A helpful guide for the newly diagnosed.
Every day, it seems I’m hearing of someone else who’s been diagnosed with breast cancer. Often these are friends or friends of friends. Since I’m three years post-diagnosis, it isn’t surprising when I receive an email or text asking for answers to some of the same questions I had when I was new to cancer. Those questions prompted me to come up with a quick and easy beginner’s guide to breast cancer. I’m calling it “the ABCs of breast cancer.” While it doesn’t cover every topic related to breast cancer, it gives a good overview. I’d also like to add a disclaimer here: I am not a medical professional. Please check with your doctor on implementing any advice you read here.
A is for Anxiety, Answers and Anger — Upon an initial diagnosis of cancer, the first feeling usually felt is that of anxiety. An overwhelming sense of fear usually sneaks in right behind anxiety. After the initial shock has worn off slightly, the newly diagnosed person needs answers to a myriad of questions. Every question, no matter how large or small is important. It is a patient’s right to ask these questions without fear of embarrassment. Oftentimes, the doctors don’t have time to do this, but nurse navigators or other staff can step in to fill the void, helping the patient understand and feel at ease. Anger often follows as the person comes to terms with a diagnosis. These feelings are real and should be acknowledged.
B is for Bewilderment, Breast and Bravery — Being told you have cancer is overwhelming and a shock to the system. Feeling bewildered, like a deer in headlights, isn’t only normal, it’s to be expected. You’ve just received news that will impact your life forever. Who wouldn’t be bewildered at that?
B is also for breast. A breast cancer diagnosis focuses all kinds of attention to your breasts. If you’re modest, be ready to throw that out the window. More people will see, handle and touch your breasts over the next few weeks than you ever imagined.
B is also for bravery. Bravery is defined as the quality or state of having or showing mental or moral strength to face danger, fear or difficulty. A synonym for bravery is courage. The newly diagnosed will find an overwhelming need for bravery to face the unknown.
C is for Crying, Cancer and Counseling — The word “cancer” strikes fear into the heart of many. The emotions it dredges up are often preceded by tears. As a person does her best to understand how and why she got cancer, crying becomes a wonderful emotional release. It’s been scientifically proven that crying stimulates the production of endorphins, our body’s natural pain killer and “feel-good” hormones. The tears will come, but they are beneficial in helping get past the initial shock of diagnosis.
C is for cancer. Upon diagnosis, cancer becomes the all-consuming subject matter of conversation. Don’t be surprised that your diagnosis spreads like wildfire. Either you, your family or your friends will spread the news. It’s not that they want to be malicious. Most people are genuinely concerned about your health and want the best for you. Don’t be surprised at how fast you become a “cancer expert.” You’ll probably want to do research after your diagnosis to learn more about the type cancer you have, about recommended treatments, or other cancer related topics. Knowledge is power, and you’ll want to equip yourself with as much knowledge as possible.
C is also for counseling. Receiving a cancer diagnosis is difficult on many levels. Counseling may help you be able to process your thoughts, fears and concerns. There are usually free counseling opportunities at local breast care centers. Ask your oncologist for recommendations of good facilities near you.
D is for Diagnosis, Drains and Depression — It’s important to understand your diagnosis. When you go to receive your initial diagnosis, take a friend or family member with you. They can jot down all the important facts. As you are listening to the doctor and trying to process what you’re being told, you may be overwhelmed and be unable to comprehend everything.
D is also for drains. If you have a breast removed, you’ll more than likely have one or more Jackson Pratt or JP drains. These bulb like drains will help remove fluid from your incision site and will promote healing. They can be quite the nuisance but they are necessary. Be prepared to follow your doctor’s instructions for measuring and draining the bulbs.
D is also for depression. Feelings of discouragement are normal after a diagnosis but if those feelings get deeper and stronger, you may need medication or counseling. Talk to your doctor for advice.
E is for Epiphany — There’s nothing like a diagnosis of breast cancer to make you re-evaluate your life. Facing a life-threatening illness can help you see what’s most important and help get your priorities in order.
F is for Friends, Fatigue and Five — Friends can be lifesavers as you go through treatment. They can offer love and support by taking care of your practical needs. Don’t be afraid to allow them to help.
