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Q&A and Chat: Cancer, Sexual Health, and Fertility
Q&A Forum
Cancer.Net Q&A Forum
Cancer, Sexual Health, and Fertility with Judith Shell, RN, PhD of the Osceola Cancer Center and Oncology Nursing Society, and Lindsay Nohr Beck of Fertile Hope
Questions posted April 1, 2006
Questions posted April 12, 2006
Questions posted April 17, 2006
Questions posted April 24, 2006
Cancer.Net Q&A forums are month-long events on a specific topic. During the month, guests may submit questions to leading cancer experts. Each week, answers are posted on Cancer.Net. Cancer.Net Q&A forums are free of charge, anonymous, and preregistration is not required.
Please keep in mind that Dr. Shell and Ms. Beck are unable to give individual medical advice in this setting, nor are they able to address questions that include information specific to one person's medical profile.
The information presented here is for informational and educational purposes only and is not intended to substitute the professional medical advice or treatment recommendations provided by your doctor.
This forum is neither intended nor appropriate to serve as a means of obtaining a second opinion on cancer diagnosis or treatment. In response to questions about specific drugs, comments will focus only on the state of current research and clinical trials.
It is advised that you do not delay seeking professional medical advice based on any information contained in this Q&A forum.
This forum is governed by all terms and conditions of the Cancer.Net website. Participation in this Q&A forum means that you fully understand and agree to abide by the terms and conditions of the Cancer.Net website.
Judith Shell, PhD, RN, is affiliated with the Osceola Cancer Center in Florida. She has obtained both an Oncology Nursing Certification and Advanced Oncology Nursing Certification. Dr. Shell is also licensed by the State of Florida to practice Marriage and Family Therapy. Deeply committed to spreading information and understanding about cancer and its effects, Dr. Shell has made presentations to various professional and community groups throughout the country. Among the topics she has discussed include: "Alterations in Body Image," "Sexuality Issues and the Person with Cancer," "Reawakening Our Commitment to Caring," "Women and Cancer," "How to Talk to the Person with Cancer," and "Pain Management for the Cancer Patient."
Lindsay Nohr Beck is the Founder and Executive Director of Fertile Hope, a national nonprofit organization providing reproductive information, support, and hope to people with cancer whose medical treatments present the risk of infertility. Ms. Beck founded Fertile Hope in 2001 to address the profound reproductive needs of cancer patients and survivors—a need she discovered after her own experience with recurrent tongue cancer in her early 20s. Since founding Fertile Hope in 2001, Ms. Beck has led a successful campaign to raise awareness of the fertility risks and options involved in cancer treatment. She has appeared in Glamour, the Wall Street Journal, New York Times, CURE magazine, USA Today, Chicago Tribune, Fit Pregnancy, on Good Morning America, and is a frequent guest speaker at fertility and cancer conferences around the world.
SAVE THE DATE: Please join Cancer.Net for a live chat about Cancer, Sexual Health, and Fertility, on Tuesday, April 25, 2006, from 2:00 – 3:00 PM ET. The featured expert is Leslie Schover, PhD, of the M. D. Anderson Cancer Center at The University of Texas.
Questions posted April 1, 2006
Question 1: I am glad this forum is available as I am uncomfortable bringing up issues of sexuality with my doctor. I am a breast cancer survivor, after mastectomy and before reconstruction. I have not been intimate with my husband in several months because I don’t like the way I look. Any advice on how to get past this?
Dr. Shell: Although it is very difficult to accept the changes your body has experienced (you have known your body to look a certain way for many years), time will help you get used to these changes. And, you have reconstruction to look forward to. I do not know if your husband is accepting of these changes; however, if so his support and love will also help you at this sensitive time.
Until you are ready to be intimate without clothing, you may choose to wear fancy underwear or nightgowns. This hides the area but is still sexually exciting. To decrease a direct view of the chest, your partner may wish to try different positions. The New Joy of Sex book by Alex Comfort and the American Cancer Society's book Sexuality and Cancer: For the Woman Who Has Cancer and Her Partner are great resources. Another idea is to use candlelight to decrease the shock of how your body has changed.
Question 2: I am a 36-year-old female with sarcoma. Since beginning my cancer treatments, I have noticed that my interest in sex has declined. Is this common, and how can I get my sex drive back?
Dr. Shell: I do not know if you have experienced surgery for your sarcoma. I am assuming that you are presently taking chemotherapy treatments, and during chemotherapy treatment, many women have little desire for sexual intimacy or intercourse because of increased weakness, fatigue, or nausea and vomiting. Normally, body changes from hair loss can also cause a lack of self-confidence and some embarrassment because all hair is usually lost, including in the pubic area.
During chemotherapy, depending on the doses, type of drug, and number of drugs, the ovaries may be affected. Women may experience irregular or no periods along with vaginal dryness, hot flashes, and decreased sexual desire. Usually these problems are temporary and the ability and desire to be sexually active returns after treatment is finished or in between treatment periods. Also, when blood counts become very low, you can become extra tired and may even get short of breath (caused by low red blood cells), which may also decrease interest in sex. If your platelets are low, there is concern about bleeding, and if white blood cells are low, the possibility of infection increases. If a vaginal yeast infection occurs, there will be itching and burning, especially during intercourse.
Question 3: A few months ago I was fitted with a colostomy bag as a result of colon cancer.Thankfully, I have been able to return to almost all of my activities. The only problem is sex. The bag embarrasses me and my husband can hardly look at it. Any suggestions?
Dr. Shell: Use good personal hygiene; empty your pouch, deodorize it (one or two drops of a liquid deodorizer, such as Banish, is helpful), and make sure it is sealed tightly before intercourse. If the colostomy is "dry" or controlled with irrigation, a small cover or patch may be enough.
If you have an ileostomy that is not well controlled, you can put on a drainable pouch and tuck it into a support belt, turn it sideways, or tape it down so it does not flap in a distracting way. Non-transparent (cloudy/not clear) pouch covers can be used to hide the contents of the pouch. Other choices may be to create covers to match lingerie, or to cover it with a cummerbund (fancy, wide belt), lightweight girdle, or with underwear with an opening up the center. Lingerie and underwear made with pockets on the inside to hold the pouch are also available. Contact OPTIONS at 1-800-736-6555 for more information about their clothing.
