had and gave me a list of places where I could find reliable up-to-date information. Having this information was very important to me. She also reassured me that when the time came, I would make the right decision because I and I alone knew my body best. In the meantime, she advised me to ask my surgeon lots of questions and if I wasn't satisfied with his answers, to get a second opinion."
'Find one person who you can trust and discuss options with. Figure out what decisions you need to make immediately, and which ones can wait.
Try to go to one of the hospitals which specialize in breast cancer care as they generally have access to better and more current research and treatment. You will likely have a long relationship with that hospital, so try to pick one which is convenient for you and where you feel comfortable.
Be as assertive as you can be with medical professionals. Take a friend with you to the critical doctor's appointments where information is being given and decisions must be made, so you will have someone who can take notes, remind you of the questions you wanted to ask, and provide emotional support. Keep track of questions you want to ask, and bring these to doctor's appointments with you. Having a file and being organized will help. Take the time you need to make important decisions - a few weeks will rarely make a difference. I found it hard to deal with the conflicting views of my oncologists,some who recommended the most aggressive treatments, and others who are more into the holistic healing movement (naturopaths, chiropractors, etc). Ultimately, I made some decisions by thinking about what I could live with later on, and what would cause the least regret. Avoiding future regrets is important to me but everyone has a different risk tolerance.
Also remember that everyone is different, there is always the uncertainty of never knowing if something will work for you or not. As my medical oncologist said, while statistically, this treatment reduces the chances of recurrence by 50%, for you it will be either 100% or zero, either you will have a recurrence or not. Obviously, we all want to do things that improve our odds, but understanding how statistics work provides a useful perspective.
Be reassured that after you get through all of this, you will be stronger than ever, you will understand yourself more, and with any luck, you will have met some wonderful women through the process. Good luck!"
"When I found out that the lump in my breast was stage 2 breast cancer. I went to the biggest bookstore in the city and bought Dr Susan's Love's - Complete Breast Book . I read it from cover to cover, underlining all the parts that pertained to me. Just knowing that there were different kinds of breast cancer, different stages of breast cancer and different treatment options-like chemotherapy and hormone therapy-made me more confident when dealing with doctors."
"I didn't make any decisions. I let my surgeon do it for me and did what she said. I ended up having a mastectomy but found out later that I didn't need one. I could have had a lumpectomy and chemotherapy but I don't regret my decision. My mother died of breast cancer when I was 13 and when I was diagnosed I went into a deep denial. I don't think that the denial was unhealthy because, it allowed me to finally deal with the pain of my mother's death and work through the very real possibility of my own death. It's been five years and I'm thriving."
"Since my diagnosis, I've been on an emotional rollercoaster. Why do I feel that way? How do I get off?"
"Getting breast cancer is a lot like finding yourself on a rollercoaster you don't want to be on. How did you get there? I dealt with my diagnosis really well no panic, no outburst. But a week before my lumpectomy, the enormity of what I was about to go through-surgery, chemotherapy and radiation-hit me and I fell apart. I had a hard time falling asleep at night and woke up crying every morning. I worried about who would take care of [my dog] Katie, if I died. When I got through my lumpectomy without any problems, my margins were clean, I was hopeful. When I got through my first round of chemo without any major side effects, I was elated but when I finished my second round of chemo and all my hair fell out I crashed. Now I'm half way through my chemo, my hands and feet are blistered, my mouth is full of sores and I am very, very tired but I'm feeling more balanced than I have been in a while. I think that I'm finally getting used to the ride. I've accepted that I'll be on it for a while."
"I don't think you can really get off the rollercoaster, until it stops on its own. Sometimes the roller coaster gets stuck. I'm a psychotherapist. I work with people around loss, so I thought I knew everything there was to know about mourning the loss of my breasts e.g. working through the denial to anger, to bargaining to depression and finally to acceptance. What a laugh! From the moment I was diagnosed until now [a month short of completing treatment] I've been stuck in anger. Anger that I spent my life going to bed early, watching what I eat, working out regularly and it didn't make one iota of difference. Anger at my [family] doctor for not sending me for mammograms sooner, (my mother had breast cancer in her late 40s and according to standard practice I should have started having mammograms 5 years before [ the age at which ] my mother was diagnosed ) and anger at my partner for not having breast cancer. I did all the right things-to prevent it while she smoked, drank, ate red meat and channel surfed, so why me and not her? It just wasn't fair. I took out all of my anger on her because I felt powerless and vulnerable. For a long time she put up with I, then one day she told me that while it was natural for me to feel angry about losing my breasts-she would too if she were in my place-it was not her fault, it was nobody's fault and that I needed to stop being angry with her. Her words really helped me to get unstuck, I got professional help and I've let go of the anger, but I'm still on the rollercoaster.
