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 here and the full transcript below.
Welcome and introduction
Gerard Dugdill, publishing director, Pink Ribbon; hand over to chair: Dr Kathleen Thompson, pharmaceutical physician and author, From Both Ends of the Stethoscope – Getting Through Breast Cancer By A Doctor Who Knows (00:00 – Watch this section of the Webinar).
SURGEON AND DATA FROM LIVERPOOL
Experiences from the Royal Liverpool: screening levels, delays and the “worried well”: some practical advice. Speaker: Geraldine Mitchell, consultant breast surgeon; with perspectives from Cancer Alliance (11:20 – Watch this section of the Webinar).
- We were in a state of shock but life goes on in Liverpool. “We never stopped doing breast medicine”.
- We did in my view better because we did patient treatments specific to the patients based on their co-morbidities and risk, their perceived risk from covid and their type of cancer
- Huge dip in patients after covid was announced. Screening was stopped, patients weren’t coming in, weren’t seeing GPs
- Post covid – huge influx of GP urgent suspected cancer two-week referrals
2019 24,682 referrals
Treatments became more tailored and we did use more neo-adjuvant treatments, neo-adjuvant chemotherapy and neo-adjuvant hormonal blockade, reducing the size of the cancer and ensuring the patient got timely and systemic treatment.
We were very much afraid that we would see patients presenting much, much later and anecdotally we did feel that we are seeing patients with evidence of global metastases at diagnosis, but evidentially that hasn’t been borne out with figures that we did collect. We have seen a reduction in stage 1 and stage 2 because screening was paused, but we haven’t seen a huge increase in stage 3 and 4.
Just prior to Christmas 2020 we had a huge dip into being able to deliver that 14-day target. Slide 4.
Above 96% prior to the pandemic; 30% by the end of 2021 (in the wider area covered)
Screening was paused locally (not nationally), decision taken locally. National non-recurrent funding to help support restoration of 36-month round lengths provided.
Struggle in Liverpool city centre to hit 70% expected target for screening. National shortage of breast radiologists and mammographers, making it quite difficult to clear the backlog (weekend working)
Regional backlog Nov 21 32,000
Local 4,550 so uptake is only 64%
People have been scared so not able to go out, so we have been trying to make people aware
We understand that breast symptom is scary. We have noticed patients have ben immobile we have not known what is happening next, so we have been trying to educate and empower patients to do the right things
Knowing you, looking after you, has been our strapline.
There have been a large number of worried well.
CZECH PROTON THERAPY CENTER PRAGUE
Further international perspectives – Where is the policy headed – EU perspective? Perspectives from a European clinic. Intro to clinic and proton therapy, referrals, current status of treatments in EU, collaboration. Speaker: Vladimír Vondráček, Vlastimil Roun & colleagues, Proton Therapy Clinic, Prague, Czech Republic (33:12 – Watch this section of the Webinar).
The center uses proton therapy for breast cancer (mainly left breast)
Summary points: Breast treated since 2018 (fractionation schemes), various numbers of sessions used, several hundred treated since 2018, clips into marker, surface guided radiation therapy, different screening modalities, eg PET/CT.
Points on covid found:
Treatment is effective if maintained. If treatment is interrupted then compromised
Various measures taken. Protocols at the centre
The centre did not interrupt treatment because interruption creates higher risk (of covid); no contact with other patients etc
The center does treatments in the EU and there is the possibility of insurance. A lot of patients come from UK. Slovakia (country are the most frequent minority, most are Czech)
Question from audience: “Large cancer centre in the UK said research hasn’t been complete yet for breast cancer so was not offered the treatment. What can I do?”
The Center said: It is hard to make comments on particular case, we have to evaluate on an individual basis. It is difficult to say why in principle a site would not offer proton treatment.
AFRICAN SURGEON CAMPAIGNER
The view from Africa: what’s happened, what needs to happen? Speaker: Dr. Mrs Beatrice Wiafe, MD, PhD, President and Founder, Breast Care International; CEO, Peace and Love Hospitals. Ghana, Africa (1:00:30 – Watch this section of the Webinar).
In a country like Ghana, breast cancer is a matter of public health, but also a development and economic issue. Cases identified in 2020: 4,050 cases 2020 deaths – “these cases have loved ones behind them”.
Needs in brief:
- establish a database for breast cancer
- fundraise for patients
- focus on counselling or support, eg husbands run away
- teach to do self exam; “in our setting it is very important”
Fundraising and the media
(at time of webinar). 2019 was the last walk, 43,000 walking for the cure. The media is vibrant in football and politics [Good! says Pink Ribbon].
We need to train survivors as navigators. We have a “hope programme”, adopted by Advanced Breast Cancer Alliance as a tool kit. We also trained young ambassadors to improve quality of life of survivors, “Peace and Love Survivors Association.” Women will know other people have survived the diseases. We have Breast Care International influencers at the Peace and Love Hospital.
