Prof Carol-Ann Benn shares a list of questions which should be your visa before you travel down the road of a breast cancer journey.
I’ve had a traumatic month of seeing patients ‘post-event’. The event usually involved surgery and not a lot of patient counselling, communication, or any multi-disciplinary meeting (MDM). So, here are questions to ask before any doctors take control of your cancer journey. Remember, it’s your journey! You’re driving your car (body); they (hopefully more than one doctor is involved) only get to help select the travel map. The destination is your health.
You have a lump; you’ve been for a mammogram and there is concern. Take time before being rushed into expensive biopsies; and worse still surgical biopsies (A big no).
Questions to ask:
- Was the ultrasound done at the same time as the mammogram by the radiologist?
- Can I take my mammogram for review elsewhere? Yes, you can.
- What is the cost of the biopsy you are suggesting? Can it be done elsewhere cheaper?
Alarm bells must ring if you’re told:
- Breast cancer is an emergency. You need to have surgery tomorrow. No one died from breast cancer in the breast but rather from breast cancers’ ability to spread to other organs.
- I don’t believe in chemo, surgery, the value of lifestyle, diet and exercise.
- I have a 100% success rate.
- There is no need for a second opinion.
- I’m the doctor. I’ve studied and you haven’t.
Beware of in-house referral systems. I advocate most people with stressful diagnoses to have at least two opinions and a discussion in a functional MDM that involves doctors, from many disciplines, who are independent and not part of a ‘gang’. Guess what, I’m not going to see the doctor you referred me to. I’m going to do my research.
Dr Who, maybe Dr McDreamy; the best, and the one you want to stay with forever. But he/she, as Dr McDreamy, won’t mind you going for that second opinion and will welcome you back with twinkly eyes and loving care.
Questions to ask
- Are you a specialist that only treats breast cancer? How many patients do you see?
- Can you provide me with info on breast cancer treatment based on international guidelines? This means they’re treating you based on fact and not belief.
- Can you provide audited data, such as ‘I’ve treated so many patients over this time with the following outcomes?’ It’s not acceptable for a specialist to say, “In my opinion, extract of rhubarb cures all cancers and I have a 100% success rate using only this treatment. All treatments need to be backed up with data.
- Are you prepared to be available for calls, discussions, more consults, negotiations and, most of all, for me going for second opinions?
- Have you been given a copy of your results?
- Have your results been explained to you?
- Have they told you that you will be discussed prior to starting treatment in a MDM; and that you will be provided with independent feedback? Ask for written feedback from the navigator as to what was the decision in the MDM.
- Do you have access to navigators (to guide you along your journey)?
- Does Dr Who have access to a team of different specialists? Sometimes cancer treatment requires different specialists, from oncology disciplines, survivorship doctors and allied healthcare, such as complimentary health specialists to nutritionists and lymph specialists.
Dr Watson – It’s elementary
To be told that you have cancer is a life-changing diagnosis. There are millions of questions to be asked. Yet, when you reach your doctor’s office, all those questions have disappeared. Remember Sherlock, you need to ponder this problem and find your Dr Watson.
Recently, I saw a lady who had a surgical biopsy after the surgeon did a blind needle biopsy in his rooms, followed by a bilateral emergency mastectomy without reconstruction and 20 glands were removed (all negative). All the above is wrong. Wrong! Ask the questions first and ensure the scalpel is not raised until the answers are there.
The following is a guide to help you ask the right questions. Obtaining info from your doctors will help you regain some control over your diagnosis and assist in developing coping mechanisms for your new situation.
This is assuming you’ve had your mammogram and ultrasound done at a specialist unit. Not been rushed into a biopsy, and have been given the option of different specialists to consult.
- What type is my cancer? Luminal A; luminal B, HER2-enriched, triple-negative. Is it an inflammatory cancer; Paget’s of the nipple; an unusual type? Please provide me with info and the stage (even though the behaviour may determine treatment irrespective of the stage).
- Where is the cancer at the moment? Cancers start in an organ, like the breast, and then wants to spread. We give cancers a T-size (that is how big), an N-notation (are there glands involved) and an M (maybe elsewhere) and trumping all this: what is the behaviour?
- Is it in only one part of my breast? Cancers don’t spread from one breast to another, but try to spread elsewhere. Has it spread to other parts of my body? The first port of call may be the sentinel lymph nodes which is commonly seen with a good ultrasound. If there is cancer in the nodes, it’s not common to start with surgery. There are exceptions to this, such as extremely lazy cancers. But even here, starting with oncology medicine is advised.
- Have you assessed my whole body for cancer spread and how is this done?
- Are there further tests that I need to have, such as a breast MRI; scans of my chest, abdomen, pelvis? What are the different scans and when are they done? Do scans give all the answers as to has the cancer spread. The answer here is no.
- What will the scan tell us and what if incidental findings are seen? Will the scans confirm my diagnosis? Do the scans alter the treatment I may need?
- What will I experience when having the test/s?
- Is surgery going to improve my chance of survival? Should one always start with surgery? The answers here are complex; surgery should never be done until detailed understanding of the behaviour of the cancer is understood. Sometimes starting with surgery can jeopardise survival.
- Is surgery absolutely necessary? Are there cancers that may not need surgery at all? What are the different types of surgery? How many of these surgeries have you done? What is your complication rate? Why do the international-accredited units strive for a 60% breast-saving rate? Breast-saving surgery goes hand in hand with radiation.
