January 2018 Ask the Expert: Understanding Long-Term Side Effects

January 1, 2018

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.

What kind of long-term side effects can I expect from radiation?

First, remember that the intent of radiationinfo-icon is to prevent local recurrenceinfo-icon from happening in the breast and/or in the lymphinfo-icon 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 tissueinfo-icon 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 oncologistinfo-icon 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.

How long does fatigue last after treatment? Are there any solutions that are especially helpful for fatigue caused by cancer treatment?

This side effectinfo-icon 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 fatigueinfo-icon is radiation therapyinfo-icon. 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 radiationinfo-icon and 3-4 months after chemo. Some women report fatigue for as long as a year. Fatigue can also, however, be associated with stressinfo-icon, and this diagnosisinfo-icon and its treatment is no doubt stressful.

I had neuropathy in both my hands and my feet. Since chemo ended almost 3 months ago, my hands have recovered, but my feet are still bad, maybe even worse. Will they improve? How long does it take?

Hopefully they will improve but it is really important that your medical oncologistinfo-icon is aware of it, as he or she may want to put you on a drug to reduce this side effectinfo-icon. Commonly patients are placed on gabapentin (Neurontin). 

How long will sexual side effects and menopausal symptoms last after treatment? What products are safe to use for lubrication and to stop vaginal wall thinning? I’ve heard the antidepressant Wellbutrin can help with sex drive. Is that true?

If the menstrual cycleinfo-icon 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 menopauseinfo-icon 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 doseinfo-icon of an estrogeninfo-icon vaginal tablet or cream for improving thinning of the vaginal wall and to increase moisture there.

I developed new food allergies after breast cancer treatment. Have you ever heard of this being a side effect of treatment? Why might treatment have caused it?

I have never heard of this happening before. There are no treatments that are known to create this phenomenon. 

During chemo I dealt with mouth ulcers throughout and terrible rashes on my fingers from an allergic reaction to paclitaxel (Taxol). Now almost 3 years later I am still occasionally getting mouth ulcers and strange rashes in the same spots. Can going through chemo make you prone to these types of reactions even years later?

It shouldn’t. It can however effect your immune systeminfo-icon, for example keeping your white blood cellinfo-icon count low, which can cause infections and other inflammatory reactions to happen more often than they did before. 

Why is my left breast still not the normal color it was before radiation? It got darker and has stayed that way.

Radiationinfo-icon 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.

I did not have a weight problem before taking an aromatase inhibitor. But during my 5 years of treatment I gained 20 pounds. I had hoped once I was off anastrozole (Arimidex) for an extended time that I would go back to my usual weight, but I have tried and have not lost any weight. Can these drugs contribute to long-term weight gain and difficulty losing weight? Are there any weight loss methods that could be especially useful to people who have had breast cancer?

Hormonal therapyinfo-icon commonly does cause weight gain. This is a common symptominfo-icon of menopauseinfo-icon and with the reduction of estrogeninfo-icon 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. 

I finished treatment with surgery, radiation and AC-T chemotherapy in May 2016. I now have unexplained areas of skin itching on my lower body. I have been itching myself raw. Is this a long-term effect? What can I do about it?

No, so it's time to see your primary careinfo-icon provider to determine the cause. 

I have range of motion restrictions in my involved armpit and continued lumpy and tender scarring in my involved breast following lumpectomy, removal of 11 lymph nodes and then radiation. I'm an active person and I do prescribed exercises to stretch the areas daily. This has caused some improvement, but I am still far from what I'd consider fully recovered. I finished treatment 7 months ago. Is this as good as it gets? Or can I hope for further improvement?

Request a consultation with a cancer rehab therapist who can break up these bands and scar tissueinfo-icon in your underarm so that you can start getting full range of motion back again. 

I was diagnosed with breast cancer in 2010. I had lymph nodes removed from both armpits and then I had aggressive chemotherapy. I noticed that now, I sweat VERY little. If it is hot, I just turn very red and feel very hot but I do not sweat. I have lymphedema too and my arm swells with the heat. Did the chemo or the removal of the lymph nodes destroy my sweat glands? Should I be concerned?

This is associated with the lymph nodeinfo-icon surgeryinfo-icon. It disrupted the pathway of the sweat glands to do what they do – triggerinfo-icon you to sweat. It actually is OK. Some women consider it an advantage – less use of antiperspirants and less discoloration of their clothing in the underarm region, too.

Are there any ways medically to reverse or reduce the damage to the heart from radiation to the left breast several years after the radiation happened?

Unfortunately, no. However, remaining active with regular exercise that keeps your heart pumping blood as it should may be of benefit. 

Treatment is over, but I still feel like my short-term memory is not as good as it used to be. Will this get better? Is there anything I can do to improve it?

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. 

My oncologist and surgeon have both left my area since my treatment with them ended, so I feel unsure about who to go to with concerns about long-term side effects, like back and hip pain. How should I handle this situation?

It depends on the stageinfo-icon of your breast cancer and how many years out you are now from treatment. For someone who had stage I breast cancerinfo-icon for example, and the tumorinfo-icon was estrogen receptor-positiveinfo-icon and HER2-negative, hormonal therapyinfo-icon continues to be part of the maintenance therapyinfo-icon for preventioninfo-icon of recurrenceinfo-icon for 5-10 years. You need to be followed by a medical oncologistinfo-icon to receive this drug and you need to see the oncologistinfo-icon or their nurse practitionerinfo-icon every 6 months. If the breast cancer was estrogen receptor-negativeinfo-icon, 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 oncologyinfo-icon 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 incidenceinfo-icon of cancer diagnosisinfo-icon continuing to increase, especially with baby boomers now being in mid-life. This is a sad but true fact.

I had whole-brain radiation months ago. Afterward, I started feeling tired all the time and even now, I spend so much time – during the day and night – sleeping. Will this go away as I get further out from the radiation? Is there anything I can do to make it better?

It's possible it may remain this way. Keep in mind that if you had radiationinfo-icon to the brain due to metastaticinfo-icon breast cancer spreading to the brain, then it is in other organinfo-icon sites too and is taxing your immune systeminfo-icon. How well the team taking care of you can get this under control while preserving or restoring quality of lifeinfo-icon is a balancing act. So the fatigueinfo-icon 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 caregiverinfo-icon with her, which could be her mom, her sister, her daughter, etc. Email [email protected] for details. 

I will undergo a sentinel lymph node biopsy later this month. Is lymphedema an expected side effect of this procedure? If so, what can I do to minimize the risk?

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 lymphedemainfo-icon. If your sentinel node is positive, however, and an axillary node dissection does need to be done, request a referralinfo-icon to the rehabilitationinfo-icon department where there are certified lymphedema therapists to teach you how to minimize risk of getting lymphedema in the future. 

I had a lumpectomy a year-and-a-half ago, then radiation. I just recently noticed a pea-sized lump that is just under the skin about an inch below my scar. Of course I hope it is not a tumor and am wondering if, even this long after surgery, it could just be a long-term side effect like scar tissue or perhaps the marker they put in when they did my biopsy.

it might be stitches working their way to the surface of the skin, or it could be a local recurrenceinfo-icon. Time to see your breast surgeoninfo-icon for evaluation of it.