Economy, culture, education
Sometimes kids drop out of school if their mums get breast cancer. We need support for poor patients, there is no social support system, we need to get early and support well. See www.bciamerica.org www.breastcareinternational.org
It is very important to change the cultural beliefs of people, but not easy, and takes a generation before some beliefs can be wiped off. We concentrate on children and schools, so people don’t believe breast cancer is caused by witchcraft. Also a lot of older women can’t read or write educational level too low, so people get info from hearsay. Eg we have a bus stop information project.
- We need to act as catalysts for change.
We are ready to do collaborative research. Eg triple negative is one of the more aggressive sub types. If we find early we can manage well.
(Question from audience: We are working with radio station voice of Africa in east London, who have highlighted late presentations).
BA: happy to collaborate. You have old people with co-morbidities, you couldn’t diagnose a the right time, but now we are talking about people in 20s, 30s, 40s, mean age 43, where breast cancer strikes earlier, with more aggressive subtypes, grade 3 tumours and triple negative disease…
- So we should be more aggressive in our awareness creation exercises! Eg people might think where this is no pain, there is no danger! Not true with breast cancer! So everyone must come on board and change the narrative, because women are dying, and leaving young children, because they didn’t come to us early!
Where do things stand, what do we need? Speaker: Jo Taylor, ABC Diagnosis (33:12 – Watch this section of the Webinar).
- In the UK 31 women die every day, 11,500 every year (80 men). We want to survive longer. We need improved outcomes. There is a total lack of awareness of secondary breast cancer. There is no awareness campaign like for primary breast cancer
- GPs don’t understand secondary breast cancer (and patients with primary disease can be ignored due to a lack of understanding).
- Woman don’t know the red flag symptoms. Created an infographic to support awareness and can be shared via GP Gateway C portal (translated into a number of languages). Please see the infographic here.
- We need speedy access to effective drugs. We need to be counted and data collected as there are no figs for those living with secondary breast cancer.
- 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.
- We have restricted treatments lines and we cannot go back on treatments if we progress. We all need all the drugs to be available to use them effectively within a toolbox of drugs
- We need better access to clinical trials. Metup are creating a database to make sure all trials for breast cancer are collected in one document.
- Clinical trials have many restrictions to access and there is limited access to trials due to the amount of chemotherapy patients already have had. If have had numerous can make us ineligible for trials or trial access
I have campaigned for eight years about the lack of data. It was mandatory 15 years ago. Now an NHS audit has been agreed, but this won’t provide data until 2023, tenders will not be agreed until October 2022 and then they will start
We have a two to three-year median life expectancy which means some patients won’t even be alive to see the data results. If no data is collected then we have a lack of support due to:
- no access to funds
- not enough clinical nurse specialists
- no services to support patients
- how do we know what drugs are needed?
- How do we support secondary breast cancer patients with clinical trials?
We need more services like radiotherapy and surgeries. We need more investment to survive longer. If we don’t count patients how do we know if survival is improving? We need to measure outcomes as there are no measures?
“We’ve watched a pandemic unfold, and all the figures and statistics that were produced. 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 just know 31 woman every die, 1,000 a month, 11,500 every year.
“We demand change. Thank you.”
ADDITIONAL POINTS FROM QUESTIONS
Q from Denmark, how do we influence politicians, to upgrade breast cancer packages and precision medicine?
- To do patient advocacy, cover as many bases as you can. Speak to everyone. Talk for example to NICE, about how to submit evidence as group for drug approvals. Metup UK became a charity in 2021.
- Talk to MPs, clinicians, clinical trials researchers, advocates, communities, everyone, to raise that awareness and the issues around secondary breast cancer.
- Previous campaigns include Darker Pink, depicting 31 who die every day, 31 days in October, with QR codes. Want to get this into parliament. Secondary breast cancer is invisible, as highlighted by for example Breast Cancer Now.
- Speak to everybody. Raise your profile. Anybody and everybody you possible can.
- Jo has a book out, in kindle, hard copy, free, very useful, it’s on the ABC Diagnosis website.
Drug markers and trials: towards a more robust system Speaker: Dr Aleksandra Filipovic, Honorary Clinical Research Fellow, Department of Surgery & Cancer, Imperial College, London (01:49:05 – Watch this section of the Webinar).
- What we do is always about the patient and only about the patient.
- Personal note: always combined basic and translational research and clinical practice. Started career with basic and translational research, which has had a natural progression into now doing clinical trials with active clinical patient management practice. Doing both grounds clinical practice with hope and awareness of progress in oncology.
- Witnessed real paradigm shift in oncology with immunotherapies (ipilimumab 2011, anti PD-1 and anti-PD-1 mAbs in 2014-15 and onwards); an explosion of checkpoint inhibitors and the benefits they have brought to many cancer types. So, we are now harnessing our own body’s immune system to deliver anti-cancer care. Before, we could not necessarily harness the immune system back into the treatment of cancer
In relation to checkpoints inhibitors in breast cancer, some progress has been made in relation to triple negative breast cancer. I am confident we are going to see further presence of immunotherapies.
