This section contains nonmedical advice from survivors, caregivers, and CANCER101. These contributions are provided to help make your journey a little easier.
Below please find advice by subject. If you have advice to share, please tell us!
C102 - Now what? What to do first when you learn you have cancer
First, take a deep breath and try not to panic. We know that hearing those words, “you have cancer” is scary. But many cancers are treatable, so try and stay positive until you know all you can about your diagnosis. The more you learn, the less panicked you will feel.
You may want to avoid researching on the internet until you speak with a specialist about your cancer. Every cancer prognosis is unique because of the person’s age, gender, current health status, family health history, the genetic make-up of the cancer and when the cancer was caught. Make sure you know what you are researching first!
Try not to panic and rush into treatment decisions before you have had a chance to think about your options, outcomes and associated costs. It’s important to understand the new terminology and explanation your doctor(s) have provided. Make sure you have all your questions answered. There may be more than one option to consider, and a clear head is necessary for decision-making.
Call your insurance company right away. Tell them about your condition. Ask to have a “case manager” so that you have only one person to talk to for all your questions, getting approvals, bills, reimbursements, etc. If you don’t have insurance, don’t panic. There are financial resources inside the National Cancer Resource tabbed section to help you.
Ask the nurse with whom you book your appointment what you need to bring with you to the appointment. If you have a pathology report or scans, you will need to bring those. If doctors don’t have all your information, they won’t be able to discuss your cancer and treatment options. Don’t sit in the waiting room for hours only to eventually find out you didn’t bring the essential reports.
Be prepared for your doctor’s appointments. Use the questions found in this planner, which were providedby Cancer.Net. If your cancer type is listed in the myCANCER101 tab, make sure to download your supplement and insert it into the planner so you have questions specific to your tumor. If your cancer is not listed in the myCANCER101 tab, go to Cancer.net and you may find cancer-specific questions posted on their Web site. Make sure to write down your own list of questions too. Being prepared before your meet with the doctor is really important.
Try to bring someone with you who can take notes and ask questions with you. If this is not possible, prepare questions in advance and bring a tape recorder and tape the doctor’s conversation with his or her permission. Or ask a nurse or volunteer at the doctor’s office to take notes for you.
Learn about your treatment options so you can make good choices. Get a second opinion or even a third from a surgeon and/or oncologist (and a plastic surgeon if needed). Don’t be afraid to ask doctors lots of questions. The more you understand, the less frightening and overwhelming your treatments will be.
Find a doctor who takes part in a tumor board. A tumor board is an approach to treatment planning in which several doctors with different specialties meet regularly to discuss the medical condition and treatment options of individual patients. A tumor board might be made up of a medical oncologist, who treats cancer with drugs, a surgical oncologist, who treats cancer with surgery, and a radiation oncologist, who treats cancer with radiation.
Designate a friend or family member to communicate to your friends. You will be receiving many phone calls from well-wishers and repeating your updates will become tiresome. There are also internet options for you to help keep friends and family informed. Find those resources in our National Cancer Resources tabbed section.
If you work and are concerned about how to talk to your employer, go to cancerandcareers.org. It’s geared toward women, but the great advice it offers is for everyone. It’s very important for you and your caregiver to understand the cost of your treatment options compared to the benefits of those treatments. For example, some therapies boast that that they give patients a “better” prognosis than another treatment option but will require a great deal of money because they are not covered by insurance. Find out what “better” actually means because if studies show that the treatment outcome is only better by six weeks, for example, do you really want to mortgage your home, spend your children’s college savings and incur massive amounts of debt?
C103 - Surgery
Before surgery Try and pick a surgeon who specializes or is certified in your tumor type. Some general surgeons say they specialize in a particular type of surgery because of the number of patients on whom they have performed the surgery. However, a surgeon certified in a specialty (colon or ovarian, for example) will have had specific training in that specialty and therefore has the expertise required. Also, a certified surgeon is usually more knowledgeable about the latest technology and techniques.
It is important to ask your surgeon or the coordinating nurse if the anesthesiologists they work with are covered on your insurance plan. Many anesthesiologists do not take insurance and can charge you well over a thousand dollars. For many patients, they only learn about this expense on the actual day of the surgery when they meet their anesthesiologist for the first time.
If you have time, prepare fresh, healthy meals ahead of time and freeze them. Better yet, ask a friend to bring foods to your home. Friends are always looking for ways to help. Let them cook!
If you do not want to have a lot of flowers sent to you in the hospital, talk to your friends and relatives ahead of time. You might suggest a donation to a charity, or a helpful favor, such as walking your dog, taking in your mail, or a trip to the market.
