Discuss fertility early and fully
|All AYAs with cancer requiring treatment that could compromise future fertility must be informed of the likely risk and options to protect or preserve fertility before treatment begins.||B|
|Health professionals should be guided by institutional policies and protocols, if they exist, on when and how to discuss fertility with newly diagnosed patients, how to discuss procedures that may be investigational and/or costly to patients and their families, and how to make referrals to fertility or other specialists.||PP|
Research shows that the majority of young people diagnosed with cancer are concerned about their future fertility regardless of their age or stage of disease. In many cases, fertility preservation is possible.
All patients who require treatment that could compromise future fertility must be given the opportunity to discuss the effects of the treatment and all available options to protect or preserve fertility with their oncologist and/or a fertility specialist. Where appropriate discussion should include partners and families. Referral to a counselor or psychologist with fertility/oncology experience for further discussion may be recommended.
This discussion should take place before the patient begins treatment whenever possible. If patients are not fully informed or properly referred before treatment begins, opportunities may be missed. (See Options for fertility preservation for further discussion about best timing for preservation processes). There may also be medicolegal implications of not clearly advising patients and family of fertility preservation options (and recording it).
The oncologist and/or fertility specialist should ensure patients are informed about:
- the acute and long term effects of the cancer treatments on their fertility
- the available fertility preservation opportunities, including investigational techniques if appropriate for the patient
- the impact of fertility preservation treatments on the patient’s cancer treatment, any potential damage to their oocytes or sperm and any risks to future offspring 
- the acceptability, and also the potential implications of choosing not to take fertility measures
- if appropriate to the patient, the need for contraception and potential changes to sexuality
- if relevant and possible, potential moral, ethical and legal issues, such as ownership of embryos or reproductive tissue in the event of a patient’s death or incapacity.
Patients who do not receive comprehensible or adequate information have been shown to have a worse quality of life up to four years after their diagnosis.
Health professionals face many ethical issues when discussing fertility with young patients (and their families) including:
- the dilemma of counselling an AYA patient to make decisions about future fertility while they are still coming to terms with their cancer diagnosis and the need for urgent therapy
- whether to delay the start of treatment to allow for preservation options, particularly if they are investigational
- the role prognosis should play in using fertility preservation options.
Health professionals working with AYAs with cancer, particularly younger adolescents, need to consider at each consultation the extent to which the young person is able to participate in decision-making and provide consent or assent. This will depend on the patient’s maturity and understanding of his/her particular situation.
Individual patient factors and concerns
- Ethnicity, religious or cultural beliefs and sexual orientation of young patients must be considered and handled sensitively
Health professionals should be aware that some patients (and/or their parents) have religious beliefs or cultural values that preclude either discussing or allowing assisted reproductive techniques or that preclude masturbation. In some cultures, a person’s status in the afterlife may be culturally dependent on their ability to reproduce.
These factors should not prevent discussions regarding fertility and preservation options, but should be considered in determining how to discuss the issues and implications.
There may be additional challenges in discussing fertility risks and options with patients for whom English is not their first language. Consider involving an interpreter: young people or their family members should not be expected to function as intepreters.
- Acknowledge and discuss patient concerns
It is important for health professionals working with AYAs to acknowledge and discuss any concerns or misunderstandings they have about fertility preservation and related issues.
Concerns and misunderstandings that have been attributed to AYAs under-using fertility preservation methods include:
- being told the risk to their reproductive potential was low
- not understanding or absorbing information pertaining to the risks of infertility because of feeling overwhelmed by their diagnosis and need for treatment
- not wanting to have children at that time, or perceived interest in having children was low with survival issues more of a priority
- feeling extreme stress and anxiety associated with diagnosis of potentially life-threatening disease (meaning fertility becomes a lower priority)
- unwillingness to delay cancer treatments or feeling overwhelmed by the prospects of another procedure
- the cost of fertility preservation options and concern about potential financial burden on parents
- religious or ethical concerns about fertility preservation methods
- being too ill or for other reasons unable to provide a semen sample, even if they wished to do so
- reluctance to discuss with their partner the potential of fertility preservation methods, particularly embryo freezing.
For many young patients, having children is something they have not really thought about.
Involving a parent or family members in these types of discussions may be beneficial.
Patients who wish to pursue preservation options must be promptly referred to a fertility specialist.