To protect from leakage, a rubber sheet may be put under the cotton sheet with a towel put on top. Avoid foods that cause you gas or loose stools six to 12 hours before sexual activity, if possible. If the stoma "speaks out" (eliminates gas), have something ready to say to decrease embarrassment. A good sense of humor is a blessing.
Vaginal lubricants may be helpful to decrease irritation if you have discomfort during intercourse or if you feel a dryness sensation during the day. These products are available without a prescription and are odorless, greaseless, and tasteless. Avoid using Vaseline as it can block the urethra and cause a bladder infection. Flavored lubricants are also available. DO NOT put anything into the stoma except the catheter hose for irrigation, because this can cause a serious tear. The stoma can be stimulated, but objects should not be put inside of it.
Question 4: Is it safe for my partner and me to have intercourse if I am being treated with radiation to the pelvic area?
Dr. Shell: It is safe for both men and women to have intercourse during radiation therapy to the pelvis. If you are having external beam radiation, there is no radioactivity left in the body once the radiation machine is turned off and the treatment is done each day. If you are female, you may have some vaginal discomfort after about eight to 10 treatments, and then it would be best to wait until after radiation treatment is finished. Afterward, you may experience some shrinking of the vaginal tissues and you may need to use a dilator (a device that gently stretches the tissues of the vagina) for a few weeks until you can again tolerate intercourse.
If you are male, you may have some prob1ems with erections and some discomfort and bleeding during ejaculation. This usually lasts until about six to eight weeks after radiation is complete. If there is damage to the veins and arteries or the nerves in the pelvis, you may continue to have erection problems for a longer time, or indefinite1y.
Question 5: Six months ago, I underwent radiation treatments. Since then, I have felt a sharp pain each time I ejaculate. My doctor warned that this might happen for a couple of weeks, but now it has been months. Any suggestions on how to relieve this would be really appreciated.
Dr. Shell: Pain during ejaculation after completion of radiation treatments often can last from six to eight weeks. If the discomfort continues, I urge you to contact your urologist right away. There may be a problem with prostatitis (inflammation of the prostate) and an antibiotic may be appropriate. If damage occurs to the nerves during radiation therapy, this may be a reason for the pain, and it may take a while to subside. There may also be some bleeding and discomfort during ejaculation, and again, this may be due to some tissue damage or damage to the blood vessels around the prostate. I know of no medication that would help except perhaps some ibuprofen (an anti-inflammatory drug, such as Advil and Motrin), which may decrease the discomfort.
Question 6: What sort of sexual side effects can I expect from taking tamoxifen (Nolvadex) for hormonal therapy for breast cancer? I know I may experience vaginal dryness, but what other possible side effects are there?
Dr. Shell: The other possible side effects from tamoxifen can be a vaginal discharge (irritating but usually not itchy), hot flashes, and/or a decreased libido (sex drive). Hot flashes are often not considered a sexual side effect, however in my opinion, if a woman is awakened during the sleep cycle with hot flashes or if one occurs during intercourse/love making, this is a bothersome sexual side effect.
To reduce or eliminate hot flashes, an antidepressant drug, venlafaxine (Effexor), may be helpful. Nonhormonal remedies may also be tried and include black cohosh, soy, and/or vitamin E. Desire can also be an issue, and this is primarily due to a low level of testosterone. While there are no approved methods of replacing testosterone in women in this country, androgens have been used off-label for replacement. Testosterone injections usually provide above normal levels for women and the patch may also supply a dose that is too high. There are studies are underway using a testosterone patch, but the FDA has required more safety data before allowing it onto the commercial market. Talk to your doctor or nurse for more information.
A colleague offers her patients a compounded cream of testosterone propionate 2% in petrolatum after careful assessment. She uses a pea size amount to the skin twice a week or as needed.
Questions posted April 12, 2006
Question 1: As a recently diagnosed breast cancer patient with an estrogen receptor-positive tumor, I would like to know if there any fertility preservation options for women that don't involve hormonal interventions.
Ms. Beck: The difference between breast cancer and other cancers when it comes to fertility is hormones. Some breast cancer tumors are hormone sensitive and therefore thrive or grow when exposed to certain hormones. Because some fertility preservation procedures, assisted reproductive technologies, and even pregnancy affect hormones in the body, they may be of concern for some breast cancer patients.
Hormones are not needed for all infertility treatments, but they are usually needed for embryo freezing and egg freezing. Women with breast cancer may also choose from other types of stimulation that may be safer. There are several ways to obtain mature eggs that may be safer for women with breast cancer. The following methods lessen exposure to the high estrogen levels of standard stimulation, reducing the risk that the hormones will speed up tumor cell growth:
Natural cycle. Just like the name suggests, only eggs that mature naturally during your menstrual cycle are retrieved. Generally, only one egg develops each month, so this method usually results in one egg per cycle. Sometimes, no eggs, or occasionally two eggs, are retrieved. No extra hormones are used for this procedure.
Tamoxifen (Nolvadex) stimulation. Many women use tamoxifen for breast cancer treatment to protect the breast from the effects of estrogen. In different doses, tamoxifen may also be used as an infertility treatment. Tamoxifen stimulates the ovaries, usually causing more than one egg to mature at the same time. Stimulation with tamoxifen usually results in two eggs per cycle. The chance of getting at least one embryo is better than with the natural cycle method.
Another new method uses tamoxifen plus standard hormones. Early results show that more eggs can be retrieved this way. Both methods are still investigational. More study is needed to make sure they are safe and effective.
Aromatase inhibitors. Aromatase inhibitors are drugs that block some of the body's estrogen production. Using aromatase inhibitors with standard stimulation keeps the total estrogen level lower and reduces the risk that the hormones will speed up tumor growth. Doctors have obtained as many 10 to 12 eggs with this procedure. This method is still investigational; however, no increase in cancer recurrence has been noted in preliminary studies. These drugs should not be used during pregnancy. When are used for fertility treatments, these drugs are stopped before the eggs are collected so that the embryos are not exposed to them. They remain in the body for two days and generally are cleared from the circulation within a week.
Ovarian tissue freezing. Ovarian tissue freezing is a procedure where doctors remove one or both ovaries in a one-hour outpatient surgical procedure under anesthesia. No hormone stimulation or medications are required leading up to the surgery. The ovary is divided into strips of tissue, each with hormone-producing cells and immature eggs. The tissue is then frozen and stored for future use.
