What makes a good doctor is one who cares, who tells the truth in a compassionate way and does not make the patient feel that she is only one of many.
(Dr. Barry J. Barclay, St. Albert, AB, lost his wife to breast cancer)

The time between my surgery and seeing an oncologist was very stressful and took over four weeks. I spent that time sitting by the phone waiting for a call. Finally I cracked and sent my husband to the hospital to plead my case. It seems the hospital had lost my file and was overworked. Thanks to a kind secretary, a compassionate oncologist squeezed me into his busy schedule.
(Lorraine Zakaib, Kirkland, QC, diagnosed in 2002 at age 49)

My doctors are great. They listen to all my questions, give me resources and their support
office people made my care as smooth as
possible. I decided to participate in a clinical trial by asking my doctor lots of questions. I spoke to others who had gone through cancer. Research is important and necessary, and I
decided that the big picture would be that my participation might help in future treatment.
(Deborah, diagnosed in 2002 at age 46)

I decided that I wanted a mastectomy, because I could live without a breast but I could not live with cancer. My oncologist was so thorough and answered all my questions. He arranged for me to see a surgeon, who was my angel of mercy and incredible in the way she explained everything to me, before, during, and after. And then along came a plastic surgeon that was the icing on the cake. I opted for immediate reconstruction and so he did a TRAM flap at the same time. I was so very pleased to be able to wake from surgery feeling whole. Upon returning home, I hooked up with our local physiotherapist. She opened her studio to me and took a great interest in helping me regain my arm movement. She was instrumental in my recovery and we remain very close friends.
(Marylynn)

I chose standard treatment, because I didn’t want to do clinical trials. My doctor wasn’t happy with my choice.

Because I work in a hospital and know oncologists and others working with cancer patients, I was able to quickly move through the medical system. What slowed me down the most was getting approvals from my insurance company, and this can be very frustrating!

I started a journal right at the beginning of it all, and this was invaluable. It filled up very quickly with appointment details, addresses, phone numbers, questions for me to ask the doctors, answers they gave me, as well as being a place for me to write down my feelings during the interminable waits for appointments and treatments.
(Judith Quinlan, diagnosed in 2001 at age 52)

My oncologist was excellent and encouraged me to learn as much as possible. This helped me and my family get a handle on things and
become more rational. It also made me an educated consumer when I went for a second opinion. My biggest problem was my husband’s fear that I was dying. It took him months to deal with this, and it seriously affected his mental and physical health. Knowledge made me a better patient, and I knew the relevant questions to ask to take an active role in my treatment.

I chose the doctor I did because, after looking at their experience and skills, she treated me like a person, not a disease. I think a good patient is someone who is respectful but advocates for what she needs. I asked many questions but I always wrote them down and tried to be aware of the doctor’s time.

My oncologist was amazing. He took the time needed to answer all my questions and never made me feel rushed. I prepared my questions and wrote them in a book, which I took with me to all the appointments. I also read about the various treatments and educated myself on breast cancer.
(Debbie Giroux, Langley, BC)

A good patient is someone who asks a lot of questions and is a pain in the butt. I wanted to make sure that the doctors knew me as Jacqui and not just a number.
(Jacqui Courtenay, BC, diagnosed in 2002 at age 38)

I liked my doctor. He made me feel like we could beat this, and he kept telling me I was a real trooper.
(Linda Bryngelson, New Brighton, MN)

My cancer had spread so it was no longer
curable, but it was treatable. One of the things I found useful after diagnosis was a book my surgeon gave me. It explained about the various types of breast cancer and how the disease develops and proceeds. It also talked about treatment options and communicating with your doctors. I found after reading the book that I had many questions.
(Kathy Reeve, North Vancouver, BC, diagnosed in 2000 at age 32)

I chose to go on a clinical trial. I decided quickly because I was scared. By reading Dr. Susan Love’s Breast Book I knew that only 1-4% of all breasts cancers were this type (inflammatory) and that I wanted to take every chance I was given to survive. What makes a good doctor? I had more than 26! There are so many aspects. My oncologist has fingers I trust and is as bright as can be. My surgeon did an excellent job slicing off my breast and half of my underarm leaving me a thin scar and a total range of motion. Good doctors have bounce. They listen. They speak directly. They keep doing their job. They might not always be polite or on time, but they do know what they are doing and communicate when necessary in an immediate fashion.

