Readers respond to questions posed by CURE.
The most meaningful advice a medical professional gave me was, "Do not isolate yourself. Remember you can be miserable anywhere." I thought my oncologist was attempting to be funny. As time passed, I heard those words every time I felt sick from chemical treatments, experienced phantom pain in my amputated leg, or started feeling depressed about my condition. Getting out of the house, even if only for a short period, made all the difference in the world. The other piece of advice came in the form of an order: "Get into a support group." My less enthusiastic husband didn't want to participate in a "group thing." Today, he is talking to other men about what they might expect from their cancer challenged loved ones. One last tip came from an RN: "Allow people to help you (they may need to help as much as you need being helped)."
At my last doctor appointment, the nurse practitioner said something that meant a lot to me at the time and continues to resonate. I am in my eighth month of treatment for breast cancer and have to get my one year mammogram next month on my remaining breast. I was getting anxious and also worrying that the one year anniversary of my diagnosis will be during what is sure to be a lovely vacation in Hawaii. She said, “I know women who can’t remember what year they had breast cancer. You will forget.”
The best advice I received was to wake up in the morning without an alarm clock. This helped me to understand that my body was recovering from serious metabolic changes during recovery and rest was required for me to successfully cope with the fatigue that lasted longer than I had anticipated. I went to bed when I was tired and I woke up when my body told me it was time to get up. My wake-up time went from 11 a.m. to 8:30 a.m. over the course of the last four years. I had no shame going to bed at 7:30 p.m. if I was feeling tired. Thank God I had sense enough to understand I was not in charge of my body at that time. Please encourage other survivors to listen to their bodies as they recover from their treatments.
When I received my diagnosis of metastatic breast cancer in 2006, I had been a smoker for several years. I enjoyed smoking and had no immediate plans to quit. My husband, Jim, was also a smoker. While I was in the hospital for a biopsy and then to have a medi-port installed, I was anxious to go home so I could have a cigarette. Like most smokers, I always turned to cigarettes in times of stress. I said, "I can't get through the biggest fight of my life without a cigarette!" Jim then repeated what my doctor had told him, "Smoking slows the healing process." Those five words changed my life. I didn't want anything to interfere with the healing process. I have now been a non-smoker for more than two years and I am in complete remission.
The best medical advice I had after a cancer diagnosis was from a psychologist who was a cancer survivor. She asked me to draw two circles and separate them into pie pieces for the different activities in my life before and after cancer. My post-cancer diagnosis circle was almost completely taken up by cancer. She talked about the need to gradually recover my life from cancer and to consciously begin to bring back the things that were important to me before diagnosis. This was an important exercise for me to keep cancer from overtaking my life and for me to recognize new positive areas of growth from my cancer journey.
After my diagnosis of melanoma, the nurse with me in the room advised me to use all the resources available at that facility. Not only the medical part of the treatment, but also the counseling, financial, spiritual, and nutritional components that go along with a cancer diagnosis. She sat down beside me, looked me in the eye and stated, "You are not in this alone." That started my journey dealing with my diagnosis. The facility has been so caring, professional, and supportive in my treatment. I feel fortunate to have them as my treatment facility. I have been cancer-free for about 19 months and still utilize the resources available.
Pamela B. P.
One of the most meaningful pieces of advice I've received during 22 years of cancer was from a surgeon who removed a stage IV melanoma from the side of my foot. At that time he told me that the statistics for survival past five years was 5-10 percent. However, he said those statistics were not derived from people that were 5-10 percent alive and 90-95 percent dead, but instead the statistics arrived from those who were survivors (100 percent alive) and those that were not. He continued telling me I could choose the group that I wanted to be in and of course, I chose the 100 percent group. Even though I've had several recurrences since then, I'm still in the 100 percent group. I believe this advice has kept me determined to be a survivor, along with the advice of eating healthy, exercising daily, and getting adequate rest.
I was diagnosed with stage 2 breast cancer at 37. I went to Memorial Sloan-Kettering in New York City for a second opinion and it was confirmed at that time that a mastectomy was needed. On my last visit to see my surgeon at Sloan before heading back home to Skaneateles, New York, where I would begin my chemotherapy, she told me, “The next nine months are about you. Make sure you take advantage of your family and friends to help you manage your home and your children and focus on yourself. Everything will be waiting for you once you get through four months of chemotherapy, reconstruction surgery, and six weeks of radiation.” That was the best advice I could have received. I knew that I would get through everything but her words made it all happen.
