Fig. 15.1
(a, b) Various techniques to preserve female fertility (used with permission of Massachusetts Medical Society from Jeruss and Woodruff [14])
15.4.3.1 Ovarian Transposition
This technique only prevents damage to the ovaries as a result of pelvic irradiation. Via laparoscopy, the ovaries are transposed outside the radiation field and fixated. In adults, the ovary is successfully protected in 33–92 % of the cases [15]. Ovarian transposition is associated with a risk of about 5 % of benign ovarian cysts, and furthermore, the risk of cancer cells being present in the transposed ovary should be considered [15, 16].
15.4.3.2 Vitrification of Oocytes
After approximately 2 weeks of hormonal stimulation, mature oocytes can be obtained via transvaginal oocyte retrieval with the aim of vitrification. Vitrification is a method in which oocytes are rapidly frozen and stored. After oocyte vitrification, live-birth rates were 5.4 % per vitrified oocyte in subfertile couples [17], with more than 1000 live births being reported worldwide [18–20].
As hormonal stimulation is needed with oocyte vitrification, this technique for fertility preservation is not suitable for prepubertal girls. However, the technique is obviously suitable for patients without a stable partner relationship, since there is no need for a partner present in this technique. Especially in young pubertal girls and adolescents, caution should be taken with the administration of gonadotrophins, as high doses may yield a risk of ovarian hyperstimulation syndrome (OHSS) [21].
15.4.3.3 Cryopreservation of Embryos
For the cryopreservation of embryos, the same steps are taken as for the vitrification of oocytes, namely, ovarian hyperstimulation followed by transvaginal oocyte retrieval. Instead of rapidly freezing the mature oocytes that are obtained, the oocytes are first fertilized. The resulting embryos are frozen and subsequently stored in liquid nitrogen. Both the male and female partner’s permission are required for the (ongoing) storage as well as the use of the cryopreserved embryos [22].
15.4.3.4 Cryopreservation of Ovarian Tissue
After laparoscopic tissue removal of (part of) one ovary, the ovarian cortex fragments could be prepared and cryopreserved. The aim of this procedure is to thaw and autotransplant the cryopreserved fragments to the patient’s abdomen in case of POI and a wish to have a child during cancer survivorship. At the moment, 50 % of the fertilization is spontaneous and the other 50 % needs to take place by in vitro fertilization (IVF) treatment. To date, 37 live births have been reported [23], and the technique is still considered experimental [24]—this, because of safety concerns with regard to the procedure of autotransplantation. In case of cancer survivors, cancer cells could be present in the graft and theoretically induce recurrent malignant disease [25]. Various strategies to reduce or even abandon this risk, including in vitro maturation, the autotransplantation of an artificial ovary, or tumor purging, are currently being investigated [26–31].
In general, one might conclude that there are several fertility preservation techniques that are interesting options for patients to consider. However, success rates, side effects, and possible effects on cancer recurrence are difficult to predict. In addition, even if unambiguous statistics of chances and risks could be provided, it will be difficult for patients as well as for relatives to apply these statistics to their own situation.
15.5 Counseling and Care
15.5.1 How to Counsel Patients?
Obviously, fertility preservation techniques are ideally performed before the start of gonadotoxic cancer treatment—at least from a technical perspective. This means that the oncologist has to raise the issue of fertility shortly after the diagnosis. At that same moment, treatment possibilities have to be discussed, which leaves the patient with the task of making decisions regarding her fertility in a very stressful, emotionally, and cognitively overwhelming period.
Next in this chapter, therefore, the psychological impact of both the cancer diagnosis, the threat of infertility, and specific aspects of counseling in these stressful circumstances will be discussed.
Figure 15.2 presents an algorithm that can be helpful in communicating with patients in the development of a treatment plan in partnership with the patient.
Fig. 15.2
Oncology algorithm for preserving fertility (used with permission of the Livestrong Foundation, Austin, TX, USA, from http://images.livestrong.org/pdfs/livestrong-fertility/LF_OncologyAddressingFertility_Algorithm.pdf. Copyright © Livestrong, a registered trademark of the Livestrong Foundation.)
