Giving Advice to those Newly Diagnosed

If you could give someone newly diagnosed advice about ways in which to cope with their cancer experience, what would it be?

 Our Cancer Experience Registry participants said:

  • Learn everything you can about your cancer.  Work with your medical team; however, keep in mind that you are the captain of this team. The final decision belongs to you; however, you should listen to their input.  Live each day to the fullest; be all you can be; be the best that you can be; do exactly but no more than you feel is best for you. No one wants to be around you if all you do is whine about the pain, unfairness, etc., about your cancer. Look for the happiness in your life. Smile and laugh more.  Be an inspiration to others. You may never know the person who down the road may walk in your steps and is able to face each day because of how you handled your cancer continues to inspire her/him. 
  • Your life is not in your hands but in the Hands of God, He will bring you through. Cancer cannot and will not take your life one minute before God is ready for you, so just trust in Him.
  • First of all, don't panic!  You may have cancer but that doesn't mean it has you -- take control. Knowledge is power; learn as much as you can about your disease so you can participate fully in treatment decisions.
  • Take it one day at a time. Get involved with a cancer support group from the beginning; they are a great source of treatment experiences, side effects, solutions, and support. In all you read remember each person with cancer is an individual and will have their own personal experience, reactions, problems, etc. Similarities show up, but so do odd "only you" things. Know you are not alone! 
  • Have a very positive attitude and keep your faith in the Lord.....
  • Don't dwell on statistics that limit your life or let anyone tell you how long you will live. Connect with others who are on the same journey.  Do life one day at a time...  loving God and loving other people.  Don't fear the end; for God will surely preserve our lives until we have completed His will and purpose, then we can be content.
  • Keep copies of everything.  You will often wonder about something in the middle of the night and it helps to have test results, notes from doctors, etc. Also, SMILE, PRAY, AND ENJOY THE JOURNEY!
  • Listen to you...every cancer experience is personal.
  • Stay upbeat and positive, and look into complementary and integrative medicine support methods such as diet, acupuncture, meditation, exercise such as easy yoga or tai chi, massages, and anything else that looks interesting to support your traditional treatment. It will definitely help you feel better and get more out of your treatment.
  • It's fine to emotionally react before you get down to the business of choosing your options. You have some time to ask questions - get a second opinion or whatever it takes so you feel solid about your treatment plan.
  • I would definitely tell them to seek out a support group earlier than I did. I waited until after my treatment to get out and find support groups. It would have helped me a whole lot to have that during my treatments.  Also, make sure you find out everything that is available to you - from ACS, CSC, Susan G Komen, etc. There are so many workshops, support groups, and things for body and mind healing that is available to help us all through such a rough time.
  • Live your life mentally like you did before the diagnoses was told to you. Yes, it is in my mind everyday but at 68 and with stage 4 cancer, I try to live every day and thank God for something every day. I hope for new drugs every day that could help someone with cancer.  
  • Don't isolate yourself...Ask questions, educate yourself and seek mental support where ever you can.  I found I was much better mentally, initially after my surgery, but with the addition of various medications, my mental and physical states have become more challenging.  Support groups are an enormous source for information, in which doctors don’t always think to share with you. Plus for me personally support groups help to keep me grounded.
  • Inform yourself and accept help from others in the process. Keep up with some exercises even a little bit of walking or stretching helps.
  • After one has been diagnosed with cancer they have to work through it emotionally, and when they are willing to accept the fact that this is one area of their lives that is not, and never will be, within their control, the burden seems much lighter.  "What if" and "Why me" only serve to punish the cancer patient because there is no answer to that question. What they can do is try to do everything within their power to boost the odds through good nutrition, exercise, staying mentally upbeat, keeping up with research, etc., but they also have to accept the fact that no one is given the opportunity to choose their cause of death. Ultimately, that is God's decision, and as we all know He doesn't always agree with ours.  After I was diagnosed I was able to accept the fact that if he wanted me to die from cancer, the one thing I could do was to accept His decision with dignity.
  • Slow down and take a deep breathe, Think everything through, before making decisions.  This is going to take a while, so don't rush through everything in the first couple of days/weeks. Make sure you really trust your Doctor. If not, find a new one.  There are many wonderful Doctors out there that truly care about their patients as people and not just patients. Realize that this isn't taking over your life; it is just one part of it.