"My husband and I were making plans to start a family when I was diagnosed with inflammatory breast cancer. It turned my life upside down. I was no longer in the driver's seat the breast cancer was taking me on a wild ride I didn't want to be on. To regain the control I lost, I learned everything I could about the kind of breast cancer I had and I worked with my doctors to make informed decisions about my care. I also consulted with a nutritionist to boost my immune system during chemotherapy, a fertility expert to see if I could still have children and a personal trainer for an appropriate exercise program. Doing these things has made me the boss of my body again!"
"I start chemo in a few weeks and every time I go to the hospital, people are giving me books, pamphlets and flyers about breast cancer treatments, clinical trials, healthy eating, exercises to do at home, lymphedema, (what is that anyway?) support groups. I'm drowning in paper. I'm afraid that we are deforesting the planet. Why do I need all these things?"
"Bring it on. The more the better, I work in a library so I like having lots and lots of info around. I just didn't try taking it in all at once. I just put it all in a big box beside my bed and read it on a need-to-know basis. Like when my arm was really hurting I looked at the info on 'pain management exercises' and did them. When it still hurt and swelled to an ungodly size I checked out the info on lymphedema-pain and swelling of the arm- and followed the recommendations I found there, including gettting massage therapy and talking with my oncologist. Right now I'm having a hard time eating and the only thing that seems to agree with me is the soy shake from the recipe book I got from the Cancer Society."
"I'm a retired nurse, with 20 years in oncology, so I didn't bother to look at the medical or health information but I did look at the information on breast cancer programs and ended up taking up yoga and meditation - things I never did before. I really enjoyed them. Who knew? They helped me get better just as much as all the doctors, nurses, technicians and pharmacists did."
"I'm not one for support groups, but my sister who's a social worker thinks they're great so I went to one listed in a nauseating pink brochure for 'young women'. I did it mostly to get her off my back, but the group totally changed the way I dealt with the breast cancer. Before meeting other women, I thought it was something to be tolerated and gotten over with. Now I realize that it actually provides opportunities for growth and learning, although I find some of the lessons rather hard."
"Chemotherapy left me in a deep clinical depression. Knowing that there were places to go where I could get professional help was very important to me. Even though I resisted getting it for a long time, I was able to find it easily, once I was ready."
"I have young children, how do I talk with them about breast cancer?"
" My husband and I talked with a therapist at Wellspring-a cancer support organization in our community about how to explain breast cancer to our children (aged 4 and 7).
We spoke with our children directly. I explained that I was sick and that I needed to take medicine to make me better. The medicine usually worked but if it didn't, I could die. They seemed more concerned that they'd wake up in the morning and I'd be gone. Once I reassured them that I wasn't going anywhere anytime soon, they were relieved.
We had our children visit with a therapist at Gilda's Club, another cancer support organization in our community, one night a week for about 2 months to help them 'play their way' through any questions or concerns they had but were afraid to ask mum and dad."
"I'm really worried about my kids, how will I take care of them if I am sick?"
Again Lauren answers:
" You need to realize that you may not be able to take care of them to in the same way that you are now. Also remember that children, whether their mums are sick or not, benefit from having relationships with other caring adults, so it's okay to let people you know and trust to help you take care of them. My treatments were really tough on my family but my husband and I were lucky to have the help of extended family members, close friends, school mums and our church congregation. They provided child care when we needed it, cooked meals we could freeze, assisted at mealtimes, helped with bedtime routines, provided transportation to and from the hospital and shuttled our kids to and from school and as well as to their various recreational activities. "
"My parents are in their late 70s and not in the best of health. How do I tell them without worrying them?"