The feeling of losing control was devastating. I was discussing the whole spin with a surgeon and he said, "You can't control what gets put on your plate, but think about how you swallow it, what can you control?" I could not control that my hair was going to fall out, that I may or may not survive, or that I may or may not be sick. I thought about those types of things and took control. Before my hair fell out, I had a party and had my girlfriends shave my head. Cancer lost control. When I was having chemo treatments, I envisioned the drugs going through my body like Pac-Man, gobbling up each cancer cell that they encountered. I thought, "OK, take that," and chuckled, feeling stupid but exhilarated. I thought about surviving, what my husband and I were presently doing, and we both made changes. I feel in control, I celebrate the blessings of my life, and new breasts at 50 aren't all bad.
I was blessed to fall into the hands of an amazing breast surgeon. The most important thing she said to me on the phone when I got my diagnosis was, "This is not a death sentence."
After a lumpectomy of my right breast in 1985 at age 62, and subsequent radiation and removal of that offensive breast in 2000 with chemotherapy, I received a diagnosis of cancer in the left breast was made in 2006. The same week, both of my daughters were also diagnosed with breast cancer. They were 56 and 52. I was filled with grief and horror, feeling that I had somehow passed on the propensity for their cancers. My doctor went to great lengths to convince me that surgery was required and that outside of the cancer, I was a healthy 82-year-old and I owed it to my daughters to have another mastectomy. Now, at 85, I am still actively involved in community affairs. My daughters, both nurses, are doing well, both having bilateral mastectomies. Without such a caring physician, the outcome might have been very different.
I was diagnosed 10 years ago with stage 4 ovarian cancer and was given 3 months to live. Needless to say this is not a message from "the other side." I did everything my new oncologist said. This included chemo, surgery, and a visit to a nutritionist. The wisest advice was when I was told to read the 23rd Psalm at least 3 times a day or more if anxiety or pain was a problem. The 23rd Psalm has deepened my faith and ability to be able to deal with being an active survivor. I still walk and pray and do mental imaging and I always try to start and end my day with the 23rd Psalm—many times at night I fall asleep before I even finish saying it.
My oncologist said "We are going for the cure." We knew that was not what he was supposed to say, but he did. And it gave me and my husband hope, especially since I had a stage IIIB breast cancer. Nine years later, I'm still here and still NED.
The most meaningful piece of advice was: Keep up with the copies of all your medical records in a folder to take with you when you move or add a doctor.
After I learned it was necessary to have a mastectomy, my physician looked me right in the eyes and said, "You are going to be a cancer survivor." The most meaningful thing he gave me was hope. And here I am two and a half years later, still alive, still here. Praise God!
On meeting with my breast surgeon after my positive biopsy, she put her hand on my shoulder and said, "This is not life-threatening." That was the first and best thing she could have ever said to me! My cancer was found on a routine mammogram and was given a stage of 0, which used to be considered pre-cancerous. My doctor discussed my treatment options with me while my daughter took notes. She made sure to ask if my daughter had any questions, and explained how my diagnosis would impact my daughter's future health care. My surgeon is kind, compassionate, intelligent, and everything you could ask for in a physician. I had a very easy journey in my breast cancer battle and get very emotional whenever I see my doctor as I know how important she was in making my battle so easy.
After I finished crying when the doctor gave me my initial diagnosis, he put his hand on my knee, leaned into me and said, “I need you to get angry at the mass in your chest and make the decision right now that you are going to fight it and win, because you can beat this if you get angry. Don’t waste your energy getting angry at your Higher Power because it serves no purpose. Get angry at the cancer and make the decision that you are going to beat it.” I took his advice, listening to the soundtrack from “Rocky” during my chemo treatments, and visualizing me as Rocky pulverizing my tumor. Half way through my treatment, my tumor had shrunk by 90 percent and I’m now happily living in complete remission, and I truly believe it is because that doctor instilled the fighting spirit in me from day 1.
