Introduction: The Special Status of Breast Cancer in Society

The imaginary of precision oncology could be said to be a cancertreatment so highly efficient that it completely eradicates all traces of the disease without any damage to healthy tissues or processes, and thus causing no side effects. Surgical excision of a tumour, although increasingly precise and limited in extent over the past decades, is nowhere near this. In fact, for most cancer surgery, it is a goal in itself to remove some healthy tissue surrounding the cancer to secure tumour-free margins, to ensure that all cancer cells have been removed from the organ. When this tumour and tissue removal is applied to the female breast, a body part of immense focus in society regarding shape and size, important to sexuality, femininity and body image, the desire to reconstruct the breast is evident. In addition, for some patients, the lacking breast serves as a daily reminder of the cancer and a source of fear of a recurrence. This fear is actually quite rational, breast cancer is infamous for its propensity of late relapses, even decades after apparently successful treatment of the primary tumour. These late relapses are assumedly caused by early dissemination of cancer cells that subsequently enter a state of dormancy at a distant site, and later escape dormancy to produce overt metastatic disease (Phan and Croucher 2020). As of yet, we are not able to reliably detect these dormant cancer cells and have no prognostic biomarkers of neither dormancy nor escape from dormancy (Yadav et al. 2018).

Surgery, maybe apart from the most minimal procedures, has systemic effects in the body. The tissue trauma initiates a cascade of reactions ranging from blood clotting through inflammation, wound healing and tissue remodelling (Shaw and Martin 2016). These systemic biologic effects aim to restore tissue integrity and homeostasis and to protect the body from intruding microorganisms. These are tightly regulated, precise reactions, as can be deducted from the major health problems caused when they are disturbed, such as wound healing deficiencies in diabetes and cardiovascular disease, or over active wound healing resulting in keloid scars (Martin 1997). Cancer has an interesting dual identity: it is a part of our body, many tumour lumps are mainly comprised of normal cells, connective tissue and blood vessels, and even the cancer cells themselves originate from normal cells with the same DNA although with some mutations. At the same time the cancer is an intruder, not adhering to any of the rules regulating cell growth and movement. Even though it has for long periods in history been viewed as such, in our efforts to understand and overcome this disease, we must remember that cancer is not an island. As a part of the organism, the cancer cells can benefit from systemic signalling in the body, for instance the stimulation to grow and move that is necessary to heal a wound (Dillekås and Straume 2019; Antonio et al. 2015; Martins-Green et al. 1994).

In his chapter, I will look at the different roles of the various actors involved, in the context of a priority debate around breast reconstruction after surgery. In order to do so, I will first, in section “A case study of how breast reconstruction was prioritised, and the unintended consequences this had for breast cancer patients and other patient groups”, describe a highly mediatised campaign for increased and faster availability of breast reconstruction for breast cancer patients, and the political decision-making and scientific discussions that followed from that. In section “The actors and their roles in the prioritisation game”, I will outline the roles of the various actors involved, and in section “Debate, decision-making and their consequences”, I will discuss the desirable and non-desirable consequences of the decisions being made, some of which were not foreseen.

A Case Study of How Breast Reconstruction Was Prioritised, and the Unintended Consequences This Had for Breast Cancer Patients and Other Patient Groups

In 2012, the patient association ‘Norwegian Breast Cancer Society’ campaigned for improved access to breast reconstruction. At this time, breast reconstruction after mastectomy for breast cancer was government funded and performed in public hospitals, but waiting times were often several years. The campaign was well orchestrated by the Norwegian Breast Cancer Society, and quite dramatic with women standing outside parliament showing their mastectomy scars. Naturally, media caught on to this and it was on both national television and newspapers with headlines such as “Cancer treatment is not completed until we get our bodies back” (Tv2, 31.05.12). It did not take too long before the minister of health declared an extra grant of 150 million NOK earmarked to breast reconstruction and a directive to plastic surgery departments across the country to prioritise these procedures (Bakke 2012). As numbers of plastic surgeons cannot be increased overnight, some unintended effects were later discovered. Children born with cleft lip and palate are another patient group treated by plastic surgeons, and while the most pressing procedures on infants not able to breast feed were still prioritised, the later corrections, usually performed on teenagers to achieve better facial cosmetic result were not, and waiting times increased (Bordvik 2014). This patient group have an interest organisation that is more focused on advising and supporting patients and their parents than influencing politicians. It is also considerably smaller than the breast cancer society and lacks a professional communication machinery. Into this discussion came a paper published as a part of my thesis, evaluating relapse dynamics after breast reconstruction. Relapse rates after breast reconstruction have been studied previously, with contradictory results. Some have demonstrated increase relapse rates in reconstructed patients and other reduced (Geers et al. 2018; Isern et al. 2011; Svee et al. 2018). These studies, however, suffered from different underlying risk factors in the groups compared and did not explore the time dynamics of relapses. In our study, we discovered a peak in early relapses in the reconstructed patients, the first two years after reconstruction, not present in controls with similar tumour characteristics that choose not to reconstruct the breast (Dillekås et al. 2016). We also found what looked like a dose-response relationship: the more extensive reconstructive procedures resulted in a higher peak of relapses compared to simple implant surgery. Consequently, the question was asked whether the campaign to increase the capacity for reconstructive surgery could have caused an increase in early metastatic relapses. This could, as we explained in the paper, only indirectly be suggested. Still, our results were strongly supported by some and equally refuted by others, as will be discussed further in the discussion section. The Norwegian Breast Cancer Society, when asked the same question, rightly explained that this was not a known hypothesis at the time of the campaign, and immediately demanded another 150 million NOK for research into this possible connection (Bordvik 2016). Decision-makers were, however, not as ready to leap into action this time. Had we or others had a pre-planned study protocol to explore this, ready at that time point, and a media strategy to push political decisions, or even teamed up with the breast cancer society, perhaps we could have utilised the momentum and received similar funding. Current waiting times for reconstruction after breast cancer in Norway span from 12 weeks to 3 years, depending on hospital and type of reconstruction, with longer waiting lists for autologous flap procedures and shorter for simple implant surgery.