" I could barely tell my mother because I knew that she would be devastated to hear about me since she had already lost my only sibling to breast cancer. She was very supportive but obviously extremely scared. To minimize her fears, I avoided telling her about mammogram and MRI dates."
"Who do I tell about my breast cancer and what do I say?"
Again, Joanne answers:
" I had many reasons for choosing to hide my breast cancer from others. The main one is that my sister died of the disease at 37. I subsequently found in talking with acquaintances about breast cancer, that people really like to distance themselves from it. Many believe that people die of breast or other cancers because they don't have the 'right attitude,' 'put up a good fight' or have the 'will to survive.' This of course is totally untrue and it makes me angry. No one was more determined to be healthy than my sister. She died, I believe, because the chemotherapy she was given simply did not work. She was diagnosed with stage 4 in 1987. I, on the other hand, was diagnosed by MRI with one of the least aggressive forms of the disease much later, and only had a small tumor. I didn't even qualify for chemo.
I decided to tell only a few close friends and my family. I discovered that some people, even friends I had for years, suddenly disappeared after I told them I had cancer. That was very hurtful to me.
Telling my son was the hardest. I told him before my surgery and had no idea at that point what the future would hold. He thought that I would die since his aunt had died when he was small. Luckily I am healthy now.
No one at work knew and I'm glad that I didn't tell them. Being able to go to work even during my radiation treatments and becoming the cheerful teacher I was before my diagnosis really lifted my spirits. I liked putting on my happy face everyday and not having people giving me advice that I didn't want to hear. Of course, it might have been good to get some more support but I got a lot from my family. "
"I came here from Somalia many years ago and in the Somali community everyone discusses everyone else's business [laugh], so it was not possible to keep my breast cancer a secret. At the same time, I did not want be bothered telling everyone, so I just told my immediate family that I needed an operation and treatments in a hospital then In'asallah (God willing) I would get better. They told my extended family, who told my mosque, who told my whole community. Word got around in a matter of days [more laughter]. People brought me special foods, prayed for me and wished me well. It was good to know that I had my whole community behind me, I think this and my belief that Allah did not wish me to die yet made me well again."
" I am a very private person, so I only told people who needed to know like my rabbi in case I died and needed funeral arrangements to be made as well as my supervisor and my union representative, because I needed to be on disability [insurance]. I was short and to the point with the latter two, 'I have breast cancer, I will need to take 9 to 12 months off to complete my treatments, in the meantime my job can be covered by colleagues, no one new has to be hired."
" I know this sounds really weird but I didn't want my family to know. They are big worriers and I knew that if I told them I would have to spend a lot of time helping them feel okay about it and I just didn't have the energy."
"I have been very open about my breast cancer, but now I find myself the target of advice and "help" from well-meaning friends and extended family members as well as insensitive comments or intrusive questions from colleagues and acquaintances."
"In the very beginning, I was overwhelmed with advice because everyone had something different to say and by the end of the day it was all extremely confusing. So for me it was up to trusting one or two people who knew me well. I would thank the others for their comments and advice and leave it at that. When intrusive questions came along that I didn't want to answer, I found just ignoring them to be best. People would generally see that this was not to be a topic of conversation and change the subject. I had one colleague that kept asking questions and I had to be blunt with her. Even though most people come from well meaning places, being honest and up front seemed to work. There will come a day when you will be able to talk about it and not feel bad about telling others what it's like to be diagnosed with breast cancer. Only time can make that happen. I must say that when insensitive comments came from acquaintances I would feel very sad almost to the point of crying, but as the hours progressed I would come to terms with it and realize that they really didn't really mean to hurt me but had no other ways of expressing how bad badly they felt for me."
Chemotherapy is making me really depressed. I know it's the drugs but what can I do to feel better about myself?
"Chemotherapy totally knocked me out. It wasn't just the drugs and their side effects. It was also having to avoid my friends because it was cold and flu season and I couldn't risk getting a bug that would put my treatment back; going to and from the hospital in a snow storm; getting an infection in my pic line; and being bumped from appointments because the treatment rooms were overbooked. I never tried to feel better. I just let myself be miserable. I mean really how often in your life are you allowed to feel sorry for yourself and read US Magazine without feeling guilty?"
