Community Views: Advice for Those Newly Diagnosed with Blood Cancer (Part 2)

The news of a blood cancer diagnosis is overwhelming. In fact, the news may make it hard to know what to do next.

To learn more about how our community members living with blood cancer first handled their diagnosis, we turned to our Facebook page. We asked members to fill in the blank: “My advice to someone who was recently diagnosed is ___________.”

Nearly 100 community members shared their advice. We had such an overwhelming response that we divided your answers into stories focusing on clinical and emotional advice. Here, we explore what our members had to offer about doctors and medical treatments.

“Always get a second opinion.”

Too often, it can be easy to assume that a doctor – a person with power and lots of education – must be right. However, they may not be making the right choices for you. You may be in search of treatments that your doctor might not have much experience with. Plus, it never hurts to get a second opinion, especially with a diagnosis this sensitive.

“Always get a second opinion.” 

“Get a second opinion.”

“Do your research.”

Nobody understands their diagnosis straight away. Rather, researching online helps. So does reading articles and interacting with online communities like this one. This way, you know what you might expect and what sort of questions you want to ask during your next appointment.

Do remember that this information can be emotionally draining. If possible, schedule a supportive activity after your research. For example, do an hour of research then call a friend or family member.

“Educate yourself.”

“Do your research, but realize each case and person is unique.”

“Find out everything you can about your cancer and treatments available.”

“Ask as many questions as you could!”

Asking questions goes hand-in-hand with doing your own research. Research ahead of time allows you to ask better questions. Asking your doctor questions also gives you a better idea of what you have ahead of you. There is no such thing as a bad question. If your doctor is not inviting questions, make sure you both make the time during your next appointment – or choose a new doctor.

“Ask as many questions as you could!”

“Do not be afraid to ask questions.”

“Ask about clinical trials. It is saving me.”

“Always have someone with you at treatment and appointments.”

It can be crucial to have a second set of ears at your doctor’s appointment. A spouse, partner, friend, coworker, or family member can help by taking notes. This can help both of you recall details later. It is not uncommon for the person with the diagnosis to have emotions run high during the appointment. This makes it harder to hear and process all the information.

When it comes to treatment appointments, a friend or loved one at your side can offer support, comfort, and entertainment – and sometimes snacks! It is OK to ask for help. Do not be afraid to cast a wide net either. Your support may not show up from the person or people you expected.

“Always have someone with you at treatment and appointments.”

“I always carry someone with me to all appointments. I have questions on paper, and the person with me can write down the answer.”

“Be your own best advocate.”

Lastly, a few community members shared about the importance of being your own advocate. In other words, it is OK to speak up for yourself at a doctor’s appointment if you do not understand something or if you disagree with the course of action. You are the patient – but you are also the client. The doctor works for you, which is important to remember.

“Always let your voice be heard.”

“Be your own best advocate.”

Thank you to everyone who offered suggestions. We appreciate every bit of advice that was shared.