I went alone to all my treatments. It was my choice. I wanted to make myself strong and not feel dependent on anyone. I think my treatment would have been much smoother had I gone to a comprehensive cancer center. As it was, the radiology department was associated with one hospital, my surgeon with another, and my oncologist with a third. The surgeon referred me to one oncologist but a book I read strongly
recommends getting a second opinion. I did get that second opinion and it changed my whole approach to treatment (no chemo). However, choosing the second oncologist who wasn’t part of the original team complicated things for me. My surgeon gave me a videotape of the sentinel node procedure. That helped calm the fear of the “unknown.” I love my oncologist. I feel he treats each patient individually and cares about the psychological toll that a breast cancer diagnosis takes. He tape-records the initial consultation and gives his patients the tape. That way when one returns home and is totally confused, one can play the tape back as a reminder of what was said.
(Rita, Palos Verdes, CA)

It took great effort to proceed through the consults and further tests, to continue working throughout, and to do research to educate
myself on my situation and the medical terminology and to examine each treatment option to decide what was best. I felt completely overwhelmed and scared of making the wrong decision because of the limited time I had to learn everything. The chaos only calmed down when I decided upon a treatment facility, oncologist, surgeon, and treatment options, and the dates were set to start.
(Dikla, North Hollywood, CA)

I want a doctor to tell me what I need to know and not throw numbers and percentages at me.
(Julie Austin, Little Rock, AR, diagnosed in 2000 at age 30)

The first surgeon misread the pathology report and wanted to perform a double mastectomy. An oncologist told me the test results were misread and I needed no further surgery other than a lymph node biopsy. Another surgeon also misread the report. I finally saw a renowned breast cancer surgeon for referral. My surgeon there was wonderful. He performed the sentinel node biopsy. The cancer had not spread to my lymph nodes. I cried tears of joy and was relieved.

I trusted initial providers and had excellent care. I also had good health coverage, quite a blessing. My chemo doctor was smart and up-to-date but barely human. I left his care as soon as chemo was over and switched to an herbalist/oncologist for all follow-up care. My vascular surgeon, a woman, was meticulously careful with the nerves so that they were spared. I had a plastic surgeon during mastectomy who put in an inflatable prosthesis in preparation for eventual reconstruction. The prosthesis was awful.

After my biopsy, my surgeon came in to tell me the tumor was malignant. He said that he was sure I’d be fine and that I’d live to be 90, which cheered me up a little.
(Leslie, Springfield, VA)

“Too young” is not a diagnosis. Follow up with your doctor if you have a lump that grows.

A good doctor has compassion. I don’t think doctors should give a prognosis for survival time. It varies for every individual person. While I see reason for giving some idea of what to expect, being made to believe you only have a certain amount of time left to live is limiting.
(Marie, Co. Mayo, Ireland, diagnosed in 1987, recurrence 13 years later)

When I was diagnosed, I asked the surgeon if I could set up informational meetings with an oncologist, radiologist, and reconstruction surgeon, and that I wanted to see a chemo session. The surgeon was astonished and his exact words were, “Usually our patients don’t want that much information and find it overwhelming.” I answered him by saying that I’ve already been told I had cancer, and did he think I couldn’t take it? I was trained as a reporter, so my natural instinct was to get all the facts on the story and then form my own conclusions. I was very, very lucky. My father is a departmental head for a major medical college and I had access to the best of the best in their fields for second opinions.

There was no question in my mind that my surgeon was the top in his field and my trust in him was implicit. As far as the oncologists, let’s just say that I’m on my 3rd oncologist. The first one told me that I asked too many questions (wouldn’t you if you had been diagnosed with cancer?), and my second one spent under 90 seconds with me for each examination. The nurses were kind though, and they got me through the wretched chemotherapy. I am now with my 3rd oncologist (a woman) and I feel as though I’ve hit the jackpot. The best advice I can give anyone is to be positive. The way you go through the treatment will follow.
(Dawn, North Hollywood, CA, diagnosed in 2001 at age 47)

I told the doctor that I could not, and would not wait and that I needed the surgery done ASAP—not to mention the fact that I had a family vacation planned two days post-op and I was not going to miss it. I spend at least a week every summer with my brother, sister-in-law and three nephews in a cabin in northern Wisconsin, and I truly believed that the beginning of my road to recovery would be best started with them.
(Cindy, Cedarburg, WI, diagnosed at age 41)

