I belong to a facebook group of people who are living with kidney cancer. Every week we welcome new members. Some things many of them say are, ” I think I am still in shock.” “I don’t think it has sunk in yet.” “What should I ask my doctor?” “What I can expect going forward?” I am part of the ambassador team in the group. I help answer questions and offer support and reassurance. With this in mind, I decided to write a list 10 things to do after a cancer diagnosis. If you do them you can feel confident in your care and feel a little more in control.
1. Turn to loved ones, build your cancer support system.
Your family is the most important support system you have. You need each other throughout this journey. Be patient with each other as you figure out how to deal.
Find friends who you feel comfortable confiding in. Friends who will come over at any time day or night if you call. You need friends willing to give you rides or come with you to doctor appointments. Others may be great at bringing in meals or help with shopping. Be patient with friends who may not know what to say or do. Don’t be afraid to ask for specific things you need. Most people want to help and just need to know what it is they can do.
Also, you may be surprised that friends who you were once close to distance themselves, and others who you did not have as close a connection to, step up and are there with the help you need. Be prepared for well meaning people to offer “advice.” For example, some may be sure that essential oil, or alternative treatments will cure your cancer. They may even want to sell you these treatments! Others may express disapproval at the treatment you have chosen with your doctor. It is important for you tell these well meaning friends that while you appreciate their concern, your treatment decisions are carefully made with your medical team and you need them to respect your choices. Frankly, it is none of their business. You may need to cut yourself off from people who make you feel worse after interacting with them. You need positive energy.
2. Get information from cancer specialists
As soon as possible, make an appointment with a doctor who specializes in your cancer. Your primary care physician or the physician who diagnosed your cancer should refer you to a specialist. You will want to get more information about your cancer and the treatment options available. When you are first diagnosed, it can be so overwhelming and you may not know yet what questions to ask. A good place to start is this link to the American Cancer Society. https://www.cancer.org/treatment/finding-and-paying-for-treatment/choosing-your-treatment-team/questions-to-ask-your-doctor.html
This page has a list of general questions for all cancer patients https://www.cancer.org/content/dam/cancer-org/cancer-control/en/worksheets/questions-to-ask-about-my-cancer.pdf
as well as a page allowing you to search for questions to ask the doctor specific to your cancer type https://www.cancer.org/cancer/all-cancer-types.html. Ask the doctor what they recommend for you.
Get a second opinion
Do not hesitate to get a second opinion. You are in the gathering information phase of your cancer journey. Never let a doctor dissuade you from getting more information from another specialist. At this point you do not yet know what you do not know. Getting a second opinion allows you to have a better understanding of treatment options and recommendations. You are then able to choose the specialist and medical team you feel most comfortable with. Building your medical team is the most important thing you will do! In fact, why is it we spend more time researching different brands of appliances that we will purchase than we do researching healthcare providers? In the case of cancer, you are literally fighting for your life.
Specialist vs. generalist
You want a specialist who is up to date on the latest treatments and protocols. Keep in mind a general oncologist may not be familiar with the latest research or treatment techniques for your specific cancer. For example, I was referred to an oncologist the day after my cancer was found. The oncologist treated many different types of cancer. Because Renal Cell Carcinoma (RCC) or kidney cancer is a rarer cancer, he told me that he “did not know of any clinical trials for me”. He also said he would talk with me further at another appointment about the treatment I should start. It was obvious to me that he planned to study up on it himself. I left the appointment confused and with little hope.
Fortunately, I got another opinion at the University of Texas Southwestern Medical Center in Dallas, Texas (UTSW). The oncologist I met with at UTSW was an RCC specialist and knew of trials that could benefit me! He gave me information about 3 different treatments he recommended with the pros and cons of each. I left that appointment with hope, and a feeling that I was part of the team and that my opinion about different treatments mattered.
A research medical center
If you can go to a research medical center like UTSW you will be more likely to find a specialist who knows the latest best practices for your cancer. A teaching medical center will also likely know of research trials that could benefit you. Trials of treatments not yet approved usually are done because the researchers have found that they are beneficial and need to do the research in order to get approval. This allows you to get the latest medical advances. If you enter a trial, the risks will be explained to you.