We have seen considerable progress in treatment of both primary and secondary breast cancer overall, based on expression or absence of receptors for oestrogen or HER2. For example, CDK 46 inhibitors for oestrogen receptor positive, used with targeted therapies, or several antibody drug conjugant drugs in the HER2 positive space, most notably and recently a standing ovation at ASCO 2022 for Enhertu results in HER2 low breast cancers, marks a massive step in the right direction. We can now obtain this drug through dedicated patient access programme which wasn’t the case before.
There are various other drugs available as well.
In the triple negative breast cancer space we have recently had an approval as well of an antibody drug conjugate.
There is really a lot going on in the breast cancer space. Not only are we investigating immunotherapies for early and secondary breast cancer we are also investing a lot in new chemotherapies, new targeted agents which can be targeted to genomic drivers of breast cancer. Jo mentioned genomic testing which I fully agree is incredibly important in our routine practice and I also agree we do not have enough access to it for every patient and not enough access on a continuous basis.
So we have got various agents targeting for example PI3K mutations, and an oncogenic pathway that play a significant role in pathogenesis and progression of certain types of breast cancer, and there are other mutations as well that ultimately we be able to address therapeutically.
Combination therapies and PARP inhibitors
Another avenue of great interest in the drug development space is combination therapies and a concept of what we call synthetic lethality, which in a nutshell means combining two drugs that work really well together, while one and the other individually won’t necessarily have great efficacy but when combined they actually converge mechanistically in a way that actually produces clinical benefit.
I have neglected previously to mention another category of drugs which has been serving us beautifully in breast cancer context irrespective of receptor status but relevant to a mutation status which are PARP inhibitors for BRCA1 and/or 2 deleterious mutation carriers. These drugs are overall well tolerated and have excellent efficacy in clinic. So we are really mindful of the genomic landscape and the vast amounts of data that we are collecting, analyzing, interpreting and understanding. This takes time. That is the truth of it. It does take time. It takes thousands and thousands of patients. It takes perspective clinical studies and following outcome based on actions taken. So I do understand how often times, in certain periods of time, we can perceive there is not much going on and then all of a sudden there is a tremendous progress with introduction of novel treatments.
But I really can assure our patients and the community that there are tremendous drug development efforts going on in the background and there is a lot of progress.
I remember 2001 when I was training at Jackson Memorial in Miami. Back then I remember asking the question, what are we going to give patients after tamoxifen? Here we are 21 years later with more drugs that we can even count. As much as we are aware that this is a significant burden for the community at large, for the medical community, for patients, their caregivers, I also want to emphasise this positive note, that we have made a lot of progress, that the results are evident, and there is more to come.
Now I believe there is one aspect that we don’t necessarily talk about too much, but that plays an important not only for breast cancer but for every cancer, and that is holistic care. How can we ensure a patient comes to an oncology appointment and leaves with a little bit more than just a prescription, a blood test and a scan?
There are beautiful conversations being introduced and held in recent years and probably since the pandemic hit and really brought to our awareness about how much looking at a diseases holistically is important, mind, body, soul, spirit, however we want to call it, and I really believe that that becomes an important pillar in the treatment journey of cancer patients who chose to incorporate self-empowered healing into their toolbox of care; and there are beautiful practitioners out there that are offering this type of care as well.
I want to leave us on a positive note, that there’s lots more that can be done but also with a reassurance that the medical profession and the drug development field are really looking into it.
Question on timescales to get the drugs discussed…
For a drug to actually come to market, it can take anywhere between five to 10 years, it really depends on which cancer you are trialling the drug in. Because of the sheer volume and incidence of breast cancer, our trials, especially phase III trials, really require a lot of patients, so it’s not a clinical study that you can run in 200-300 patients and get an approval if the clinical trial hits an endpoint. You really do need probably north of 600 patients and some trials need many many more globally in order to be powered well so the results on the back end of the study actually have meaning and can be translated into clinical approval and clinical practice, so because of that trials can take longer and usually between 5-10 years to approval.
Question on inclusion in clinical trials… thorny issue of those with metabolic [should this be metastatic?]breast cancer in clinical trials, despite having been on multiple therapies. A lot of early trials in particular don’t like patients that are “confusing the results” because of other therapies. Can you see a way round this, do you have any thoughts?
Yes. Looking at innovative clinical trial design strategies, 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. Those are rare cases where you can execute it in that way but it isn’t impossible.
“Organisations and consortia…”
There is also quite a bit going on with organisations (in the US), and I have to be honest I’m not aware of one yet for breast cancer, but I do know there is one such for pancreatic cancer and ovarian cancer where there will be a consortium 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. So it significantly saves time and cost for drug development because you have the standard of care for randomisation, and that is very appealing to sponsors because they save the cost on the standard of care arm. So these are really nice innovative ways in which we are conducting trials.
I’m not aware yet that the same scheme exists as at the European level. It may but I’m just not aware of it yet. But the FDA has recently instituted Project Optimus, their effort to ensure drug development is done as best as possible for the patient benefit so we don’t see doses of drugs pushed too high, and they’re asking us now to investigate, to go into the broad clinical development and into phase III trials with the lowest dose that gives maximum efficacy, so the toxicities can be minimized, and also cost. So there are all these efforts now being implemented and at play which is making it easier to develop drugs and also faster than before.
