Long-Term Breast Cancer Support:
28 Apr 2017
Throughout your breast cancer journey, you may find yourself facing a variety of challenges. While some problems are short-term and disappear after treatment, others last for a much longer time. We’ve already written about short- and long-term side effects of breast cancer treatment. And we have an article about being a rockin’ co-survivor. But what sort of long-term breast cancer support will you need?
The Importance of Long-Term Care
Most long-term support focuses on psychological problems that women face after breast cancer. After treatment, many physical problems go away, but the mental impact can be lasting. Association to a cancer center in the U.S, 29 to 43 percent of 4,500 patients with cancer experienced notable psychological distress. Researchers have noted symptoms of post-traumatic stress disorder (PTSD) among individuals with cancer. They also found that individuals with cancer experience higher feelings of fear, anger, confusion and sadness. Family members of cancer survivors experience similar psychological challenges.
An Australian study found that 23 to 56 percent of women with breast cancer experience anxiety, helplessness and depression. And one-third of those women experience psychological issues that impair their quality of life over several years.
Psychological Needs by Phase of Care
Throughout their breast cancer journey, women experience a huge range of emotions. Some of the most common psychosocial concerns include:
Changes in body image
Communication challenges with spouse or partner
Feelings of vulnerability
Thoughts about illness
Fear of breast cancer recurrence
Experts expect all women to have these problems to some degree during their journeys. But they don’t all appear in every stage. Each phase of breast cancer—diagnosis, treatment, and post-treatment —presents with various concerns.
Disbelief and fear are often the first two emotions women experience after breast cancer diagnosis. For example, it may shock you if you don’t have a family history of the disease. Suddenly, you’re facing medical consultations and getting regular tests. Further, you have to make decisions about your treatment.
These sudden responsibilities leave you feeling overwhelmed. As a result, you might find yourself between two extremes. You may rush to treatment to relieve feelings of worry or you may struggle with making a decision. Ideally, you want to fall somewhere in the middle of these extremes. It’s not a good idea to rush your treatment, but you don’t want to be delaying your treatment unnecessarily.
If your emotions impact how you handle your treatment, seek the support of loved ones or professionals. They may be able to provide a more level-headed view of your treatment options. This can reveal various questions that your emotions may have blinded you to. Support also helps you cope with these emotions so you can be more involved in what is happening.
Once you’ve decided on a treatment plan, you may start experiencing higher levels of distress and anxiety. Plus, you may have new fears that relate more to the specific treatments you are going to undergo.
Perhaps the best way to cope with these problems is to learn about each treatment. You may already know about chemotherapy and radiation. But you can still learn about mastectomies and breast reconstruction. Learning about these procedures gives you a better idea of what the experience will be like. In turn, your worries and concerns are often decreased. Additionally, knowing the various side effects of certain treatments and drugs lets you prepare ahead of time.
As cliche as it may sound, knowledge is power. Knowing about what you will experience gives you the ability to change your decisions. You can even discuss ways to reduce common side effects with a physician before they occur.
Now that you’ve finished your breast cancer treatment, you might expect things to go back to normal. Many short-term physical symptoms will go away. Unfortunately, post-treatment comes with a host of emotions that you must deal with. These include uncertain about the future, elation, and depression.
After your treatment, your support group may start lessening their involvement in your life. You no longer have regular visits to the hospital and you don’t talk to your oncology team as often. This may leave you feeling isolated and alone. Should this happen, seek out help from either a professional or a post-treatment support group. Further, it may be beneficial to involve yourself in peer support. This puts you in the position of helping other women go through a similar journey to what you just finished.
In addition to loneliness, you’ll likely become concerned about recurrence or depressed about what you went through. Breast cancer changes how you view life. And these emotions are normal reactions to your changing views. As always, seek out help if you feel you need it.
Why Psychological Care Matters
Compared with the physical impacts of breast cancer, you may feel that psychological care is the least of your concern. But your mental well-being plays a huge role in your quality of life.
Psychological issues typically continue past your diagnosis and treatment. And, unfortunately, they can stop you from doing certain things. Depending on the emotions you feel, you may start eating poorly and stop caring for your body. Due to psychological changes, many women begin sleeping poorly.
You may withdraw from others and turn to chemicals or other escapes to self-soothe. Not to mention, depression can reduce your chances of surviving and certain emotions may increase the severity of treatment side effects.
According to some studies, psychological care results in a 45 percent lower risk of cancer recurrence. Additionally, the risk of dying from cancer decreases by 56 percent if you’re psychologically healthy.
You aren’t the only one who needs to worry about your mental health. Caregivers, family members, and friends are also at risk of suffering from depression and increased anxiety.
Others Key Areas of Long-Term Care
Although a lot of long-term care needs focus on psychological problems, you will most likely need support in other key areas.
The American Cancer Society’s Study of Cancer Survivors looked at what individuals needed the most after nearly 10 years of survivorship. According to the results, most respondents said they needed more information about screening tests for other types of cancer. Following that, they wanted more information about possible long-term side-effects and behaviors to promote a healthy lifestyle. Cancer-related resources were also listed as important in the study. As was information for caregivers and families about providing support and about how cancer can affect working.
Meanwhile, in 2015, the American Cancer Society (ACS) and American Society of Clinical Oncology (ASCO) released guidelines for long-term breast cancer care. According to these guidelines, there are five important areas of long-term care:
Screening for breast cancer recurrence,
Screening for another primary breast cancer,
Assessing physical and psychosocial long-term and late effects,
Maintaining good health, and
These areas are normally part of your post-treatment care plan. If they are not, discuss them with your physician.
Omit cancer screenings and you’ll most likely need to undergo physical examinations on a routine basis. During the first three years, physicians recommend screening every three to six months. For the next two years, this changes to every six to 12 months. After those first five years, you only need annual screenings. These screenings should check for both recurrence and second primary cancers that may appear.
Physical and psychosocial concerns also require routine assessment. We’ve already discussed some common physical long-term and short-term side effects, including lymphedema, chemo brain, and heart problems. You can read more about those here.
When it comes to maintaining good health, the recommendations are fairly simple. You should exercise regularly and maintain a healthy weight after breast cancer. Beyond that, it’s a good idea to eat healthy diets that include plenty of fruits and vegetables and limit alcohol consumption.