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Collateral Damage: Symptom and Side Effect Management

More women are now living for many years after breast cancer treatments. But when treatment ends, new problems can begin.

For most women the end of treatment is accompanied by lingering side effects, including problems resulting from treatment that can come up years later. This is why you should keep records of your treatment (including a written summary of your disease characteristics, treatments received, and complications) and have regular contact with a health practitioner who knows about delayed treatment effects.

All cancer treatments can cause some long-term side effects. Be aware that:

Surgery will result in scarring and other changes to your breast.

Scarring is an inevitable consequence of breast surgery. The appearance of the scar depends not only on the extent of the surgery but on your skin, your body type, the size of your breast, and the type of surgery you had. It can take more than a year for a mastectomy Stay Abreast of the Latest Foundation News and Updatesincision to heal completely. After a lumpectomy, your breast may look foreign and disturbing to you; it may have a dent, look shrunken, or appear to be pulled to one side. There is nothing wrong with being concerned about how you look. You've been through a very unpleasant and life-changing experience; you're entitled to do what you can to make its aftermath as comfortable as possible. If you are troubled by your appearance months or years after surgery, talk to a plastic surgeon about all the possibilities and decide what's best for you.

Surgery can result in long-term pain.

While most women experience some pain in the weeks after surgery, especially a mastectomy, many will have such pain for years afterward. In some instances, the pain begins years after the operation. Forty-nine percent of patients who have breast cancer surgery say they have some sort of ongoing pain or change in sensation, and 10% say it interferes with their daily lives. This pain may be in the mastectomy scar, the arm, or even the muscle under the breast. It may be necessary for you to consult a pain specialist to get the proper treatment. Options may include massage, acupuncture, and antidepressants, which have an effect on damaged nerves.

Lymph-node dissection can cause side effects.

If you had a lymph-node dissection, you may experience a stiff or frozen shoulder a month after breast surgery. When your armpit hurts, it's natural to try to protect it by keeping your arm immobilized. But when you don't use your arm, your shoulder muscles grow weak and the tendons and ligaments tighten. This can lead to more pain and, in some instances, the joint becomes locked. To prevent or reverse these problems, start with gentle exercise, like walking your fingers up a wall or circling your arms. Swimming is especially good. Massage often can help to reduce this soreness, while a physical therapist can help you devise a program to increase your strength and flexibility.

Radiation can cause some delayed problems, including muscle soreness.

Radiation can result in muscle soreness, especially in the pectoralis major muscle, which runs above and behind the breast. Radiation causes inflammation of the muscle, and as it begins to regenerate, it can get sore and stiff. Many women commonly mistake this pain as the cancer spreading, since the radiation has been over for months and they're not expecting new side effects from it. Exercise, with the assistance of a physical therapist if needed, can help you to develop strength and flexibility, while massage often can help to reduce this muscle soreness.

Chemotherapy can result in decreased cognitive function (what patients call "chemo brain").

Many women who have had chemotherapy complain of "chemo brain." The most common difficulties include paying attention, learning new things, and speedily processing information. While it is unknown known why or how this happens, a 2015 study suggests the cognitive problems may be linked to cytokines released by the cancer and not actually a direct result of chemotherapy. For someone who needs the treatment to survive, the cognitive impairment may be worth it, but in cases where chemotherapy offers only a miniscule survival improvement, it may not be.

Chemotherapy can cause fatigue.

Your body is still trying to heal, and usually we underestimate how long it will taks to get back to normal after your body has been assaulted by surgery, radiation, and chemotherapy. Much of the fatigue while on chemotherapy and after is caused by anemia. This can be treated by transfusions or by erythropoietin (brand name Epogen), a drug that stimulates the bone marrow to produce more red blood cells. Several studies also have found that aerobic exercise can help decrease the fatigue.

Chemotherapy can cause weight gain.

Although the cause of weight gain with chemotherapy is not clear, one study revealed that 50% of patients gained more than 10 pounds. This was independent of type of chemotherapy, age, and menopausal status, although the women who gained weight did have a decrease in activity. There is some data suggesting that overweight women have a higher mortality than lean ones. This has increased interest in nutritional and exercise programs for survivors.