Question on immunotherapy… You have commented that there has been some work that shows it works in triple negative breast cancer, is there data on other types of cancer at the moment? Has this been looked at, is there a problem?
I wouldn’t say there is a problem. Every cancer is different and immunotherapies have a specific way of action. They need certain immune cell types to be present within the tumour to work, and also the reason why immunotherapy first has been trialled in triple negative breast is because that’s the area of greatest unmet medical need, within the context of breast cancer, because there isn’t a targeted therapy yet. There’s no HER2, there’s no ER, and we don’t have another equally well established receptor or biomarker or a drug target, so that’s why immunotherapy went there first and we have seen some positive data in combination with chemotherapy both in the neo-adjuvant setting (before surgery) and in the secondary breast cancer setting.
There are and there will be more trials with immunotherapy in the ER+ve and in the HER2 +ve setting, most likely in combination with existing therapies. Immunotherapies are by and large very well tolerated and combine really well with other types of treatment, chemotherapy, radiation therapy and in small molecules. So it isn’t the end for immunotherapy in breast cancer by any means, it’s just the beginning. It really is a matter of time and making sure it’s personalised, as was brought up in the previous talk [Jo Taylor]; it really needs to be personalised and that takes time.
“So it isn’t the end for immunotherapy in breast cancer by any means, it’s just the beginning.”
Developing a biomarker and a companion diagnostic which means that you know what you’re targeting with your drug and you know how you’re selecting patients for the drug – that is a huge endeavor, that usually goes unrecognized. It is incredibly costly and it is not not complicated. It’s also reflected in the fact you don’t have many of those at all across tumour types. So – we’re working on it, the community really is working on it! There’s incredible research going on, in academic institutions, in the UK, across the world.
What I’m really encouraged by to see in the previous years is the collaboration happening between biotech industry and big pharma and academic institutions to accelerate translation of what the academic scientists have discovered into therapeutic development and that is I think an incredibly important avenue that we’re witnessing and following.
Question about food trials in cancer therapy…
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.
There are some suggestions for patients for example on some chemotherapy drugs and certain small molecule inhibitors and we tell them to avoid grapefruit for example because it utilizes the same enzyme that the drug we’re giving you will need to get metabolized so we don’t want the two competing.
Everyone will have a different metabolism, so it’s not a one shoe fits all type thing. Often, when there is a breast cancer diagnosis the first thing that the patient will go to change is their dietary regimen. I do fully support that, and I often just like to say that if there is a massive change in the dietary regimen, a massive exclusion of something that was previously present, and equally an introduction of something your body has never seen before, that can sometimes represent more stress on the body than give immediate benefit that one is looking for. If you’re introducing changes then 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.
Question about an old schizophrenia drug as anti-emetic…
Not aware of that. I would ask the patient to look into that in greater detail and perhaps give herself permission to challenge that because we really do have excellent anti-emetic drugs and that particular one is not one that I am aware of us giving as an anti-emetic.
Mini-panel: What does “palliative chemotherapy” mean in the modern era, a trans-Atlantic perspective? Speaker: Alfred Neugut, Myron M Studner professor of cancer research (in medicine) and professor epidemiology at the Columbia University Medical Center with Dr Chris Twelves, Professor of Clinical Cancer Pharmacology and Oncology, Leeds Institute of Medical Research, University of Leeds Hon Consultant Medical Oncologist and Clinical Director, Leeds NIHR Clinical Research Facility, Leeds Teaching Hospitals Trust (02:19:22 – Watch this section of the Webinar).
AN: What’s very important is how we communicate. I think all of us can appreciate that. There’s a lot of money being invested. Besides drug development, it’s very important how physicians and health care workers communicate with their patients.
For example, should we say to patients the risk of your recurrence is 20% or you’ve got 80% cure rate? Which will the patient appreciate more, or react to better, or understand better, when she thinks about how to react or how to be treated or what to do about her tumour or how will it make her feel?
The truth is hundreds of thousands of dollars of research money has been invested by the government in analysing that question. If you’re curious the answer to that research question is – it depends on the patients. Sometimes it’s better one way, at other times it’s better the other. So the truth is communication is an important part of what we do in oncology.
Nomenclature – palliation
That brings me to the next point. Nomenclature – the words that we use – are very important and I would give in this talk two examples with Chris to discuss. The first is the use of the word “palliation”. A new speciality has arisen in the last 20 years. I’ve been an oncologist for 40 years but in the last 20 years palliative care has arisen as a speciality. It’s a wonderful speciality, I love it. It relives me and my colleagues much of the burden of taking care of many of the supportive care issues with my patients in terms of caring for some of the supportive care for them.