In vitro maturation (IVM). IVM is when doctors retrieve immature eggs from your ovaries, instead of mature eggs as done with egg and embryo freezing. This means that the standard medications usually used in fertility treatments aren't needed. The immature eggs are then matured in the laboratory, instead of inside your body. Once matured, they can be frozen as eggs or fertilized and frozen as embryos. IVM has been effective with some specific groups of infertility patients, specifically those with polycystic ovarian syndrome (PCOS), but published studies with cancer patients are not yet available, so it is hard to know if those successes transfer to cancer patients. The benefits of this procedure from the perspective of a cancer patient are that it takes less time and fewer medications than egg or embryo freezing. However, in vitro matured eggs have a much lower potential of developing into embryos than the naturally mature ones.
Question 2: Is there a way people with limited finances can access fertility treatments?
Ms. Beck: Many resources are available and include the following:
- Insurance coverage: Currently, 13 states have insurance coverage mandates for infertility. Look into your state's laws as well as your insurance plan.
- Financing options: Many fertility clinics offer their own financing programs for their patients. Similar to a credit card or loan, you can finance the cost of fertility treatments through special programs with special rates specific to this type of medical care.
- Shared risk programs: Many fertility clinics offer their own shared risk programs for their patients. Shared risk means that you will pay a set fee.
- Financial assistance programs: Some nonprofit organizations have financial assistance programs available to help with the cost of fertility preservation and assisted reproductive technologies.
For a complete list of financial resources available, view Fertile Hope's financial assistance information.
Question 3: I am about to start chemotherapy, and my doctor has not discussed fertility preservation options with me. Could you recommend some resources that I could consult before I approach this subject with my doctor?
Ms. Beck: You may want to consult information provided by the following sources:
The American Society of Clinical Oncology (ASCO) will be releasing clinical practice guidelines about cancer-related infertility soon. These guidelines are a great resource to pass along to your oncologist to encourage better discussions with you and future patients. In addition, a corresponding patient guide on fertility preservation will be available on Cancer.Net.
Question 4: How do I find out if the chemotherapy I had for Hodgkin lymphoma when I was 15 affected my fertility?
Ms. Beck: For women: There is no perfect fertility test, but there are ways to better understand your fertility status after treatment. First, resuming menstruation within one year after cancer treatments is a good sign. However, having periods does not guarantee fertility. Second, you may want to have your follicle stimulating hormone (FSH) levels tested. Usually this is done on day two or three of your period by your obstetrician/gynecologist or a reproductive endocrinologist (fertility specialist). If you are not having regular periods, this test can still be performed to determine if you have become menopausal. Third, an ultrasound of your ovaries may be helpful. Many cancer survivors choose to see a reproductive endocrinologist shortly after treatment or when they are ready to start a family. Meeting with a fertility specialist before you start trying may give you a better idea of which options are right for you and help you avoid wasting time and money on options that are not right for you.
For men: You can have your fertility tested by having your sperm analyzed. At a sperm bank or urology office, you can produce a sperm sample that will be tested for the sperm quantity and quality. The results of the test will give you a better idea of what your parenthood options are. For example, if your sperm count is normal, you can try to conceive naturally. Or, if your sperm analysis is less than ideal, you can explore assisted reproductive technologies like intrauterine insemination (IUI), in vitro fertilization (IVF), or testicular sperm extraction (TESE). Generally, it is suggested that you wait six months to one year after cancer treatments end to do a sperm analysis because it may take that long for new sperm production to begin.
Question 5: I have found different timetables for how long should I wait after treatments end before my husband and I try to conceive. Do you have a definitive answer?
Ms. Beck: As you have discovered, there is no definitive answer. Generally, oncologists recommend that you wait two years after treatment to try to conceive. This is based on the fact the most cancers recur within the first two years and they want to make sure you are healthy before approving a pregnancy. However, each patient's timetable may be different. For example, the oncologist may feel more comfortable shortening this time for patients with early stage cancer with high survivorship rates. On the other hand, the oncologist may prefer that a patient wait longer if the patient had a late stage, aggressive cancer. Ask your oncologist what might be safe for you.
Question 6: My 23-year-old son has just been diagnosed with testicular cancer. Do you have any suggestions on steps he should take now (before treatments begin) that may help preserve his ability to father children in the future? Thank you.
Ms. Beck: Sperm banking is a simple, proven way for your son to try to preserve his fertility. Many men have successfully banked sperm before cancer treatments and successfully used it to have children.
There are several sperm banks across the country, including many associated with major hospitals and/or cancer centers, where you can make an appointment to bank your sperm. At the sperm bank, your son will be escorted to a private room to produce a specimen that will be analyzed, frozen, and stored for future use. Some men have found it distracting or embarrassing to have family or friends with them. Your son isn't alone if he feels this way, too. Do what feels comfortable to him—let him go alone or invite someone that won't make an already stressful situation more stressful.
It used to be recommended that he should wait two to three days between each donation; however, new research shows that the quality and quantity of sperm is the same every 24 hours, so he can bank sperm every day. He should not make more than one deposit per day. Even if his sperm count is low, sperm banking may be worthwhile as there are many new reproductive technologies available to help achieve pregnancy. There is a relatively new procedure called intracytoplasmic sperm injection (ICSI) that has been shown to be successful in achieving pregnancy even with use of a very limited amount of sperm.
After he provides the sperm sample, it is frozen and can be stored for many years until he is ready to use it.
If your son is receiving radiation therapy to his pelvic area, he may also want to consider radiation shielding. Radiation shielding is when a doctor places special shields over one or both of the testicles, which will help reduce the risk of damage to your fertility. This option is not perfect as there may be scatter radiation that reaches your testicles and causes damage, and it does not protect from chemotherapy. The success rates of radiation shielding are unknown.
Questions posted April 17, 2006
Question 1: I am 32 years old and a childhood cancer survivor (leukemia). Do you have any information or data on the success rates of women becoming pregnant after childhood cancer treatments? My husband and I have been trying to conceive for eight months and so far have had no luck getting pregnant.
Ms. Beck: There are some data available on the success rates of women becoming pregnant after childhood cancer; however, it is very specific to exact types of treatment (for example, the type, dose, and duration of chemotherapy). Without this information about you, it is impossible to see if there are studies specific to your type of cancer treatment. This is an excellent question to ask your oncologist, as they may be able to pull those studies for you.
