Prof Carol-Ann Benn unpacks the different ways of ghostbusting in oncology treatment.
There is something strange in the neighbourhood so who are you going to call? The strange is another friend or family member, or even yourself, diagnosed with breast cancer. You want to call and help and offer advice, but should you maybe not leave that to the professional ghostbusters (and who may those be?)
Who are the ghostbusters?
There are professional ghostbusters (the treating team that works in a co-ordinated multi-disciplinary fashion) and your own private team of ghostbusters. These can be family or friends; they need to promote positivity, help with logistics and provide a non-judgmental platform for you to make decisions.
Beware of aliens in disguise
You have your personal ghostbusting team; but all may not be as it seems. You know that neighbour who tells you about her aunt “who died in hospital due to chemo”; that uncle who knows someone with a home oxygen machine that cured his cancer, diagnosed by the fortune teller. That person walking their dog, “you should see the horrific scars from some botched surgery” and told you to watch the programme. These are aliens in disguise, placed to ensure you land up on that strange planet of fear and disbelief. It’s up to you to ghostbust them out of your life.
The MDM ghostbusters
The professional ghostbusters should consist of specialists from many disciplines. There are those that are behind the scenes (specialist breast radiologists and pathologists) but play a critical role in making the diagnosis.
Beware of those radiology units that insist you see a doctor because of preferred choice or bias or referral for a surgical biopsy. Allow yourself the freedom of choice.
I have a rule that I’ll see anyone irrespective of medical aid funding availability or not. Not because I need to treat everyone but I want them to have an opportunity to not rush into treatment but rather digest the options and then wonder off in the directions of their choices.
The professional team should consist of:
the clinical team doing the work on the ground: Marines (surgeons and reconstructive surgeons); the Navy SEALs (oncologists both from the medical and radiation specialties) – the important ground team doing the behind the scenes essentials to make the ghostbusting successful. Critical for any covert op are the allied health professionals, complimentary health specialists and the navigators who check that you’re on the path to health.
I’ve recently had the Milpark Unit internationally accredited again (this involved complying to 27 international-based standards from the managing of benign and high-risk lesions to diagnosis, treatment, quality issues, review and survivorship). Big yahoo and thanks to all! Our international accreditor from Harvard was impressed; blown away by the quality of the MDM and gave us 100% on all 27. Well done team!
What steps should be taken to ghostbust?
Your treating diagnostician should discuss and review your radiology report, confirming a match between the radiology and the pathology. I call this CPR (the initial resus steps: clinical, pathology and radiology review). This is to confirm we truly have a ghost in the house.
Remember there are mimic lesions that may not be cancers. There are risk lesions that are not cancers. There are very lazy sleeping cancers (Casper the Friendly Ghost) and then a whole range of ghosts and ugly aliens that need a mixture of ghostbusters and Men in Black (or women) to sort.
Step 1: Confirm the presence of the ghost/alien.
Step 2: Understand the alien. This involves all special stains that are done in the lab, prior to starting treatment, to tell us what type of breast cancer it is: Luminal A, Luminal B, HER2 or triple-negative.
Step 3: All should be discussed at a MDM with a navigator giveing you feedback prior to slaying the ghost.
My big ghostbusting for 2020 is to ensure that all women are discussed in an MDM prior to the slash and burn of treatment, and that the diagnosis of breast cancer is made by a specialist radiologist and a core needle biopsy, not a surgical excision biopsy.
Busting cancer ghost myths
Why so much cancer?
There may be more cancer but less people are dying of infectious diseases, plague and other horrors. Actually, less people are dying of cancer, if cancers are detected early.
So, if you look at world stats, the regions which have more deaths due to causes such as malaria, maternal and child death “seem” to have less cancer. This is not necessarily true and it may be that less documentation and recorded diagnostics stats skews this.
What causes cancer?
Well this is a combination of genetic cell damage – the inability of damaged cells to be killed and our bodies, for many reasons, allowing the harbouring of terrorist cells. So, as people live longer, cells undergo change and develop into cancer cells and due to various stressors, the body doesn’t kill these cells.
Every couple of weeks a new release on risk is published. Over the many years, I’ve seen many factors being lauded as “the” significant risk factors for cancer. Not so simple!