The Actors and Their Roles in the Prioritisation Game

The roles of the different actors in this drama are shifting as the situation evolves. The breast cancer patients and their advocacy group play dual roles of both victims suffering from the missing breast that politicians are denying them by not prioritising and funding these procedures sufficiently. In addition, they take on a role as warriors and heroes, battling to change this. The politicians on their side are first labelled the villains as described above. As this is a very unsatisfactory role, they eventually buy themselves the role of the hero, for 150 million NOK, giving the patients what they want and getting praise in the media in return. A couple of years later comes the backlash, and they are again the villains as they are accused of both having caused suffering to young people with birth defects and of having accelerated breast cancerrelapses. Briefly, a small attempt may be said to have been made to label the breast cancer patients the villain, by confronting them with the possibility that their campaign was what spurred the rise in reconstructions, and thus indirectly may have caused earlier relapses. This was rapidly refuted by the simple statement that this potential link was neither known nor suspected at the time.

The journalists sometimes claim that they have a neutral position, merely conveying the message of others, but I must argue that they also take on the role of the hero. They are definitely trying to influence politicians, giving attention to causes they deem good and worthy, like breast reconstruction to cancer treated patients in this case. If we try to imagine a scenario where women were campaigning for aesthetic plastic surgery to be government funded and performed in public hospitals, I cannot imagine the media reporting this in a similar way. With the velocity of the media landscape, issues are presented without understanding of the underlying depth and complexity. As opposed to a true hero, however, the media refuses to take responsibility for the unforeseen consequences of their actions.

In general, plastic breast surgery is an elective form of surgery, in its nature cosmetic, and thus not considered a priority for public funding. Some have even proposed that cosmetic plastic surgery is in opposition to the Hippocratic oath, unethical and should not be performed by any physician (Vogt and Pahle 2018). Naturally, it has been in the interest of patients and surgeons to frame reconstruction after mastectomy for breast cancer as something completely different, an integrated part of the breast cancer treatment rather than an aesthetic procedure. I believe most people would agree that it is indeed something quite different to reconstruct a breast after mastectomy for breast cancer compared to aesthetic breast surgery.

At first, the plastic surgeons had a neutral position, when instructed from the highest political level to prioritise reconstructions, they did. When the problematic side of this was presented, both regarding cleft lip and palate surgery and breast cancer recurrences, the field was divided. Some were genuinely concerned that they had been too eager to perform reconstructions, and, although prematurely as the study was quite small, began changing their clinical practice, advising a larger proportion of women against reconstruction, or at least to take the possibility of a stimulating effect on dormant cancer into account. Others were, perhaps as a reaction to protect their own field of work, deeply sceptical of our findings. Pharmaceutical companies did not get involved in the discussion, neither did manufacturers of breast implants or private plastic surgical clinics. Thus, financial gain did not seem like a driving force in this debate. Although our results were quite convincing, due to the fact that this was a retrospective study no causal relation can be established, and thus everyone can push their own agenda. The complexity of tumour biology as well as systemic responses to tissue trauma and wound healing, not to mention when these are combined, makes the effect even more difficult to determine.

Debates on cancer care almost inevitably become emotional at some time point. The debate was indeed mainly evolving around the emotional and psychological effects on women treated for breast cancer of living with only one breast. The feminist argument of diseases affecting women historically being less prioritised was also used. There is nothing glamourous about cancer but if one cancer form could be said to have some glamourous status, it would probably be breast cancer. The pink ribbon campaign, celebrity survivors and the fact that the disease is not strongly associated with life-style risk factor such as smoking may contribute to make breast cancer considered a “worthy cause” for politicians and philanthropists. As opposed to lung cancer and head and neck cancers where it is perhaps easier to put some blame of the disease on patients’ lifestyle choices.

