Newly diagnosed: the next steps to take

Kyrie de Beer and Ouma Mamatela speak us through how the steps of a newly diagnosed patient work at the Netcare Milpark Breast Care Centre of Excellence and Helen Joseph Breast Care Clinic respectively.

What should a person do if they have a worrying breast symptom?

Kyrie – Please attend a reputable breast imaging clinic for sonar or mammogram. If the radiologist deems the lump worrying, a core needle biopsy should be done. Results will be out in two to three days.

Ouma – The first step would be to go to a local clinic for a clinical breast examination and referral to the closest breast clinic. Specifically, at HJBCC, you don’t need a referral letter, it’s an open access clinic. A patient will be seen on a Tuesday (our first time visit clinic) and be seen by the doctor, who will book an ultrasound, mammogram or biopsy depending on the case. It takes a maximum of two weeks, if the case is urgent, to get a date to do all the tests. The ultrasound and mammogram results are available immediately after they are done and it takes two weeks to get biopsy results.

Once a patient is newly diagnosed, when is the first time she meets a navigator? 

Kyrie – Normally after consulting with the breast specialist. Sometimes a patient who is in a state is sent to us and we counsel them and get the process started before seeing the doctor. Not everyone meets or needs a navigator but definitely comes into contact with one during whichever treatment path they are on.

Ouma – Once the patient is diagnosed, the doctor always accompanies the patient to us (navigators) for counselling.

What is the next step after being diagnosed with breast cancer? 

Kyrie – A referral to an accredited unit is best, either to a breast specialist or oncologist. A navigator or another staff member sends off documents for registration of the patient’s oncology benefit. The specialist then determines what testing is required and where/which treatment path to start on. The breast specialist will gladly fit a patient in that same day of diagnosis if they’re stressed and/or anxious. If a patient is seen by one of the members of our team, they get referred relatively quickly from diagnosis. Sometimes additional specialised pathology tests are required and results take a week before treatment decisions can be made.

Ouma – The patient will be counselled by a navigator; their cancer diagnosis, upcoming treatment and support system will be discussed. The navigator makes copies of all the results, one for the patient and another for the oncologist. The following day, the navigator takes the patient information to oncology at Charlotte Maxeke Johannesburg Academic Hospital (CMJAH). It takes two to three weeks to receive a date to start chemotherapy. The patient will arrive at CMJAH for their appointment and will be seen by an oncologist, have their bloods done, height and weight is measured, and a date will be booked for a heart scan. In a case where the patient needs to start with surgery, a booking is made at HJBCC.

Are all patients discussed in a MDM? 

Kyrie – Yes, the pathology and radiology imaging is sent and each individual case is discussed, and treatment is determined by the biology of cancer. Four to six navigators join the meeting every week and take minutes. We then spend time updating the patients’ files and give the patients feedback. Sometime a patient is required to come in to see the specialist for feedback, especially the newly diagnosed with new results e.g. MRI.

Ouma – Not all patients are discussed. The breast specialist lets the navigators know which special cases to present at the weekly meeting.

What other assessments are done with newly diagnosed patients? 

Kyrie – If a patient is young, we refer her for fertility assessment and treatment. Google forms are sent out for patients to complete to determine whether they require psychology consults. We have a genetic counselling team; an occupational therapist on site for lymphoedema, pain and damage repair treatments, and our own wound clinic too, if a patient requires any of these services.

Ouma – Counselling is crucial to the patient because most of the time they are in a panic, thinking it’s the end of their lives, so when we talk to patients we ask about their family history. As navigators we are trained counsellors, we counsel the patient after their diagnosis in their home language. This is both informative and emotional counselling.

Who chooses the oncologist, the newly diagnosed patient or the referring doctor? 

Kyrie – Supposedly the navigator is to choose the oncologist. At times, I let the patient choose an oncologist by providing information, such as address, personality, gender, specialities, etc. More often the breast specialist decides where/who the patient will be seeing. She likes to match personalities.

Ouma – Unfortunately the patient doesn’t get to choose an oncologist. She/he will be seen by a rotation of oncologists provided by the hospital.

What other tests will the newly diagnosed patient have before starting treatment?

Kyrie – CT scan; heart assessment with cardiologist; blood tests to check immune system and any allergies; and possibly a chemo port, if the patient has bad veins. Sometimes a PET scan with CT.

Ouma – Patients have to do a chest X-ray and depending on the case, do a liver sonar and blood test before they can be referred to CMJAH. 

Explain the referral process for reconstruction?

Kyrie – Your preferred surgery type will be discussed with the breast surgeon, who will make recommendations based on the size and site of your cancer (lumpectomy or mastectomy). You are then referred to a plastic and reconstructive surgeon to discuss the different options of recon with the type of excision. Immediate reconstruction is done at our unit so you have your cancer taken out and wake up with reconstructed breasts.

Ouma – Reconstruction is the patient’s personal choice. If a patient wants to do reconstruction, they are referred to the plastic and reconstructive doctors within HJBCC and the patient will be taken through the process.

Explain the process of final pathology and if radiation is needed.

Kyrie – Final pathology goes through the entire area excised and determines if clear margins (healthy tissue around tumour) were obtained, what effect chemo had if any and also any changes/comparison in biology of the cancer from core biopsy to final. If the tumour is still very ‘active’ post-surgery, adjuvant chemo could be advised. If it’s unclear, an Oncotype DX or MammaPrint test may be requested to determine the recurrence rate with/without chemo and hormone blockers. The criteria for radiation is normally known upfront: tumour size, grade of tumour, nodal involvement and type of surgery. If you have a mastectomy and had no lymph node involvement and the size and grade of the tumour was small and low, you may not need radiation.

Ouma – At HJBCC, specific patients qualify for genetic testing. When the patient requires radiation, the navigators book it and take all the tests she/he has done to the radiology clinic at CMJAH and we are given a date for when the patient can come in for consultation with the radiation oncologist.

Is the navigator in contact with the patient throughout the journey?

Kyrie – We certainly try. In private, we are overloaded percentage wise, patient to navigator. In public that is quadrupled I’m sure. My personal cell number is out there for the world. I get referrals and queries from all over Africa and some from Europe.

Ouma – Yes, throughout treatment into survivorship. All navigator’s contact details are given out and are available 24/7 as it’s important for patients to know that we care and are available throughout their journey.