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Against Breast Cancer

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Posted by Betsy Mullen on 3/29/2001 from 64.12.105.181:

I was recently interviewed by HealthScout.com reporter; Fran Berger for an article and news story that broke today (3/29/01) regarding a study looking at the effects of Tamoxifen on sexual functioning and mood swings in healthy women considered to be a thigh risk for breast cancer. I have established a link to the article at the bottom of this message and the web address for the story is:
http://www.healthscout.com/cgi-bin/WebObjects/Af.woa/3/wo/mn8000ah8008o700un2/0.2.7.21.13.10.1.32.2.1.3
(HealthScout.com: Study Finds Tamoxifen Doesn't Affect Libido In Healthy Women, by Fran Berger)


We are in the midst of redesigning our web site, which will have expanded information about clinical trials, Tamoxifen, menopause and breast cancer and sexuality; so I have posted the following information regarding clinical trials and sexuality and breast cancer for your reference.

The WIN ABC organization is a strong proponent of informed consent and equal access to quality care, including clinical trials for individuals from all cultural and socioeconomic backgrounds. One of our main concerns and goal is to ensure that individuals have rapid access to current, relevant, culturally sensitive and linguistically appropriate information, resources and one-on-support regarding breast health, breast cancer and treatment options.

Ask questions, seek second opinions with well-qualified, board certified health professionals, carefully weigh the pros and cons, contact an organization such as WIN Against Breast Cancer for additional help and resources. Speak to other individuals who have been faced with a situation similar to yours, who have "been there, done that", who may in fact be enrolled in a trial you are considering or who have had the type treatment that you are considering.

WIN ABC will be happy to send our Breast Health/Breast Cancer Resource Guide and Sexuality and Breast Cancer publication, along with other materials, free of charge to those who are interested. I also encourage you to complete and mail us the Personal Profile Form at the top of this page (the link to the form is on this page) so that we can best meet your needs. Your information will remain confidential. Our main office telephone number is (626) 332-2255.


Clinical Trials *

Scientific research to find better treatments for cancer starts with basic research in the laboratory (in vitro) and animal (in vivo) studies. The safest and best results of such research can then be translated to human studies with the hope of finding breakthroughs that will benefit patients. Patients are enrolled in clinical trials on a strictly voluntary basis after careful screening and with the patientsí full consent. Patients participating in clinical trials are carefully monitored throughout the trial and are followed after the trial has ended. These patients become part of a network of clinical trials being conducted around the country run by teams of doctors and researchers. The researchers and doctors share their experiences and ideas to refine and monitor clinical trials.

There are a variety of reasons why patients choose to participate in clinical trials. Patients may be looking for a treatment to help prolong their lives after their cancer has not responded to treatment; they may be looking for a treatment that shows promise of less side effects so that they will feel better and have a better quality of life while undergoing treatment; and patients often choose to enter a clinical trial to contribute to research that may lead to a scientific breakthrough that will help other patients.

Patients may be exposed to health risks and drug side effects if they choose to participate in clinical trials. Also, because patients are receiving new treatment under investigation, not all of the potential risks, side effects and benefits are fully known or understood ahead of time.


Suggested Questions to Ask about Clinical Trials

1. What is the purpose of the study?

2. What kinds of tests and treatments does the study involve (what and how are they performed/administered)?

3. What kind of long-term follow-up care is included in the study?

4. How will the study affect my daily life and routine?

5. How far will I have to travel to receive the treatment?

6. How often will I need to go in for the treatment?

7. How long will the study last?

8. What are the possible short and long-term side effects and risks of the treatment?

9. What are the possible benefits of the treatment?

10. Will I need to be hospitalized, and, if so, how often and for how long?

11. In my case, what is likely to happen with or without this new treatment?

12. What might this new treatment do and what might the cancer do?

13. If I am harmed as a result of the study, what treatment will I be entitled to?

14. Are there other alternatives to this treatment and what are their advantages and disadvantages?

15. Are there standard treatments for my case and how does the study compare with them?
16. Will I incur any costs or will all of the treatment and follow-up care be free?


Clinical Trials*

Source and Suggested Reading:


1. Choices In Healing -- Integrating the Best of Conventional and Complementary Approaches to Cancer Author: Michael Lerner, Ph.D. (MIT Press, 1994, ISBN#: 0-262-12180-8, 667 pages, $24.95) An objective and comprehensive resource covering mainstream and complementary therapies with emphasis on spiritual, psychological, nutritional and various unconventional treatments. Can be ordered directly from COMMONWEAL @: 415-868-0970.

