As a practitioner, it is likely one of the hardest conversations to have. As a patient, it is life changing news to hear: knock-you-off-your-feet, wind-out-of-your-sails, this-cannot-be kind of stuff.
“You have breast cancer.”
Now what?
Getting this utterly devastating news almost always pushes patients into a whirlpool of emotions and thoughts. For practitioners, it is more often than not a moment of helplessness and a tipping point where many will resort to focusing on practicalities in order to avoid the flood, or aery absence, of raw emotions flying at them.
When fear grips you by the tail end, it is useful to have something to anchor you. When you are tossed out in the wilderness and need to find your way back home, the one thing you really need is a road map.
So this is what we aim to provide this breast cancer awareness month — a bird’s eye view on the breast cancer wilderness and the outlines of what you may want to use as a treatment map.
Anchoring advise for patients
- This sucks. And it is ok for you to feel utterly overwhelmed and devastated. Feel it. And then lift your chin. Take a deep breath — often.
- Put on your hiking boots because this is a journey with some windy but beautiful roads. You won’t believe me now but you will meet other survivors. And most of them will tell you the same thing: that you will never be the same — for the better. Because, yes, your body is going to be put through the paces but your soul, if you so choose, is in for a heck of ride.
- Develop selective hearing — everybody will have an opinion on what you should or shouldn’t do… who you need to see, what you need to eat, when you should sleep or meditate or poop. There will also be a lot of “ xyz happened to me / my auntie/my neighbour/Angelina Jolie.” They mean well. But this is your body. Your cancer. Your journey. And it really is — on a molecular, biological and scientifically proven level.
- Empower yourself with information but pick your sources well. Ask questions. This is why it is so important to trust your treatment team. Let them guide you if you are looking for reading material. The internet can be your worst enemy.
- One step at a time. Don’t lose yourself in ifs and maybe’s and a future none of us can predict anyway.
- Don’t isolate yourself. Pick at least one person that you can trust completely with your experience — and that can accompany you to scary appointments. If you can’t, speak up and let your treatment team help.
Anchoring advice for practitioners:
- Be present. Sounds simple but in general allopathic practitioners are quite uncomfortable with this and are in some ways taught to emotionally check-out when hard conversations are on the table.
- Be honest but kind.
- No guess work. In cancer treatment and management, you have to get very comfortable with not knowing, with grey areas and with reaching out for advice and help. Never make decisions alone — you have to work with the treatment team. If you don’t get the feedback you need from specialists, insist on it.
- Not all patients will resonate with the same specialist. Make sure you refer to a team that you trust but that will also be able to connect with your patient.
- Take care of yourself — as caregiver it is of the utmost importance that your own wellbeing is a priority. That is the only way we can fully show up for our patients.
The territories of the map:
Remember first and fore most that each patient will have a unique treatment journey. Here are a very brief summary of the terminology and modalities that you want to familiarize yourself with:
- What type of cancer?
In breast cancer we have moved away from focusing on the morphology of the cancer although it still has a role to play. The most common type is by far ductal carcinoma and its subtypes (it may have mucinous or papillary differentiation) followed by lobular carcinoma. What is far more important is the molecular footprint or receptor status. These include oestrogen receptor (ER) and progesterone receptor (PR) status as well as Her2Neu expression. The Ki67 score is also important. I call this your cancer’s “personality” – some are quiet lazy, others sneaky, and others downright mean. By understanding the cancer’s personality, we can really individualize treatment and target it in the most effective way. The proportion in which all these elements are expressed in the tumour will play a big role in determining:
- The sequence of treatment (surgery first versus neo-adjuvant chemotherapy) – typically your so-called triple negative cancers (no estrogen, progesterone or Her2Neu receptors) or locally advanced (bigger tumours) will receive chemotherapy before surgery
- How to deal with positive axillary lymph nodes
- If chemotherapy is necessary
- If endocrine therapy (oestrogen receptor blockers) is necessary and in pre-menopausal women if ovarian ablation (making the ovaries inactive or removing it) is needed
- If biological / immune therapy is necessary
- If radiotherapy is necessary
Another useful tool, particularly to aid in the decision around chemotherapy, is Oncodx or Mammaprint — so called genomic testing that can assess a particular tumour’s response to chemotherapy.
- Staging
Personally, I prefer to steer clear of labelling patients with a “stage” — I have seen little psychological benefit in it. Academically, it is however useful. Staging is done pre- and post-operatively as we can gain a lot of information from the tumour specimen. Clinically the TNM classification (tumour size, nodes palpable, presence of metastatic disease) is still used. Metastatic screening (especially in those with palpable nodes) would typically involve basic blood work, a CT Chest and CT abdomen (although an abdominal ultrasound can also be used) and bone scan or whole body MRI. PET-CT is a one-stop option although not recommended in Stage 1 and 2 patients.
