The New Normal: Helping People Cope with Breast Cancer

Even in a world of heightened breast cancer awareness, there is still a misconception that once a person has gone through treatment, her journey is over and life can return to normal. However, the reality for many includes dealing with the side effects of treatment and adjusting to a new normal – which is an entirely new endurance test.

Until recently, few spoke about the impact of their breast cancer treatments beyond the obvious: hair loss, nausea, fatigue and chemobrain. Most also assumed their side effects were temporary. But anyone who has been through breast cancer, or is close to someone who has, knows differently.

Dr. Susan Love Research Foundation set out to document just how widespread and debilitating the side effects can be. Through our online Health of Women (HOW) Study,™ and in collaboration with Susan G. Komen and Young Survival Coalition, we launched the Quality of Life questionnaire to document the extent of health symptoms associated with breast cancer treatment. We asked women to describe what life is like after the fact – and the floodgates opened.

An analysis of the first 2,856 responses from survivors showed the top three health problems attributed to breast cancer treatments. They’re listed below, along with helpful information and tips on how to alleviate them from three of our blogger friends.

  • #1: Hot flashes

    Claudia Schmidt, CSMC, LLC and author of My Left Breast said, “I use Remifemin, which is black cohosh-based and helps manage the hot flashes and night sweats. It doesn’t get rid of the hot flashes, but makes them 50% more manageable.” Check out Claudia’s blog post on “What to Give Someone Who’s Diagnosed with Cancer.”

    “For hot flashes,” Sara O’Brien, MS, RD, LDN, CNSC (Blogging Through Breast Cancer) said, “it’s cotton socks and dry-fit underwear, always layered during cold weather, with a sleeveless top or short-sleeved shirt under the heavier layers.”

  • #2: Sleepless nights

    Sara’s TV was her pal for those sleepless nights, but an offer from a friend to take a phone call in the middle of the night was always a tremendous comfort. Starting an exercise routine can also help, and more enjoyable if you do it with a friend.

  • #3: Intimacy-related symptoms

    According to Sara, “Communication with your partner is important. You cannot be afraid to speak up and let your partner know what you’re experiencing. “ For vaginal dryness, she also suggests being heavy-handed with water-based lubricant. There are a lot of products out there, so don’t be afraid to broach the topic with your gynecologist.

  • Fatigue and other symptoms

    Many other side effects were identified in our questionnaire, including fatigue, numbness, anxiety and depression—all of which gave us clues about how we can help breast cancer patients have more good days.

Holly Bertone, breast cancer survivor, advocate and author of The Coconut Head’s Survival Guide, used heavy doses of humor to help get her through treatment and recovery.

Claudia commented, “It takes a village to help a woman get through breast cancer and my village of friends and acquaintances helped me throughout the 16-month process by listening to my fears, supporting me through my tears, and celebrating with me when I was feeling good enough to focus on the positives.”

What else can you do?

  • Have meals delivered to your family post-surgery and chemo.
  • Exercise regularly. Even if it’s a short walk. Sara reflected on one of her best gifts being a nice pair of fleece pajamas. She said, “I would bribe myself to go for a walk, just a mile, to earn putting on my new favorite pjs.”
  • Make plans at earlier times (e.g., dinner at 4:30 p.m. rather than 7 p.m.). And plan around smaller, more easily manageable groups.
  • Write, write, write! Make to-do lists, keep a gratitude journal or send someone a note. Sara recommends “stationery you want to write on and pens that make you happy.”

Sara’s final words for supporters and co-survivors, “Please don’t tell your survivor that ‘everything will be okay.’ It is often the last thing they want to hear and often don’t feel that it is true. Listening to your fighter tell you her fears is helpful and letting them know you are scared too offers solidarity.”

As for Holly, she said that even on her worst days, whatever life hands her, she asks herself the question, ‘Is it worse than cancer?’ and so far, 100% of the time, it hasn’t been. As a result, Holly, Sara and Claudia agree that giving back to other women by participating in research through programs like our Army of Women® and the online Health of Women (HOW) Study™ gives them a sense of accomplishing something greater than what they are personally overcoming.

Until Dr. Susan Love Research Foundation undertook the Quality of Life project, many women could not identify the cause of some of their new health issues. Now they know they’re not alone.

It’s our hope that this research will focus more attention on the collateral damage that results from breast cancer treatments. For patients, their loved ones and caregivers, knowledge gives the power to have more good days after a breast cancer diagnosis. For the scientific and medical community, this knowledge needs to fuel new approaches that minimize or eliminate these side effects or better yet—that will end breast cancer before it starts.

by Dr. Susan Love Research Foundation. Copyright 2015