15.5.2 What Is the Emotional Impact of Impaired Fertility in Cancer Patients?
15.5.2.1 Emotional Roller Coaster
Patients and their families usually feel overwhelmed by the diagnosis of cancer. They have to try to understand the impact of their diagnosis, they have to consider oncological treatment options, and next to that, they have to think about fertility preservation. The message of a cancer diagnosis itself brings patients and their close relatives into a sort of crisis. Everything in their life seems to be out of balance, and they need time to adapt. In this period of crisis, that normally takes a few weeks, cognitive capacity is limited, and emotions are hard to control. Although this can be regarded as “a psychologically healthy reaction to an unhealthy situation,” it makes informed decision-making very difficult. Even under normal, emotionally neutral conditions, considering all the pros and cons of cancer treatment including fertility options in a systematic way is hardly possible, let alone under these circumstances. However, decisions have to be made and usually in the short time frame between diagnosis and the start of the gonadotoxic treatment. This is even more difficult for young patients, who may never have seriously thought about their wish to conceive in the future. The decision they are about to take is irreversible as they are facing gonadotoxic treatment. This situation obliges the oncologist or the specialist in reproductive medicine to reduce overwhelming emotions as much as possible and to guide the patient through the decision-making process. For this kind of shared decision-making, clear and well-structured information is the basis of cancer literacy, followed by a process of nondirective or supportive guidance, also known as counseling. For more detailed practical information on counseling as a process, we refer the reader to Chap. 26 on patient education and counseling. In the framework that follows, a brief summary is given of the steps that have to be taken to help patients come to a reasonable decision under stressful circumstances.
Frame: Five steps toward reasonable decisions:
- 1.
Problem orientation: One has to identify and describe the nature of the problem or decisional dilemma. In this case, Emma has to balance between her short-time interests as a cancer patient and her future interest as a potential mother. These interests exclude each other and all options have negative side effects. This means that Emma is “caught between the devil and the deep blue sea” and has to come up with the least worse scenario.
- 2.
Problem analysis: In order to gain insight into the problem as a whole, one has to collect information about all potential options. If restrictions are relevant, e.g., due to technical or financial limitations, these have to be made clear at this stage.
- 3.
Possible solutions: After a first selection, usually a limited number of options remain to be seriously considered.
- 4.
Evaluation of a selected number of options: In this phase, the pros and cons of every option have to identified and summarized, both in terms preferably on a paper or nowadays in a spreadsheet or via an Internet choice assistance. After identification, each pro and con can be given a certain subjective weight. For example, the need to postpone chemotherapy to be able to start ovarian hyperstimulation usually has a high impact on patients because it may directly harm their treatment perspectives.
- 5.
Choice: Based on all these weighed arguments, the patient has to come to a decision. This decision does not have to be a perfect or even positive one but has to be “the best possible choice” given the circumstances and arguments available.
15.5.3 Which Other Factors Also Play a Role in Decision-Making on Fertility Preservation?
15.5.3.1 The Threat of Death and the Wish for a Child
In this very stressful situation where the patient has to deal with the diagnosis of a life-threatening disease, she also has to consider these delicate issues regarding her future fertility. In this turmoil, important others also could be involved. In young women without a partner relationship, parents could be their most important relatives supporting them in decision-making. The same could be true in young women who have a boyfriend but no stable relationship yet. Parents usually will be more able to focus on the long-term consequences of the cancer and its treatment, and also of the consequences of the threatening infertility. At the same time, they are personally involved because of their concerns for their child as well as the link with their own future grandchildren. As a parent, being involved in decisions regarding the fertility of your child could be very delicate and complicated.
In other cases, the boyfriend could play an important role. In case of a stable relationship, there could be a difference between couples with an actual child wish, with a future child wish, and couples who have not yet decided about or have not discussed their common child wish yet. Treatment options regarding fertility may put a pressure on the relationship that, at the same time, is a very important source of social support during the stressful period around cancer diagnosis and treatment. That could be true as illustrated in the case of Emma.
In counseling these patients, health care professionals have to discuss which significant others should be involved in discussing treatment options regarding fertility preservation.