  • Get a bible and read it. Maintain a close relationship with God. If this advice is strange to you then find out more about it by contacting an individual you might know who has a deep relationship with God. If you don't know of such a person. Contact a church who will lead you into such a relationship by helping you to place your trust in God.  I went through 5 surgeries which include two mastectomies, chemo & radiation and a bone marrow transplant. My faith in God got me through all of this. I am a better person today because of what I went through. God works!
  • After you're all done crying, stamping your feet and yelling at God about how this is so Not Fair, exhale and then, "Let go and Let God".  For whatever reason, this is part of your life’s journey.  Roll with the punches...and deal with one thing at a time. And allow yourself to be cared for by others. This was the most humbling part of my journey.  I'm typically the one who takes care of others. With the support of your friends and all the wonderful people in your life, you will make it through.
  • Stay positive about your treatment, don't let the negative thoughts invade your mind and bring you down. When I was first diagnosed with stage III breast cancer, the first thing I did was tell everybody I knew to get their mammograms. I used my experience to encourage them to do everything they can to prevent hearing those words that nobody wants to hear.... "It’s cancer". From there I got involved with ‘Relay for Life’ and met the most wonderful people, letting me know I am not alone on my journey.  I'm not living with cancer; I'm living because of it!
  • You can do positive, do not let cancer or anything that surrounds it overwhelm you. Take it one day at a time with a positive attitude and fortitude. This too will pass. If you let it drown you, bring you down, and depress you, it will take you twice as long and twice the energy to climb out of that hole.....remember you are not the only one going through this, and no matter how bad it is, someone probably has it worse. Surround yourself with positive people; if what you are going through is going to be a life changing experience, which it will be, make it learning and a positive can do this!!!
  • First, Be true To yourself - trust your intuition.  That inner voice knows what is best for you, not someone else.  Do not go against your principles. Second, ADVOCATE for yourself.  Do not accept the first thing that comes your way. Stand up for your convictions.  Be Yourself.  Third, ASK for help. Do not be afraid to be "needy".  Utilize every available resource.
  • LEARN ALL YOU CAN about your type of cancer. Do research in the library (especially the library at such places as M D Anderson Cancer Center in Orlando, FL) so that you can evaluate the truthfulness of the voluminous stuff that is on the internet.  Not all internet information is true. Use a SUPPORT GROUP and ask lots of questions!  GET A SECOND OPINION if you have ANY doubts about what your physician(s) tell you. Some health care facilities are better for certain types of cancer & their preferred treatment protocols; each seems to have specialties or unique types of experience.  Go to the one with the most experience with your type of cancer!  The facility nearest to your home is not necessarily the best place for YOU. Some large research Cancer Centers have an ACS Hope Lodge where you can stay for free during your treatment. See a social worker for a referral! BE YOUR OWN ADVOCATE! Take notes and keep a journal, have a friend go with you to provide a 2nd pair of ears and take additional notes that you may have missed! ALWAYS HAVE HOPE because a cure is just around the corner!
  • One foot in front of the other.  It's a journey.
  • Cancer is a 6 letter word and you are stronger, smarter, loving and sillier than any word. Listen to your body; take it one day at a time with baby steps and you will be surprised at the person you are becoming during this life changing diagnosis. Don't let the WORD cancer win!
  • My advice is to get in touch with cancer survivors and talk, talk, talk about your fears.
  • I truly believe in the mind/body connection. A positive attitude may not always work, but it sure makes your cancer journey an easier one. I was given five years to live. My answer and my "mantra" from that day forth was, "I'm too busy to die. It's not in my Day-Timer and no other woman will wear my jewelry." On May 22, 2013, I celebrated 27 years of survival. It worked for me. Bobbi de Cordova-Hanks Jacksonville, Florida.
  • Don't let emotion take over so that you panic. This is just one more disease; most of the time it is vastly treatable. Take someone with you to every appointment, someone who can be dispassionate and take notes for you. Then approach your treatment one step at a time, listening to your doctors. Follow their advice, but ask every question you can think of. Continue to live a normal life, even though you may have to push yourself sometimes. When cancer is treatable, as it usually is, it's a disease that's much better to have than diabetes, MS, Lou Gehrig's disease or Alzheimer's. And if, unfortunately, it's not treatable, remaining rational and continuing to live as normally as possible makes what is left of one's time more rewarding than falling into self-pity and depression.