My doctor was wonderful! Although the head of surgery at a large metropolitan hospital, he took the time to answer all my questions both before and after the surgery and during my follow-up appointments. I think a good patient must become her own advocate and do research and ask questions that will make the doctor think and respond. This sets up a rapport that makes you an individual in the doctor’s eyes and not just another patient.
(Sherry Gaffney, diagnosed in 1989 at age 47)

A local oncologist was very presumptuous about the results and treatment based on my age. He said I wouldn’t be able to do hormone therapy because my cancer wouldn’t be estrogen receptor positive, but in fact I did end up being positive. The next clue that I needed a second opinion was when he told me to cancel my wedding. I did get a second opinion at a Cancer Center in the city, and they were wonderful. I felt very comfortable with them. They gave me a recommendation about my treatment based on facts and never assumed anything based on my age. I did fine throughout the process. I think in a lot of cases I didn’t realize really how serious this all was, and I was in a lot of ways lucky that I had my wedding to look forward to. When you are in a whirlwind of doctors and treatments and just trying to save up some energy to spend with a new spouse, there’s no time to stop and think beyond what is happening at the moment. When you stop the chemo and radiation and only see doctors every three months, you start dealing with the reality of it all and what happens next. The worst part about dealing with the medical system is the insurance company and following exactly the right rules to get the coverage you deserve. Keep all the documentation of bills, insurance papers, copies of referrals, and notes of when you called and who you talked to. If you don’t have the energy or organizational skills to do this, find someone who can help you. It will make things easier. The last thing you need to worry about is insurance and paying the bills.
(Julie, diagnosed at age 26)

My husband, who is a doctor, usually does not give up but this time he did. His colleague who was a breast surgeon couldn’t/wouldn’t help. So I sent my husband over to some of our very good friends, and I went to an old friend who is also a doctor. I made a few phone calls and everything was planned before I went to bed that night. I was operated seven days later. I had chemo and radiation at the same ward I had worked for several years. I felt that they looked at me more like a colleague and a friend, and this made me feel very safe.
(Karen Lisa Hilsted, Denmark)

If you feel a lump or see any change in your breast, insist on a biopsy. Some doctors will say, “Let’s wait awhile and keep an eye on it,” but don’t settle for that, get it attended to now.
(Chris Lengert, Campbell River, BC, diagnosed in 1996 at age 52)

A good patient pushes past the fear and finds out everything she can about the disease and treatment options. She isn’t afraid to ask questions. I kept a notebook for questions and answers, and a multi-pocket portfolio with sections for appointments, chemo and radiation information, insurance info, perks from friends, receipts, etc.

I basically had two days to decide what to do. The first day I spent washing windows and ignoring the situation. The second day I contacted the Cancer Society breast cancer volunteer (who’s a friend) and we met for lunch and talked about it. My doctor is compassionate, caring and I felt I had known him forever.
(Cheryl Otting, Elkford, BC, diagnosed in 2002 at age 53)

I had a lumpectomy. Two years later I had a rash and a new lump soon after. I fear that cancer was already in my lymph nodes two years before, but because they didn’t check, it spread. I was very, very angry and disillusioned with the medical community.
(Heather Resnick, Thornhill, ON, diagnosed in 1997 at age 43, recurrence in 1999)

I had access to a leading breast cancer oncologist, a fabulous oncology breast surgeon, and an incredible plastic surgeon. I think everyone should get the best possible medical care that is available and accessible and not make any assumptions. One of the best places to get this information is from a support group.

Take someone you trust to all appointments with you. Take notes and ask questions. If your doctor doesn’t want to answer them or you don’t feel that he/she is being honest with you, find someone else. You cannot bury your head under a rock, as this is something you have to face head on. Learn the terminology and facts about what you are facing right now, but don’t get too far ahead of yourself. I chose a clinical trial because I want my cancer to mean something to those that will come behind me. I am scared to death that my daughters might have to fight this themselves one day.
(Peggy Scott, Waldorf, MD, diagnosed in 2002 at age 46)

The medical system was excellent. Small hospitals can be wonderful! My surgeon said to be safe there really was no choice but a modified radical mastectomy. I was happy to agree.
(Joan Fox, Victoria, BC)

My medical center has a wonderful program for breast cancer. It is a group diagnosis, and you meet with all your “new friends” individually on one day. They meet and discuss options and come to a group conclusion. I have been phoned by my surgeon three times to tell me the diagnosis of the biopsy and the surgery, by the radiation oncologist, and by psychologist. I call the radiation department my tanning salon.