Chemotherapy and hormone treatments can lead to bone loss.

Premenopausal women whose chemotherapy and hormone treatments lead to premature menopause and postmenopausal women who use aromatase inhibitors may experience accelerated bone loss. Women who have had breast cancer should follow the general recommendation from the National Osteoporosis Foundation: first bone density test at 65 or at the end of therapy.

Frequently Asked Questions

Can chemotherapy make you feel confused and forgetful? I started not being able to remember things during my treatments and I'm still having problems six months later. Is this normal?

Unfortunately, this is indeed quite normal. While it’s not certain just how many people have cognitive impairment after cancer, it is estimated that between 17% and 50% of cancer survivors will experience what is commonly referred to as "chemo-brain" or "chemo-fog." Women and men who experience chemo-brain typically say they are not able to concentrate, have a hard time remembering things, have trouble finding the right word when speaking or writing, or can't multitask the way they used to.

This type of cognitive dysfunction is a problem that cancer survivors have been talking about for years. Only recently have researchers begun studying the impact of chemotherapy on cognitive functioning, but it's not an easy area to study. Part of the problem is sorting out which problems are due to chemotherapy and which are due to having a serious illness like cancer that can result in physical debilitation, depression, sleep disruption, hormone shifts (not just sex hormones, but thyroid, melatonin, etc.), and fatigue—all of which can affect cognitive functioning. A 2015 study suggests the cognitive problems may be linked to cytokines released by the cancer and not actually a direct result of chemotherapy.

You should speak with your doctor about the problems you are experiencing to try to rule out other causes. Your doctor should review with you whether depression, the use of medications that are sedating, or sleep problems that are causing fatigue could be factors in the cognitive problems you are experiencing.

Developing coping strategies such as making lists, using a tape recorder or Dictaphone, carrying a personal calendar or diary, or taking notes during conversations can also be helpful. Doing puzzles to stimulate your mind may be helpful. So can reducing stress, which not only can result from such cognitive problems but can also cause them.

Three years ago I had a bilateral mastectomy and chemotherapy. My hair has never returned to the way it was. It is now very thin and brittle. It also grows very slowly. Is this normal?

Chemotherapy and menopause can both result in changes to a woman’s hair. If you lost your hair during chemotherapy and/or went into menopause due to the chemotherapy or shortly thereafter, it could certainly cause your hair to become thin and brittle.

You might want to see a dermatologist who specializes in hair loss. She or he could analyze your hair follicles and recommend some topical treatments, supplements, or drugs. One option, for example, might be Women’s Rogaine, which is used to treat hair loss.

The dermatologist should also be able to rule out any underlying other problems that might be contributing to the changes in your hair.

I am using Estrace cream for vaginal dryness. Will it have an effect on my partner?

It is recommended that you do not use Estrace vaginal cream right before or even several hours before having intercourse or other types of vaginal penetration. However, the dose of estrogen in Estrace is very low, and not much is absorbed, so even if you did on occasion have sex within a few hours of using the cream it should not have an effect on your partner. (There have been a few anecdotal reports of men developing gynecomastia (enlarged breasts) from frequent exposure to their partner's estrogen vaginal cream.)

In terms of oral sex: Swallowed cream needs to be digested and metabolized so it would probably be okay to assume that even a lower dose would be absorbed and would not affect your partner.

Would low-dose testosterone help me get my sexual desire back? Would it be safe? I am 47 and just had my third breast cancer recurrence; my cancer has now spread to my lungs.

Although testosterone is advertised widely on the Internet as a hormone that can improve women's sexual desire, there is actually very little research on testosterone use in women. This means we still have a lot to learn about the safety of testosterone and what the long-term effect of its use may be.

Some researchers have theorized that a woman's libido is linked to her testosterone level. But finding data to back that assumption has been difficult at best.