  • Do include spiritual care among the kinds of support you seek. Sally 
  • I would recommend that a newly diagnosed person should allow friends and loved ones to lend support and encouragement.  Leaning on others who care about you gives you the strength to face this and to make difficult decisions. I probably would not have decided to have chemotherapy if a good friend had not sat with me and literally make a chart of the pros and cons. Seven years later I am cancer free an thankful that my friend was there for me.
  • Know that you are not alone.  One in eight women in the USA will experience breast cancer.  Many other people experience cancer originating in other organs, etc.  Treatments are far easier to handle now than they were 20 years ago. In another 20 years, they will be even less invasive.  The support groups that are available to you are amazing - from medical practitioners (especially in cancer treatment centers) to fellow survivors.  The internet contains so much good information from diet to exercise to coping mechanisms.  While I wouldn't choose to have cancer, it has been a beneficial learning experience for me.
  • Never rush any decision.  You have time to consider all of your options, time to seek second and even third opinions.  You need to be comfortable with, and certain about every choice you make; is the right one for you.
  • Start a journal.  This is one way to really learn a lot about you. A journal is good for reflecting! Barbara Beckwith Breast (1994) and uterine cancer (2006) survivor
  • Take time for yourself! Rest, nap and do not try to do everything you have been doing before. If you can cut back on work, do that. Accept help from friends with meals, errands and your children.
  • I would suggest that they speak to a counselor!  This is one area that is wholeheartedly ignored in the medical field.  I wish I had done this on my first diagnosis.  With so much information via the internet a newly diagnosed man or woman could scare themselves into PTSD.  When I had my 2nd diagnosis I really needed someone professional to speak with.  I decided to go with a bilateral mastectomy.  I knew nothing about it.......just that they would be gone and no more mammograms!!!!!  Oh brother all the things I never knew but wish I did.
  • I would say find a program which guides you through deep breathing, journaling; trustworthy friends, who listen often without giving you answers, remember to celebrate something EVERY day.  You are unique and have your own spiritual journey. I found humor helpful that I created even as I was stuck in a wheelchair in a nursing home and couldn't go to the bathroom on my own. 
  • Don't spend too much time on the Internet. Remember that, a lot of the time, the people talking about their experiences may be the "extreme" cases. The folks whose experiences aren't/weren't that bad may not post or blog. They may think that nobody wants to read about how it wasn't that bad, they didn't really have any heinous side effects, and they were able to work the whole time. When your healthcare providers tell you, "Everybody's different," they're not blowing you off; they’re telling you the absolute truth.
  • This may sound strange, but laughter was most helpful to me. I was fortunate to have a great support team of family and friends, but there were still times I felt alone in the battle. I had a friend who sent me cartoons and jokes via email every day - I laughed! I found reruns of America' Funniest Videos - and laughed. Looked at my bald head (that I chose to have shaved - at least that was in my control) - laughed again.  I studied everyone and every aspect of nature with new eyes and greater appreciation. It has been 7 years and, even with a few bumps along the way, I'm still here, enjoying life and laughing!
  • BE POSITIVE and follow your treatment. You are strong; remember. As long as there is life there is HOPE. Network with others like you.
  • Respect your diagnosis and try to be positive.  Have someone you can talk to regarding fears, decisions and outcomes.  Find all the info you can on the WEB so you can be informed when you meet with all of the doctors. Write questions down before appointments.
  • I would encourage them to get all the information they can find on their particular cancer, along with all the options for treatment. In this way, they will be able to play an active role in making treatment decisions. I would also advise them not to allow cancer to define them as a person. While the treatment may be time- consuming and, at times, difficult, there is life after a cancer diagnosis. Try not to allow the diagnosis to emotionally control your life.
  • Stay positive.  Be patient with yourself as you go through the early stages. But also be patient with others who really do not know how to help or what to say.   When people do good things for you, appreciate them.  But also give people the benefit of the doubt.  For now, this new diagnosis is the center of YOUR world.  It is NOT the center of THEIR world and every one of us has burdens to bear and challenges.   Appreciate the family and friends who are there for you and be there for them.  I really totally disagree with folks who say "it is all about YOU".  It is not all about YOU; it never will be.  So, appreciate the folks who are there for you.  Realize that YOUR positive attitude makes a difference for you. Read Anticancer, A Way of Life by Dr. David Servan Schreiber to learn all you can about living a healthy lifestyle that will help you fight cancer. Get a second opinion at any point you need it during diagnosis and treatment.  Confirming the pathology is critical so I believe a second review of the pathology is very important.  All treatment stems from that diagnosis and it must be accurate. Get copies of all reports. Good luck in your fight against this disease!