3. Take one day at a time
When I was diagnosed, I was already stage IV. It was all so overwhelming. The first year I had surgery after surgery, radiation treatments, immunotherapy and countless scans and appointments. I felt like I was in a state of constant shock and trauma. It seemed that it was all just too much and I found myself lost in anxiety and dispair. In the midst of it a trusted friend advised me to just worry about the next thing. Everything was too much, but I could go to the next appointment, start the next treatment, etc. One day at a time was doable. Now almost 2 years later, I am stable, and I am able to find joy and happiness as I journey on with cancer. For more details of how I made this transformation, read more on my choose joy page here https://juliesnotdyingtoday.com/choose-joy-journal/ .
4. Join a cancer support group
Even with the best support from family and friends, it can seem like no one really understands what you are going through. There is something very powerful about interacting with people going through the same experience you are. It helps you know you are not alone. Your support group will understand your feelings and will not tire of hearing them.
Facebook cancer support groups
Facebook is a great place to find others battling the same type of cancer you are. It is possible to find a group even if you have a rare cancer. Just open facebook and type in the type of cancer you have in the search bar. I joined a kidney cancer support group, https://www.facebook.com/groups/299396647519681/. From the group I learned about KCCURE, a kidney cancer non profit group that advocates for patients and raises hundreds of thousands of dollars for kidney cancer research https://kccure.org/.
Facegroup groups will allow you to ask others about their experience with different treatments. You will learn from the collective experience what questions to ask your doctors, how to deal with side effects, and even clinical trials that you may ask your doctor about. Just remember that the people in your facebook group are not doctors and that everyone is different. You may not experience the same side effects as another might. Also be sure the group you join is a private group. That way only group members will read your posts and comments in the group. This makes the space a safe space to share feelings without worrying about the feelings of friends and family.
Community cancer support groups
Searching for groups in your community is also a great idea. Cancer Support Communities is a great place to look into https://www.cancersupportcommunity.org/. There is a place on this link to search for a group in your community. I joined a metastatic cancer group in my city. While online support is fantastic, talking with people in person is valuable. I treasure the friends I have met there and I can share things with this group that I am unable to share with other family and friends.
5. See a counselor
A cancer diagnosis is a traumatic experience, and dealing with treatments and scans often creates post traumatic shock like experiences. There is even a special name for the anxiety a cancer patient experiences before, during and after MRIs, CT scans, and other diagnostic tests. Scanxiety is what the patient feels. It is like PTSD because the patient is reminded of the shock and trauma of the diagnosis and what they are dealing with. Even if a patient has had surgery to remove the tumor and has been told there is “no evidence of disease”, they may experience scanxiety with follow-up scans as they worry the cancer will come back.
It is normal to have feelings of grief and sadness and it can come in waves like an ocean. The trouble comes when the feelings or waves of despair carry a person so far out in the ocean they are no longer able to swim back. A counsellor can be a very important part of your medical team. He or she can help you deal with your emotions and give you tools to get through the hardest times. They can help you prepare for the future even as your cancer progresses. Ask your oncologist for a referral to a counsellor who specializes in oncology. Some counsellors at cancer centers provide counselling services at no extra charge for patients at the center. If not check with your insurance plan for a counsellor in your network.
6. Keep a journal
Keep a journal of all doctor appointments and treatments. At a minimum write them down in a calendar. Keeping track of daily symptoms and feelings is especially helpful in order to be able to tell your doctor when you started to experience side effects.
It may seem like you will never forget dates of surgeries or treatments. But as time goes on, your memory will get fuzzy. Writing them down on a calendar will help you look them up later. Keeping track of feelings each day can help your counselor find patterns and help you prepare and avoid triggering situations. In addition, your experience can help others. if you have kept a journal you will be able to refer to it in order to share your experience with others. You may even decide to write a memoir or life story. Your journals will be a valuable resource.
