Pink Ribbon Launches Breast Medicine Now Report

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 key findings are:

Ongoing treatments

Continue with screening and treatments as best you can, to minimise or avoid altogether any backlog of cases.
Stopping screening can cause huge dip in patients, and then a subsequent huge influx of urgent suspected referrals, notwithstanding any “worried well”.

Treatment protocols, eg for proton therapy

Treatment is effective if treatment is maintained. If interrupted, then compromised.
Utilise insurance if possible to facilitate treatment.

Global breast policies now

Ongoing development and economic support is needed
Cultural beliefs need to be changed, and communities in certain areas should be “more aggressive” in awareness creation exercises.
A global database needs to be established of patients.

Patient Advocacy:

Jo Taylor from ABC Diagnosis (see infographic) said: “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 also be ignored.”

She said “Covid patients living with covid are counted, and we know how many died from covid. But we still don’t know how many are living with breast cancer. We need data collected to show how many are living with secondary breast cancer.”

Pink Ribbon publishing director Gerard Dugdill asked: “It’s ambitious, but can this take the form of a global database?”

Jo also wants:

speedy access to effective drugs
true personalised care, whether specific radiotherapy, surgeries; and genomic testing
better access to clinical trials, see the problem of access restrictions addressed

Research and diet

Dedicated patient access programmes can work. Sufficient and continuous access to routine genomic testing is needed. Holistic care needs to be considered
On obstacles to trials because of multiple previous treatments, an “adaptive trial design” could allow a protocol to go straight to approval if the drug is “that good”.
Consortia of clinical trial sites can work, where a drug developer enters a streamline, and uses the standard of care comparator arm continually running in the consortium.
Collaboration between biotech, big pharma and academic institutions to accelerate translation of what the academic scientists have discovered is key.
On diet, there have been extensive trials done for breast cancer, also supplement trials, and “not many have yielded any meaningful data that would change practice”.
Introduce any changes gradually. Patients should give themselves permission to challenge a regime.

Terminology

Terminology is important, and can help patients understand their situation.
What was “palliative chemotherapy” can now be split into life prolonging but non-curative chemotherapy, and palliative chemotherapy.
If we change terms from “non-curative” to “palliative” – or “supportive” – chemotherapy, that can also help transition towards palliative or supportive care.
In sum, therefore we have curative, metastatic and palliative/supportive chemotherapy. See also.
Similar arguments can be made 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. Also, “metastasis”, local and distant.

Overall fallout – some questions and thoughts

What happened to the economics and the cases?
There are consequences from calling certain patient or would be patient groups “low priority”, eg, follow up of high risk (gene mutation) patients; psychological support; breast screening; reconstructions; patients with DCIS
Findings: 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, (UK) more than 900,000 fewer women screened in the year to March 2021. “We shouldn’t have changed our approach to treating patients…The people leading us saw covid death, and had no idea of any other death.”
Huge backlogs in diagnoses, reconstructions and revision appointments.
Increased demand but no increased funding.
The voluntary sector were themselves hit, but so many more patients needed information and support because they had no psychological support.
In combination with the voluntary sector, we “must get through this difficult period”.

Other general points were made in delegate chat, see key points report and transcript

The shortage of radiographers need to be addressed
Quote: “The lack of support was devastating. Everything was shut down. Also, no reconstruction was available for two years.”
Better stratification of patients is needed, eg when linking patients with drugs.