Norway has a long tradition of systematic work regarding priority settings in the health care sector. The government document “Open and fair - priority setting in the health service” was unanimously approved by parliament in 2014 (Norheim et al. 2014). The underlying principles of good priority setting are stated to be a fair distribution of as many years of good life quality as possible. Distinct criteria for priority setting are applied when making these decisions: health gained from an intervention, health lost without it and resources demanded. The health care priority settings are founded on systematic work with openness and user involvement and comprehensive implementation by efficient means. Even if the 2012 “right to reconstruction”-campaign preceded this document, its precursor was founded on the same principles. For sure, in none of these priority setting documents is it stated that the ones screaming the loudest and with the largest media attention should be prioritised. Ignorance of these forces increases the risk of unknowingly being influenced by them and thus of allocating resources to the most visible instead of where they could give the greatest benefit. The case described here is definitely not the first time these noble principles are forgotten or ignored. Just recently, the Norwegian parliament decided that all women should get free access to early prenatal diagnostic procedures, without any evaluation of the cost or what amount of health could be gained. Further, it seems like the criteria are more readily applied to medical treatment and less when implementing surgical techniques or prioritising between surgical interventions. Perhaps this is a reflection of the difficulty in obtaining the highest levels of scientific evidence through randomized clinical trials for surgical interventions compared to medical substances. Surgical procedures are more difficult to standardize, both due to patients’ factors like anatomical variability and surgeon factors like experience and technical skills.

Debate, Decision-Making and Their Consequences

In this chapter, I have described a real-life case from Norway of how patients’ advocacy groups and media dictated medical prioritisations, and the consequences this had. Even though it is not surprising that politicians yielded to the massive and highly emotional pressure, my argument is that they must explore the consequences of such decisions before making them. This should be done from more angles than the will of patients directly involved, the scientific angle of biological effects and resource reallocation from other patients’ groups would in my opinion be a minimum requirement. To describe a case evolving around surgery, a non-precise form of treatment, and breast reconstruction, an at best only indirect part of oncology, in an anthology on precision oncology may be considered unorthodox. Still, my claim is that is has its place in this book. The precision in our approach to cancer must, in addition to the molecular level traditionally associated with the concept, also be applied to the societal level when we decide what treatment should be available for whom. If we are to be able to make good decisions, we must make the highest effort to explore the broader consequences our decisions may have, for the patient group immediately affected, as well as for those indirectly involved. Where to stop this exploration of consequences quickly becomes a dilemma, should we weigh in the patient’s relatives? Other parts of the health sector, or even other sectors in society? While it undoubtedly would be naïve to presume that we would ever be able to predict all consequences of a political decision, on the healthcare system and society at large, adhering to established criteria for priority settings would seem to be our safest option. There may always be dissatisfaction and an experience of unfairness in groups not getting what they want and feel entitled to, but as long as resources are limited there will always be a need to prioritise. The priority setting criteria in Norway are implemented through democratic processes and should not be ignored. However, as these criteria do not address in detail every situation where prioritisation choices must be made, different agendas and values of what is (most) important will inevitably create debate. As we strive for precision in oncologic treatment, with the noble intention to effectively treat the cancer without negative side effects, we must also keep in mind the inherent complex nature of this disease. The heterogeneity of cancer, with different clones in the same patient at the same time and the capability to change and adapt through a high mutational rate may escape narrowly targeted therapeutic approaches. Indeed, such an imprecise treatment form as surgical excision of the tumour still remains a cornerstone in cancer treatment, with demonstrated benefit on both relapse free and overall survival (Fisher 1985). As a clinician, treating breast cancer patients, I was of course not unaware of the strong emotions surrounding breast reconstructions when I started on the work presented in the paper on recurrence dynamics. Still, my main focus was on the enigma of tumour dormancy and late recurrences, and what could provoke escape from dormancy, with a hope to contribute to preventing metastatic relapse, rather than aiming at influencing health setting priorities. When we first were to present our results, we realized that the finding of a possible connection between surgical procedures of breast reconstruction and accelerated relapses could be both provocative and scary. Certainly, I soon became an actor in in the debate myself, with interviews in national media as well as invitations to present and discus our findings both in the annual meeting of Norwegian Surgical Society and that of the Norwegian Oncology Society. In these fora, questions and feedback were in general coloured by concern for the patients. The uncertainties around the results were acknowledged, and utilised by some to support their own view, but mainly spurred curiosity and discussion regarding the way onward to a potential clinical implementation. A deeper understanding of the systemic biological consequences of this treatment form, and all of the associated physiological reactions, for the biological organism in general and the cancer especially, may direct us to different interventions in the perioperative time window with a greater oncologic impact. However, we have seen in this chapter that the discussions around what to prioritise and when, are much politicized, and values are strongly at play here. Therefore, we should also be careful about thinking that more knowledge will always lead to more straightforward medical and political decision-making processes.