I have also learned to keep a choose joy journal. It has helped me find joy even in the midst of pain and unpleasant side effects. If you would like to read more about my choose joy journal read my choose joy journal page https://juliesnotdyingtoday.com/choose-joy-journal/. You can find basic calendar organizers and calendars at office supply stores and even some drug stores. For a choose joy journal you can just purchase a blank notebook. I found this gratitude journal from a fellow blogger that you could purchase here https://shop.carrieelle.com/products/gratitude-journal.
7. Complete important documents
Advanced directives
Now is the time to complete important medical documents including advanced directives. The two most common advanced directives are a living will and a medical power of attorney. A living will allows you to make known the type of medical treatments you would or would not like if you are unable to communicate this to your healthcare team. A medical power of attorney allows you to designate a person who can make medical decisions for you if you are unable to do so. For more information about advanced directives look here https://www.cancer.org/treatment/finding-and-paying-for-treatment/understanding-financial-and-legal-matters/advance-directives/types-of-advance-health-care-directives.html. Your doctor should be able to refer you to a caseworker that can help you access these forms. When they are filled out make sure a copy is in your patient medical records at the medical center.
A Will
It is also important to have a will. An attorney who specializes in writing wills can help you be sure your will explains how you want your assets allocated. They understand state laws and have experience dealing with situations that you will want to avoid. If you do not want to use an attorney, you may be able to find some templates at an office supply store or online. At the very least, write down with a pen on paper how you want your assets divided. A handwritten will is legal if you sign it. Make copies of the will and put the original in a safe deposit box at the bank. Give a copy to a family member or friend you trust completely.
Include with the documents a list of all of your bank account information, retirement accounts, passwords to online databases and social media. You may even have preferences for the type of funeral you want. Write it all down. Put all of your important documents in a safe place and tell your family and or trusted family where that place is. Update the information periodically.
8. A healthy diet helps your body fight cancer
If you are not eating a healthy diet, make some changes. Start with eliminating one type of unhealthy thing like soda for example. Strive to eat lots of fruits and vegetables. If possible purchase organic. You will find many opinions on what cancer patients should and shouldn’t eat. Everyone is different and there is no study that proves “sugar feeds cancer” or “marijuana cures cancer.” For every testimonial that says declining medical treatments and choosing alternative treatments or special diets cured a person’s cancer, there are many more examples that your may never hear of of people who made a similar choice and died. If you choose to add alternative treatments, or restrictive diets, be sure to tell your oncologist. You may not be aware of some seeminly safe herbs, oils or foods that will interfere with the cancer treatment you are receiving. Eliminating as much processed food as possible is a good idea. You may need to get in the habit of planning meals that you or your family will cook at home. Try to get support from your family. It is easier to make changes in your diet if you are not doing it alone.
I have chosen to eat a kidney friendly diet that is low in animal protein. Initially after I was diagnosed I went on a vegan diet. I felt very good on this diet, but my intestines could not tolerate all of the beans I was required to eat. Therefore, I switched to a mediterranean diet that includes many fruits and vegetables, small servings of fish or chicken, and limits processed food. To read more about my eating plan, read my what I eat page https://juliesnotdyingtoday.com/what-i-eat/ .
9. Keep up with personal care
Do the best you can to look the best you can. Even if you plan to stay in pajamas one day, have a few pair of nice looking loungewear free of holes or stains. Yoga pants and t shirts can look nice around the house and are fairly inexpensive. Shower and brush teeth and hair. Get regular haircuts. Wear nice clothing when going out even (or especially) when you are going to see the doctor. I have found that if I look good I feel good. Looking my best helps lift my spirit when I am not feeling well.
10. Strengthen your faith
Faith in God or a higher power can bring you peace and strength when you need it. If you have a specific faith, strengthen it. Pray about what you can do to strengthen your faith. Express your feelings to God and ask for His help. If you have a church you attend, attend regularly. A faith family can offer valuable support. Knowing others are praying for you helps you know you are not alone. I have personally felt the strength and healing power of God. He hears and answers prayers and He keeps His promises.
Thank you for visiting my blog. If you have been diagnosed with cancer, I am sorry you are going through this. Know you are not alone and that it is possible to live a life of joy with cancer.
LaRene Call says
Thanks Julie…..fantastic info I am going to work harder to follow your advice….love you so much.
Chari says
Great information for everyone!!