AYA patients commonly have acute cancer presentations and there is little time to delay therapy without adverse consequences. There is usually a very brief window of opportunity before treatment begins, in which AYAs need to consider the risks and their options and make a decision about fertility preservation.
In terms of preservation options for males, non-invasive procedures, such as sperm banking by masturbation, should be organised promptly when there is a suspicion of a cancer diagnosis that potentially may lead to gonadotoxic therapy. Waiting for a definitive diagnosis may reduce the likelihood of a successful storage opportunity. There may be significant psychological stress and trauma associated with the process of obtaining sperm, so young men should be offered information, support and the opportunity to provide samples in as stress-free an environment as possible.
For young females further information may be necessary to ensure they understand the complexity of the available fertility preservation treatments for women. Consider referral to an infertility counselor for additional support and further opportunity for discussion.
- Lee SJ, Schover LR, Partridge AH, Patrizio P, Wallace WH, Hagerty K, et al. American Society of Clinical Oncology recommendations on fertility preservation in cancer patients. J Clin Oncol 2006 Jun 20;24(18):2917-31 [Abstract available at http://www.ncbi.nlm.nih.gov/pubmed/16651642].
- Multidisciplinary Working Group convened by the British Fertility Society. A strategy for fertility services for survivors of childhood cancer. Hum Fertil (Camb) 2003 May;6(2):A1-A39 [Abstract available at http://www.ncbi.nlm.nih.gov/pubmed/12869793].
- Schover LR, Brey K, Lichtin A, Lipshultz LI, Jeha S. Knowledge and experience regarding cancer, infertility, and sperm banking in younger male survivors. J Clin Oncol 2002 Apr 1;20(7):1880-9 [Abstract available at http://www.ncbi.nlm.nih.gov/pubmed/11919248].
- Huyghe E, Martinetti P, Sui D, Schover LR. Banking on Fatherhood: pilot studies of a computerized educational tool on sperm banking before cancer treatment. Psychooncology 2009 Sep;18(9):1011-4 [Abstract available at http://www.ncbi.nlm.nih.gov/pubmed/19061198].
- Rosen A, Rodriguez-Wallberg KA, Rosenzweig L. Psychosocial distress in young cancer survivors. Semin Oncol Nurs 2009 Nov;25(4):268-77 [Abstract available at http://www.ncbi.nlm.nih.gov/pubmed/19879433].
- Crawshaw MA, Glaser AW, Hale JP, Sloper P. Male and female experiences of having fertility matters raised alongside a cancer diagnosis during the teenage and young adult years. Eur J Cancer Care (Engl) 2009 Jul;18(4):381-90 [Abstract available at http://www.ncbi.nlm.nih.gov/pubmed/19594609].
- Achille MA, Rosberger Z, Robitaille R, Lebel S, Gouin JP, Bultz BD, et al. Facilitators and obstacles to sperm banking in young men receiving gonadotoxic chemotherapy for cancer: the perspective of survivors and health care professionals. Hum Reprod 2006 Dec;21(12):3206-16 [Abstract available at http://www.ncbi.nlm.nih.gov/pubmed/16887922].
- Quinn GP, Vadaparampil ST, Fertility Preservation Research Group. Fertility preservation and adolescent/young adult cancer patients: physician communication challenges. J Adolesc Health 2009 Apr;44(4):394-400 [Abstract available at http://www.ncbi.nlm.nih.gov/pubmed/19306799].
- Ethics Committee of the American Society for Reproductive Medicine. Fertility preservation and reproduction in cancer patients. Fertil Steril 2005 Jun;83(6):1622-8 [Abstract available at http://www.ncbi.nlm.nih.gov/pubmed/15950628].
- Levine J, Canada A, Stern CJ. Fertility preservation in adolescents and young adults with cancer. J Clin Oncol 2010 Nov 10;28(32):4831-41 [Abstract available at http://www.ncbi.nlm.nih.gov/pubmed/20458029].
- Bleyer A, Barr R, Hayes-Lattin B, Thomas D, Ellis C, Anderson B, et al. The distinctive biology of cancer in adolescents and young adults. Nat Rev Cancer 2008 Apr;8(4):288-98 [Abstract available at http://www.ncbi.nlm.nih.gov/pubmed/18354417].