Additional Suggested Reading:

2. Making Informed Medical Decisions: Where to Look and How to Use What You Find Authors: Nancy Oster, Lucy Thomas and Darol Joseff, M.D. (O’Reilly, 2000, ISBN #: 1-56592-459-2, 365 pages, $17.95)


*Excerpts from Breast Buddy™ Breast Care Program Volunteer Curriculum ©1994 WIN Against Breast Cancer rev. 5/00



Additional Clinical Trials Resources and Information Can Be found right here on this web site at:

http://www.winabc.org/resources3.html#t5


When a Diagnosis of Breast Cancer is Made, What are the Treatment Options?*

Primary and Adjuvant Treatment Options for Breast Cancer

Hormonal Therapy

Because some breast cancers are influenced by the female hormones estrogen and progesterone, estrogen and progesterone receptors should be measured (estrogen receptor assays) in every newly diagnosed breast cancer patient. These tests help predict the risk of recurrence while identifying patients who might benefit from hormonal therapy. Approximately 50% of patients with positive estrogen receptors will respond to some hormonal treatment, while only 10% with negative receptors react favorably. Hormonal therapy may consist of oral administration of drugs such as Tamoxifen (Nolvadex), Megace and Arimidex or by the surgical removal of female hormone secreting glands (e.g., ovaries). Hormonal therapy drugs are designed to change the hormonal environment that many breast cancers need to grow and divide. Hormonal therapy may be used following primary therapy as an adjuvant treatment to decrease the likelihood of cancer recurrence or can be effective by itself in recurrent or metastatic disease.



Tamoxifen (Nolvadex)

Many breast cancer cells require the hormone estrogen to grow and divide. Tamoxifen works by preventing estrogen from joining with and fueling the growth of breast cancer cells. This can block the cancer from growing and delay recurrence. Tamoxifen works most effectively against tumors that are estrogen-receptor positive and particularly dependent upon estrogen. Breast cancer experts believe that tamoxifen prevents estrogen from reaching cancer cells for only as long as patients are taking it. Current recommendations are for the long-term administration of tamoxifen in patients with positive hormone receptors. Clinical trials have shown that patients taking tamoxifen for at least five years have a lower chance of recurrence than patients taking it for shorter periods of time. If a patient has not gone through menopause, her breast cancer treatment may cause menopause to begin. Menopausal changes can be temporary in younger women but are more likely to be permanent in women who are approaching the age of natural menopause (late forties, early fifties). It is still possible to become pregnant while taking tamoxifen. Women taking tamoxifen should not get pregnant -- it has been associated with fetal damage in laboratory animals. Common side effects include hot flashes, vaginal dryness and in premenopausal women, vaginal discharge and irregular menstrual periods. Vaginal lubrication remains the same or increases in some women. Less common side effects include mood changes and occasional stomach upset. Loss of interest in sex and difficulty with orgasm have also been reported by some women who are taking tamoxifen. Its effects on sexual interest and orgasm are usually reversed after it is discontinued.


Sexuality and Breast Cancer*

Many patients worry about how breast cancer treatment will affect their sex lives. It is normal for them to feel this way. Breast cancer treatment can affect sexuality in a number of ways. The way a patient feels about herself and her body and the quality of her relationship can also influence how well she will adjust sexually. Breast cancer can be extremely stressful.

The good news is, with the right information, good support and time, most individuals and couples who care about each other are able to cope well. They often find that fighting breast cancer even enhances their relationships. However, the added stress of breast cancer can be too much for some couples and they may want to consider counseling. (Depending on your health plan, this may not be a covered benefit.)

The Effects of Breast Cancer Treatment

How will chemotherapy affect my sex life?

Patients receiving chemotherapy treatment may notice sexual side effects. Side effects may include loss of interest in sex, trouble reaching orgasm, vaginal tightness and dryness or other signs of menopause. In younger women, these symptoms may not last long, but for some, menopause will be permanent. Menopausal changes are likely to be permanent in women who were approaching natural menopause, anyway. Keep in mind that such changes in sexual response would probably have occurred naturally with age even if you had not had chemotherapy.


Menopause

Menopause is the end of menstruation and ovulation. It occurs naturally in women between the ages of 40 and 55, most commonly in the early 50's. During this time, the levels of the hormones estrogen, progesterone and testosterone slowly decrease. The reduction in these hormones can cause a variety of symptoms, which can vary from woman to woman.

Symptoms of Menopause

Hot flashes (also referred to as " power surges"!).

Mood swings. Mood swings may also be due to mid-life stresses, such as children leaving home or caring for aging parents.

Decreased desire for sex.

Trouble becoming aroused.

Tightening and shortening of the vagina.

Decreased vaginal lubrication.

Trouble reaching orgasm.

Urine leakage.

Forgetfulness, joint pains and trouble concentrating.