Beyond the studies, everyone is unique and it is important for you to understand how your cancer treatments affected your reproductive system. Accordingly, it is recommended that cancer survivors see a reproductive endocrinologist (fertility expert) after six months of trying to conceive. A simple blood test can be conducted on the second or third day of your period (the first day you start bleeding is considered day one) to help gauge your egg reserve. The test would look at your follicle stimulating hormone (FSH) and estrogen levels. An ovarian ultrasound may also be recommended. Together this information will give you a better idea of the current state of your reproductive system and your options for becoming a parent.
Question 2: I have heard of assisted reproductive technology. Can you explain what this is? Thank you.
Ms. Beck: Assisted reproductive technology (ART) is a general term used to describe all fertility treatments. There are many technologies that a reproductive endocrinologist can use to help you achieve pregnancy, and ART is an umbrella term to describe all of them.
Question 3: My wife and I are considering adoption. She had cancer in her 20s and cannot have children. I am worried that adoption agencies may not consider us because of the history of cancer. Have you found this to be true? How can we overcome this?
Ms. Beck: Adoption is an excellent option for anyone who wants to become a parent. Every agency is different, so it is important for you to find an agency that is comfortable working with your wife's medical history. Generally, agencies require that you wait five years after treatment and/or get a letter from your doctor stating that you are in good health. If you are adopting internationally, it is important to understand the cultural or legal requirements of each country that relate to cancer.
Additional options to consider if your wife is infertile because of her cancer treatments are egg and embryo donation (sometimes called embryo adoption). These options allow her to carry a pregnancy and can sometimes be easier for cancer survivors than adoption because they are less regulated.
Question 4: My 11-year-old son is receiving treatment for osteosarcoma. He has not reached puberty yet. What can and should be done now help preserve his ability to have children in the future?
Ms. Beck: It is important to understand the risks associated with your son's treatments, so that you can decide which, if any, fertility preservation options are appropriate for him.
Currently, the only fertility preservation option for prepubescent boys is testicular tissue freezing. Testicular tissue freezing is an outpatient surgical procedure that can be done before cancer treatments start. Pieces of testicular tissue are removed and frozen for future use. The technology shows promise for the future, but is still considered experimental. There have not been any pregnancies to date.
Testicular tissue shielding may also be an option, if your son is undergoing radiation therapy to his pelvic area. External metal shields can be placed over his pelvic region to help protect the testicles from damage. Scatter radiation may cause some damage, but the shields will help decrease the overall dose of radiation to his testicles and, therefore, reduce damage to his fertility.
It is important to know that after your son's treatments, there may be cancer-related effects on the growth and development of his reproductive system. In boys, puberty normally begins between ages 13 and 15. Radiation therapy to your son's testicles or the hormone-producing areas of the brain, such as the pituitary gland, may affect development. Radiation therapy to these areas may interfere with the production of testosterone, which can put your son at risk for early or delayed puberty.
Early puberty can be caused by too much testosterone, which can lead to rapid bone growth and testicular enlargement before the age of 9.Both of these conditions can be treated with medications.
Delayed puberty can be caused by too little testosterone and causes puberty to start much later than normal or not at all. Delayed puberty can be treated with hormone replacement therapy (HRT), which will help your son enter puberty and maintain masculine development once puberty starts.
It is important to watch your son for signs of puberty like facial hair, body hair, and voice changes, so that if you notice they are happening too early or too late, you can report them to his doctor.
Question 5:Does chemotherapy damage sperm?
Ms. Beck: All chemotherapy agents are different. Some damage sperm and others do not. Your age, the type of chemotherapy, and the dose of the drugs can influence your risk. It is important to ask your oncologist if your chemotherapy program will damage your reproductive system.
Question 6: My doctor has told me that there is a risk I will become infertile from my cancer treatments. Not knowing what's in store, my husband and I want to do everything we can to protect my ability to have children during treatment and prepare now in case I do actually become infertile. Any advice you have would be really appreciated!
Ms. Beck: Given that you are married and therefore have the ability to use your partner's sperm, it is generally suggested that you freeze embryos prior to starting your cancer treatments.
Embryo freezing is the most common and successful way to try to preserve your fertility. Embryo freezing requires both eggs and sperm, so it is a good option for women with a husband or partner or women willing to use a sperm donor.
The procedure generally takes two weeks from the onset of your period. The first day of your period is considered Day 1. You will be stimulated with fertility medications for approximately 10 to 12 days to mature multiple eggs, starting on the second or third day of your period. This includes daily, self-administered injections of fertility medications, as well as frequent blood work and ovarian ultrasounds. You may feel bloated, uncomfortable, and/or moody during this time. Some women compare the experience to an exaggerated premenstrual syndrome (PMS). If you have breast cancer, there may be different stimulation protocols for you to consider that do not raise your hormone levels in the same way.
When your eggs are mature, usually after 10 to 12 days of stimulation, doctors will remove them in a quick outpatient surgical procedure. You will be put under a mild form of anesthesia for about 10 to 20 minutes while the procedure is done vaginally with an aspirating needle (there are no incisions or scars after the treatment). Once removed, the eggs will be fertilized in the laboratory with sperm to create embryos. The embryos will reside in lab for three to five days to allow them to develop. The embryos that develop successfully will be frozen for future use. It is important to know that not all of the embryos may develop.
Pregnancy rates using frozen embryos are 5% to 70% per embryo transfer, and anywhere from one to four embryos can be transferred to your uterus. For comparison purposes, the success rates of natural conception between a fertile man and woman are 20% to 25%. Success rates vary based on several factors:
- Age at time of retrieval
- Quantity and quality of eggs retrieved
- Quantity and quality of embryos frozen
- Stage of embryos frozen or used
- Experience and success rate of your reproductive center
The embryos can be frozen indefinitely, and thousands of babies have been born worldwide from embryo freezing.
With regard to protecting your fertility during treatment, a few options may be available for you to consider, depending on the type of cancer treatments you will be receiving.
First, gonadotropin releasing hormone analog (GnRHa) treatment is an experimental option that has been proposed by some for fertility protection during chemotherapy. It is a medication taken by monthly injection (or, in some cases, one injection every three months). The medication causes the ovaries to temporarily shut down during chemotherapy. It is believed that by shutting down the ovaries and putting the body in a temporary pre-pubertal state, there may be a reduction in the damage to the follicles where eggs develop. If chosen as a treatment, it is generally given monthly for as long as you are receiving chemotherapy. The medication is usually given at least a week before initiating cancer treatment so that it can have enough time to work.