Designate one friend or family member to help organize your needs and delegate them to those who want to help. Having one person manage it all will make it easier for everyone.
If you can, treat yourself to new pajamas and/or new sheets for your return home after your surgery. If you must go through surgery, you might as well give yourself something special to enjoy! If you can’t afford new items, make sure your bed is made up with freshly laundered sheets and your favorite pajamas are ready to wear.
Ask your surgeon if you will need to purchase special clothing. For example, individuals mastectomies need sports bras that close in the front and oversized soft tee-shirts or button-down shirts because it’s difficult to raise their arms. For surgeries in the abdomen or midsection, cotton nightshirts are more comfortable than pajama bottoms that might rub against your stitches.
If plastic surgery is an option, ask your plastic surgeon if you can see photographs of surgeries from their other patients. Seeing the different stages of the process can help you feel less anxious. Most patients are happy to help a fellow cancer patient and show them their results. Ask your plastic surgeon if he or she can introduce you to one of their patients with a similar cancer.
The anesthesia takes a while to clear out of your system. You will feel tired and dizzy for a few days after your operation.
Keep your doctor’s telephone number and your pharmacy number in your CANCER101 planner.
Ask your doctor what signs and symptoms you should report and call into the office.
Make sure your living area is safe. Keep a night light on in case you need to get up in the middle of the night. Move throw rugs so you don’t trip.
Talk to your surgeon about the after-effects of your surgery. If surgery is likely to affect your muscle strength or increase your risk of Lymphedema, you should see a physical therapist.
If reconstructive / plastic surgery is an option
Choose a plastic surgeon wisely. Ask to see photographs of the doctor’s work and ask to meet one or two of his or her patients. How you look at the end of your surgery may not seem important to you now, but years down the road, it may be.
If the plastic surgeon does not have pictures to show you, it may be because he or she does not have enough experience. Make sure to pick a plastic surgeon that does this type of surgery all the time.
Take the time to learn about your options. There are many from which to choose.
C104 - Chemotherapy
There are many different kinds of drugs, each designed to fight specific kinds of cancer cells. Many times, two or more medications are used in combination at the same time or separately. It is also possible that your chemotherapy will consist of pills, taken by mouth. Most times, though chemotherapy will be given intravenously, through a needle in a vein or through a port that may be inserted for easier and safer access. Your doctor will explain the action and side effects of the drugs used to treat your particular cancer. There may be more than one option for you to choose from. Make sure you understand your treatment options and their side effects so that you can make the best decision for you.
Chemotherapy may cause infertility. If you are told you are having chemotherapy and you are planning to have children in the future, talk to your doctor about your options.
Chemotherapy can weaken your immune system, making it difficult to fight off infections That said, go to the dentist, get your teeth cleaned and take care of any dental issues before your chemotherapy. If you have to have dental work done during chemotherapy, you risk getting an infection from the bacteria in your mouth.
It may be helpful to bring someone along to your treatments for company. You may want to put together an activity bag with some light reading, puzzle books, a deck of cards, a music device with headphones, a book on tape or even a laptop for movies and games to pass the time. If you are undergoing treatment for a long time you and your companion might get hungry. Bring nutritious and delicious food with you if you don’t like the food served at your cancer center. Just make sure it doesn’t have a strong odor. Many do not like the smell of tuna, for example.
Speak with your oncologist or a nutritionist about developing a diet plan during your treatments. Depending on the type of chemotherapy you will take, some foods should be avoided during your treatments, and others will give you more energy. Many cancer centers have a dietician or nutritionist who is an expert in cancer dietary needs. It is great to learn from them! If your center doesn’t have a nutritionist, look up nutrition resources in the National Cancer Resource tabbed section in the planner to learn more. You can also contact the American Dietician Association for more information.
Beware of “chemo brain”! Chemotherapy can make you forgetful. Writing everything down helps a lot. Don’t be shy about telling your coworkers or family if you are having trouble keeping things straight. They need to be aware of this and to help when possible.
Walk, do simple yoga stretches, or go to a program offered by cancer centers and support programs. Just moving or doing something creative will cheer you up and take your mind off the physical side effects of chemotherapy.
Ginger-flavored teas, hard candies and lollipops are terrific for combating nausea. Ask a nutritionist to make other suggestions to help combat your nausea.
If you are the type of person who puts medication in a weekly or daily pill box, make sure to keep your medication bottles on hand just in case you have an allergic reaction.
If you feel sad or depressed, that’s OK too. Make sure to ask for help! Speak with your cancer center’s social worker or therapist, or consider calling one of the many organizations that offer support groups. Just know you are not alone and that there are many, many options available. Remember, it’s a strength to ask for help.
