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No Such Thing as the Good Cancer: Insights from Blood Cancer In America 2019

Tired of hearing that blood cancers are the “good cancer?” You’re not alone. While strides have been made in the treatment of some blood cancers, life with any blood cancer is far from easy. We conducted a large survey to better understand the diagnosis journey, relationships with loved ones, and quality of life. Over 1,700 people with blood cancer and nearly 200 caregivers shared their experiences.

From obvious symptoms to incidental findings

There can be many different signs and symptoms of blood cancer, including swollen lymph nodes, bleeding and bruising, fatigue, bone pain, and weight loss. The symptoms aren’t always obvious and can sometimes be caused by other, non-cancerous conditions. Only half of respondents had their blood cancer detected because they visited a doctor to evaluate their symptoms. Others had their blood cancer detected as an incidental finding, which means that the disease is unintentionally discovered during routine testing or exams for another condition. No matter how your blood cancer was found, the diagnosis often comes as an enormous shock.

50% of respondents had blood cancer detected due to symptoms. Others were found by routine exams or while under care for other conditions

Physical and emotional well-being

The impact of blood cancer often goes beyond the body and can affect emotional well-being. While nearly half (43%) of respondents have accepted their illness, only a small portion (16%) are very much content with their quality of life right now.

Blood cancer impacts many aspects of life including sleep, sex life, pain, energy levels, and work

Finding sources of support

When coping with a blood cancer diagnosis, there’s no one size fits all answer. 79% of respondents felt that their attitude is a significant factor in their quality of life, so it’s no surprise that over half of patients said they try to think positive thoughts. Other coping strategies like prayer or visiting a religious figure, exercising, incorporating humor into life, writing/blogging, and working can all play an important role in helping people to deal with the life-changing impact of blood cancer.

Some ways people cope with blood cancer included thinking positive thoughts (58%), pray or meditate (46%), and exercise (36%)

You, me, and blood cancer

Blood cancer is often an unwelcome third wheel in relationships with significant others, family, friends, and other loves ones. While over half of patient respondents said that they talk with friends and family to help cope with their diagnosis, those conversations can sometimes be difficult. Connecting with other blood cancer patients or caregivers can be helpful when you feel like others just don’t get it.

47% of respondents think others don't understand what they're going through and 35% feel like a burden when sharing concerns

Caregivers worry, too

8 in 10 patient respondents reported having someone else involved in the management of their blood cancer, including spouses, children, friends, siblings, and paid caregivers or home health professionals. Nearly 90% of caregivers said that they provide emotional support to the person they care for, but caregivers often need support, too.

Caregivers worry, too. 75% worry about their loved one's future and 47% feel helpless that they can't do more for the patient

The Blood Cancer In America 2019 survey was conducted online from September of 2018 through January of 2019. Of the 1,893 people who completed the survey, 1,713 were people who have been diagnosed with blood cancer and 180 were caregivers of people with blood cancer. Of diagnosed respondents:

  • 29% have been diagnosed with or cared for someone with multiple myeloma
  • 32% have been diagnosed with or cared for someone with lymphoma
  • 27% have been diagnosed with or cared for someone with leukemia
  • 12% have been diagnosed with or cared for someone with another type of blood cancer


Comments

  • meganc83
    3 weeks ago

    I have been recently diagnosed with Waldenströms Macroglubulinanemia and Chronic Lymphocytic Leukemia. I also no longer have any medical insurance due to being dropped by New Mexico Medicaid. I am currently struggling with getting a way to start finding a cancer doctor and treatment options due to living in Artesia which is a rural town located in Southeastern New Mexico and with limited resources…. Any ideas???

  • Yolanda Brunson-Sarrabo moderator
    3 weeks ago

    Hi @meganc83 Gorry to hear about the series of downfalls in gathering resources for your care.
    Please take a look at this past post with possible guidance-
    https://blood-cancer.com/caregiver/resources/

    Also, check out your local resources in Artesia such as – https://cancerservicesnm.org/new/

    Let us know how everything turns out. Best!

  • meganc83
    5 days ago

    Thanks

  • Yolanda Brunson-Sarrabo moderator
    8 months ago

    @wblair sorry for your trials and tribulations. Unfortunately, normalcy is not quite as what we’ve known it to be. We learn to move forward in this new normal and make the best of the situation one day at a time. Wishing you the best!

  • wblair
    8 months ago

    Had a bone marrow transplant 3 years ago. 2017 had some crazy things going on with me and had to stay at Emory Cancer Center another 8 days. I have been diagnosed with Chronic GVHD. Do you ever get over this and back to normal? My bone density test in September show weak bones. Could my cancer come back? Still lots of red spots on arms which bleed east

  • Ann Harper moderator
    8 months ago

    I think once given a cancer diagnosis you never go back to normal. You are now known as the person who had cancer. There is also the life before and after cancer. It’s just who we are now.

  • Ann Harper moderator
    8 months ago

    Hearing the words, “You have cancer” is scary and there is no good cancer. When someone in the family has cancer it affects everyone. It’s extremely important for the person with cancer and their caregivers to have a support system. Having someone you can count on to listen and help with other needs takes some of the stress off of everyone.

  • bluchs
    8 months ago

    Wow! Good Article.
    And it is right on.
    There is No Such Thing as a Good Cancer.
    Cancer of all kinds Suck!
    My mother died of breast cancer in 1997, plus 2 of her sisters and 3 of my cousins also died from breast cancer.
    I lost an uncle to pancreas cancer.
    I have CLL.
    Yes I have experienced swollen lymph nodes.
    I have every single day, bone pain and sever fatigue.
    I bruise very easy, and I am in fact covered with bruises, and I am a bleeder.
    Before cancer, I was a lean and fit 170 lbs. at 5’10” with a 32″ waist line.
    Now I struggle to try to gain weight, I am at about 132 lbs. right now, and when first diagnosed, I dropped down to 104 lbs.
    I actually have to take 2 different types of
    ( Yes opioids ) 7 pills every day, just to get through the day.
    PAIN Wow! I keep on trying to reduce pain med us, but I just can’t seem to, but I won’t take any more, even though they have been offered, by my pain management team.
    And I do feel like a criminal, every time I have to go to the pharmacy to get them re filled, every month. ( with all the bad press from abusers out there? ) it sucks for those of us that need them, just to exist!
    My son is my biggest fan and caregiver.
    He tries very hard to be strong for me, he calls me every day, right now he is building me a cottage on his 6 acre property, just to be able to better care for me.
    I rarely ever see him cry?
    But his wife, and his mother, plus his oldest daughter, now she is 21, they all tell me he sometimes cries himself to sleep over me.
    They all ask me not to let him know they told me about this?
    I can relate, I used to cry myself to sleep when my mother was fighting cancer.
    So YES, Caregivers suffer and worry too!
    There is No Good Cancer, it all sucks!
    Right now, I of course, want to live for myself, but I want to live for my son as well, he deserves so much.

  • Ann Harper moderator
    8 months ago

    What a wonderful relationship you have built with your son. Living for yourself will ultimately help him because you will be there to share your time with him. Good luck to you. I’m sorry you are going through so much.

  • Racheli Alkobey moderator
    8 months ago

    YES YES YES YES YES!

    Thank you so much for sharing this extremely valuable information.

  • Carole McCue
    7 months ago

    A great article. Life is never the same….but we can learn to appreciate what matters. Yes we have our moments. For me it is the fear of recurrence. I dread my
    scan-xiety before my annual CT😩
    However family, faith and friends are what keeps me going🙏🏻

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