What path for those with metastatic breast cancer?
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Is there a dedicated pathway for women with metastatic breast cancer in Italy? The reportage “Il Punto” by the scientific journalist starts from this apparently simple question Cynthia Head created for Europa Donna Italia, and which was presented today in Milan. A work that has focused, for now, on 4 representative regions of the North, Center and South: Veneto, Emilia Romagna, Lazio, Puglia. Here, 12 Breast Units were sampled (three per region) and each manager was asked the same six questions on the path and management of metastatic patients:
1. How does the process of taking charge of the metastatic patient work?
2. Is there a multidisciplinary team for the discussion of metastatic cases?
3. Is appropriate pathological characterization of metastatic disease performed?
4. During the consultation, are patients informed about all available trials?
5. Is adequate psychological support provided?
6. Is appropriate pain relief/supportive care provided?
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Pdta tests
The answers reveal the efforts and commitment in structuring a system of taking charge, although not formalized in a real Diagnostic Therapeutic Assistance Pathway (PDTA) dedicated to metastatic breast cancer.
There are gaps, certainly, but also elements of strength. In some of these centres, for example, several multidisciplinary teams are already available (such as that of osteoncology and neuro-oncology) who intervene depending on the site of the metastases; molecular tests are performed at the site of metastasis (via biopsy), so that the therapy is re-evaluated with the pathologist. In one centre, in particular, patients are informed about the possibility of participating in clinical trials also at other centres, a very important aspect.
Furthermore, there are hospitals where psychological and holistic support can be guaranteed with integrated therapies. The problem is that all of this should be put into a system and transformed into a reality – that is, not just on paper – for all women (and men too) who live with metastatic cancer. Which are around 50,000, according to the most recent estimates: a real army.
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“We should define a dedicated Pdta for more flexible metastatic breast cancer, with pathways and professional figures involved, which is specific for the different situations”, is the opinion of Lucia DelMastrofull professor and Clinical Director of Medical Oncology of the San Martino Irccs Polyclinic Hospital of the University of Genoa, part of the scientific Board of the investigation: “It is true that women with this form need multidisciplinary management and on this there are no doubts. But it is time to get to a personalization of the route. There are cases in fact that it is not necessary to bring to the attention of the core team (multidisciplinary, ed.), because there are no critical issues. On the one hand, this would lead to more fluid activity and, on the other, to having more time during the multidisciplinary meetings to devote to those selected cases where the therapeutic decisions are not to be taken only by the oncologist but in concert with professional figures with complementary skills”.
The point of view of the patients
For the investigation, the patients of these same Breast Units (one per centre) were also interviewed – ensuring anonymity. Their requests have almost always been very specific. And also unexpected – as Testa writes – but with a common denominator: time (we report some of them by way of example).
More fluidity in booking exams
“Three months to book a Tac-Pet is too much time, especially if the urgency has been requested. And this means that it is necessary to go elsewhere, even in private structures, or emigrate to another Region, in search of structures more organized. It is therefore essential that there is a case manager who books the tests requested by the oncologist within the Breast Unit, or in related structures, but always with the National Health System”.
A reference oncologist
“They are all competent, of course, but every time you have to start over, with questions that could be avoided if it were always the same reference oncologist. This is to the detriment of the time dedicated to the interview and, if necessary, to the clinical visit. And often, to record the reports in the medical record, the oncologist looks at the computer and does not raise his eyes to look at us. A reference doctor, or a case manager, could also be the solution for support in case of critical issues at home”.
Less bureaucracy in obtaining medicines
“Today there are oncological drugs that can be taken orally, at home. They require a therapeutic plan, and this is not discussed since they are expensive treatments but, and here the problems begin, it is necessary to go to the local or district pharmacy for supplies. With hours of queuing waiting for one’s turn, if it is a pharmacy that provides availability only one day a week. Or the insult of having to return if the drug is not available, to the detriment of the therapy”.
Greater availability of trials
“More and more oncologists, even through personal research, offer the opportunity to participate in clinical studies. But there is a change of gear when it comes to the fourth or fifth line of treatment. Because it is difficult to take advantage of new experimental treatment strategies “, due to a lack of trials for those in this phase. For those who are personally involved and still feel able to live their lives, however, even if with limitations, it is a situation that is difficult to accept and understand”.
A network of non-oncology specialists
“The oncologist recommends losing weight in case of obesity, or being overweight, but there is no figure of the nutritionist who should be of support in this case. And again, if there is a need for specialist visits such as cardiology and gynecology, there is the possibility of having a reservation through a dedicated waiting list. Often, therefore, it is necessary to go elsewhere and resort to private visits due to the too long waiting times with the NHS”.
A confrontation for the most intimate problems
“It is when talking to women that we discover that we have the same ailments: vaginal dryness, pain on penetration, low sexual desire. But it’s not good to find out like this, with whispered confidences. The multi-specialist team should also include the figure of the gynecologist, so that it is possible an interview before starting the therapies most at risk for the intimate sphere and promptly starting the most suitable therapies, including psychological ones if necessary”.
Appropriate menus
“Home-made and sliced bread: this is often the “lunch box” for those waiting to undergo therapy cycles. But in the case of chemo, the gums often bleed, are inflamed, there are canker sores and other difficulties still that row against the possibility of chewing. And cold cuts, the lack of vegetables, the banana as the only fruit with no other possibilities, are not part of the rules of proper nutrition for cancer patients”.
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These requests are echoed by those gathered from a parallel survey carried out by SWG again for “Il Punto”. It involved 19 women followed by 13 Breast Units from 3 other regions (Lombardy, Tuscany and Sicily) and highlighted the common needs in three different areas: the medical (general), the therapeutic and the diagnostic one. “It is necessary to activate continuity of care clinics where women can interface with a health figure trained in this sense – he comments Daniela Terrible, Breast Oncologist Surgeon of the Gemelli Polyclinic in Rome, also on the scientific board – And it is essential that the whole breast approach, but in particular that in the metastatic phase, considers the woman from a holistic point of view. In addition to the complexities given by the metastatic disease, other disorders are added such as those concerning the female sphere, sexuality, gynecological disorders, pain management compatible with daily activities and social life or disorders related to the functional limitation given by the pathology. The assistance must be tailor-made for the woman, and I emphasize the woman, not patient, who must feel that she is immediately in the right hands, that she does not need too many words to explain her suffering because whoever welcomes her knows what she is talking about , but of concrete and dynamic solutions such as the various phases of the path that it has to face”.
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A starting point…
The goal of all this work? That the analysis of best practices and pathways already in place is considered together with the analysis of patient needs. And also together with the criteria for the specific Breast Units for stage IV of the disease that are being defined at European level within Eusoma (the European Society of Breast Cancer Specialists), whose publication is expected shortly. Finally, that the territory – and family doctors – be involved for the continuity of care. All this so that the institutions can be led to define a PDTA dedicated to metastatic breast cancer, uniform throughout Italy. Just as the associations have been asking for for some time.
For more information, see the Il Punto report on the Europa Donna Italia website.
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