Just when you start to feel sorry for yourself, try doing something to shake it off. Do something nice for someone else. Doing a good deed for someone in need, however simple, will make you feel needed and appreciated, and it will take your mind off the emotional and physical side effects of chemotherapy.
OK, you still want to feel sorry for yourself? Then treat yourself to a funny movie, a slice of chocolate cake or a foot massage!
C105 - Radiation
For many who have had chemotherapy, radiation seemed much easier. But remember, it still is treatment and it will make you tired. Make sure you are able to give yourself time to rest.
If you have a full-time job or children that come home from school mid-afternoon, try and schedule all your radiation appointments first thing in the morning. When radiation machines are being used for hours on end, they sometimes need a break from being used too much. This can cause a long back-up of waiting patients which can be stressful for those who have afternoon commitments.
Radiation can irritate the skin. Wear an old t-shirt to bed and use ointments recommended by your doctor or nurse. They help soothe the skin.
Pure aloe helps irritated skin. You can get it directly from the plant or buy it at a drug store.
A cold, wet tea bag helps soothe your irritated skin.
C106 - Hair loss
Hair. OK – everyone is anxious about losing their hair. But if it must happen, here is a really great way to look at it. Think of chemotherapy as the insurance you need to make sure your cancer never returns. When you reach old age you can look back and think, thank goodness I had that insurance.
Ask your insurance company if they will pay for a wig or prosthesis. If it does, your oncologist can write a prescription for reimbursement.
If you cannot afford purchasing a wig, ask an oncology social worker to recommend a local nonprofit that provides free wigs.
You may want to purchase a soft cotton hat to wear to bed to keep your head warm.
Ladies, if your doctor tells you that you will definitely lose your hair, get a cute, short haircut for the few weeks you still have your hair. It can help get you ready for the “bald” look. Your new haircut will also give you something to look forward to when your hair grows back.
Buy a wig before you lose your hair. You don’t have to buy an expensive wig! It may be uncomfortable and you may not like wearing it. You may decide you prefer wearing a hat or scarf instead. If you decide you will wear a wig every day, you can always upgrade it to a better one.
Fake hair wigs tend to be lighter and more comfortable to wear than real hair wigs. They are certainly a lot less expensive too.
Plan ahead and make an appointment to get your head shaved before your hair starts to fall out. Finding hair on your pillow or having it fall out in the shower can be pretty difficult. Shaving your head just before your hair starts to fall out will ease the anxiety. Make sure you have your head shaved completely. A buzz cut or stubble is really uncomfortable while sleeping or wearing a wig. In fact, it actually hurts a little. So take it all off. Close your eyes and let them buzz away. Once it’s done, it’s really not so bad!
C107 - Advice for singles - What to do if you don't have a caregiver
We are all about going “green” but now might not be the time. If you live alone, paper plates and plastic cups, bowls and utensils are essential. You won’t be in the mood to do the dishes and looking at dirty dishes will only make you moody! Give back to the environment when you are feeling better.
If you live alone, ask someone to stay with you for as many days as your surgeon suggests. Some surgeries will have you up and about the next day while others might take several weeks.
Keep pain medicine and a glass of water next to your bed before you go to sleep at night in case you need it right away. If you have children or pets, make sure the medication is safely stored.
Get back to a routine as soon as you are able. Keeping your mind busy and focused on your job and/or life’s responsibilities will help keep your spirits up. We think that having too much free time to “think” can make it more difficult.
C108 - Intimacy
At some point, when you are feeling better from your treatments, you and your partner or spouse may be ready for intimacy. Often, as we all know, even on a good day, we don’t always have feelings of desire at the same time. It is no different when you are dealing with cancer. It helps to have open lines of communication. Your partner may be concerned that voicing a wish to be intimate again will be a source of stress and upset for both of you. Tell your partner how you are feeling about intimacy and just as important, let him/her share their feelings with you. Invite them to ask questions.
Many partners need reassurance that the person with cancer still has an interest in being intimate, and vice versa. Remember, intimacy isn’t only about physical attraction but how you and your partner or spouse thinks about your relationship together.
If you are undergoing chemotherapy or radiation treatment, ask your doctor or nurse when it is safe for you to be sexually active. This requires that your blood chemistry be at values that insure you have enough red, white and platelet blood cells.
Always use a barrier when having sex. This most often is a condom but can also be a dental dam that covers the vaginal wall. Barriers also protect both genders from any source of infection and women from pregnancy.
Consider couple’s counseling to help you both learn to cope.
Consider different types of sexual expression other than those that require penetration. Sensual massage focusing on the whole body as well as the genitals is a safe alternative.