- Genetic testing
Although I believe that this will play an even bigger role in the future, genetic testing should currently be used selectively and always only after proper genetic counselling by a trained professional. In general, patients with a strong family history or patients diagnosed before the age of 50 should be referred.
- Surgical options — always divided in a breast procedure and an axillary procedure
- Breast conserving surgery (taking out only the tumour with a clear margin) has become the gold standard and should be offered to all patients if at all possible. There is a mountain of evidence to support the safety of BCS if combined with radiotherapy
- Modified radical mastectomy — removing the whole breast — with or without reconstruction. Reconstruction can be done as a delayed procedure or immediately and can be done with implants or with a tissue flap (the most popular now being the DIEP flap — very much like a tummy-tuck and using that tissue to create a new breast)
- Skin sparing mastectomy/nipple sparing mastectomy — in select patients skin and/or nipple can be spared and only the underlying breast tissue removed. This will then be followed by reconstruction.
- Axillary node clearance (removal of all the lymph nodes under the arm) is rarely indicated and sentinel lymph node (the so-called gatekeeper lymph nodes)biopsy has become the gold standard.
- It is very important that patient’s receive proper post-operative physiotherapy to ensure arm and shoulder mobility.
- Chemotherapy
- The most common combinations of chemotherapy would include the so-called red devil (Doxyrubicin or Adriamycin) . Prior to getting this drug, patients will be sent for an echocardiogram since it may be cardiotoxic and will, unfortunately lose their hair. This can be incredibly challenging for patients and it is important that they are psychologically prepared. Early referral for a well-fitted wig or head coverings can make a big difference in self-confidence. There is also some evidence that wearing a specialized “cold cap” during chemotherapy can limit hair loss – but will not prevent it completely. Giving patients the opportunity to work with an aesthetic practitioner that does permanent make-up (must be reputable and use non-toxic alternatives that is now available) can assist with various techniques to do brow micro-blading or tattooing and even permanent eyeliner that masks the loss of brows and lashes far less obvious and greatly boosts confidence. Like they say, if you look good, you feel better.
- Herceptin or trastuzumab is strictly speaking not a chemotherapy drug but rather a biological agent or monoclonal antibody that is used to treat patients that has Her2Neu (human epidermal growth factor receptor 2) expression in their tumours.
- Radiotherapy
- This is a non-negotiable when breast conserving surgery is performed.
- Radiotherapy may be given as a short course delivered in slighter higher fractions over 3 weeks (15 sessions) or as a longer course delivered in slightly lower fractions over 5 weeks (25 sessions). Both are supported by good evidence – very often the type of surgery the patient had or other patient related factors would sway us to use one rather than the other.
- Another indication for radiotherapy would be the presence of positive axillary nodes (cancer that spread into the lympnodes)
- Endocrine therapy
- All patients with oestrogen receptor positive tumours should receive endocrine therapy.
- Tamoxifen is used for pre-menopausal women and an aromatase inhibitor for post-menopausal women.
- There is evidence to suggest that this treatment can be continued up to 10 years with a survival benefit
- It is important for practitioners to look after their patient’s bone density, cardiac and uterine health when on this treatment
- Many patients struggle with the side-effects – which are essentially those of an accelerated menopause. Fatigue, brain fog, hot flushes, vaginal dryness and joint pain are some of the more common complaints. If not supported and managed (diet, stress management, use of supplements like bio-available vitamin E and curcumin, safe vaginal lubricants and mood stabilizers) many patients will not be compliant with their treatment which can have devastating long-term consequences. Much work is being done in this area to enhance patients quality of life.
- Alternative health care modalities
- In our practice we use a body talk and TRE — both energy medicine modalities — for those patients that are interested
- Nutrition is extremely important and therefore all patients are encouraged to have at least one session with a nutritionist to guide their eating habits. Food really is medicine – so much can be gained by being more mindful of what we put in our tummies! To get you started, make sure you try our delicious recipe below!
- Supplements — although the topic of debate there is fair evidence to suggest that vitamin C, zinc and selenium improve wound healing and immunity. Bio-available vitamin E is a powerful immune system support and may assist in skin recovery after radiotherapy. Magnesium oxide can aid in digestion as well as improve sleep. Slippery elm and psyllium husk with good probiotic can improve gut health. These are basics but have at least some evidence to back their use unlike a multitude of products available in health shops.
- Health care coaching/counselling — the psychological wellbeing and mindset of the patient and her/his family is of the utmost importance and should be as much of a treatment priority as the surgery or chemotherapy.
This really is just broad brush strokes to give some indication of the terrain ahead – but I hope that this will serve as good basic map to tackle the journey with. There are many wonderful resources available – and also very dangerous ones. Please choose your resources wisely.
For more information, please contact us or visit our website.
www.capebreastsurgeon.co.za / reception@capebreastsurgeon.co.za