Increased risk of osteoporosis and cardiovascular disease. Your physician may be able to prescribe a non-hormonal remedy for some of these symptoms. If you are taking the female hormones estrogen and progesterone (hormone replacement therapy/HRT), tell your physician. Your physician may ask you to stop taking them now.


How will hormonal therapy used to treat breast cancer affect my sex life?

Hormonal therapy (i.e., tamoxifen citrate, toremifene citrate; Tamoxifen, Megace, Arimidex) can, in some women, cause symptoms of menopause. Hot flashes, vaginal changes, changes in weight and depression can occur with hormonal therapy and may affect your sex life. However, many women do not experience these symptoms. In fact, some women report that their vaginal lubrication and flexibility actually increase.

Can the hormone testosterone help women who are having sexual problems?

Testosterone plays a role in sexual response in both men and women. After menopause, a woman’s testosterone level may drop. Testosterone replacement boosts the sexual response in some women with low levels of this hormone. However, women who take testosterone may have an increased risk of heart attack and breast cancer as well as side effects such as facial hair.


Adjusting to Physical Changes from Breast Cancer Treatment


What can I do if I have trouble getting aroused or reaching orgasm?

Here are some tips that might help:

Do the things that get you aroused. Find romantic places. Wear clothing that makes you feel sexy. Go to the movies or read exciting books. Dance alone or with your partner. As you dance, if it feels good, slowly remove your clothing. Try to maintain a sense of humor. Even sharing laughter can be surprisingly erotic!

Create erotic fantasies. Your mind plays a very large part in the process of arousal.

Explore new ways to touch. Sexual pleasure takes many forms. Learning new ways to touch and be touched may be of great value to women who have had breast cancer. This may be especially important to women who have lost both breasts and for women whose breast and nipple sensitivity have been reduced. Try stroking your inner thighs and vulva, your lower abdomen, under your arms and around your missing or altered breast. Ask your partner to kiss and caress these parts of your body. You may be surprised to discover very intense sensations.

Watch (or help) your partner masturbate. This may spark your own feelings of arousal.

Make sure you have sexual stimulation that you will respond to. Your needs may have changed. Let your partner know what feels good to you at this time.

Try hand stimulation of the clitoris instead of, or along with, intercourse. The sensations from direct contact with the clitoris are often stronger than those produced by intercourse. Use a scent-free oil such as Vitamin E or sweet almond oil to reduce friction and enhance sensations. (Such oils can be found at The Body Shop and other similar stores.)

Do Kegel exercises.

Squeeze and release the muscles used in Kegel exercises during intercourse or masturbation to heighten sexual pleasure.

Remember that as you get older, you may need to allow more time for vaginal lubrication and orgasm or for erection and ejaculation in male partners. Vaginal lubricants such as Astroglide, Replens, etc. can help.

Recognize that medications can affect sexual desire, arousal and orgasm. Medications that can depress your sex life include those used to treat depression, anxiety, pain, nausea, blood pressure and heart conditions. Diuretics and antihistamines can also have sexual side effects. If you are having problems with your sex life, ask your physician if the medication(s) you are taking have any sexual side effects. There may be medications with fewer side effects that you can try.

Cut out or limit your intake of alcohol. Sexual arousal and orgasm are harder to achieve when you have been drinking. Alcohol has also been associated with increased risk of breast cancer.

Do not use street drugs. They can have dangerous and unpredictable side effects.


What can I do if I have trouble getting aroused or reaching orgasm?

Kegel Exercises

Kegel exercises strengthen the muscles that help you tighten and relax your vagina. Many women report that practicing these exercises regularly has helped them sexually by enhancing feelings of arousal, improving vaginal lubrication and strengthening their orgasms. To find the muscles you will be exercising (pubococcygeus or "PC" muscles on the floor of the pelvis), stop your flow of urine midstream and then start it again. (This is not an exercise; this is a way for you to identify the muscles that you need to exercise.) If you are pulling in your stomach or tightening your buttocks, you are using the wrong muscles.

Kegel exercises can be done at anytime. There are as easy as "one, two, three:"

1) Squeeze the PC muscles for 5 seconds, then release for 10 seconds.

2) Repeat this exercise 10 times each time you do it. This equals 1 set.

3) Do 5 sets of this exercise each day.

Note: Having a regular schedule, such as doing 1 set of Kegel exercises immediately after you urinate, can make them easier to remember.


What can I do if I have trouble with vaginal tightness and dryness?

Do Kegel exercises every day (see above). Kegel exercises teach you to relax the muscles that surround your vagina. This can make penetration and intercourse more comfortable. These exercises can also increase vaginal lubrication.