In 2004 the North American Menopause Society (NAMS) published a position statement on the use of testosterone in postmenopausal women. NAMS noted that while there is data indicating that testosterone increased sexual desire, arousal, and response, there is not enough evidence to support routine testosterone use. They recommended that if it is used, it should only be at the lowest dose for the shortest time possible. They also concluded that testosterone should not be used by women who have had breast or uterine cancer or by women with cardiovascular or liver disease.

I would agree that it is probably not a good idea to take testosterone, even at a low dose, if you have had breast cancer.

What are the pros and cons of using daily oral DHEA? I have heard that it is better than testosterone for increasing sex drive.

Dehydroepiandrosterone (DHEA) is made by the adrenal glands and is a precursor for testosterone. Your body first begins making DHEA when you are around six or seven. The amount you have in your body peaks when you are in your 20s and then slowly declines as you age. At all ages, men tend to have higher levels of DHEA than women do.

About four years ago DHEA began to be advertised widely as a "miracle" hormone that could do everything from prevent cancer to improve sex drive. However, we actually know very little about DHEA. And we know virtually nothing about how it might affect a woman's risk for developing breast cancer or experiencing a breast cancer recurrence.

There is some research indicating that testosterone may increase a woman's risk for breast cancer even more than estrogen does. This makes me concerned that DHEA could increase breast cancer risk as well. Until we know more, I would not recommend the use of DHEA.

How safe is Estrace cream for treating extreme vaginal dryness? I'm worried that the estrogen may increase my risk for a breast cancer recurrence, but I also don't want to stop having sex.

Anything placed in the body that can be absorbed can affect the entire body. The question is: how much is absorbed and might it be a potential problem?

All of the research on the various vaginal remedies used to decrease vaginal dryness has been done on women who have not had breast cancer. These studies found that the estrogen creams appear to have a higher absorption than the Estring or Vagifem do. That's because both the Estring and Vagifem are very low-dose estrogen products.

If you want to continue to use the estrogen cream, you should use a very small amount. All you really need is just a little dab on your fingertip. However, you may want to speak with your gynecologist about getting a prescription for Vagifem or the Estring, as these products have lower absorption levels. Vagifem is a tablet that sticks to the vaginal wall and delivers about the same amount of estrogen that an Estring does. After a week of daily use, it is used twice a week. The Estring is a ring inserted into the vagina that delivers interval small doses of estrogen. It can stay intact for up to three months.

Some women also try one of the over-the-counter vaginal lubricants, such as Replens or Astroglide. Vitamin E oil is another option and may work for some women. But for most women with extreme vaginal dryness, the Estring is best.

Is the Estring safe? Could the estrogen get into my breast and increase my risk of a breast cancer recurrence? Are there other options I should try?

Anything placed in the body that can be absorbed can affect the whole body, whether it is the Estring, Vagifem, or estrogen creams. The question is, how much absorption and might it be a potential problem?

We currently have no data on the use of these products in women who have had breast cancer. But because of the very low systemic absorption and because vaginal dryness and painful intercourse can be a real quality-of-life issue, oncologists have become more comfortable having women who have had breast cancer use either Vagifem or the Estring to relieve vaginal dryness.

Vagifem is a tablet that sticks to the vaginal wall and delivers about the same amount of estrogen that an Estring does. After a week of daily use, it is used twice a week. The Estring is a ring inserted into the vagina that delivers interval small doses of estrogen. It can stay intact for up to three months.

Some women also try one of the over-the-counter vaginal lubricants, such as Replens or Astroglide. Vitamin E oil is another option and may work for some women. But for most women with extreme vaginal dryness, the Estring is best.

I am a breast cancer survivor. My gynecologist recently recommended that I try the Femring to help with vaginal dryness. Could the estrogen in the Femring increase my risk for a breast cancer recurrence?

The Femring is a form of hormone replacement therapy and is meant to provide systemic hormone therapy that can help relieve an array of menopausal symptoms, including hot flashes.