I was treated in a small hospital (with the quality of a university hospital), in the “one day” department for oncology. I have been very lucky because I was treated as a person, not as a number. A good doctor to me is one who tells you the truth immediately and one who explains to you what’s going to happen next. “You have cancer,” is very hard to hear, but at least it is clear. You have to trust the doctors and do what they tell you. Ask all the possible questions so that there are no doubts left in your head. That’s what a good patient is, in my opinion—no dealing with doubts and half-truths. Stick to the truth, and use all the energy for positive fight.
(Annemie D’haveloose, Belgium , diagnosed in 1999 at age 45)

My oncologist was very intelligent and good at spewing stats and numbers but lacked a humanitarian touch. She was dogmatic whereas the patient needs to feel she has some control or choices. It was a “do this or else” attitude and that was very disempowering.
(Yvette, Victoria, BC, diagnosed in 2002 at age 47)

You have to look at each situation individually and let the doctors help you with the decision, but basically you must choose what will be done to your body. Some people can discuss things better than others, so take someone with you who is strong and supportive so as not to zap your energies. It’s good to talk to someone going through this even as early as just being diagnosed. Ask for copies of all tests. I wish I had known that after age 50 you can have a mammogram annually. Get a second opinion if you want it even if it delays the treatment; you will feel better mentally. It is your body.

You have to look at each situation individually and let the doctors help you with the decision, but basically you must choose what will be done to your body. Some people can discuss things better than others, so take someone with you who is strong and supportive so as not to zap your energies. It’s good to talk to someone going through this even as early as just being diagnosed. Ask for copies of all tests. I wish I had known that after age 50 you can have a mammogram annually. Get a second opinion if you want it even if it delays the treatment; you will feel better mentally. It is your body.

If I learned one thing about breast cancer from all of this, I learned how important it is to do your monthly breast exams. That is how I found my lump, and there was no doubt in my mind that the “golf ball” that I was feeling did not belong there. The annual mammogram is important too, but in my case, the mammogram that I had following the discovery of the lump showed nothing. Nothing! And my tumor was rather large. I am thankful that, despite the results of the mammogram, the medical personnel were proactive and immediately recommended seeing a surgeon. The rest is history. 

Friends brought me books on cancer, the hospital gave me information, and I researched breast cancer on the Internet. I was consumed with this wealth of information.

A biopsy came back negative, but the lump, removed by a lumpectomy, showed a malignant tumor. How could a negative diagnosis have turned into this nightmare? It was eerie, surreal. Margins were not clean so I had a radical mastectomy. Facing reality is a very difficult thing. Hugs from the nursing staff worked magic. The oncologist was brusque but thorough. I’m glad he wasn’t a wishy-washy kind of person. He was straight to the point and had a “get on with it” attitude. That helped me stay strong. Warm and fuzzy, I didn’t need.
(Virginia, diagnosed in 2001 at age 57)

I felt sorry for myself, living away from any family member and being by myself in rural southwestern Indiana. My arm swelled a lot and it was quite uncomfortable so I had to have the fluid aspirated. The doctor’s assistant was born to be a nurse. My surgeon was a younger man but very personable. He did not mind sharing information about his family so I got to know him somewhat on a personal level, which was important to me. I even got to know about his assistant’s dogs and other things, and that made them both seem more like regular people, a trait that I particularly appreciated. Within three weeks I was back to work because that made me feel like I was getting better and not letting this disease get me down.

That was an excruciating decision: Should I go for the standard treatment or the clinical trial? After researching on the Internet, and even consulting with statisticians about the significance of some early results, I took the decision of taking the standard treatment.

My first oncologist was very research- and not people-oriented. He strongly recommended that I sign on to a clinical trial and implied that I would get better follow-up if I were on the study. I wanted to make an informed decision but did not know where to turn. I called the oncology nurse and asked her where I could get more information and she said, “You don’t need any more information than what the doctor has already given you.” I found out months later (after the decision had been painstakingly made) that there was a library right in the oncology department, with tons of books and literature on breast cancer. The Quebec Cancer Foundation sent a stack of information. I had second and third opinions and chose not to participate in the study.
(Donna Tremblay, diagnosed in 1992 at age 33, recurrence in 1996)