If you are a women who has trouble lubricating, ask your oncologist or gynecologist to suggest different lubricants and moisturizers that do not contain any of the forms of estrogen.
If you are a man having trouble getting an erection, ask your oncologist or urologist to prescribe an appropriate erectile dysfunction medication.
C109 - Life after treatments
In many ways it is sometimes harder for people with cancer to get over the treatment than it is to get through the treatment. Patients are so busy going to appointments, researching, learning, doing what it takes to fight the cancer, that it is easy to avoid the dealing with the emotional side of the diagnosis. Once treatments are complete, there are no more daily or weekly trips to the cancer center where doctors and nurses fuss over you. Friends and family stop fussing over you too. You might find that you suddenly have more time on our hands and when you have more time, you have more time to think and, of course, to worry. You will probably feel some of the side effects of chemotherapy and/or radiation weeks after your treatments were over which might make you a little depressed. Depression is one of those things that can sneak up on you. But if you know there is a chance that it might happen, it makes it easier to manage. Just know it all gets better with time, and you will feel and look like your old self again. Your energy will come back and your hair will grow back. It helps to keep your support team around so make sure to let them know how you feel – emotionally and physically.
There are also wonderful oncology social workers at cancer centers and local advocacy organizations to share your feelings. Many offer group support and one-on-one counseling. Take advantage of them!
If you live outside of a city or just don’t feel like leaving your home, there are many wonderful and safe online chat-rooms where you can find patients or caregivers with similar concerns and fears. Go to the recommended advocacy group’s Web site for your tumor-type and you will find the help you need. If your tumor-type is not listed, go to Cancer.net and you will find more support there. Knowing you are not alone and that others feel the same way really helps!Be good to yourself and allow yourself time to heal. Rest, eat well and exercise. Take yourself on a much-needed vacation or a stay-at-home vacation. You deserve it!
Give a charity your time or offer them support by sharing your personal cancer experience with others who might find your story inspiring. It feels great to help others!
Since the minute you found out you have cancer, your entire life has most likely been about fighting your disease. It’s time to move on and get involved with new activities or reunite with friends you may not have felt up to seeing when you were having your treatments. Stay positive and enjoy each day as it comes.
Many patients feel that their cancer taught them to appreciate what they have, and gave them the courage to clear the negative elements out of their lives – including bad relationships, bad jobs and clutter in our homes. Cancer can give people the strength to take on new challenges. Once you have battled cancer, you can take on anything. So do something positive for yourself, for your loved ones and perhaps for a charity.
If you ever thought about getting a pet, maybe now is the time to do it. There is nothing more healing than the love of a pet. If you do decide to do this, think about adopting an older pet from the ASPCA or some other animal shelter. You’ll be giving a pet a loving home, and an older pet won’t wear you out the way a puppy or kitten might. Make sure you are feeling physically able to.
C110 - Advice for the metastatic - What to do if your cancer returns
What to do if your cancer returns or you are diagnosed with advanced cancer for the first time.
There are really two groups of people with metastatic cancer: those who are learning for the first time that they have cancer, and those who were diagnosed earlier and have since experienced a recurrence or metastasis.
But both groups have one thing in common: the cancer is considered stage four. That means we have different needs and different concerns than women and men who have discovered their cancer early.
Many of us who are facing cancer for a second time or more feel that we already know what to expect. Please read this section because there is a chance that you’ll find a tip you hadn’t thought of before – one that will make your life easier to manage while fighting cancer.
What do you call it?
There is no one term that we all use to describe cancer that has spread to other parts of our body. Some of us call the cancer advanced. Others prefer to describe it as metastatic.
This difference in terminology can be confusing. For example what’s the difference between stage 4 cancer and metastatic cancer? The answer is there is no difference. Cancer that has spread to other organs is stage 4. It’s also considered advanced. Some healthcare professionals describe stage 3 as advanced as well.
As a cancer patient, it’s important for you as well as your caregivers to understand what the terms you use to describe you cancer. That way you will be able to make more informed choices about treatments.
Stage 4 cancer: Cancer that has spread to other organs of the body, most often the bones, lungs, liver, or brain.
Advanced cancer: Cancer that has spread to other places in the body and usually cannot be cured.
Metastatic cancer: Cancer that has spread from the place where it started to other parts of the body.
Recurrent cancer: Cancer that comes back after treatment. It can come back in the same place as the original cancer or in a different part of the body.
As you can see, we may be using different terms, but we’re really talking about the same thing.