One issue is when to refer a patient to palliative care, a patient with metastatic breast cancer (You’ve all been using the term secondary breast cancer, we don’t use that term in America. I’m not even sure what it means listening to the panel use it, I assume it means metastatic breast cancer). But in that regard my colleagues are very reluctant to refer patients to palliative care physicians because patients are reluctant to go them because they think if you’re being referred to a palliative care physician we’ve given up on you, and the truth is, patients are referred very late in the course of their disease, when they’re very near the end, and I think that’s very unfortunate. Part of the reasons for this is the term “palliation” has a very pejorative and very pessimistic and very negative implication to patients and I suppose to my colleagues as well. Perhaps that’s even accurate. I don’t want to say no, but that’s still an unfortunate thing.
That carries over also into its usage in treatment. In the 1950s, when chemotherapy was starting up, particularly for solid tumours, there were two kinds of chemotherapy, one was curative chemotherapy, and if it wasn’t curative chemotherapy, we referred to the other type of chemotherapy for patients say with metastatic disease as palliative chemotherapy because at the time chemotherapy for metastatic disease was basically not very good and so the best one could hope for was make symptoms better, make the patient feel somewhat better, perhaps improve quality of life, so it was given the term “palliative chemotherapy”.
Different types of “palliative”
We stand here today 60 years later and we are still using the terminology “palliative chemotherapy” for another chemotherapy which is non-curative. Now 60 years later I think all of us can agree that chemotherapy has moved forward a great deal. Many kinds of palliative chemotherapy are much better than what they were in the 1950s. Many diseases, breast cancer, colon cancer, multiple myeloma, chemotherapy for them, if not curative, is very much life prolonging. People live years with metastatic disease. To keep using the term “palliative chemotherapy” for that kind of treatment is really giving them a pessimistic and pejorative implication and assignment which I think for a patient is a very negative thing to do. I think we should move away from using that terminology in that context now that it’s no longer a terminology that really applies, so let me thrown the gauntlet or as they say in the Olympics that baton to Chris…
CT. I’d agree with everything Alfred said. In the 50s and 60s and into the 70s, the use of chemotherapy was quite difficult, patients with metastatic disease had a very difficult time. Unfortunately, at that time there was relatively little discussion with the patient about what we could and couldn’t do. Although when I was training 30-35 years ago, we certainly never sought to mislead patients, there was a school of senior oncologists at the time, who would tell patients that things were going to be OK, that would perhaps allow patients to have a more optimistic outlook that was likely to be the case. This changed during the 1980s, when there was a move among some of our colleagues to be much more honest with patients and admit the limitations as to what we could do. And in that context the use of the term palliative chemotherapy at that time was quite useful because it was a recognition that we couldn’t work wonders for many of our patients with metastatic disease.
“…during the 1980s…there was a move among some of our colleagues to be much more honest with patients and admit the limitations as to what we could do.”
That admission was actually quite controversial. I remember being at a meeting some 30-odd years ago when a very senior oncologist said she thought it was outrageous that we admit to patients that we couldn’t cure them if they had metastatic disease. Now I think we are much more transparent and we’re much more straightforward with patients.
But what has changed now is that most patients with metastatic breast cancer spend a significant length of time – I know this is a simplification – living with their cancer rather than dying from their cancer. Certainly, that would be our aim. And in that context where certainly for people with metastatic breast cancer, where they may live with their cancer for several years, using the term palliative doesn’t quite feel right. It has that association with palliative care, but also we use the term palliative in our clinic letters and of course increasingly these days we send our patients copies of the clinic letters, so increasingly patients are seeing the terminology which may confuse them. So certainly I would favour thinking of metastatic chemotherapy – and it is generally metastatic disease – as being non-curative chemotherapy. I wouldn’t if you like want to outlaw the term palliative chemotherapy because there does often come a time when patients have exhausted a number of lines of treatment, where there is a decision whether or not chemotherapy is medically appropriate or whether symptomatic measures may be better.
There may be situations where chemotherapy may be seen as on a par with analgesics or anti-emetics, to control symptoms. Perhaps if we change from the non-curative to the palliative notation for chemotherapy, that would also be a prompt for us to make that transition towards palliative or supportive care, and to acknowledge that that was the phase of the illness that the patients had now reached. This is something that we’ve discussed, we’re just keen to have a wider discussion, I did look before coming here at our electronic chemotherapy prescriptions, and it gives us the prescriber options as to what the intent of treatment is. The options we have are:
- Disease modifying
I think that’s unnecessarily complicated and if we could find a terminology that we could agree on, with patients, carers and health care providers, that was a little better reflecting the type of care that patients hopefully experience these days.
AN: I would add my proposals in the paper I wrote was we categorise it into three categories which would be curative, which we all understand, we could perhaps include adjuvant therapy, neo-adjuvant therapy but that we sub-divide for metastatic disease into life prolonging chemotherapy and palliative chemotherapy. We should keep palliative chemotherapy when it’s really being used for palliation as opposed to or the most part life prolonging. Also it makes it more transparent than vague and ambiguous. Again, if we talk about radiotherapy for example, we sometimes use palliative radiotherapy for example when someone has a bony metastasis which is painful, there’s no implication that it’s curative. We use the term palliative radiotherapy in that context and I think that’s a very clear, accurate and appropriate terminology and we should use it with chemotherapy in the same context with the same terminology.