Fatigue is a very real part of breast cancer. It comes in all forms and fashions. Some fatigue is directly related to treatment such as chemotherapy or radiation. Learn to listen to your body and rest when you need to rest. Don’t feel the need to apologize for being tired. People usually understand that your body has been through extensive trauma and will cut you some slack. It’s important to rest so your body can heal properly.
F is also for five. Five is a milestone-marker that doctors give to those who’ve been diagnosed. Five can easily become the “magic number” breast cancer patients look toward with great hope. Five doesn’t guarantee there won’t be a recurrence but doctors feel if a patient passes that five-year mark, chances of recurrence greatly diminish. Try not to get hung up on statistics. Every case is different.
G is for Grief and Guilt — When you’re diagnosed with breast cancer, it’s normal to feel grief and guilt. Grieving over lost body parts may seem ridiculous but just like a person who’s lost an arm or leg, breasts are a vital part of who we are as women. Guilt comes when we wonder what we could have or should have done to have kept from getting cancer. Don’t beat yourself up for feeling grief or guilt. Again, these feelings are perfectly acceptable and normal.
H is for Help, Hope and Hormonal Therapy — I’ve already touched lightly on allowing friends to help. Your needs for assistance may change with each course of your treatment. Don’t hesitate to be vulnerable. Ask for help with you need it.
H is also for hope. There’s a beautiful poem by Emily Dickinson entitled “Hope is the thing with Feathers.” The first stanza of the poem reads: ““Hope is the thing with feathers that perches in the soul and sings the tune without the words and never stops at all.” Isn’t that beautiful? Hope will be the key to your survival. Always look to the future and keep pressing toward the goal of getting through each phase of your treatment. A positive outlook is vital.
H is also for hormonal therapy. Depending on what type of hormones feed your cancer, you’ll probably end up taking one of several anti-hormonal medications. Tamoxifen, Aromasin, Arimidex and Femara are among the most commonly used drugs. Each of these medications comes with its own set of side effects. If you try one and it doesn’t work well for you, talk to your oncologist about making a change. The recommended length of time for taking anti-hormonal drugs is five to ten years but your doctor will prescribe the perfect dosage according to your specific case.
I is for Itch, Infection and Internet Junkie — Itching is a common problem during the healing phase. Stitches can itch. Radiation burns can itch. Some chemotherapy medications can even cause itching. If itching becomes problematic, talk to your doctor. There are many prescription or over the counter creams that can help.
Infection is an “I” word no one likes to talk about but infections can and often do happen. Always watch your incisions and report any unusual redness, swelling or oozing to your doctor immediately. Infection can be controlled if caught early.
I is also for internet junkie. Be careful about becoming addicted to researching cancer information. Some resources are reliable and some are not. If you must search, be sure to choose reputable sites such as ones hosted by the American Cancer Society or cancer research hospitals like the MD Anderson Cancer Center.
J is for Journey, Joy and Jokes — The day you receive your diagnosis, you begin your breast cancer journey. Some people don’t like to use the term “journey,” but every step forward after your diagnosis takes you places you may not want to go, so it is technically a journey. As you progress, you’ll find yourself further along than you were in the beginning of your journey. Chances are you will find difficult parts to the paths that lie ahead of you, but just keep putting one foot in front of the other and you’ll be moving forward.
J is also for joy. Finding joy in the journey can be challenging, but it is doable. Take pleasure in those small moments of laughter you might share with a friend, or gifts of love and concern from others.
J is also for jokes. Breast cancer is no joke, but if you can choose to laugh at yourself along with others, it helps lighten the mood a bit. It’s easy to find humor if you look for it.
K is for Keeping It Real — If you’re not careful, you can fall deeply into the world of cancer and forget you still have a life outside that realm. Trying to keep things as normal as possible can be a challenge, but if you try to maintain your schedule to the best of your ability, it will help not only you but your loved ones, too. Try to do ordinary things. It’s hard when everything seems to point to your current health situation, but you’ll be glad you did.