Living “with” metastatic cancer
How I, Monica Knoll, live with metastatic cancer Living “with” cancer is easier said than done. But many of us do live for years with advanced cancer, despite the fact that we wake up every day with uncertainty in our lives. Everyone dies. But for those of us living with cancer, the idea of our own mortality takes on a very real presence. It would be easy to fall into depression or self-pity. But I’ve made up my mind that I don’t want to waste one day feeling depressed or sorry for myself. I may not have any control over how much time I have left, but I can control how I plan to live it. For some of us, our cancer is considered a chronic disease because, with treatments, we can keep our cancer at bay and have a good quality of life. I hope the following advice helps you live life to the fullest despite your cancer. I know it helps me every day.
Make every day count. If I’m feeling good, I try to be present in the moment and not take it for granted. Enjoy what you are doing and the people with whom you are spending your time. Enjoy the feeling of feeling good.
Be good to yourself: Form reasonable expectations of what you can and can’t do.
Improve your appearance: You might just feel better if you do. Get out of those pajamas; wash your face; put on a little lipstick. Get a manicure or a pedicure and a foot rub.
Move: Take a walk, a yoga class, or if you are up to it, do something more rigorous. Your energy and mood will definitely improve. Make sure to talk to your doctor first about exercising.
Eat well! Eat good nutritional foods that will boost your immune system and give you energy. But don’t deny yourself a little treat, too.
Music: Listen to music that soothes you when you need to relax. Or pick upbeat, happy music when you need to be cheered up or need a little energy boost. I have a few songs that make me feel great when I hear them. Try the theme song to the movie “Rocky” when you are feeling tired or sad.
Count your blessings: I have lived a good life so far and I still do. I have always had food on the table, a roof over my head, a good education, a family who loves me, great friends, and wonderful travels. I then think about people who are living in dire poverty. Millions of people in the world have experienced war, and live without food, water, or adequate shelter. Millions have never known what a good day is. While we feel terrible with chemo, there are millions who are starving. And if I die tomorrow, I know that I have had a great life. If you can, try to take a little time to see what you have and what you have experienced. For me, this gives me peace of mind.-
C111 - The do's and don'ts for family, caregivers and friends
Do let your loved one know from time to time that you are there to help.
Don’t call five times a day to remind him/her!
Do give your loved one a positive, upbeat face whenever you see him/her.
Don’t come across as terrified. It will only bring about anxiety for the cancer patient.
Do let your loved one know you are concerned for his/her well-being.
Don’t call three times a day to ask, “How are you feeling now?”
Do give your loved one “alone time” if he/she asks for it.
Don’t insist on being with her every waking minute, or your friendship may not be able to take it. (Everyone gets a little grumpy when they are not feeling well. Don’t take it personally.)
Do take advantage of the many support groups for family and friends.
Don’t lean on your loved one alone to help you get through your difficult time with his/her illness.
Do bring gifts such as magazines, CDs, books of inspiration, puzzle books, comfort food, delicious treats, fragrance-free candles and lotions, teas, movies, a soft zip-front track suit, lounge-wear, pajamas, a robe, slippers, and new bedding.
Don’t bring (at least during chemotherapy) anything that has a fragrance or scented can irritate the skin and bring on nausea.
C112 - Planning for your future
Even healthy people need to plan for their future. Look at this task as nothing more than organizing your closet. You don’t want to do it, but it needs to get done. And once it’s organized, you will be relieved you have completed this task.
A good suggestion is to take care of the following task list when you are feeling good and healthy. The following tasks might be difficult to read. It wasn’t easy for me to write. But I know these tasks are necessary. It’s a fact of life that we will all die someday. I can’t help but look at the silver lining in everything I do that is unpleasant, sad or difficult. So here is my two cents… Some people never get the chance for closure. We do. The checklist below is an opportunity to make important decisions so our loved ones don’t have to guess or make decisions for us.
Make a healthcare proxy. A living will allows you to convey your wishes on paper regarding treatment when you cannot personally communicate those wishes. A medical power of attorney allows you to designate someone to make healthcare decisions for you when you are unable to do so. Ask your doctor or the patient advocate at the cancer center to help you learn more about how to make these arrangements.
Make an appointment with an attorney to create or update your will.
Give your caregiver or family member a power of attorney to make financial decisions if you are unable to make them.
Make sure you know what is covered under your health insurance policy, including palliative or hospice care.
Talk to your employer about your current health status and inquire about disability coverage.
Update your life insurance policy and make sure it is signed by a lawyer and/or a witness.
Make sure your doctors and loved ones have written directions that describe your wishes, including organ donation.
Write down all your banking and life insurance policy information and the location of your safe deposit box and keys. Also write down your passwords to your cell phone, email, and online accounts.