If I may, let me switch to another example of ambiguity or misuse of the term, this one I haven’t thought through that much but let me throw it out to the crowd (or to Chris) for comment, which is ambiguity of the term metastasis – again another term that we use all the time, I think it’s a term which is obviously a very concerning term, when a patient hears it, a patient who understands the term and what its implications are when they have this disease. Metastasis is spread of the tumour away from the primary site, but again we use the term metastasis in two contexts, one is metastasis to distant sites, liver, lung, bone, I’ll use this here in the context of breast cancer (as good as anything else) but again we also use the term metastasis for spread to local lymph nodes, so if a woman has spread of her breast cancer to her axillary lymph nodes, so in which case she’s let’s say stage 2, as opposed to stage 4, the same terminology is used by the pathologist in their reports, so that’s “metastatic spread to lymph nodes”, the same term.
Now if a patient reads their pathology report and sees they have metastasis to lymph nodes, if I wasn’t a sophisticated woman/layman, and I saw that terminology, that would strike terror into my heart, to see the word “metastasis” being used there. The truth is the implications are much less severe, not that they’re good necessarily, but they’re not the same as metastasis in the way we normally think about metastasis, so I think again this is an area where we really have to dichotomise the term metastasis into two different terms, and to restrict the term “metastasis” to distant spread or to stage 4 disease where we understand it and its implications as being ominous and to give a different terminology for local metastasis to lymph nodes where it’s much less severe a problem and I have not yet, I’ll be honest, come up with a term to us, I don’t know what term to use. I guess spread is a term used sometimes, but I’ll leave it to Chris or someone else to come up with a term. Passing the baton back on…
CT: I think that’s an important and relevant point, again in the context of breast cancer, when we’re talking about solely spread to the local lymph glands, we’re hopefully potentially in the curative setting, whereas when patients have got more widespread metastasis we’re invariably talking about non-curative treatment, so it is a black and white situation in many ways in terms of the nature of the conversation with patients, and I can imagine it being difficult for patients to reconcile the use of the word “metastases” in these different ways. As you say, the difficulty is they are both metastases, it’s the addition of the word “distant”, isn’t it, and I’m not sure if that makes it clumsy or it we would be better the word “spread” for the more local disease.
Topic: The last word – post covid issues in breast cancer moving forward… Speaker: Professor J Michael Dixon, OBE, Professor of Surgery & Consultant Surgeon; Clinical Director, Edinburgh Breast Cancer Now Research Group (02:19:22 – Watch this section of the Webinar).
MD: The impact of breast cancer on breast cancer services has been significant, and not necessarily for the right reasons. We were all going along doing lots of cases, and suddenly covid came along, and this is like, what’s happened to the economics and what’s happened to the cases? I was shocked and really disappointed…. In Edinburgh, we stopped nothing during covid. We continued regardless, and we’ve had no problems.
Points in relation to slides
ESMO said low priority groups were
- Follow up of patients at high risk of breast cancer – gene mutations
(so these could be literally shelved for a while)
- Psychological support visits – that was transferred to telemedicine, but of course many doctors weren’t available for patients for these visits
- They stopped population breast screening. We weren’t allowed to do any breast reconstruction with flaps and implants, although we continued to do some implant reconstruction in Edinburgh, the plastic surgeons didn’t want to do anything. I had to record a series of videos or Macmillan telling patients why they wouldn’t be getting their reconstructions.
- We weren’t allowed to do risk reducing surgery
- They were also saying that low risk groups were elderly patients with ER+ breast cancer, you could just keep going on letrozole, we often put a lot of these patients on letrozole for a while anyway.
- Patients with DCIS. It struck me that there’s a lot of groups here that they consider low priority, we could almost ignore these patients, and there are consequences of that.
Number of patients they were seeing monthly…
Croatia, quick sharp shift in April-May in the first lockdown and by the end you were getting 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.
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.
Even though we were seeing a lot of patients in the clinic, a lot of them were panicking about coming in. We almost instilled this sense of fear in people.
“We almost instilled this sense of fear in people.”
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.
Of course, what we found out was that covid and breast cancer don’t really interact. Breast cancer patients had less complications and lower mortality than many other groups (with different cancers). We didn’t see any excess complications.
Sadly, but treatment was amended. The treatments we were giving had no impact on covid infection rate or complications. It’s intriguing during the whole time of lockdown none of our staff developed covid. Since we’ve come out and got omicron loads of people have had it. During the time when everyone else was locking down and doing nothing, we were gaily carrying on, and we never ran into any problems and neither did our patients. We shouldn’t have changed our approach to treating patients.
Impact of covid on mortality
This is the sad news, looking at the impact of covid 19 on breast cancer mortality, and I think one of the most depressing aspects of covid, is that the people leading us were blinkered. They saw covid death, and they had no idea of the other death. They didn’t look on the shoulders of giants like the man who saw the apple falling from the tree – Newton. You’ve got to look beyond and above what’s in front of your eyes.
This study from the United States 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 %.
