June 2016 Ask the Expert: Long-Term Survivorship

June 1, 2016

Many people have decades of life ahead of them after breast cancer treatment is over. Though cancer is in the past, the experience of breast cancer, and the desire to do everything you can to lower your risk of recurrence, is part of your future.

In June, Living Beyond Breast Cancer expert Kathryn J. Ruddy, MD, MPH, answered your questions about long-term survivorship after a breast cancer diagnosis, from follow-up care and fear of recurrence to nutrition, exercise and stress relief.

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.

Every new pain I experience makes me worry about a recurrence. How can I deal with this fear?

You are not alone in this fear. I think these worries can be the hardest part of being a cancer survivor. Sometimes mindfulness meditation or yoga can aid in the management of these fears, and often counseling is very helpful as well.

Once the 5-years-past-diagnosis mark has passed, is it ever appropriate to do any types of testing to look for metastatic cancer, even if the person doesn’t have any symptoms? For peace of mind, I wonder if medical oncologists ever order PET scans, or other tests, to rule out local or metastatic recurrence.

I do not recommend any testing for metastaticinfo-icon cancer for patients with a history of early-stage breast cancerinfo-icon in the absence of symptoms. There are several large studies that have shown that those types of tests don’t help in this setting.  

How common is post traumatic stress disorder (PTSD) after cancer treatment, and what are the best treatment options for PTSD? I'm finding it very difficult to find a mental health provider with experience treating cancer survivors.

PTSDinfo-icon seems to occur in 3 to 5 percent of patients after breast cancer, and post-traumatic symptoms are seen in many more people than that. Psychotherapyinfo-icon with an experienced practitionerinfo-icon is a critical part of treatment for PTSD, and sometimes medicines are recommended as well. 

I definitely feel a lack of social support, at work and elsewhere, as a cancer survivor, and I don't know what to do about it. Everyone treats me as though I am fine, with no after-effects. I tend to shy away from people who don't understand rather than attempting to explain the situation, as it makes it uncomfortable for everyone. How should I deal with this?

Seeking a local or online support groupinfo-icon could be very beneficial for you. Your doctor may be able to recommend one, or you could call the American Cancer Society at (800) 227-2345 for suggestions. You may also want to consider sharing your experiences and feelings with at least a few of your more sympathetic colleagues so that they understand that you seek more support.

What is the best ways to deal with extreme, ongoing neuropathy in hands and feet? I know duloxetine (Cymbalta) with Nabilone (Cesamet) is an option, but are there other, better options?

While duloxetineinfo-icon does work well for some patients, others do not get much benefit from it. Unfortunately, efforts to develop better treatments for chemotherapyinfo-icon-related neuropathyinfo-icon have not been as fruitful as we would like.

One more interventioninfo-icon that is currently under study for painful neuropathy is scrambler therapyinfo-icon. This involves sending an electrical current through electrodes placed near the painful area. The goal of scrambler therapy is to retrain the brain to interpret signals from those nerves as a vibrations instead of pain.  But this treatment is not available everywhere, and its benefits are still uncertain.

Does lymph node involvement increase my risk of recurrence?

Yes, patients whose cancers have spread to axillary lymphinfo-icon nodes have a higher risk of recurrenceinfo-icon. Sometimes that means that more aggressiveinfo-icon treatments such as lymph nodeinfo-icon radiationinfo-icon are appropriate.

I have read that sugar feeds cancer and now I am so afraid to eat anything with sugar! How true is this?

The only large randomized clinical trialinfo-icon that showed that a particular diet reduced risk of breast cancer recurrenceinfo-icon used a low-fat diet, not a low-sugar diet. In that study, the women who ate a low-fat diet ended up weighing less than those who ate a standard diet, and I believe the benefit came from the impact on weight more than from specific foods.

So while it is true that being overweightinfo-icon or gaining weight may increase the risk of recurrence of breast cancer, eating sugar really shouldn’t be a problem as long as you don’t eat so much that it makes you gain weight. We recommend a well-balanced, heart-healthy diet with plenty of fruits and vegetables to optimize your general health, but there is no reason you need to be afraid of sugar.  

I noticed a difference in the size of my breast last month and called my oncologist for an appointment. The response from the office was, “You have an appointment in a few months. Can’t it wait?” Aren't I supposed to tell my oncologist if I notice something different about my breasts?

Yes, it’s a very good idea to contact your oncologistinfo-icon if you notice a change in your breast. Perhaps the person you spoke to at that office was not aware of this? I would suggest that you call back and emphasize that you would like to speak to a clinicianinfo-icon and/or be seen sooner if possible.