Some studies have suggested that GnRHa may be a successful option; however, there is skepticism in the medical community about its effectiveness. Some of the original research conducted was flawed, and new small studies with a control group have not found a benefit. Moreover, some experts believe that because your reserve of immature eggs in your ovaries is not hormone sensitive, so hormonal manipulation like GnRHa cannot protect them against chemotherapy. Research clearly shows that GnRHa does not protect when very high doses of cancer drugs or radiation therapy is used.
Second, if you are receiving radiation therapy to the pelvic area, ovarian transposition may be an option. Ovarian transposition is a minimally invasive surgical procedure in which the ovaries are moved out of the pelvis and moved to the abdomen out of the radiation field. It does not protect from chemotherapy. However, this process may compromise the blood supply to the ovaries. Ovaries may still receive radiation due to scatter in the abdomen. As a result, average success rate is only 50%.
Third, if you are having surgery for a gynecological cancer, there are several fertility sparing surgeries that you may be able to consider. Talk with a gynecologic oncologist about what options might be appropriate for you.
Questions posted April 24, 2006
Question 1: I am 60 and have lung cancer. In the last couple of months, since beginning treatment, it has been difficult for me to get aroused. My doctor says this is not a side effect of my treatments. What else could it be?
Dr. Shell: I don't know if you are male or female, and I don't know if you are receiving radiation therapy, chemotherapy, or both at once. According to the literature, even when given in standard doses, certain types of chemotherapy can cause adverse affects on sperm-forming germ cells, such as azoospermia (low sperm counts) and difficulty with erections.
The sexual response in women (desire, excitement, expanding and lubricating of the vagina, and orgasm) is less well understood. If the anatomy or nerve structure of the clitoris or vagina is affected, or if other debilitation (fatigue) occurs because of cancer treatment, you may lose sexual desire. Painful intercourse may be another factor that can decrease or prevent orgasm. Women also tend to have more concerns about rejection from their partner.
Treatment side effects, such as fatigue, nausea and vomiting, pain and discomfort, and emotional concerns, may affect your sexual interest, ability, and feelings of self-esteem. A decreased or negative body image may result from dramatic weight loss or hair loss.
If you don't feel attractive and desirable because of cancer and its treatment, you may feel that you don't deserve the pleasure of giving and receiving sexual pleasure. However, what often happens instead is that your partner does desire sexual activity but feels guilty about having a sexual interest in you because you are ill. Therefore, what can happen is that both of you may avoid any intimate or sexual contact at a time when you may need it the most. Many patients with cancer report that they continue to enjoy being close, but there is a decrease in the desire for sexual intercourse until they regain strength and begin to feel more "normal." Please give yourself permission to take your time to heal and to simply enjoy a close relationship with your partner or spouse.
Question 2: Right now it is physically uncomfortable for me to have intercourse. Can you suggest some other ways my partner and I can be intimate?
Dr. Shell: Your sexuality is reflected in touching, smelling, hearing, tasting, and visual stimulation and sensations. Use all of these senses when being intimate with your partner.
What may be acceptable sexual expression for some may not be acceptable for you. You may want to read the information from the American Cancer Society about Sexuality & Cancer: For the Man and His Partner, or Sexuality & Cancer: For the Woman and Her Partner.
Alternatives to intercourse can include hugging, holding hands, caressing, kissing, nudity, and cuddling. A warm bath with candlelight, soft music, and wine may help soothe you and your partner and create closeness without the anxiety of performance.
It is also important to recognize when there are no acceptable alternatives for sexual expression in a relationship. Many couples remain intimate with each other simply through good communication and companionship. You may also choose to seek counseling from a therapist.
It is vital for you to understand your disease, the treatment options you have and how these will affect your sexuality and ability to function sexually. Ask many questions of your nurses and doctors. It may help if you ask them to use models or drawings to explain normal anatomy and how your treatment may affect how your body works. It is important to remember that just because one part of how you act sexually may be changed or damaged does not necessarily remove your entire ability to be sexual with your partner.
Question 3: Part of my husband's cancer treatment involved removal of a testicle. Now he says he does not "feel like a man" and has absolutely no desire for sex. He is only 56. How can I help him? I am trying to be supportive, but it is damaging our marriage.
Dr. Shell: Cancer will add a tremendous level of stress that may drain energy and raise questions about adequacy and self-worth. If your husband has the seminoma-type of testicular cancer, his treatment may have included removal of the affected testicle followed by bilateral retroperitoneal lymphadenectomy (removal of a lymph node chain) and radiation therapy. If he had cancer elsewhere in his body, he also may have to have chemotherapy. Some nerves can be damaged when these lymph nodes are removed, and this may result in "dry orgasms" (no sperm present) due to retrograde ejaculation (sperm goes into the bladder).
After orchiectomy (removal of the testicle), concerns with arousal and orgasmic difficulty, a decrease in libido, and embarrassment from the loss of the testicle are normal feelings; therefore, if you understand this, you may be better able to support him and cope with his lack of desire for the present time. If this lack of desire lasts for more than a few months, I would encourage you to seek help from a sex therapist familiar with the needs of cancer patients.
Various treatments (surgery, chemotherapy, and radiation therapy) can be devastating, and the effects of treatment can cause changes in body image even when no outward change in appearance may be obvious. The sense of being masculine may be hindered from pain and antinausea medications and general feelings of fatigue.
One other thought is that for some people, the mere process of being ill may cast doubt on their sexual identity and response, which in turn will reflect on their sense of adequacy. Because of the seriousness of their illness, patients with cancer are often too embarrassed to raise questions about their sexual concerns. They may feel that worrying about such a relatively unimportant matter as sex is unjustified.
Holding, touching, caressing, kissing, and other expressions of affection are all important behaviors to keep in mind; your husband can be encouraged to focus on his positive attributes and on the methods of expression that remain available to you as a couple during recovery.
An excellent resource for the cancer patient and his partner is written by Leslie Schover, PhD, (2001) and published by the American Cancer Society.
Question 4: A social worker at the cancer center where I am seen suggested that my wife and I see a sexual therapist. What should we look for regarding the therapist's background, training, etc. What will likely happen during the sessions?