L is for Looking Good, Lymphedema and Lymph Nodes — Looking good helps you feel good. Even if you don’t physically feel up to it, try to keep your outer appearance as clean and fresh as possible. Wash your face and hair on a daily basis if you can. Put on clothing that helps brighten your mood. Wear a little makeup if you’re up to it. Even just putting on a colored lip gloss can help lift your spirits.
L is also for Lymphedema. If you’ve had lymph nodes removed, there’s a real possibility you may develop lymphedema at some point after your breast cancer surgery. It’s important to pay attention to any swelling or tightness in the limb nearest your surgery site. Report your findings to your doctor and follow any advice he or she may give regarding reducing the risk of lymphedema. Lymphedema is a lifelong condition. It is not curable, but it is treatable. Compression sleeves and compression garments can help alleviate swelling. Manual lymphatic drainage or physical therapy can also help with discomfort. Lymph nodes are found throughout our bodies. They help carry lymphatic fluid. Lymphatic fluid is filled with waste and toxins our bodies remove on a daily basis. Lymph nodes help fight infection and are a vital part of your immune system.
M is for Mastectomy — After a breast cancer diagnosis, you’ll likely be told you need either a lumpectomy or a mastectomy. A mastectomy is the removal of the breast and all breast tissue. There are many different types of mastectomies – single, bilateral, nipple sparing, partial, preventative, and modified radical. The type will depend on your specific type of cancer and what your choices are regarding reconstructive surgery. A mastectomy can be a very difficult and personal choice to make. Before deciding on a mastectomy, weigh your choices carefully. Your doctor will present information to help you choose the best option for you.
N is for Nurse Navigator, Nipple and No — After your diagnosis, you will be assigned a nurse navigator. He or she will be responsible for helping you navigate through your surgery, treatment and follow-up care. The navigator will be a vital link for providing the missing pieces your oncologist might not have time to cover in detail. Consider her a best friend. Ask those questions you might think are too silly for your doctor. Navigators are there to help.
N is for Nipple. If you must have a mastectomy, sometimes the doctor can perform a nipple-sparing surgery. If your nipples are not able to be saved, they can often be rebuilt from other bodily tissues. In the event your nipples can’t be saved and you don’t want to reconstruct them, there are other options. Stick-on nipples are available and some women choose to have tattooed nipples applied.
N is also for the word “no.” Learn to say no. Such a tiny word has such great power and can help you learn to set up healthy boundaries. Saying no will protect you from doing things you don’t feel up to doing. You have the right to say no.
O is for Oncologist and Outlook — Your oncologist is a doctor who specializes in the field of cancer (oncology). An oncologist oversees a patient’s care from the cancer diagnosis throughout the course of the disease. The oncologist’s role includes explaining the cancer diagnosis and stage to the patient, discussing all treatment options, delivering high-quality, compassionate care and helping the patient manage cancer-related pain and treatment side effects. You will more than likely have a long relationship with your oncologist so you’ll want to have one you can talk to freely. If you don’t like your oncologist, you can choose another. It’s important to find one you feel comfortable with and one who will listen to you.
O is also for outlook. Your outlook will affect your recovery. Try to think positively. An optimistic outlook will help not only you, but those around you, cope with your diagnosis.
P is for Privacy and Prosthesis — When you’re diagnosed with breast cancer, you might as well expect your privacy privileges to go out the door. If you’re modest, like me, you’ll just have to do the best you can to keep yourself covered. But just because you feel like a specimen under glass, you still are a human being and you still have rights. Speak up and speak out. It’s your body and you deserve privacy and respect.
P is also for prosthesis. If you’ve had one or both breasts removed, you’ll be given a prescription for a prosthesis. A prosthesis is a substitute for the breast you’ve lost. Prostheses are made from silicone and feel quite lifelike. There are also some lightweight options available. These can be made from polyester fiberfill or other materials. It’s your choice whether or not you want to wear a prosthesis.
Q is for Questionable Vocabulary — Once you’ve been diagnosed with breast cancer, you’ll hear all sorts of words you’ve never heard before. Most of the words will relate to medical terms. Being placed under a linear accelerator sounds exciting doesn’t it, but it’s just fancy wording for the machine that delivers your radiation dosage. Or you might hear you need an Oncotype DX test. That’s just form of genetic testing to help determine your rate of recurrence. If you hear a word you don’t understand, ask for clarification.