After diagnosis and debulking surgery for ovarian cancer, stage III, a 'fellow' doc visiting from Ireland gave me the following advice, "Stay strong, drink lots of water, and just get through it." I hung on to those words for five months as I went through my chemo, although there were times I wanted to quit the very toxic treatment. Two and a half years later, here I am, strong, and cancer-free.
The most helpful thing my doctor said was to not think of myself as a cancer patient or victim. He said to think of it as an illness that I had and is gone now just like any other illness that I've had. It really helped me and it made sense. I feel much better now and don't think of cancer much even though I am still having side effects. I will figure out how to deal with them just like any other changes my body goes through. I now understand living in the present. This has helped me tremendously.
"Never listen to statistics—they're based on old news and don't consider the new advances made in fighting cancer."
W. Gordon C.
I asked him, "What should I do?" He replied, "Do not lay on the couch.” I took this to mean that I should not feel sorry for myself and live life as normally as possible. I decided that I am allowed 10 minutes of self pity when things are tough or there is a setback. Then (as the song goes), 'I pick myself off, brush myself off, and start all over again' to live my life as normal as I did before my diagnosis.
When they told my husband at M.D. Anderson that they would not give up trying anything and everything in their power to try and save his life - “We will not give up on you. We will not give you a time frame on how long you may expect to live because you could walk outside of our building today and get hit by a bus. Instead, we will try everything within our power to do what we can to help try and save your life.” Even after receiving the devastating news his cancer had spread, their words gave him the will to fight and hope that maybe something could be done to help save his life. Even with grim news, doctors play a major role in a patient’s life by assuring them not to give up.
Being a gerontological nurse practitioner, it was natural for me to focus my researching skills on my papillary thyroid cancer diagnosis in preparation for the pre-op meeting with my surgeon. “Knowledge is power,” was his response to my manila folder of recent articles downloaded from reputable Internet sites. I have never forgotten that response and will be forever grateful that this doctor, whom I had not previously met, was secure enough in his expertise that he could meet me where I stood—with my high need for a sense of control via information. Because of that experience, I have had the opportunity to recommend this surgeon to others and I have delighted in hearing nothing but highest praise for his remarkable combination of personal and clinical ability.
Chris M. W.
The best advice I received from my oncologist at our first meeting after being diagnosed with ovarian cancer was that his role is to get me the best possible care and that we are a team in this together. I came prepared with my binder filled with notes, questions, and clinical trials. He came into the room with his very large binder and we reviewed the information I brought. He answered every question, was reassuring, and we never felt rushed during the appointment. My husband and I came away feeling confident that we had made the right choice.
As cancer survivors all know, life after treatment, with all its uncertainty, can be more difficult, in some ways, than during. Many of us, before we ever had a cancer diagnosis, conjectured that various aches and pains might in fact be symptoms of the dreaded disease. At my first post-chemo meeting with my oncologist she gave me two valuable pieces of advice. Number one was, “If you feel good, you’re probably doing well.” The second was her “two week” rule. “If you’re troubled by a symptom for more than two weeks, call me, otherwise, it’ll probably just go away.” She’s a woman of few words, but they are profoundly comforting.
One of the most important things that my chemo nurse told me was that it was easier to prevent nausea than treat it once it started. Boy, was she right!
When I was first diagnosed with cancer it was all I could think about. I literally felt I was cancer. The most meaningful words any doctor every said to me were, "You're still you. You still have the same likes and dislikes. Cancer can't take the essence of who you are away." Those words have stuck with me over the seven years since and as I now go through the cancer experience a second time, they are even more valuable. Cancer is a disease. It doesn't define who I am, it is just a part of my life experience.
When I was reeling after being diagnosed with multiple myeloma, my primary care physician, who was the one that caught it in a routine physical, advised me to be proactive about my care before handing me off to a large cancer center. I try to be proactive by realizing medical professionals do not always know what is best for me, and don’t always tell you about all the choices available. Do your homework, and don’t be afraid to challenge or disagree with advice.
When my six months of chemotherapy was over and my bilateral mastectomies were behind me, my oncologist simply said, "You have been living and breathing cancer for 6 months. Now, get out and get your life back." That is exactly what I did. I am now an 18-year breast cancer survivor and 15 of those years have been volunteering for the Cancer Care Center of Southern Arizona. Life has never been better.