Because it has higher levels of estrogen, the Femring would not be the best treatment for vaginal dryness for breast cancer survivors. A better alternative is Vagifem or the Estring, which are low-dose estrogen products specifically designed to treat vaginal dryness.

Vagifem is a tablet that sticks to the vaginal wall and delivers about the same amount of estrogen that an Estring does. After a week of daily use, it is used twice a week. The Estring is a ring inserted into the vagina that delivers interval small doses of estrogen. It can stay intact for up to three months.

Some women also try one of the over-the-counter vaginal lubricants, such as Replens or Astroglide. Vitamin E oil is another option that may work for some women. But for most women with extreme vaginal dryness, the Estring is best.

I am a breast cancer survivor. Can I use Premarin cream to treat vaginal atrophy and severe inflammation of the labia?

The current thinking is that using Premarin cream is probably safe for a short time or if used in an intermittent fashion. Most women find that after using the cream on a daily basis for a couple of weeks, they can cut back to every other night. They then typically find they can cut down to a couple of times a week, and, from there, to once a week. Some continue to use it weekly, while others only use it when the inflammation kicks up.

My gynecologist recommended Vagifem vaginal tablets for vaginal atrophy and dryness. Are they safe to use long-term?

Vagifem is a tablet that sticks to the vaginal wall. It works by releasing a low dose of estradiol into the vagina. Most of this estrogen goes into the vaginal wall, but a small amount does also get into the blood stream. However, the amount that enters into the blood stream is far less than what would be present in a woman taking oral estrogen tablets. And because it is such a low dose, women who use Vagifem do not need to take a progestin or use progesterone cream. In contrast, women who take oral estrogens must also take a progestin, unless they have had a hysterectomy.

No one has conducted a long-term study of Vagifem. All of the studies that have been evaluated this drug's benefits and risks have followed women for 12 months, or less. However, most doctors believe that small doses of vaginal estrogens, like Vagifem, seem to be the safest way to treat vaginal atrophy. Furthermore, a recent position paper from the North American Menopause Society concluded that women could stay on a vaginal estrogen as long as necessary to treat vaginal atrophy or other problems, as long as other symptoms, such as vaginal bleeding, spotting, and breast pain did not occur.

Many women find that once the vagina is “plumped up” they can use a low dose of Vagifem intermittently. Some have found that using Replens, a vaginal moisturizer that can be purchased over the counter, can decrease their need to use Vagifem. Others have found that once the Vagifem improves the vagina, using lubricants, like KY Jelly or Astroglide when having sex, helps address their problems. (Sex, in and of itself, is good for the vagina because it helps keep the muscles in shape.)

We currently have no data on the use of Vagifem in women who have had breast cancer. But because of the very low systemic absorption and because vaginal dryness and painful intercourse can be a real quality-of-life issue, oncologists have become more comfortable having women who have had breast cancer use either Vagifem or the Estring to relieve vaginal dryness.

Women who have a history of endometriosis are advised to be cautious about their use of Vagifem. It’s typically suggested that women who have endometriosis use Vagifem for only a few weeks or months (if at all). Then, they should try to sustain the plumpness with other non-hormonal moisturizers, like Replens.

After my breast cancer surgery I had doxorubicin (brand name Adriamycin) and cyclophosphamide (brand name Cytoxan), and it was quite brutal. Now I have been diagnosed with a thyroid problem called Hashimoto's thyroiditis and I think it is because of the chemo. What do you think?

The thyroid is a gland located in the neck, below the Adam's apple. It makes and stores hormones that help regulate heart rate, blood pressure, body temperature, and the rate at which food is converted into energy.

It is estimated that 20 million people in the US have thyroid disease. The disease is five to eight times more common in women than it is in men.

Thyroiditis is the inflammation of the thyroid gland. Hashimoto's thyroiditis is the most common form of thyroiditis. It is a form of thyroid disease in which the immune system attacks and destroys the thyroid gland. As a result, the thyroid gland isn't able to produce enough thyroid hormones for the body to function properly. Hashimoto's thyroiditis is the most common form of hypothyroidism (underactive thyroid).

