Key Points – Post Lockdown Pink Ribbon Webinar

PINK RIBBON today announces its white paper report following its Breast Medicine Now webinar, post lockdown, held 16 March 2022.

Its key points include a range of suggestions and campaign points to steer the next phase of breast medicine campaigns, with input from a variety of practitioners and patient advocates. The main report can be found here. Please see the key points below and the full transcript here.

MEDICINE AND SCREENING

  • Breast medicine can never be stopped. Treatments can be improved based on co-morbidities and risk.
  • Stopping screening can cause huge dip in patients, and then a subsequent huge influx of urgent suspected referrals. A huge dip can be created in referral targets.
Medicine and Screening - Geraldine Mitchell - Slide 3

Medicine and Screening – Geraldine Mitchell – Slide 3

Medicine and Screening - Geraldine Mitchell - Slide 5

Medicine and Screening – Geraldine Mitchell – Slide 5

MEDICAL CENTER PROTOCOLS (PROTON THERAPY)

  • Treatment is effective if treatment is maintained. If interrupted then compromised.
  • Utilise insurance if possible to facilitate treatment.
  • Can we push through approval at a faster pace, so there is no geographic lottery as to whether this (or any other) treatment is available?

GLOBAL POLICIES FOR BREAST CANCER

  • Breast cancer is a development and economic issue, not just public health. We need support for “poor patients”, where there is no social support system.
  • Cultural beliefs need to be changed, eg concentrate on children and schools. We should be more aggressive in our awareness creation exercises.
  • A global database needs to be established of patients.
  • We need to train survivors as “navigators”.
  • We are ready to do collaborative research.

PATIENT ADVOCACY (ABC Diagnosis)

  • We need improved outcomes. There is a total lack of awareness of secondary breast cancer. Physicians don’t understand it. Patients with primary disease can be ignored.
  • Women don’t know the red flag symptoms. See the infographic created here.
  • We need data collected to show how many are living with secondary breast cancer. (A global register of secondary breast cancer patients would be good).
  • We don’t have true personalised care, for example not everyone has access to specific radiotherapy, surgeries; and genomic testing is not standard for every patient every time they progress with the disease.
  • Speedy access to effective drugs. All the drugs to be available to use them effectively within a toolbox of drugs.
  • We need better access to clinical trials. Clinical trials have many restrictions eg due to the amount of chemotherapy received.
  • We need to speak to everyone, eg national organisations, about drug approvals. Talk to politician, clinicians, researchers, advocates, communities, to raise awareness.

RESEARCH PRACTICALITIES (watch this section here)

  • What we do is always about the patient and only about the patient.
  • Combining research and clinical practice grounds awareness of progress in oncology.
  • We will see further progress in oncology immunotherapies and checkpoint inhibitors. We have seen considerable progress in treatment of both primary and secondary breast cancer overall. Dedicated patient access programmes can work.
  • We must have sufficient and continuous access to routine genomic testing.
  • Progress takes time. Thousands of patients, five to 10 years.
  • We also must talk about holistic care, for all cancer.
  • Look at a disease holistically: mind, body, soul, spirit.
  • On obstacles to trials because of multiple treatments, one way is to do an adaptive trial design which means that you are building a protocol from the get-go that will allow you to even go to approval from that one protocol if the drug is that good.
  • We can also build consortia of clinical trial sites in a certain country or continent and a sponsor (drug developer) will come in with a new drug and they will enter a streamline within that organisation with the new drug, and use the standard of care comparator arm which is continually running through that consortium. See eg the FDA’s Project Optimus.
  • The collaboration between biotech and big pharma and academic institutions to accelerate translation of what the academic scientists have discovered into therapeutic development is an incredibly important avenue that we’re witnessing and following.

Diet and regimes

  • On diet, there have been extensive trials done for breast cancer, supplement trials as well, and not many have yielded any meaningful data that would change practice.
  • If you’re introducing changes do that gradually, the patient can act from within to know what’s best for them. We can have an open dialogue with the patient, and take a holistic approach.
  • Give yourself permission to challenge a regime, eg on anti-emetic drugs

QUESTION OF TERMINOLOGY

  • How we communicate is an important part of what we do. For example, 80% cure rate or 20% risk of recurrence? It depends on the patient. Honesty is important.
  • Chemotherapy has progressed. We have curative chemotherapy. What was “palliative chemotherapy” can now be split into life prolonging but non-curative and palliative chemotherapy. Normally, non-curative chemotherapy is metastatic chemotherapy.
  • If we change from “non-curative” to “palliative” – or “supportive” – chemotherapy, that would also prompt us to transition towards palliative or supportive care.
  • In sum, therefore we have curative, metastatic and palliative/supportive chemotherapy. See also https://metupuk.org.uk/2020/08/supportive-care
  • There is an analogy with radiotherapy, where we use palliative radiotherapy when someone for example someone has a bony metastasis which is painful, but the treatment is not curative.
  • The term “metastasis” can also be concerning. “Metastasis” to distant sites, liver, lung, bone, stage 4 disease, “metastasis” for spread to local lymph nodes. Can we therefore use distant and local?
  • We would need to convince medical professionals to make a change on terminology by utilizing it in papers. Note also “secondary” (contralateral) v “metastatic”.