Dr. Shell: You should look for a therapist with AASECT (American Association of Sex Educators, Counselors, Therapists) credentials and/or a marriage and family therapist with experience with people with cancer. Many large cancer centers have these types of therapists.
You can also go online to www.TherapistLocator.net to see if there are any marriage and family therapists in your area. The Oncology Nursing Society is also a good resource for cancer nurse practitioners in your area with this type of expertise.
A session is typically around an hour, and in the first session, the therapist will do an assessment to find out what your particular concerns happen to be. In subsequent sessions, there may be homework assignments and dialogue between you, your partner, and the therapist.
It is ok, if you find someone you think might be appropriate for the two of you, to interview him or her with the thought in mind of exactly what you would like to accomplish. Depending on what your issue is and how severe it is affecting your relationship, you may need between six and eight sessions.
Question 5: I am a 63-year-old breast cancer survivor. I am fortunate to be cancer-free and to have a wonderful husband who is caring and patient. For most of our marriage, we had a good sex life. Now, however, I do not find pleasure in sex. I miss the enjoyment of sex, something I used to take for granted, and would like to find a way to get that back. Is this a problem associated with age, cancer treatment, or a combination of both?
Dr. Shell: Women in general have problems with low sexual desire during cancer treatment. Older women who have undergone menopause already may have discovered some normal changes, such as a general slowing and a decrease in the intensity of the sexual response cycle. However, because of hormone replacement therapy (HRT), these women have been able to continue to experience normal sexual libido.
Even more than estrogen, androgens (testosterone) are a stimulant for desire in women. When cancer treatments such as chemotherapy create a hormone-deficient condition, along with hot flashes and poor vaginal lubrication, women often experience decreased sexual desire. You may also experience desire issues if you suffer from fatigue, from the cancer itself, or from the anemia associated with cancer treatments. If you experience depression, you may have problems with low sexual desire. If you are on hormone therapy, you may experience a decrease in your ability to have an orgasm and/or it may be less intense.
If you experience hot flashes, talk with your doctor about nonhormonal alternatives or antidepressants.
Many women who experience painful intercourse use a lubricant or moisturizers. Talk with your doctor or nurse for suggestions. Avoid the use of petroleum jelly, as this may obstruct the urethra (opening to the bladder).
Positive and realistic expectations are important in maintaining a healthy sexual relationship. Don't compare your sexuality at age 63 with your sexuality at age 23. Focus on quality and pleasure, not quantity and performance.
Question 6: Are there times during cancer treatment when it is not safe to have sex?
Dr. Shell: Yes, there are times during cancer treatment when it is not safe to have sexual intercourse. Primarily, your safety has to do with low blood counts. When blood counts become very low, you may become extra tired and even short of breath (caused by low red blood cells), which (understandably) decreases interest in sex. If your platelets are low (< 20,000), there is concern about bleeding, and if white blood cells are low (< 1000), the possibility of infection increases.
Women being treated with radiation therapy for gynecological cancer may have vaginal discomfort after about two weeks of radiation therapy. Women may continue to have intercourse during treatment, unless it becomes too uncomfortable. Intercourse can be resumed when the vaginal area is healed. Semen can cause vaginal burning when the vagina becomes irritated from radiation therapy; therefore, your partner should try to withdraw before ejaculation or use a condom. Oral sex is also not advisable because you are more prone to infection from oral bacteria until the vagina is healed.
Please check back next week for more answered questions. In addition, feel free to post a question.
More Information
Sexual and Reproductive Health
Sexual Dysfunction, ASCO's curriculum
Last Updated: March 31, 2006
Chat
Cancer, Sexual Health, and Fertility with Leslie Schover, PhD, Chat Transcript
Tuesday, April 25, 2006 2:00 – 3:00 PM ET
Moderator: On behalf of the American Society of Clinical Oncology (ASCO), welcome to the Cancer.Net Ask the ASCO Expert chat on Cancer, Sexual Health, and Fertility, a live question-and-answer session hosted by Leslie Schover, PhD.
During this hour, Dr. Schover will answer as many questions as possible. Due to an increasing number of chat participants and number of questions submitted for each chat event, time simply does not allow us to address all of your questions, and we encourage you to consult your doctor and cancer care team.
Some questions may be adapted so that Dr. Schover's answers can help as many people as possible.
Dr. Schover will take questions from 2:00 - 3:00 PM ET. As you prepare your questions, please keep in mind that Dr. Schover is unable to give individual medical advice in this setting, nor is she able to address questions that include information specific to one person's medical profile.
The information presented here is for informational and educational purposes only and is not intended to substitute the professional medical advice or treatment recommendations provided by your doctor.
This forum is neither intended nor appropriate to serve as a means of obtaining a second opinion on cancer diagnosis or treatment. In response to questions about specific drugs, Dr. Schover's comments will focus only on the state of current research and clinical trials.
It is advised that you do not delay seeking professional medical advice based on any information received during this chat event.
The chat is governed by all terms and conditions of the Cancer.Net website. Participation in this chat event means that you fully understand and agree to abide by the terms and conditions of the Cancer.Net website.
Good afternoon and welcome. Thank you for joining us. Dr. Schover will now begin taking questions.
Leslie Schover, PhD is a professor of behavioral science at M.D. Anderson Cancer Center at the University of Texas.
Her career has focused on the reproductive consequences of cancer treatment, including psychosocial aspects of sexual dysfunction and infertility. She is the author of numerous scientific journal articles, book chapters, and patient education booklets.
Dr. Schover, thank you for taking the time to join us today.
Dr. Schover: I am glad to be here and hope this will provide helpful information.
Guest64: What are the chances of a 40-year-old man being able to have children if he underwent chemotherapy for leukemia at age 17?
Dr. Schover: The results of chemotherapy on a man's fertility are fairly individual, but luckily there is an easy way of finding out his current ability to father children. He can have an analysis of his semen.
The semen analysis tells how many sperm cells are in the sample, their activity, and whether they are shaped normally. The results give a good idea of whether he is likely to start a pregnancy with intercourse, or whether infertility treatment would be needed.
Only about 10% of men have no sperm cells in their semen. Some of them may still have sperm production in the testicle, but a minor surgery would be needed to try to obtain sperm.
Guest20: As a follow-up to the first question, if my husband and I were to have children, would they be at risk for having birth defects from the chemotherapy?
