Community Views: Advice for Someone Newly Diagnosed

Blood-Cancer.com has a forum in which members of the community share their thoughts and ask advice from others living with blood cancer. It is a place to connect and feel less alone.

Recently, community members responded to the prompt “What's one piece of advice you would give to someone newly diagnosed with blood cancer?"

Here are some of the many responses we received.

Get the right doctor. And a second opinion

“I would encourage someone with blood cancer to find a specialist in the cancer that they have. Their local oncologist is great, but a specialist deals only with the particular blood cancer that the person has. The specialist helps to keep the medications on the right line of treatment.”

“Don’t skimp on your medical team. Have your treatment at a world-class cancer center and do everything you are told to do.”

“Find a doctor you trust. Listen to that doctor. Then get a second opinion.”

“Advocate for your health! Find a doctor who will really listen to your concerns and symptoms. I was brushed off for 2 years before being diagnosed when I knew something was terribly wrong.”

"Have a doctor and care team who are very familiar with treating your kind of blood cancer. Not all oncologists are hematologist oncologists. Ask how many patients they have treated with your type of blood cancer, and don't be afraid to ask for a second opinion; your doctor will not be offended (and if they are – find another doctor)."

Seek support from family, friends, and others with blood cancer

“Join a support group and educate yourself because knowledge is power.”

“Have a good support team and, most importantly, take one day at a time. . . I joined an online group, and I have learned things about my type of blood cancer that really help.”

“Be honest – with yourself, your family & friends, and your medical team.”

“Join organizations like the Lymphoma Research Foundation, Leukemia and Lymphoma Society, CLL Society, and Patient Power. Learn about your disease. Become an active member of your care team.”

“Find and join a support group, as they understand what you are going through. If you believe, prayer is very powerful!"

Ask questions

“Question everything! Ask the big and small questions; nothing is unimportant when you are dealing with your health and life. There are no 'stupid' questions in this situation.”

“Don't be afraid to ask as many questions as you need in order to understand what is happening to your body. There are no dumb questions. Research reliable sources to educate yourself.”

”If you have questions, ask your doctor . . . Write them down on a pad or note cards . . . You will never remember them when sitting in that examination room . . . and if your doctor is annoyed or thinks you have too many questions, FIND ANOTHER DOCTOR.”

“Do research. Ask questions. Record what you learn. Don't expect to remember everything because you won't. Keep a journal of doctor visits, your thoughts, and feelings. Extreme fatigue affects you mentally and physically. Sometimes you just need to sleep.”

Do your research from reputable sources

“Learn as much as you can about what different types of treatments are available for you. Above all, stay positive.”

“Research qualified websites for info, and remember, it's a marathon, not a sprint. Anti-anxiety medication and antidepressants help.”

“I tell people to look at when anything they might pull up online was added, printed, and researched. There has been so much even in the past decade for many cancers, especially with all the newer accepted testing and immunotherapy that is available. As my doctor said, he can't read everything when it comes out, as so much information is out there. Learn what you can, and then SHARE with your team. They may not have heard, read, or had time to get to the new information, therapies, trials, and more out there. You and your caregivers are your best advocates.”

“DO NOT Google every little thing about your diagnosis. It is terrifying, and the best thing to do is focus on getting better.”

“Stay off the internet! . . . Searching your diagnosis will make you crazy. . . EVERY PERSON is different, and every diagnosis is different.”

Live life!

“Life is one day at a time. Continue to live life to the fullest you can. Don't beat yourself up if there are things you just can't do today. Enjoy each day you have the best you can. It's the best you can do for today.”

“Don't compare your diagnosis with everyone else's. Yes, the underlying condition is the same, but all of us respond to different things; what works for you may not work for someone else. Live your life, don't dwell on the diagnosis, and take it day by day; you will have some good and bad, as we all do. Focus on the positives in your life, not the things that weigh you down.”

“Please remember that everybody’s experience is just that . . . theirs! There can be 20 people in one room with multiple myeloma, but each experience, although we share many similarities, is our own. Navigate your own path. Listen to your own body.”

Join the conversation in the forum here.

Read what our health leaders have to say on the subject

• Diagnosis Rulebook 101 by Yolanda Brunson-Sarrabo
• Navigating Diagnosis by Racheli Alkobey
• What to Expect After Diagnosis by Daniel Malito
• Things I Wish I Had Known on the Day of My Cancer Diagnosis by Carole McCue
• My Long and Winding Road to Diagnosis by Ramae Hamrin