15.6 Referral to a Specialist
To help a patient make a high-quality fertility preservation decision, patients need to be referred to a gynecologist specialized in reproductive medicine in a center offering fertility preservation options for comprehensive counseling. Various guidelines recommend the referral of young cancer patients for such a consultation irrespective of their age, their prognosis, and their actual child wish [24, 32].
Studies also show that referral to a specialist in reproductive medicine positively impacts on quality of life and on adjustment to the cancer and its treatment. This referral is implemented in several guidelines, such as those from the American Society of Clinical Oncology [33], the guidelines of the American Agency for Healthcare Research and Quality [34], as well as the UK National Institute for Health and Care Excellence (NICE) guidelines [35]. Besides that, even to be able to discuss issues regarding fertility seems to support patients in their adjustment to the cancer.
Nevertheless, referral percentages are still low and a significant proportion of the cancer survivors cannot recall counseling on fertility preservation after cancer diagnosis [36–41]. Disparities in the referral of cancer patients to a specialist in reproductive medicine have been described for sociodemographic factors, ethnicity, and patients’ clinical characteristics [38, 39, 42, 43]. These disparities seem to be related to lack of knowledge about the possibility of threatening fertility. More highly educated patients could have access to knowledge on the possibility of fertility preservation more easily. In addition, in many countries, fertility preservation costs money that will continue to be an expense for many years. Another issue is the difficulties patients experience in actively putting the issue of the fertility preservation on the agenda of consultation. This indicates that it is important for doctors to actively bring fertility preservation into the agenda of the consultation. Reluctance from professionals to raise the issue of fertility preservation could be related to lack of knowledge of treatment possibilities but also with urgency felt regarding the oncological treatment. In addition, clinicians need to be aware of biases in their estimations of the wish for fertility preservation in patients involved. Even patients with a poor prognosis have indicated they feel supported by a discussion about their fertility. Only raising the issue and discussing it with the patient can make sure if a referral to a fertility specialist is warranted.
Case History – Continued
Despite the additional burden of having to decide on even more treatment options, Emma Azure is strangely enough looking forward to meeting the fertility counselor. She feels some sort of hope because thinking about her future fertility makes her realize that there is a life after cancer.
After providing some basic information about the educational process, the fertility counselor starts with asking Emma and Peter some questions. She asks about their ideas about fertility in general and their feelings about making this kind of important decision right now in particular. Then the three of them go through the preservation treatment options one by one. After having given the technical explanation, using several graphical aids, the counselor ends each treatment option with a short summary of pros and cons. She asks Emma and Peter not to decide yet but to discuss all this information together thoroughly and if they want, with family and friends first. However, because of the upcoming treatment, they have to come to a decision in a few days.
In the beginning, Emma and Peter spend most of their time and effort discussing the possibility of cryopreserving embryos, as this is the most established fertility preservation option. However, while discussing this option over and over again, it becomes more and more clear that this will mean that, in case of premature ovarian failure, Emma will no longer have the option to have a biological child if the partner-relationship would crumble, because that would mean that they have to destroy the embryos. At the other end, it is also hard for Emma to decide on postponing her chemotherapy to be able to start ovarian hyperstimulation. She is afraid that it would negatively impact her treatment perspectives. This means that the number of embryos that could be cryopreserved or the number of oocytes that could be vitrified is restricted to the harvest of one treatment cycle.
As a faster alternative, however still experimental, the cryopreservation of ovarian tissue—retrieved via laparoscopy—was discussed. After a few days in which Emma and Peter discuss all options together, Emma opts for ovarian tissue cryopreservation.
15.6.1 What Are the Most Important Medical Pros and Cons of the Current Fertility Preservation Options?
15.6.1.1 Counseling by the Fertility Specialist
During fertility preservation consultation with a specialist in reproductive medicine, patients first need to be informed about their estimated risk of future fertility problems as a result of POI.
Furthermore, the fertility preservation techniques that are considered applicable in a patient’s individual situation should be discussed. These risks and treatment options could be difficult to understand for patients not used to discussing chances and statistics. In addition, future fertility and future child wish are often abstract issues for the future. Providing written information next to what is discussed in the consultation could help patients to rehear information again at home. It also gives them the opportunity to share information with important others. In addition, it compensates for problems remembering information provided during consultations, especially in these stressful circumstances.