I will be a 16-year survivor in October. Recently I’ve been having a problem with my red blood cell levels being low, even after taking iron pills for a few months. Now I am scheduled to have a bone marrow biopsy. The oncologist said that sometimes having chemo can cause your bone marrow, years later, to stop producing red blood cells the way it should. Could what’s happening to me now cause, or be a side effect of, a cancer recurrence elsewhere in the body?

Either of those is a possibility, and there are also other reasons for low blood cellinfo-icon counts. It’s good that you’ll be having a bone marrow biopsyinfo-icon to identify the cause of the problem.

I had a double mastectomy without reconstruction 5 years ago. Has too much time gone by for me to get breast reconstruction surgery? Can a person be too old for this surgery? Do people who get this surgery years after diagnosis tend to be as happy with the results as people who get it done right away?

No, there is no time limit for reconstructive surgeryinfo-icon, and the results would likely still be at least as good as if you had done the reconstruction immediately. There is no age limit for reconstruction either, though older women are less likely to choose reconstruction than younger women. The risks of any surgeryinfo-icon do increase with age, particularly if you have heart problems or other serious medical issues. 

After surviving 5 years on an aromatase inhibitor, how do you choose whether to continue another 5 years in hopes of a lower recurrence rate or stop because of side effects (bone loss, weight gain, thin hair)?

You and your oncologistinfo-icon would generally weigh the expected benefits (which depend on the size and other characteristics of your original cancer) against the side effects you have experienced to date. Women whose cancers involved regionalinfo-icon lymphinfo-icon nodes are likely to benefit more from the extended course of treatment.

I was diagnosed with breast cancer when I was premenopausal. Now I am postmenopausal. Does being postmenopausal cause my risk of recurrence or new breast cancer to go up?

No, becoming postmenopausalinfo-icon might, if anything, reduce your risk of recurrenceinfo-icon if you had hormone receptorinfo-icon-positive breast cancer. Women who stop menstruating because of chemotherapyinfo-icon have been shown to have lower recurrence rates than women who remain premenopausalinfo-icon throughout treatment. 

What do you recommend in terms of exercise for reducing risk of recurrence?

At least moderate-intensity exercise for at least 150 minutes per week has been shown to reduce risk of recurrenceinfo-icon. Happily, exercise is also good for bone health, heart health and emotional health. 

What does current research say about soy, and whether eating it can make a recurrence more likely? I hear a lot of conflicting information about it.

The data are very mixed on how soy may impact the number of breast cancer diagnoses or a woman's prognosisinfo-icon after a breast cancer diagnosisinfo-icon. While we wait for additional research on this topic, I generally advise my patients that eating soy in moderation does not appear to be harmful, but I am less certain about the safety of high soy intake (such as multiple servings per day) for those with hormonally-sensitive tumors. 

Five years after chemotherapy for triple-negative breast cancer, my neuropathy worsened and my digestive system began to have major problems. Is it possible that my intestines are dealing with a late effect from treatment? All my scans and tests have not provided answers. My doctor wonders if the docetaxel (Taxotere) affected my brain/gut connection. Any thoughts on this possibility and how I can deal with this side effect?

It is not common that those symptoms would develop after a long delay, so it makes sense to have a comprehensive workup for other potential causes (and it sounds like that's what you're doing). Problems with your thyroid or with the way your body is absorbing nutrients should certainly be ruled out, and you may also want to see a neurologist to help with your evaluation.  

I was diagnosed with type 2 diabetes while receiving chemotherapy for breast cancer. I’m taking metformin pills for the diabetes. I’ve seen research that shows diabetics who take metformin have a lower risk of breast cancer and breast cancer recurrence. If this is the case, why don’t doctors recommend this medicine for all people with breast cancer?

Research is still underway to find whether metformin could reduce risk of breast cancer recurrenceinfo-icon. Because this drug can have side effects (such as diarrheainfo-icon), I would not recommend it unless there are other reasons to do so (such as diabetes) until we have definitive data showing a benefit in breast cancer.

I was first diagnosed with breast cancer almost 20 years ago, and I had a local recurrence last year. Is my risk of another local recurrence, or of metastatic breast cancer, higher because I’ve already had one recurrence?

Yes, having had one recurrenceinfo-icon does increase your risk of future recurrences.

I think a lot of people feel sad or depressed after their diagnosis, but I just feel angry. Nobody I meet at support groups seems to feel that same way. Is it normal to constantly feel angry after being diagnosed? What can I do to deal with these feelings and make them go away?

You’re not alone in your anger, and there are many psychologists and counselors who are experienced helping people who have had cancer copeinfo-icon with these feelings. Cognitive behavioral therapyinfo-icon can help and exercise may also have benefits. Please ask your healthcare providers to connect you with an expert on the emotional aftermath of cancer.