Use a vaginal moisturizer such as Replens or K-Y Long Lasting (every two or three days) or Vitamin E oil or cream (once or twice a day). This will help relieve vaginal dryness and increase comfort. Apply such products deep inside the vagina. Note: Vaginal moisturizers are for use in between the times you have intercourse, not during it.

Consider masturbation, if you are comfortable with it. Masturbation increases vaginal lubrication. Use a mild oil like sweet almond oil or Vitamin E oil or cream, if you like. (Such oils can be found at The Body Shop or in other similar stores.)

Use a vaginal lubricant and have intercourse as soon as you are comfortable after surgery. Have intercourse at least once a week to keep your vagina flexible. If you cannot have intercourse, insert a lubricated finger or vaginal dilator.

Use water-soluble lubricants, such as Astroglide or K-Y Liquid, when you have intercourse. Lubricate both the penis and the vagina well. With the applicator or finger, apply the lubricant deep inside the vagina, as well as at the opening. Note: Do not use Vaseline. Vaseline can damage latex condoms. It can also lead to vaginal infections by trapping bacteria.

Try the woman-on-top position so you can control how fast and how far the penis goes in.

Ask your physician about hormonal remedies for vaginal tightness and dryness. Estrogen, progesterone and testosterone pills or creams are options for some women with severe problems. Most physicians are very cautious about using these therapies in women with breast cancer, but will discuss the benefits and risks of these options with you.


Sexuality and Breast Cancer Recommended Reading and Resources*



The WIN Against Breast Cancer Resource Guide, Women's Information Network (WIN) Against Breast Cancer Dedicated to helping breast cancer patients and their families by promoting patient education, outreach and support. Provides rapid access to comprehensive up-to-date information (English and Spanish materials available) regarding breast health and breast cancer, treatment options and other resources. Provides a comprehensive Breast Cancer Resource Guide and other informational booklets and videos free of charge through its Breast Aid Program©, and patient-to-patient support via its Breast Buddy Breast Care Program©. The WIN ABC Speakers Bureau offers qualified professionals for community events, seminars and advisory panels. Telephone: (626) 332-2255 or (619) 284-4900; Web site: www.winabc.org; E-mail: winabc@keyway.net.

Be a Survivor™ -- Your Guide to Breast Cancer Treatment* Author: Vladimir Lange, M.D., Lange Productions, (Lange Productions, 1998; ISBN: 0-9663610-0-8; 154 pages; $24.95) A complete, accurate and sensitive book that includes the combined wisdom of over twenty leading medical experts and stories from patients who have "been there before" provides a revealing perspective. Also available with Video and CD-ROM format. Can be ordered by calling Lange Productions at 1-888-LANGE-88. *Contains section(s) on sexuality. Also available in a revised Spanish Edition entitled Confie en el Manana.


Menopause

Dr. Susan Love’s Hormone Book -- Making Informed Choices About Menopause Author: Susan Love, M.D. with Karen Lindsey (Times Books, 1998; ISBN: 0-8129-6392; 375 pages, $15.00) Discusses the pros and cons of hormone replacement therapy, alternatives, symptoms of menopause, coping with symptoms and other related health concerns.

Estrogen the Natural Way Author: Nina Shandler Villard Books, 1997; ISBN: 0-375-75141-6; 300 pages, $14.95) Contains over 250 recipes to reduce the risk of breast cancer, benefit bones to protect against osteoporosis, lower cholesterol and alleviate symptoms of menopause.

Menopause Naturally -- Preparing for the Second Half of Life Author: Sadja Greenwood, M.D. (Volcano Press 1992; ISBN: 0-912078-95-2; 213 pages, $13.95) Discusses the menopausal years; hormones and physiology; hot flashes and how to live with them; how to keep your bones strong and more.

Menopause Without Medicine Third Edition Author: Linda Ojeda, Ph.D. (Hunter House, 1995; ISBN: 0-89793-177-7; 334 pages, $13.95/paperback; $23.95/hard cover) Discusses natural approaches to menopause with research on breast cancer; risk factors, the importance of a healthy diet, how to stabilize your mood, osteoporosis and suggested resources.

The Pause Author: Barbach, Lonnie Garfield. (New York: Plume 1995) Well-documented information on all aspects of menopause. Contains an excellent section on sexuality, as well as one for male partners.


*Excerpts from Breast Buddy™ Breast Care Program Volunteer Curriculum ©1994 WIN Against Breast Cancer rev. 5/00


I hope that you find this information of interest and helpful.


My warmest regards,
Betsy



Elizabeth ("Betsy") Mullen
Founder, President/CEO
WIN Against Breast Cancer
Main Office:
536 S. Second Avenue, Suite K
Covina, California 91723
Telephone: 626-332-2255 Fax: 626-332-2585
San Diego Office:
Telephone: (619) 284-4900 Fax: (619) 284-7900

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