Dr. Schover: Based on the children of cancer survivors that have been studied, there is no evidence of an increased rate of birth defects. Since the number of children is limited, there may be a small increase that has not been detected. The usual rate of birth defects is about 3% and it should not be more than 6% for parents who are survivors.
There is also no evidence that the children have an increased lifetime risk of cancer, unless there is an inherited gene mutation in the family, for example, in some cases of breast or colon cancer.
Jane: I have had surgery, chemotherapy, and internal and external radiation therapy for endometrial cancer. While many sources say that if you were once orgasmic, you can be so again. What about the quality and quantity of orgasms? I find it very hard to climax, and they are weak. The treatment has apparently affected the blood flow to my legs from the external and internal iliac.
Dr. Schover: It is possible that the weaker orgasms relate to damage to the nerves in the sensory system, as a secondary part of the reduced blood flow. However, it is more common that the trouble reaching orgasm relates to having less desire for sex than before, and having a hard time focusing on pleasure during sex. Another issue is medication. Many drugs used to treat pain, nausea, depression, and anxiety can interfere with orgasm, so check that first, since type and dose of drugs can be changed.
Guest149: My sister's husband has prostate cancer. Is it possible for him to pass cancer cells onto her when they have sex? I am so worried for her.
Dr. Schover: That is an excellent question. The answer is NO! Each cell is individual like a snowflake and cancer cells from one person cannot take root and grow in someone else because the genes in the cell do not match. The cancer cell would just die without doing harm.
Guest39: I have always worked hard to look good and was proud of my physical appearance. Since my mastectomy, however, I am having a very difficult time accepting my "new" body. Any suggestions for ways I can cope?
Dr. Schover: Accepting changes in your appearance is a gradual process. First, focus on all the ways in which you still are just as attractive, rather than on the changes that you view as negative. It may help to look at yourself in the mirror and tell yourself at least three things you like about the way you look.
If you have a partner, the partner's expression of love and attraction also can help a lot. Try not to push your partner away, or reject compliments. If you do not have a partner, consider dating again when you feel ready. There is nothing more affirming than feeling that someone new still finds you lovable. You may wish to consider breast reconstruction, but that is a very individual choice.
It also may help to think about the normal changes in a woman's life cycle – aging, pregnancy, weight changes – we are very harsh judges of our attractiveness.
Guest79: I am exhausted from my cancer treatments. I have little energy for daily life, let alone sex. My husband tries to be supportive, but I know he is frustrated. How can I find a way to take care of my husband, my marriage, and myself?
Dr. Schover: That is a very insightful question. You realize that to enjoy sex, rather than to feel like you are "servicing" your husband's needs, you need to feel rested and that you have had time for yourself. This can be tough, especially if you work fulltime and/or still have children living at home. Try to take some special time just to relax and enjoy something for yourself.
It is also important to try to make time for sex when you are least tired–perhaps on a weekend morning or on a day off from work during lunchtime. It also helps to make the room restful, with low lighting, or perhaps to start by taking a shower together or giving each other backrubs so that you have time to relax and feel more aroused. Make sure your partner gives you enough caressing so that you can feel ready for sex.
Guest59: Can you address some of the common misconceptions/myths about cancer and sex?
Dr. Schover: One myth was just mentioned–that cancer is contagious through sex. It is true that some viruses, such as human immunodeficiency virus (HIV) (which causes AIDS) and human papillomavirus (HPV) (which causes genital warts and abnormal pap smears) are transmitted during sex and may promote some types of cancer, but cancer is not contagious.
Another myth is that many couples divorce because one spouse can't cope with the other's cancer. Divorce rates are not higher for couples after one partner's cancer. In fact, about 2/3 of couples say the cancer brought them closer emotionally.
Another myth is that because sex is "dirty" or "bad," having sex would make cancer return. Being sexually active does not increase the risk of a cancer recurrence.
Betty: I have had lung cancer and as a result can't have any strenuous activity because I get too winded. This has basically ruled out sex. What can I do?
Dr. Schover: It sounds like you and your partner need to talk about ways to make love that involve your partner doing more of the "work." You may find you can breathe easier if you are sitting up against some pillows and do not have to move a lot. Also, intercourse is not the only way to make love, and if the movement or weight of a partner's body makes you winded, consider other ways of pleasuring each other such as using different types of caressing to help each other reach orgasm.
mbregenzer: At our cancer treatment facility, we have programs and group supports for sexuality issues, however, many patients are reluctant to talk about or address sexuality issues. Does anyone have any suggestions?
Dr. Schover: Sex is very private, and although a group is normally a great way to get support during and after cancer, I find that people feel more comfortable with sexual counseling in a one-to-one format, or just with their partner and a counselor. We also have trained peer counselors to talk with other survivors who have had similar types of cancer. This often works with patients who are members of minority groups that hold sex especially private.
wisgirl3: What is the most common sexual health complaint among women diagnosed with ovarian cancer?
Dr. Schover: There are really two common sexual problems after ovarian cancer treatment (and they are also the most common after almost any type of cancer treatment). One is feeling a loss of interest in sex and trouble getting excited and feeling pleasure with sexual touch. The second is having pain with sexual touch because of vaginal dryness and tightness.
jerome: Can you please address the issue of erectile dysfunction and cancer?
Dr. Schover: Erectile dysfunction (trouble getting and keeping erections) is the most common sexual problem men report after cancer treatment. The problem is most often caused by physical damage to the nerves that direct blood flow into the penis, or to the small blood vessels themselves. Occasionally, however, anxiety plays a role in the problem. Some men can use the newer pills for erectile dysfunction, like sildenafil (Viagra), vardenafil (Levitra), etc. but after prostate cancer surgery or radiation therapy, for example, pills may not be strong enough to create a firm, reliable erection.
Men often are more reluctant to use an injection in the penis, vacuum pump, or to have surgery to implant a bionic "penile prosthesis" pump, but all of these treatments can be very effective. The partner's agreement is also crucial. Many men try a treatment, but give up if the partner cannot accept it or no longer enjoys sex.
Moderator: Transcripts of today's chat will be available April 25, 2006, on Cancer.Net by 12:00 PM ET. More information about receiving transcripts will be provided at the end of the chat.
kj75: You mentioned cultural issues before. How do you talk about cancer and sexual health if one person doesn't want to address them?
