Young people never imagine that they can become critically ill, as they commonly feel they are invincible. Even for those who have a regular source of medical care, sometimes their diagnosis with cancer can be delayed because they and others (including health care providers) may not take their complaints of aches and pains seriously at first. The whole BMT experience adds another layer of complications as the young people become again very physically and emotionally dependent on parent(s), interrupting the progression to indpendence typcial for their age group. And at the same time, teen and young adult patients also need to learn how to actively participate in their own care, including being involved in making decisions.
Often, young adult patients find that their friends most likely cannot relate to their experiences, and some may become further isolated if former friends cut off contact. Some young people will have supportive friends, but a serious illness can be quite frightening, as it reminds others of their own mortality. The effects of treatment on body image, sexuality, and fertility, as well as education and life planning, are also critical to young people in very different ways than these matters affect children undergoing BMT.
Sexuality and Fertility
Reproductive health is another concern for young adults undergoing BMT. In actuality, the issues concern both sexuality and fertility, although these may sometimes be confused. Because the conditioning regimens for BMT, as well as many standard treatments for cancer, damage rapidly dividing cells in the body, it has long been known that chemotherapy drugs can affect an individual’s ability to reproduce. Both sperm and eggs, and the organs that produce them, may be affected. Sometimes, reproductive function may return after treatment, or develop typically, such as in the case of some younger children who undergo BMT. The results of recently-published research with adults has shown that BMT can affect sexual functioning too, a matter that has received little prior attention and is still rarely discussed by physicians. To date, this issue has not been exclusively studied with BMT survivors who were transplanted as teens or young adults.
Today it may be possible for both male and female patients to be offered fertility-preserving therapies, ranging from traditional sperm banking to various newer surgical and cryogenic procedures for removal and preservation of tissue ,gametes, and embryos. However, it is important to carefully investigate the possibility of such procedures, and to do so early on. Reliable medical advice on the timing of ferttility preservation techniques is crucial. If any will be pursued, it is important that they be done well before any BMT work-up (or possibly any treatment at all) , begins. In some cases, the procedures may not be possible from a medical standpoint. Many times, due to the nature of life-threatening diseases, patients cannot delay the start of treatment.
There are a number of important psychosocial issues that need to be addressed as well, some particularly important for young adults. Young people need to know that they will continue to be sexual beings regardless of their fertility status. They can benefit from frank discussions about the difference between fertility and sexuality. While it is helpful for patients to know that their potential fertility may be able to be preserved, they also need to be able to work through concepts about their own value as a human beings, and about their gender identity, not being solely defined by ability to reproduce. These can be difficult topics to discuss, as destruction of reproductive potential is yet another loss triggered by cancer. It is also a type of loss that may not be recognized in the more immediate struggle for survival. A teen’s developmental stage, and/or popular societal, or personal spiritual beliefs that s/he hold, need to be considered during such conversations. The philosophy of some of today’s medical systems to promote technological methods to solve problems without allowing time for thoughtful reflection on their human impact, can also be factors that need to be addressed.
When parents do not feel not able to easily communicate with their adolescent about sexuality, it can be helpful to enlist the help of a neutral third party, such as an oncology social worker or psychologist. Young adult patients also need accurate information about contraception and all modes of practicing safe sex . This is important not just as a birth control measure, but to protect the patient’s immune system and to protect their partner from possible contact toxicities from treatment drugs.
In addition, it is important to share with patients that some of the assisted reproductive procedures and techniques are still quite experimental, all are expensive (the more complex, the more expensive), and that rarely are they covered by health insurance plans. Also, there continue to be concerns about how fertility clinics may promote and present the success rate of their services to prospective customers, as well as ethical issues concerning those techniques that involve third parties. While preserving fertility should be addressed with patients, a balanced approach is needed. Parents and healthcare providers need to be aware of the thought that needs to go in to the messages given about fertility and fertility preservation. Patients who are unable to arrange for fertilty-preserving procedures for medical or financial reasons, or both, may sometimes end up feeling guilty or less worthy.
For more on the topic of fertility after BMT, the following resources may be helpful:
Centers for Disease Control: Assisted Reproductive Technology Success Rates: National Summary and Fertility Clinic Report
Results of CDC’s annual survey, searchable by state of clinic location
Resolve of Washington State (infertility info, support, and referrals)
Offers information, reources, and support to those dealing with infertility, including decision-making about parenting and medical interventions, referrals to medical providers and counselors.
Offers information on fertility resources for cancer patients; limited small grant program to cover some costs of fertility-preservation procedures. Publishes an annual Cancer & Fertility Resource Guide; free print copy may be requested.
Note: much of the content of the guide consists of advertisements for fertility clinics and related services; the editorial content is primarily written by principals of companies advertised. Therefore we cannot determine the objectivity of the information contained in this publication.
A Matter of Perspective
In conclusion, vital common issues for many, if not most, young adults undergoing BMT that need to be addressed include:
- interpersonal relationships
- planning for ones educational and vocational future
- building independence just when they have to be so dependent on parents for healthcare and survival
- being able to make decisions about one’s own healthcare