What do we know
There are things you can’t change in your life (when you start and stop your menstruation; whether you can have kids and breastfeed them).
There are factors you may not wish to change: the use of contraceptives to prevent pregnancy; the use of hormone replacement to prevent significant menopausal symptoms.
Some of these factors can be negotiated changes: vasectomies for men; not using contraception for reasons, such as skin and menstrual regulation. Accepting some menopausal symptoms as we can ‘just deal’ with these; using local options for menopausal symptoms, for example, vaginal dryness. No one should suffer.
Can we prevent cancer?
What about those things we can change? With the new year, I think of all I could do better.
- Exercise more – a good cancer deterrent (recent publication: moderate to vigorous exercise decreases risk of the seven most common cancers).
- Drink less alcohol – an excellent cancer deterrent.
- Keep your BMI (body fat is bad) at the normal level. It’s all about calorie counting. A useful app is MyFitnessPal.
Ghostbusting screening myths
Much is said about cancer screening “Too much yet not enough.” Screening is a health economic budget. The UK looked at the difference in screening every three years versus every year and found no to minimal difference in cancer detection rate.
The USA screens every two years from 50 and in sunny SA, we don’t have a screening programme. But by so saying, only 25% of women on the Discovery Vitality programme screen. Come on ladies, if you have access to a medical aid, access your screening privileges and use them!
If you’re not on a medical aid, a simple breast exam is a good start, and if concerned please access one of our excellent open-access government breast units.
Ghostbusting the internet
Now there are some serious scary alien-type creatures out there! A disclosure, I’m not a techie. I just tried to Shazam from a light fitting (I do have Shazam though).
My daughter recently did a communication course at Stanford and here is the down and dirty when you do a search on the internet.
Everything about that topic at the level you search is repeated to you if you open your search engine on that topic again.
So, if you’re looking at cancer survival…any (which could not be factual and definitely not medically researched) links are sent to you. This is like ghostbusting in a haunted forest or horror movie. You turn a corner and aaarhhhh; and then you switch the lights on for a minute…but you can’t sleep so you look at the screen again and aarrhhh it’s worse.
From one insomniac to hopefully not another, the middle of the night is a dark and lonely place; eat chocolate or wake a friend but don’t go for the following multiple choice options:
a) Sitting in the middle of the night with your brain going over life and choices, life and decisions, and life and death.
b) Turning to Google.
If you are a Google fanatic, you need to understand that you’re accessing large realms of the universe with little understanding of the galaxies or planets, unless you’re a specialist in that galaxy or solar system. So, me googling my eyebrow twitch will have me in hysterics…me not being a specialist in that field.
Ghostbusting cancer treatment
Now this is like looking for that special Eden…the planet of amazingness that is hard to find and never 100% perfect. As each person is different so should cancer treatment be individualised.
Another topic I will cover this year is “What’s new in surgical oncology”. Personalised treatment, whilst not new, is becoming more mainstay….and therefore access to specialised units is important. So, again, please go for a second opinion if anyone insists on a doctor or treatment without a detailed discussion with many specialists from different disciplines being present.
I had an amazing chat with a colleague who firmly believes that no patients with breast cancer should be treated outside of a specialist unit ….and that those specialists should be treating a certain number of patients per year. Here is hoping that the good work The Breast Interest Group of Southern Africa (BIGOSA) is doing, achieves this.
I would go as so far to say that “no patient should be admitted or operated on without a discussion in an MDM and feedback given to that patient from a navigator and not the treating specialist.” But here is wishing for patient safety for 2020.
Each cancer is unique
To ghostbust treatment means each person and cancer is an individual.
Less is more and more time to choose options.
Smaller surgeries, less radiation.
Less patients requiring recipe-chemo regimes or no chemo at all.
More genetic profiling of tumours.
Clever reconstructive options.
Possibly no surgery for some patients.
Ghostbusting your neighbourhood.
Whilst all the above can happen; please ensure that your research is solid and you’ve done a detailed search so you can find your planet Eden.
MEET OUR EXPERT – Prof Carol-Ann Benn
Prof Carol-Ann Benn heads up internationally accredited, multi-disciplinary breast cancer centres at Helen Joseph Hospital and Netcare Milpark Hospital. She lectures at Wits University and, in 2002, established the Breast Health Foundation.