Dr. Schover: In many couples one partner is more open to talking about sex and trying to resolve the problem. Sometimes it helps to find a nurse, social worker, peer counselor, etc., who is the same gender and ethnicity as the shy partner, and can relate to him or her from a culturally sensitive perspective. Sometimes you just have to start with the partner who is willing to change, and try to reach out through that partner to the other one.
Guest224: Is there a way to figure out how fertile you are before cancer treatment? It might make a difference to me. I'm a 29-year-old woman with no kids. Thanks.
Dr. Schover: Most 29 year old women with normal menstrual cycles are fertile, unless you have a special reason to think you are not (like having tried and failed to become pregnant or having a history of pelvic infection or polycystic ovaries). Your gynecologist can draw blood on day three of your menstrual cycle and test a hormone called follicle stimulating hormone (FSH). If it is high, you may be in premature menopause but that would be unusual. Other tests can see if your tubes are blocked, etc., but would not be done unless there was a reason to suspect a problem.
Guest118: My husband underwent treatment for testicular cancer almost two years ago. While his doctor says he should be able to resume sexual activity, his interest in this area has dramatically decreased. When I try to talk to him, he shuts down. What should I do?
Dr. Schover: It is not typical for a man to lose interest in sex after testis cancer, since the remaining testicle usually makes enough testosterone (the male sex hormone) to keep desire normal. However, a minority of men have an abnormal remaining testicle. You could ask your husband's doctor (with your husband's consent) to test his testosterone and make sure he has a normal level in his blood. You could tell your husband that this is an important health issue, not just for sex, but for fatigue, loss of bone strength, etc.
Loss of desire for sex is also a hallmark of depression. Maybe your husband has other symptoms of depression that have not been recognized and need some treatment. Look for changes in sleep patterns (insomnia, waking up at 4 AM, sleeping too much), changes in appetite for food, lethargy, loss of pleasure in life, and angry or depressed mood.
Guest218: I am a childhood cancer survivor, now 28, and have been trying to become pregnant for more than 18 months. I have had no luck. I am pretty depressed about the whole situation. What can I do to improve my outlook and hopefully conceive?
Dr. Schover: You do not mention if you have seen an infertility specialist. At this point, you need an expert to do some tests and see whether your ovaries are producing eggs, and if some type of infertility treatment could help. In many states, insurance does not cover infertility care, but a letter from your oncologist saying the infertility is cancer-related may help. Also, some organizations offer financial help to cancer survivors. Check out the website for Fertile Hope for all kinds of useful information: www.fertilehope.org.
Also, consider adoption (there is a great adoption online group on Yahoo.com called Adoption-after-cancer that provides many resources on how to adopt as a survivor), or even using donated eggs to have a baby. Counseling can also help with the grief of loss, since fertility is a very real loss.
guest123: I underwent cancer treatment and would like to start dating again but am afraid that being a cancer survivor and at risk for a cancer recurrence will scare the opposite sex away. What can I do?
Dr. Schover: If you never get out there and try to meet people, you will certainly never meet a loving partner. Think of it this way–sure some potential mates may reject you out of fear you will become ill again, or concern about fertility or other issues. However, would you reject someone worthwhile for such reasons? Those who are not interested in you because of your cancer history are not the type of dating partners you would like to find!
Margaret: I am 62 years old, a cancer survivor, and a very private person. Who would you suggest I talk to about problems with sexuality?
Dr. Schover: You may wish to start with your gynecologist, oncologist, or an oncology nurse or social worker. However, some of these professionals do not have a clue about how to help with sexual problems after cancer. The best bet is to find a mental health professional who has some knowledge about sex and cancer. Your confidentiality is assured, and you can feel safe discussing your concerns. One problem, however, is that many insurance policies limit your counseling to a "panel of providers." Often none of the people on the panel are expert in this area, so a good place to start is at a cancer center.
Guest50: I have prostate cancer. Where can I find comprehensive information on sex after cancer treatment?
Dr. Schover: Here are some suggestions: On the American Cancer Society's website, they now have their extensive brochure: Sexuality after Cancer: A Guide for the Man with Cancer and His Partner. It addresses many of the issues about prostate cancer. There are several books published on sex after prostate cancer by survivors. Making Love Again by Virginia Laken and her husband is one, and Ralph Alterowicz and his wife wrote another. There are books by urologists too, but all tend to overestimate how often men recover erections, and may give too rosy a picture of couple's satisfaction with treatments they try.
Guest248: I'm single and a breast cancer survivor. I had a double mastectomy as part of my treatment. It's been almost 1.5 years, but I still haven't made peace with my "unfeminine" appearance. How do I warn a potential partner that my body has disfiguring scars? I was never nervous about dating before my cancer, and now my fear of rejection is really beginning to take a toll on my confidence. Is this normal?
Dr. Schover: It is very normal to feel self-conscious about dating after a mastectomy. First it is important for you to feel as good about your body as possible, before you venture out to find a partner. See some of the suggestions above, or look at the American Cancer Society's female booklet on their website. Also, timing is an issue. You may not want to disclose your cancer history on the first date, but you also do not want to wait until you are in the bedroom taking your clothes off with a new love. It is best to feel that someone is a caring friend, and then bring up the topic and discuss it together.
Guest114: Are there support groups available for people who lose fertility?
Dr. Schover: To find a support group for people who lose fertility, I'd start by contacting Fertile Hope, the advocacy group for cancer survivors, either on the web or by phone. Cancer Care in New York also has many online or phone groups on specialized topics (www.cancercare.org). You could also check out the Virtual Wellness Community, or for breast cancer survivors, the Young Survival Coalition.
Moderator: The chat is now ending. Thank you for your thoughtful questions.
We hope this discussion has been valuable, and we regret not being able to answer every question. We want to thank Dr. Schover for lending us her time and expertise.
TRANSCRIPTS: The full text of today's chat will be available on Cancer.Net (www.cancer.net) April 26, 2006, by 12:00 PM ET. To receive a copy of the transcript by e-mail, please send a message to contactus@cancer.net.
SAVE THE DATE: Please join Cancer.Net for a live chat about Caring for a Loved One with Cancer on May 10, 2006, from 2:00 – 3:00 PM ET.
The featured expert is Betty Ferrell, PhD, FAAN, of City of Hope National Medical Center.
The chat room is now closed. Thanks again for joining us.
Last Updated: March 31, 2006
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