Sexuality

NHL and the treatments used for it today may affect male and female sexual development, libido, fertility, and the success of pregnancy. For some of us, sexuality, fertility, and pregnancy take a back seat during the cancer experience, but for others, these are very emotional issues--almost as emotionally charged as cancer itself.

Be sure to bring sexuality and fertility issues to your oncologist's attention if he does not mention them, especially if you or your partner are at the high end of the childbearing years. Avoid having your doctor ' s assumptions about your age, family planning, or sexuality place your fertility and sexual function at risk.

Because of the possibly deleterious effects of treatment on fertility, you should consider harvesting sperm or ova for future use if you are facing chemotherapy or radiotherapy for NHL. Even those who believe they will never want children should consider taking the precaution of preparing for future fertility needs. A diagnosis of cancer can cause profound changes in outlook for most survivors, and your perspective on becoming a parent may well change after spending some time facing survival issues and weathering successful treatment. Exceptions exist, of course. For example, those who have already raised a family may feel that harvesting sperm or ova is unnecessary.

An educated opinion

Each of the cancer support groups I facilitate has its trademark characteristics, but one of the most wrenching is the one for young adults, ages 18 to 30. The reason is the issue of fertility, since bone marrow transplants and other aggressive chemotherapy regimens can cause both infertility and impotence.

Men and women, either entering or in their childbearing years, often face the side effect of infertility as they enter treatment for life-threatening illness. In my own case, as a teen with cancer, I was more concerned about my hair falling out and possible infertility than about survival. Foolhardy? Depends on your priorities. Many women define themselves by their ability to bear children and by their role as mother. To take that away threatens the core of their life, and in many cases brings the young women to the question, "Would I rather have children than live long?"

Men face similar but underrated challenges. My best friend, Michael, underwent a bone marrow transplant in the early stages of his life with NHL. The consummate Olympic shot put athlete and Harvard lawyer, he prided himself on his masculinity, expressed as head of household, father, and provider. The doctors outlined the usual side effects of chemotherapy and transplantation, but nobody mentioned impotence. Post-transplant, the most heart-wrenching call I received from Michael came at 2 A.M., when he finally had to talk about it.

"Nobody told me!" he shouted. "They never said I couldn't make love with my wife. I'm not sure I'd have done the damn thing if I had known I'd never make love again!" More important than whether he'd have gone ahead is the fact that the doctors chuckled at his outrage. "We saved your life, and you're upset about THIS?"

The situation isn't hopeless. One can endure aggressive treatment and often still bear children. I live with heart damage and experienced two high-risk pregnancies, but I later gave birth to two beautiful daughters, twelve years post-treatment. After our second was born, as a preventive measure I had a tubal ligation. Nonetheless, I am the proud mother of yet another daughter, whom we adopted at birth. The keys to this and other such self-conscious issues of survivorship:

HOPE. Never say die, just keep going until you know all the options.

ASK QUESTIONS! Ask your doctor about infertility. Can you store eggs or sperm for later use? Is there a chance of losing your fertility? If so, is treatment necessary now, or can you have a baby first? Don't let a fear of death inhibit the questions that might offer you a reason to live!

SUPPORT. Fellow survivors can offer incredibly valuable suggestions, in personal groups, or via the Internet, and nine times out of ten you will find your way to the best help there is, armed with all the necessary questions.

Finally, there are other ways of parenting children. Adoption is a wonderful alternative, as are the various ways one can now save eggs and sperm for later implantation. The saddest experience is one where the young adult accepts that fate has dealt a childless hand, when there are so many options and so much valuable support available.

Sexuality

Many good medical solutions are available today for those who suffer neurological or other physical impairments from cancer treatment. Various therapies are available, for instance, to sustain erection and to relieve vaginal pain. If sexual hormones are out of balance, sexual pleasure and satisfaction may improve with hormone replacement therapy. In addition, an extraordinary array of medications and devices is available to help those with sexual side effects from cancer or its therapy.

As a survivor, you need to be aware, however, that separating the psychological effects of disease from the physiological effects of treatment may be difficult or impossible. Moreover, it's important to bear in mind that most sources of support for sexuality after cancer deal with all cancers, and that subtle neuropathologic problems may remain after specific neurotoxic therapies for NHL, such as vincristine or cisplatin, problems perhaps undetectable using the equipment available today. Consequently, your efforts to find help may have to target multiple resources. For example, your libido may suffer when treatment-related chronic fatigue or chemically induced depression are present.

Purely emotional perceptions and misconceptions regarding sexual drive and satisfaction are always a possibility, of course, but they may be compounded by frank physical damage causing dry ejaculation, impaired valve function that causes ejaculation of semen backward into the bladder, difficulty maintaining an erection, vaginal and vulvar pain during intercourse, vaginal ulcers, and surgical sites that ache or are numb for up to a year after surgery. This means that, should you decide to seek help only from a sexuality counselor, it's possible for physical difficulties to be misdiagnosed as psychological problems. Medical history is full of such errors, such as the "Fakers' Disease" of the nineteenth century, which we recognize today as the autoimmune disorder multiple sclerosis. In short, if you're convinced that your problems have a physical basis that outweighs any psychological component, avoid those who attempt to label you as emotionally ill and seek help elsewhere.

Several sources of information are available to you in dealing with decreased or unsatisfactory sexuality after cancer treatment:

• Your family doctor or oncologist

• Counselors who specialize in issues of sexuality

• Support groups

• Various books

Each is discussed below.