Given the nature of the fertility preservation decision, decisional conflict (i.e., difficulties with decision-making) has been described for the fertility preservation decision [44–46]. Decisional conflict is related to uncertainty in choosing options for treatment and possible outcomes. Patients tend to experience more decisional conflict when they feel insufficiently informed, when high-stakes choices are involved with important gains and losses, or when they have to make decisions that could conflict with their personal values. Presumably, decisional conflict is also related to regret about the decision at a later time point, as has even been found in a prospective study with a short follow-up [45]. Regret regarding previous decisions, or lack of opportunity to be involved in decision-making, could hamper the adjustment process to consequences of the disease and its treatment. Risk factors for decisional regret have been shown to be related to patients’ knowledge about the topic and opportunities to ask questions during consultation [44, 45, 47]. This means that being able to discuss fertility preservation options with a doctor supports the adjustment process. This is in line with other studies indicating that shared decision-making, also in situations with high threat, support adjustment to the threat even if it does not change the actual decisions. In this perspective, it is impressive that qualitative studies show that even in patients with a very poor prognosis, discussing fertility preservation options are highly valued by patients and seem to support their feeling of control in a highly uncontrollable situation.
To optimize fertility preservation counseling, various strategies have been proposed. As a patient’s lack of knowledge on fertility preservation has been associated with more decisional conflict, some of these strategies are aimed at improving a patient’s knowledge in order to facilitate the decision-making process. Examples are to provide written information material provided before and/or after consultation [48, 49] and a decision aid [45, 50].
Literature on the best way of counseling in fertility preservation is still scarce. However, websites such as www.oncofertility.org [51] also provide information on counseling issues for health care professionals. In addition, guidelines and the studies that are available, show that addressing the issue of fertility preservation is important, regardless of age, social situation, and prognosis. Still, health care professionals have difficulties in discussing fertility preservation with their patients. The following barriers are described.
15.6.1.2 Knowledge of Doctors
Oncologists indicate not feeling confident in their knowledge about the treatment options for fertility preservation. Education and easy access to inter-colleague consultations could support the provision of actual knowledge of treatment options for different kinds of patients.
15.6.1.3 Confidence in Discussing These Issues with Patients
Clinicians also indicate not feeling confident about discussing fertility, especially with young patients or with patients with a poor prognosis. Training in communication could support clinicians in dealing with these delicate issues in their consultation. Online training courses are available (see, e.g., www.oncofertility.org [51]). In addition, protocols supporting addressing the issue of fertility preservation, together with the discussion of cancer treatment options, could support clinicians in raising the issue. Retrospective studies on patient experiences consistently support a patient’s need to be informed as early as possible, despite their prognosis, their age, and their personal situation.
15.6.1.4 Providing Information
Information has shown to be an important source of gaining control in threatening situations. Websites and decision aids have been highly appreciated by patients. Information could prepare them to ask questions of their doctor, could structure their decisional insecurity, and could help them involve relatives in the decision-making process.
15.6.1.5 Providing Opportunity for Referral
When patients were asked, they preferred the opportunity of a referral to a specialist in reproductive medicine to discuss and support their options regarding fertility preservation [44, 48, 49].
In addition, the opportunity to visit a psychosocial counselor has been suggested [50]. Oncologists’ restricted knowledge about fertility preservation techniques or other reasons of discomfort with discussing fertility preservation may form barriers for discussing the topic with patients or their parents [52, 53]. Especially in case of pediatric patients, the decision-making and informed consent for fertility preservation may be complicated, since the parents carry the major responsibility for the decision whether or not to proceed with fertility preservation [54]. In order to improve referral rates for fertility preservation counseling, some interventions aim to focus on improved counseling by oncological health care providers, as these professionals are the ones to refer a patient for comprehensive counseling as soon as possible after cancer diagnosis. Next to that, seminars and other training events about the topic are organized to provide psycho-education for the oncologists and fertility specialists aimed to improve the consultation with the cancer patient and to reduce discomfort in both professional and patient [36, 55, 56]. Furthermore, the availability of a telephone number for expert advice on fertility preservation, such as initiated by the Oncofertility Consortium, may be helpful.
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