R is for Radiation, Results and Relationships — You may or may not need radiation. Depending on your diagnosis, your doctor will decide what course of treatment is best for you. If you go through radiation, be prepared for some fatigue about midway through your treatment. It will go away, but can be bothersome.
R is also for results. Waiting for test results can be quite tedious and time consuming after a breast cancer diagnosis. It’s easy to let fear get the best of you while you wait, but remember, when you worry, you’re borrowing trouble. Hold on to hope.
R is also for relationships. Don’t be surprised that cancer can change your relationships with family and friends. Some people won’t be able to handle your illness while others will rally around you quickly. For those who choose not to support you, let them go. Instead shift your focus to those who will love and encourage you. You’ll need all the support you can get as you go through surgery, treatment and the aftermath of breast cancer.
S is for Self-Pity, Sex and Support Groups — Cancer is never easy to accept, and it’s not hard to fall into the pit of self-pity. With so many questions unanswered – like “Why me?” – self-pity seems to be a fairly normal and expected response. Try not to fall into that trap, though, because self-pity can quickly lead to depression and none of us what to go there. Depression is a deep, dark, scary place that’s hard to climb out of by yourself.
S is also for sex. Don’t be surprised if your sex life changes after breast cancer. You may need to make some adjustments for physical comfort. You may find your mate is less interested. Talk to your doctor about recommendations that can help.
S is also for support groups. Most all breast cancer centers offer free support for patients and survivors. It’s good to be around others in similar circumstances and it’s a safe place to vent.
T is for Time and Trust — Time becomes so much more valuable after a diagnosis of breast cancer. It seems every minute is precious. Guard your time and savor every second.
T is also for trust. It’s important to be able to trust your medical team. If for some reason you don’t have confidence that you’re getting the best care, it may be time to make a change.
U is for Unsung Heroes and Uncertainty: Unsung heroes are the people who often go unnoticed. Sometimes it may be an aid in the hospital or a secretarial staff member. The people who go out of their way to be helpful are often the ones who touch our lives the most. Don’t forget to notice them!
U is also for uncertainty. Cancer leaves a lot of questions unanswered. Take one day at a time and live in the moment. Being uncertain leads to fear and fear can lead to depression and doubt. It’s normal to be anxious about not knowing the answers to those important questions, but chance are you’ll have to wait for some of those answers longer than you expect.
V is for Visitors and Victory: From the onset of your diagnosis, you’ll probably be blessed with visitors. They love and care for you. They’ll want to know what they can do to help or they may just want the latest update. When you feel up to visitors, enjoy them. When you aren’t feeling well, help them respect your need for rest by telling them you’d appreciate them coming back another day.
V is also for victory. Each little hurdle you cross is cause for celebration. Let each little victory propel you forward with hope.
W is for Waiting, Waterproof Mascara and Weight: Waiting will take up a good portion of your time, so get used to it! Visits to doctors, medical tests and treatment will be your focus. Learn to be patient as you wait, and if you can’t do that, take something to keep your mind occupied. A good book, needlework, a tablet or your cell phone can help pass the time as you wait.
W is for waterproof mascara. If you’re like me, you’ll shed a million tears over the course of your first steps into the world of cancer. Waterproof mascara has been a lifesaver and has helped keep me from looking like a circus clown.
W is also for weight. Be prepared for weight fluctuations as you go through treatment. You may lose weight or gain. Chemotherapy often causes weight loss while anti-hormone therapy can cause weight gain.
X is for X-ray: X-rays are used diagnostically during your care. Technicians will offer lead aprons to protect vital organs as you undergo the procedure. X-rays do not hurt.
Y is for You: You are the most important person in your breast cancer journey. Don’t forget who you are! Cancer doesn’t have to become your identity. Just because you’re going through breast cancer, you’re still the same wonderful person you were before you were diagnosed.
Z is for Zzzzs: Breast cancer can cause disruptions in your normal sleeping pattern. You may experience insomnia or it may be difficult to find a comfortable sleeping position. There are medications that can help and pillows will become your best friend. Do whatever necessary to get good quality, uninterrupted sleep. Sleep helps your body heal.