January 2018 Ask the Expert: Understanding Long-Term Side Effects
The side effects of breast cancer treatments don’t always end when that treatment ends. Some can linger for weeks, months, or even years, and some may not show up until after a treatment has ended. Weight gain, chemobrain, lymphedema, bone issues and fatigue are just a few of the long-term side effects you may experience from breast cancer treatment.
In January, Living Beyond Breast Cancer expert Lillie D. Shockney, RN, BS, MAS, ONN-CG, answered your questions about the long-term side effects of breast cancer treatment, including which ones are most common, how to deal with them and how to talk to your healthcare providers about them.
Remember: we cannot provide diagnoses, medical consultations or specific treatment recommendations. This service is designed for educational and informational purposes only. The information is general in nature. For specific healthcare questions or concerns, consult your healthcare provider because treatment varies with individual circumstances. The content is not intended in any way to substitute for professional counseling or medical advice.
First, remember that the intent of radiation is to prevent local recurrence from happening in the breast and/or in the lymph nodes under the arm. Long-term side effects are very dependent on the type of radiation received, the dosage given and the area that was included in the radiation field. However, in general, the breast tissue that was radiated may shrink some and feel firmer over time. If ribs were included in the radiation field then brittleness of these bones can occur, making them easier to break if, let's say, you get in an accident of some kind. For those having left-sided radiation, it is important for the radiation oncologist to tell the patient if any of their heart muscle was included in the radiation field because this could result in heart issues later, though this rarely occurs.
This side effect varies in part by the type of treatment received, your age, other medical issues you may have, as well as what instructions you were given while receiving treatment. The most common treatment to cause fatigue is radiation therapy. It has been scientifically proven that power walking for 30 minutes a day, at least every other day, while receiving radiation therapy can diminish fatigue by 70 percent. If not told about this rehab benefit during treatment, then fatigue can last 3-6 months on average after radiation and 3-4 months after chemo. Some women report fatigue for as long as a year. Fatigue can also, however, be associated with stress, and this diagnosis and its treatment is no doubt stressful.
If the menstrual cycle has resumed post-treatment, then usually after just a few months things will be back to being close to normal. However, if the treatment caused menopause and you remain in a menopausal state then it is possible these side effects may remain. If your periods have resumed, hopefully your pelvic health will start getting back into the groove again soon. Astroglide is a good option for lubrication. Some oncologists are comfortable placing women on a very low dose of an estrogen vaginal tablet or cream for improving thinning of the vaginal wall and to increase moisture there.
I have never heard of this happening before. There are no treatments that are known to create this phenomenon.
Radiation can cause skin changes similar to those of sun exposure, like burning and tanning. However with radiation it is common for the changes to be long-lasting. The change in the pigment of the skin from radiation can leave the breast skin permanently darker. There isn't anything that can be done to correct it.
Hormonal therapy commonly does cause weight gain. This is a common symptom of menopause and with the reduction of estrogen in the body that hormonal therapy causes, weight gain is also going to happen. Stick to a low-fat diet of 30 grams or less a day and exercise for 30 minutes each day. This can be power walking or aerobics – don’t feel obligated to get a gym membership because that isn’t necessary.
Unfortunately, no. However, remaining active with regular exercise that keeps your heart pumping blood as it should may be of benefit.
Hopefully, yes. Part of the cause may not be related to the physical treatment with drugs, but instead due to this being a life-altering experience, similar to soldiers going to war and now returning home. Their world doesn't feel the same and they can have difficulty concentrating and remembering things. This can also be the case with cancer survivors. Give yourself time.
It depends on the stage of your breast cancer and how many years out you are now from treatment. For someone who had stage I breast cancer for example, and the tumor was estrogen receptor-positive and HER2-negative, hormonal therapy continues to be part of the maintenance therapy for prevention of recurrence for 5-10 years. You need to be followed by a medical oncologist to receive this drug and you need to see the oncologist or their nurse practitioner every 6 months. If the breast cancer was estrogen receptor-negative, however, then once you reach the 2- to 3-year mark, you can usually be transitioned back to your community providers for long-term survivorship care.
Oncologists are largely no longer able to follow patients for the rest of their lives as was once the practice because we are dealing with a shortage of oncology specialists nationally. That shortage is projected to be as high as 41-48 percent by 2020. This is due to people not choosing oncology as their medical specialty in medical school and the incidence of cancer diagnosis continuing to increase, especially with baby boomers now being in mid-life. This is a sad but true fact.
It's possible it may remain this way. Keep in mind that if you had radiation to the brain due to metastatic breast cancer spreading to the brain, then it is in other organ sites too and is taxing your immune system. How well the team taking care of you can get this under control while preserving or restoring quality of life is a balancing act. So the fatigue may be from more than the brain radiation. it may be also due to the body fighting the cancer elsewhere.
Johns Hopkins offers free retreats for women with metastatic breast cancer. Consider attending one of these 3 day/2 night programs. There is one for couples, and for women not in a relationship there is one for the patient to bring her female caregiver with her, which could be her mom, her sister, her daughter, etc. Email firstname.lastname@example.org for details.
No, definitely not. This procedure was developed for the purpose of preventing the need for axillary node dissections where lots of nodes were removed that could then later result in developing lymphedema. If your sentinel node is positive, however, and an axillary node dissection does need to be done, request a referral to the rehabilitation department where there are certified lymphedema therapists to teach you how to minimize risk of getting lymphedema in the future.