Different numbers of deaths up to 2030, skip screening, delayed diagnosis then no chemo.
“Sometimes you get it wrong”. We really got it wrong. The thoughts of Macmillan are there are 50,000 missing breast cancer diagnoses.
The government must act now to tackle the backlog, and we must ensure this does never happen again, and never again should be the forgotten “C”.
The fallout for us and for many is that there are a backlog of patients waiting to be seen, there’s increased wait for clinic appointments, we haven’t seen patients in many centres for four to six weeks… there’s delays getting reporting and scans and pathology, people in labs are off, and many people have left because the stress of everything’s that’s happened has actually been too much for them.
Huge backlogs in reconstructions and revision appointments.
Increased demand but there’s no increased funding. We’ve heard the government plan out what they’re going to do, but we haven’t heard anything that’s actually going to make an improvement. And of course there aren’t enough staff. There are so many jobs that are available, we haven’t trained enough people, we haven’t planned.
Rather sadly, and I see it every day, I have never done any private practice, patients that aren’t privately insured, are going to the private sector to get their lumps diagnosed, and the problem is, what happens when they get cancer, they come back into the NHS system, and that has an impact on NHS patients, is they get bumped further down the line in many cases. One of the things that’s been very clear about covid, was that the voluntary sector were themselves hit, but so many more patients needed information, support because they had no psychological support, because the psychologists weren’t there because they weren’t working.
Against this, you have to understand that you have a failing NHS system. I’ve worked for the NHS for a long time, and I’ve never seen it in quite as big a mess as it is now.
Looking at the impact of covid on the 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. Source: Nottingham Trent University, Sheffield Hallam University and NCVO
Expected impact of covid: moderate, negative impact 53%, significant negative impact 37%.
What is the future? We need to get all these groups funded again. Breast Cancer Haven, also think re Maggie’s and Secondary Breast Cancer group. We need more and more people to help. Volunteering is a super power. (Example of pink pick-up truck) – didn’t expect that, but we did. We did innovative and new thoughts. The voluntary sector plays such an incredibly important part, they are filling all the holes in at the moment, because there are many holes in the NHS system.
Everybody will have their own list of the roles that the voluntary sector plays. They lobby on behalf of patients to get more money in, we need more lobbying than we ever had because the system is in real trouble. They provide information and advice and work in partnership to provide needs. They continue to improve outcomes through funding research. So somehow, in combination with the voluntary sector, we have to get through this difficult period. We’ve got this huge backlog, we don’t have enough doctors, we want more and more of the voluntary sector, and of course many of the voluntary sectors provide the hospice care as well. So, I think – Houston, we have a problem.
Final question session from patients: One from a patient using B17 and turkey tail mushroom extract (for Chris). She happened to have lobular breast cancer, I know you can’t really discuss about individual patients, but have you any thoughts on turkey tail mushroom extract and B17.
CT: I don’t. These sorts of requests and discussions come up quite recently with patients. The concerns that I have are that firstly in a number of cases these can be quite expensive, and I am concerned that something for which there isn’t any substantial evidence is being used as a means of making money. I think there’s always the concern that if we say they are safe because they are natural and they don’t have any effect, it’s difficult to marry that up with them having a biological effect on the cancer, and if they are interfering or changing our metabolism in some way, then clearly there’s the concern that this may be negative rather than positive, and there have been some isolated examples where that has been the case, so I tend to be very cautious. It’s a different question – one that I’ve worked with quite closely – around on the use of cannabinoids in cancer, and there’s a huge literature on cannabinoids, but when you drill down into how much of that is actually substantiated or described in an accurate way, a lot of is potentially misleading, so I tend to rather wary.
MD: I do a lot of work in trying to find out what alternative therapies are beneficial and what aren’t, even on Chinese medicine. I was involved with people in the US, where took Chinese medicine, they tend to be groups of things, and even when you dissect out and look at the individual components, it’s really very difficult to show the benefit. I always think it’s very important to confuse the fact that there’s a lot of literature and lot of information on these drugs from supporters, with evidence. I’m someone who is completely open to everything out there, but the studies that I’ve seen show that if you look at the survival of patients to their diet it’s a U-shaped curve. People at the bottom of the U who do best have the best balanced diet. When you look at survival, people have an excess or a lack of something. The studies that have looked in fairly great detail about diet have not been able to show that taking something that’s not normally in your diet to excess, or reducing something in your diet that’s there, improve outcomes.
Next question on removing lymph nodes: secondary breast cancer – why are invaded lymph nodes not always removed, why don’t we do a full body scan from the beginning, because there might be metastases we can’t see, also had an experience where the PET scan missed various areas of bone metastases, how can that happen? She [questioner]has been told to have a CT scan, that can show up metastases whereas a PET scan can’t…
MD: Like the patient at one time, I was convinced that if you removed all the lymph glands it you would do better involved lymph glands, but study after study after study has shown that whether you remove some or all of the lymph glands, surprisingly it doesn’t make a difference. So you say, leaving disease behind, how does that work? Well actually in with patients with cancer who’s spread, the body in some of the patients actually copes with the cancer cells for years and years and years. We know because some people recur 20-30 years later, and those cancer cells have been there, so actually it turns out that leaving some of the lymph nodes is not always a bad thing, and sadly there’s belief that if you remove all of the cancer you can see, that that’s going to improve the outcome. That makes complete and total sense, but actually, it’s not been borne out in studies. So the American study where they did a sentinel lymph node biopsy, if the nodes were positive, they just left the axilla alone, the patients who had all the lymph nodes removed did no better, than those who had some nodes left, so it’s a conundrum, we don’t really understand it, but the fact is, radical surgery, doing more radical procedures, has never been shown to improve outcomes.