FALLOUT AND VOLUNTARY SECTOR

  • What happened to the economics and the cases?
  • Low priority groups (see slide) stipulated various “low priority groups”, including and in areas such as: follow up of high risk (gene mutation) patients; psychological support; breast screening stopped; reconstructions with flaps and implants; risk reducing surgery; elderly patients with ER+ breast cancer, patients with DCIS. There are consequences of calling these groups “low priority”.
  • In Croatia, for example, we found a sharp shift in the first lockdown and by the end more and more patients referred.
  • Overall in the UK, (European study 2.40.16) there’s been a 15% reduction of breast cancer cases in this Euro centre during covid.
Effects Of COVID On Breast Cancer - Slide 1

Effects Of COVID On Breast Cancer – Slide 1

  • We had: larger tumour centres with greater numbers of involved lymph nodes; more de novo stage IV disease during COVID; increased patient delay due to fear of transmission and lockdown.
  • According to Breast Cancer Now, more than 900,000 fewer women screened in the year to March 2021. That reduction in screening led to a 39% fall in breast cancer diagnoses in the same year.
  • Covid and breast cancer don’t really interact. Breast cancer patients had less complications and lower mortality than many other groups. But treatment was amended. We shouldn’t have changed our approach to treating patients.

Impact on mortality & fallout

  • The people leading us saw covid death, and had no idea of any other death. “You’ve got to look beyond and above what’s in front of your eyes.”
  • This study from the United States (below) by 2030, 950 excess deaths related to reduced breast screening, 1,314 deaths related to delays in diagnosis of symptomatic cases, 151 deaths related to less use of chemotherapy, A total of 2,487 excess breast cancer deaths, increase of 0.5 %. See also next slide, deaths to 2030.
Impact on mortality and fallout - Slide 1

Impact on mortality and fallout – Slide 1

  • We really got it wrong. According to Macmillan, there are 50,000 missing breast cancer diagnoses (in the UK?).
  • The government must tackle the backlog, and we must ensure this never happens again, and never again be the forgotten “C”. We have a backlog of patients to see, increased wait for clinic appointments, delays getting reporting, scans and pathology, people in labs are off, and many people have left due to stress.
  • Huge backlogs in reconstructions and revision appointments.
  • Increased demand but no increased funding. We haven’t heard anything from the government that’s going to make an improvement. There aren’t enough staff, enough doctors. So many jobs, but we haven’t trained enough people, we haven’t planned.
  • Patients that aren’t privately insured, are going to the private sector to get their lumps diagnosed. When they come back into the NHS system, and that has an impact on NHS patients, who can get bumped further down the line.
  • The voluntary sector were themselves hit, but so many more patients needed information and support because they had no psychological support.
  • See slide on voluntary sector. 39% worse, 45% saying offered decreased services, 56% increased demand (mismatch with increased revenue), about 9% closing down. Quite a few are either no more or have had to make massive changes. Expected impact of covid: moderate, negative impact 53%, significant negative impact 37%.
  • We must get charity/voluntary sector groups funded again. Groups like Breast Cancer Haven and Maggies. Volunteering is a super power. The voluntary sector plays such an incredibly important part, they are filling all the holes in at the moment.
  • The voluntary sector lobbies on behalf of patients to get more money in, we need more lobbying than ever because the system is in real trouble. Charities provide information and advice and work in partnership to provide needs. They fund research, and provide hospice care. In combination with the voluntary sector, we have to get through this difficult period.

GENERAL POINTS FROM AUDIENCE

  • Extracts and supplements can be expensive with no evidence of effect. On cannabinoids, a lot of literature is potentially misleading. Similar considerations might apply to Chinese medicine
  • People who do best have the best balanced diet. Studies don’t show that taking something that’s not normally in your diet to excess, or reducing something in your diet that’s there, improve outcomes.
  • Studies have shown that whether you remove some or all of the lymph glands, it doesn’t make a difference. Doing more radical procedures, has never been shown to improve outcomes. Invisible occult metastatic disease can also be a problem.
  • Different scans are suitable for different people in different circumstances. For example, CT scans might be viewed as best in terms of granularity (amount of detail the can be seen). PET scans, can be useful if the CT or another scan has shown the shadow, and radioactive sugar can be used via a PET scan to see if the lump is cancerous. Radioactive tracers can highlight areas with bone metastases, but this could be due to metastatic breast cancer or bone injury.
  • Scans might also be better when a patient has symptoms

Other general points in chat:

  • Support is need for physical activity, diet, weight, consumption.
  • The shortage of radiographers need to be addressed
  • Other areas of interest:
  • The lack of support was devastating. Everything was shut down. Also, no reconstruction was available for two years.
  • Why can’t we stratify patients better, eg with drugs that target brain metastases, check patients that may have these metastases before with brain MRI?