"Looking back now, I realize that it was probably normal to be depressed but I didn't feel that it was okay to be so sad. I had always been the strong one, so I just kept fighting it and fighting. I tried everything I could. I went to a support group regularly. I read every book on the subject. I even consulted with a naturopath doctor who put me on vitamins to boost my immune system. But the more I tried the worse it got. It wasn't until I finally told myself that I was too exhausted to fight the depression and the breast cancer that my depression started to lift on its own, but that took over a year."
"I expected to feel depressed, but not to be so depressed I couldn't get out of bed or even eat even when I was hungry. I spoke with my oncologist about it. I said 'This is not normal' and she agreed and referred me to a psychiatrist who works with breast cancer patients."
I don't feel good about my body and I'm finding it hard to be intimate with my partner.
Again Carolina answers:
"I'm still learning to feel comfortable with my new body. My chest looks like the New York City subway system, and the skin is fried. My hair grew back funny. On top of that I am on tamoxifen and it has put me into an early menopause (I'm only 35). I'm having hot flashes and wicked mood swings. I don't want to be with my husband, I don't want him to see my body but I make a point of doing things with him that he likes. We go rollerblading together together, listen to acid jazz, and hang out at the martini bar. It's our special time. Once I start being less self-conscious, we'll start having sex again."
"Don't leave it too long, because the longer you don't get together, the more fears you'll have about being together and then you stop being together altogether. Just do what you're comfortable with."
"During my treatment my boyfriend seemed really far away. He wouldn't even sleep in our bed and it made me feel unwanted. Then I accidentally found out that he was being distant because he was afraid that he would hurt me if he got too close. I told him it hurt me more that he wasn't and while my body hurt, I didn't break easily. Things got better right away."
I've just started dating again. How do I tell potential lovers that I only have one breast without scaring them off?
"I don't usually mention that I had a bilateral mastectomy until I get to know someone quite well and then I get one of two responses: distance or questions. I'll only consider being intimate with the ones who ask questions."
"I don't hide the fact that I have only one breast. I don't wear a prosthetic so the guys I go out with know up front. One guy I was set up with was equally upfront. His mom and sister had both died of breast cancer and he was clear that he was not going to get involved with someone who could die too. Fair enough. We've since become good friends and he has promised to fix me up with his 'snacky' friends!"
"It depends how you feel about yourself. I met my girlfriend during my cancer treatments when I was skinny and bald. I was trying hard to be brave, even though I really wasn't. She loved my beat-breast-cancer-into-the-ground attitude. She said it was what attracted her to me."
I finished my treatments a long time ago. How come I am feeling so emotional now?
"So what's wrong with that? It's good to have feelings. You shouldn't be afraid to show them. When I got breast cancer I didn't for a long, long time. Then one day I was coming home from the doctor's. I was on the bus and I just started laughing. I laughed so hard I cried. Everyone just looked at me. They all thought I was crazy and I was crazy. I was crazy not to show my feelings, so I yelled, 'I survived breast cancer! I survived breast cancer! I did, I did I did.' The driver pulled over and made me get off!"
"My first priority was to get physically well. It took me a long time to recover from my mastectomy - about three months - and I found the radiation really exhausting. Near the end of my treatments I spent a lot of my time sleeping. It wasn't until a year later that I felt relaxed enough to start dealing with the emotions that had built up. Some days I feel angry,especially when people complain about trivial things. Other days I wish I had done more to make my treatments go easier, eaten a more balanced diet, joined a support group, taken more time off work. Now I cry a lot especially when I'm getting dressed or undressed, but I know it won't be doing this forever."
"I found ending treatment a lot harder than starting it. All of a sudden everything stopped. I didn't have to be somewhere at a certain time. I didn't have doctors and nurses fussing around me all the time. My family and friends wanted things to 'get back to normal' and for me to be myself again, but I couldn't. I didn't know who I was anymore. I still don't. All I knew was that life would never be the same again, it was terrifying and uncertain. Someone recently gave me Esther Hill-Schippner's book, Life After Breast Cancer . Maybe it will help clarify things."