Your doctor can be a source of basic information regarding how cancer and treatments are affecting you physically and how those physical changes are impacting your sexuality. Your doctor might not be able to address all your concerns, though. She might lack knowledge in this specialty; she might have less time than you need for discussion; she may incorrectly interpret what's important to you unless you're very clear when communicating. She might feel uncomfortable discussing sexuality, or she may feel it's "just a psychological problem." She should be able to refer you to counselors, however, who can guide you in separating the physical and psychological components.

Purely psychological discomforts may be more difficult to address, and success in this area may depend on one's access to good counselors. The best choice is a sexuality therapist who is familiar with both the physical and psychological effects of serious illnesses such as cancer. Large urban centers are more likely to have specialists in sexual counseling than rural areas.

Support groups, either those focused on cancer or on the sexual problems following other illnesses, are an excellent way to discover tactics, insights, and clinical information regarding sexual problems after cancer.

An extraordinarily good resource that deals with these issues in a sensitive, fair way is Leslie Schover's 1997 book, Sexuality and Fertility After Cancer. Especially impressive is her sensitivity toward those over age 65, whose sexual needs sometimes are neglected by the medical community. As those over 65 are well aware, people remain sexual beings for their entire lives.

Dr. Schover describes the techniques and technologies available for sustaining erection, reducing vaginal pain, getting pregnant, and many other problems that are all too often borne silently. She discusses sexual adaptation for those minus genitals, breasts, and those living with an ostomy and scarring. Childhood cancer survivors and their unique adaptations are covered. Her discussion of the possible divergence in sexuality caused by cancer is grounded in a thorough introduction to sexual function in the absence of cancer.

A word of caution about Dr. Schover's book is in order: she mentions that young males are less susceptible to radiation-induced sterility than older males. Some studies of the lymphomas have found otherwise.

Although full coverage of sexuality after cancer is not possible in this brief chapter, a few of the points made by Dr. Schover and others are worth mentioning specifically:

• Communicate about sex. Communicate not just during or after attempting sex, at which times emotions are too highly charged, but always. In particular, tell your partner if you're experiencing pain.

• Cuddle, touch, and be affectionate, even if you're temporarily not up to sex as you used to know it. A sexual relationship based on love can be described as one of continual foreplay. Just walking side by side, touching, can be an act of lovemaking.

• If you're a female who has had pelvic irradiation, the scarring of radiation fibrosis can develop over several years. It's important to use the vaginal dilator the doctor recommended or have frequent sexual intercourse to prevent this scarring. Use these techniques three times a week or as your doctor recommends. Not only will sex be less painful, but the gynecologic exams that you must have as follow-up for cancer care will not become more excruciatingly painful over time.

• If you're male, bear in mind that male orgasm without erection and without ejaculating is possible. Moreover, many partners consistently report sexual pleasure that does not require penetration by an erect penis. Good options for achieving an erection, such as medication or hydraulic implants, exist if failure to obtain or maintain an erection continues to be a concern.

• Be patient, expect new sensations, and keep an open mind about new experiences. Sex may be very good after cancer, but it might not be exactly the same as it was before cancer.

• Ask your doctor if the partner being treated should protect the other partner from chemotherapeutic drugs that may persist in sperm or vaginal secretions. The amount of chemotherapeutic agents present in body fluids is likely very low, but it may be best to be careful (radiotherapy poses no similar risk). Wearing a condom or vulvar shield might be recommended.

• Cancer cannot be "caught" during sex, although some viruses that may cause certain cancers can. In addition to HIV, human T-cell lymphotropic virus I (HTLV-I) is transmitted by sexual contact, as is the papilloma virus thought to be linked to most cases of cervical cancer.

• The endorphins released during sexual pleasure reduce pain elsewhere in the body.

A male survivor of NHL/ALL described how frustrating meeting women and dating can be after a cancer diagnosis:

It's very difficult being my age (29) and being an unmarried male cancer survivor. I have difficulty at times just meeting women or strengthening new relationships, as my academic workload requires so much of my attention and energy. I'd like very much to have a serious relationship, to get married and start a family with a woman who either has had cancer or who has had experience adjusting to another serious illness.

Although I would ideally prefer to marry a woman from India, who has been brought up in the same culture, my experience with cancer has made me a member of a community that transcends barriers of race and nationality.

I have met such wonderful people (via Internet discussion lists hem-onc and bmt-talk) from various countries that the meaning of my culture has changed. Today the most important characteristics in my life partner would be her value systems, attitude, and approach to life first, and nationality second.

A female survivor describes how painful intercourse has become because she was never instructed to tone vaginal tissue with a stretching device:

One of the totally preventable side effects of my chemotherapy and pretransplant treatment was the loss of tone in my vaginal tissue at age 38. My body changed so much during chemotherapy that my husband and I were not very active sexually. Then, two months after my chemotherapy stopped, I was admitted into the transplant unit. I was quite ill for months, and for the year after, sex was not even an issue. When I was feeling able to become physically intimate again, there was a great deal of pain. It was not until I saw a physician for this specific problem that I was informed that, during what had resulted in a long period of abstention, I should have been keeping my vagina stretched. It never occurred to me that this could happen, and no doctor had warned me that it might.

In the five years since my transplant and this discovery, I have attempted to stretch the tissue using a series of dilators provided by the hospital. Had I used these dilators during my chemotherapy and recovery from the transplant, I would still be intact.

My husband is very patient and understanding, fortunately, and we love one another deeply. But our intimacy has changed. I have not been able to stretch the tissue much. Intercourse is difficult and unsatisfying. As much as I grieve for myself, I feel even angrier that my husband suffers because of it. This was an important part of our lives. We have lost something precious because of an oversight by my doctors. So much of what transpired could not be helped, and certain indignities cannot be avoided, but this loss, which affects our lives so profoundly, was completely unnecessary.