The most common symptoms of Hashimoto's thyroiditis are fatigue, depression, sensitivity to cold, weight gain, muscle weakness, coarsening of the skin, dry or brittle hair, constipation, muscle cramps, increased menstrual flow, and goiter (enlargement of the thyroid gland).

It can usually be treated with a thyroid hormone replacement medication such as levothyroxine (brand name Synthroid). The amount of the drug that you take will be adjusted for your blood levels of thyroid-stimulating hormone (TSH).

Was it caused by the chemo? I don't know. Hashimoto's thyroiditis is such a common disease, it's really hard to say. The good news, though, is that it is easily treatable and, other than having to take a pill every day, should not affect your quality of life.

Six years ago I was treated for breast cancer with a lumpectomy and radiation. Three years later I was diagnosed with a goiter. My endocrinologist said she has seen a number of women who had breast cancer who went on to develop thyroid cancer and recommended that I have my thyroid removed. Is there a link between breast cancer and thyroid cancer?

The thyroid is a gland located in the neck, below the Adam's apple. It makes and stores hormones that help regulate heart rate, blood pressure, body temperature, and the rate at which food is converted into energy. A goiter is another name for an enlarged thyroid gland. This type of thyroid problem is very common.

Thyroid cancer typically shows up as a nodule in a normal-sized thyroid, not as a goiter. Thyroid cancer is relatively uncommon, but it is more likely to occur in women (about 17,640 women and 5,960 men are diagnosed with the disease each year), although the prognosis is worse in men.

If you have symptoms that your doctor thinks indicate you may have thyroid cancer, a thyroid scan or an ultrasound can be done. Your doctor may also take a sample of fluid from the tumor. This is called a fine needle aspiration biopsy. A biopsy is the only way to be positive that cancer is present. If the biopsy shows you have cancer, your doctor may order additional tests, such as CT scans, an MRI, or more thyroid scans. These tests will help your healthcare team to determine what type of thyroid cancer it is and to assess how far it has spread.

After I started taking tamoxifen, I found that I tired easily. My oncologist said tamoxifen shouldn't make me tired, and ran some blood tests and diagnosed me with a condition called hypothyroidism. Is there a connection between this and the tamoxifen? What does this mean?

When breast cancer patients have trouble bouncing back from therapy, it is important to check thyroid function to be sure that the symptoms of feeling poorly aren't just attributed to the side effects of drugs, especially since thyroid problems are so treatable.

Hypothyroidism is very common. More than five million people in the US have been diagnosed with the disease, and millions more have it but don't know it.

Hypothyroidism is a condition in which the body does not have enough thyroid hormone. Common symptoms of hypothyroidism include fatigue, weight gain, dry hair and skin, hair loss, cold intolerance, constipation, depression, irritability, abnormal menstrual cycles, and decreased libido.

It is great that the hypothyroidism has been discovered, as it can be easily and effectively treated with a drug such as levothyroxine (brand name Synthroid). The amount of the drug that you take will be adjusted for your blood levels of thyroid-stimulating hormone (TSH).

Is there a connection between your hypothyroidism and the tamoxifen? Tamoxifen has been shown in a few small experimental and clinical studies to have an antithyroid effect. One study found that some rats given tamoxifen went on to develop an enlarged thyroid. Another study followed postmenopausal women receiving adjuvant tamoxifen treatment for breast cancer. The study found that there was an increase in thyroid-stimulating hormone levels about three months after tamoxifen was started, but that the level began to decrease after the women had been taking tamoxifen for six months.

So the answer to your question is maybe. It could be related, but it could also be that before you were diagnosed with breast cancer you had already started to develop a thyroid problem or even had a thyroid problem that had never been diagnosed. Thyroid problems are so common that it's really hard to say.

The good news, though, is that it is easily treatable. For now, it is important to take the tamoxifen and the thyroid medication. Then, after you complete the tamoxifen, you should continue to have your thyroid checked on a regular basis to see if your condition stays the same or improves.