CT: And of course part of the problem Mike is that what is a problem what is lethal for most patients who we lose with metastatic breast cancer is that they had invisible occult metastatic disease, when they were first diagnosed, and that doesn’t go away by taking out an extra lymph node unfortunately…
Different types of scan
The question about the different types of scan reflects the fact that these are different types of scan. CT scans are quite good, or are probably the best in terms of granularity, in other words the amount of detail that you see, if you want a scan to look at much or most of the body. PET scans don’t show as much detail, but can be useful if the CT or another scan has shown the shadow, and we’re unclear whether it’s cancerous, because cancers tend to gobble up sugar, if you do a PET scan with radioactive sugar, then the lump that is cancerous is likely to light up because it’s gobbling up the sugar, the lump that isn’t cancerous is less likely to, but the amount of detail that you get in terms of how tiny the lumps that you see are, that isn’t as good with the PET scan. The other type of scan that women with breast cancer / metastatic breast cancer have are bone scans, these again are injecting a radioactive tracer, and that radioactive tracer homes in on areas where there is bone damage. Now in somebody with breast cancer, that may well be due to bone metastases, but if you have an injury to a bone that can also show an increase in uptake, so these scans need to be used in their particular situation and depending what the particular question is that we’re looking at answer.
MD: Can I just say if your cancer happens to be gobbling up sugars, if it’s not particularly active, then it won’t show up on a CT, so as Chris says, not one test is good for everybody.
KT: on the terminology points, the points were excellent, and the chat points were making similar comments, so if we’re not going to call it palliative breast cancer, how do we make that change, CT/AN, do you have any thoughts on how we can make this happen?
CT: Alfred published a seminal paper on this two or three years ago, and I can’t remember how I came across it. He articulated many of the thoughts that I’d started to have. Alfred and I decided following this how we might look at and take this further forward, whether we canvass patient groups or our colleagues, and look at how we might make this change. It is largely coming from the use by the medical profession. We like to value the public’s perspective on this, but I think it would be the medical professionals who we would need to convince to change.
AN: that’s true. I don’t know how exactly you get people to change their language or terminology exactly, by utilizing it in papers, in the literature, then people will adopt it more as time goes by. That’s a slow process, I think, people don’t like to change the words they use so easily, it doesn’t happen overnight, so we’ll see. Life changes, so words change too. We’ll see what changes happen. I see on the chat line someone said they use the term secondary for second primary breast cancer, contralateral breast cancer for example, that’s what I thought, when I first heard someone refer to it, that’s also an ambiguous term as well – at least it was for me – so lots of things are ambiguous sometimes.
KT: go on the chat and make connections with each other, thank you…
Miscellaneous points on patient chat (not necessarily covered elsewhere)
Support is need for physical activity, diet, weight, consumption. Councils advice (also county campaign). JT retreats.
Shortage of radiographers
Proton – no approval yet?
DIBH of interest to patients (Deep Inspiration Breath Hold)
www.lobularbreastcancer.org.uk awareness needs to be promoted, or groups linked
Terminology on reducing risk / prevention
JT: Supportive Care! Confusing terms https://metupuk.org.uk/2020/08/supportive-care
Infographic, all languages
Global register of secondary breast cancer patients (1 data project)
Diet and menopause. Happy Hoque : www.nutritionfacts.org
Clarity on salaries
US database alternative therapies
JT: celebrity promotion
jenniferbudden: I was diagnosed oct 2020 as a result of a routine mammogram which was 2 months late. I can’t fault my treatment and care, however the lack of support was devastating, appointments were attended on my own, and I had bad news at each appt, everything was shut down, it was difficult to get support even from friends and family due to the lockdowns, I had invasive DCIS and invasive lobular, because Covid was very bad in my area the priority was to treat the cancer as soon as possible, as a result no reconstruction was available for at least 2 years. I’m clear now but I am only now just getting the support I needed a year ago.
Research on living longer, JT From Jo Taylor: We have a new drug called Tucatinib which targets brain mets BUT we don’t stratify patients – we know that HER2+ and TNBC have a high recurrence rate of brain mets when they are diagnosed with SBC/MBC 50% & 46% so why are we not checking those patients with a brain MRI?
Mike Dixon: Great meeting. In answer to the question of why we do not look for spread regularly. Two reasons. First none of the studies that did regular scans showed a better outcome. Second a scan can be normal but within a few weeks become abnormal. So it is better to do scans when patients have symptoms.