  • Join a support group. Be proactive and keep a positive attitude and talk about it to your spouse, children, friends, and co-workers. Talk to anyone you can talk to, and get it out of your system. Talking with a Therapist will be the best option.
  • Always keep your sense of humor; you'll need it, and your medical staff and caregivers will greatly appreciate it. A smile, a laugh, or a small quip will lighten the day for everyone, and you will feel better both mentally and physically for it.
  • Research your medical "team" carefully and trust that they will guide you along this journey.  If you have confidence in their experience and abilities, it takes some of the worry off of your shoulders.  But remember, that you are your best advocate so take part in all of the decision making regarding your care and don't forget to ask friends for help when you need it.
  • Don't go it alone. Be a good advocate. Live your life.
  • Exercise! Exercise!  Whether it's walking or Curves or any other program, it has really helped me mentally as well as helping my body withstand the assault of a radical hysterectomy. Any small bit is better than nothing! Ask for the reasons for any tests you are asked to endure. Ask how the results will affect your treatment. Since many tests are uncomfortable, unpleasant and sometimes painful.  First, breathe.  Second, be solution-oriented; avoid the saying "why me" - it's a waste of energy.  Three: Discount at least 50% of what other people tell you about their experiences or knowledge.  You and the disease as it affects you are completely individualized.  Four: spend less time on Google and other sites.  After that, take someone with you to your doctor and ask every question that's in your mind since the diagnosis (Prepare the list beforehand). Don't be put off or allow yourself to be dismissed.  If inclined, go for a second opinion on treatment options.  Assemble a support system - for practical and emotional support.  Schedule concerts, plays, sporting events, whatever gives you pleasure and be sure to put those into your schedule along with treatment. You are more than the disease.  If you have an "end date” when treatment should be finished... schedule something really nice for yourself, that doesn't require a lot of physical energy. Remember, treatment WILL be over at some point.  Your body during treatment is not your body pre-treatment.  Don't judge whether or not you're doing well or having a good day by comparing it to how you used to feel. You will eventually feel better; but for now, better is whatever you can get.  Don't pretend everything's fine, but don't let other people suck you into their drama - the "I feel so bad for you" - be blunt - ask them not to say that because it's not helpful. Tell people what they can do to make it better.  Feel free to have "disease free" conversations. If it suits your personality (it did mine) schedule in your own head "disease focus" times. If you're doing regular life, or something fun, and the disease pops into your head, push it back down until the scheduled time. In most cases, you have some degree of time after diagnosis before you have to start treatment again.  Give yourself time to partially, at least, absorb the shock, research options (but limit yourself or you'll always find one more "magical" answer), and do something you like to do. Add rest and good nutrition and then start making decisions.  If you practice your faith, keep practicing.  Have others pray for and with you.  Let your faith community in, but set boundaries for them - and everyone else.  Don't feel you have to make other people feel better.  Being mean isn't ok, but being selfish is, if that means putting your health before others' non-emergency needs; it is a disease; it is not YOU.
  • Always have a support person with you when going to appointments, test, procedures, etc., and write down questions and answers. You won't remember half of what is discussed, and you will need a trusted advocate who can take notes on your behalf.
  • Avoid the idea of being a "victim."  Cancer does not define you; it’s simply an experience.  If you can go through it with an open heart and open mind, you'll be amazed at how much you're able to learn about yourself, and about life.
  • Do not lose your sense of humor. Despite what you may think or feel, if you can find something funny about the experiences you are having, it will be much easier to move forward. It doesn't matter if it's dealing with chemo, radiation or post-surgery. Laughter is great medicine -- both mentally and physically as I have discovered over the years. I have met with breast cancer and laughter and having fun has kept me sane. I highly recommend it.
  • Keep a positive outlook and a sense of humor.
  • That the absolute worst time of the whole process is the beginning when you first hear you have cancer: (Then all the info and making decisions get to be overwhelming!! But as each doctor and procedure falls into place the road gets smoother and smoother until you realize you are now a survivor!!:)

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