- Do you work with a reconstructive surgery team? If not, what is your training in breast surgery and reconstruction? Do you have ways in theatre to ensure that the cancer has been taken out properly? Radiology and pathology, for example. Has the cancer area been marked before the surgery to ensure that the correct area is taken?
- What is the aim of surgery? To cure the cancer or to control it and manage symptoms?
- The lymph nodes are the drainage basin. There is lots of data to say that many glands don’t need to be removed. Have you been given reading on the sentinel lymph node and has the surgeon explained how he/she does this procedure. What techniques are used to identify the sentinel lymph node? What is the surgeon’s recurrence rate with doing this surgery? How many have you done? I’ve seen surgeons and reconstructive and plastics surgeons do this and miss the glands. Insist on a surgical second opinion.
- Do I have a choice of treatments? Breast oncology care is now personalised and not recipe-based.
- How much time do I have to think about this? You have time. The doctor’s room and consult is for your info and not the place to make decisions. Home with loved ones is a better decision-making place.
- Do you need my decision today? Absolutely not!
- What is the best treatment for me and can you back it up with data?
- Are there new surgical and reconstructive techniques that are on offer elsewhere or within your unit?
Surgery plan questions
- Could plans to operate on me change while I’m under anaesthetic? No, this should not happen. What am I signing consent for?
- Will you be doing the surgery?
- When will I meet the anaesthetist?
- Will I require a blood transfusion? Almost never. In fact, in our unit we don’t do blood transfusions.
- Is there anything I can do before or after surgery to assist my recovery?
- Do you have handouts about what to expect around my hospital stay? What to pack and who can guide me?
- Ask about drains, catheters, etc. and when they will be removed?
- If reconstructive surgery is offered, ask about all options in details. What are the different techniques, risks and complications?
- What should I expect after surgery? What do I need to know about dressings and wound care?
- How long will I be in hospital and what would change that?
- What problems should I look out for when I go home and who do I contact if any occur?
- Is there any written info that I can take home about my after-care?
- Will I need additional treatment after surgery?
Questions regarding costs
- What will the costs be throughout my treatment e.g. medication and operation costs?
- Is my medical aid going to cover my treatment? How do I find out these cost estimates? Can I receive care elsewhere? Can I negotiate costs?
Questions to ask your medical oncologist
If you need to have chemo, endocrine or target therapy, or immunotherapy, ask these questions. As with your surgeon; you can go for second opinions and ask for feedback from the MDM.
- What stage is my cancer? What is the biological type?
- What are my treatment options? Are there more than one combination treatment options that I can have? Have I been discussed in a MDM? Are there tests that can be done to assess the need for chemo and to possibly avoid chemo?
- Are clinical trials an option for me?
- What results do you expect? How do you monitor the effectiveness of treatment?
- How long is the course of treatment? How do I know it is working? Can I change treatments?
- How often do I receive treatment and how long will each one take?
- Where will I receive treatment? Will I need help to and from treatment?
- What are the side effects (long-term and short-term)?
- Is there a way to minimise side effects?
- Can treatment cause other problems, such as heart-, lung-, kidney damage, or fertility problems? Should I see other specialists before I start treatment?
- In case of emergency during my treatment, who do I contact?
- Do I need tests during treatment and how often?
- How often do I need to have follow-up visits?
- Can I continue working/studying while on treatment?
- Do I need to be hospitalised at any point during treatment?
- How do I protect myself from getting infections?
- Are there any specialised shops for the needs of cancer patients (stocking wigs, head covers, prosthesis)? Does my medical aid cover any of this treatment?
- Do I need to follow a special diet while on chemo?
- How long after chemo will my hair, eyebrows, lashes and nails regrow?
Questions to ask your radiation oncologist
Radiation is given to patients who have breast-saving surgery; all cancers that have spread to lymph nodes; and all advanced cancers.
- What are the treatment choices available for my type of cancer? Are there other options; and do I have time to decide? What if I’ve had surgery and am now conflicted, what are my options?
- Which treatments do you recommend? Is radiation one size for all? Most definitely not!
- Where can I receive treatment? Will I need help to and from treatment?
- How long will each treatment last, and how will I receive it?
- What results do you expect (short-term and long-term)?
- What are the side effects (short-term and long-term) and how can they be minimised? Is it possible that this can’t be determined and what then?
- How long will I need radiation?
- What type of cream do I need to use to protect my skin from getting burnt? Are there supplements that I should avoid when on radiation or anything else that can affect the outcomes? Are there medications that I can take to decrease side effects?
- How will I know if the radiation is working?
- Can treatment cause other problems, such as heart-, lung-, kidney damage, or fertility problems? Are there different radiation techniques that can be used to decrease this? Are there differences in machines and units? Do I have an option to go to another unit to access the facility and options? Yes.
- Will I have to receive other treatments at the same time and how will that affect radiation?
- Can I continue working/attend school during treatment?
- Do I need any tests during my radiation?
- How often do I need to have follow-up visits?
- How accurate is the radiation machine? Is there any risk of overdosing? How are the heart and lungs protected?
- In case of machine breakdown, is there any contingency plan in place for the continuation of treatment?
- Is the interruption of treatment due to any reason going to have adverse effects on my prognosis?
- When can I expose my skin to the sun, or water after my radiation ends? What else should I avoid?
- How bad is this cancer and what does it mean for me and my loved ones? Do I have access to counselling and family services?
- What is the expected survival for people with my type of cancer in your unit?
- How likely is it that the cancer will spread to other parts of my body? How will I know?
Support information questions
- What info is available on my cancer and its treatment, e.g. books, websites? What do you offer for reading?
- Are there complementary therapies that may be helpful or that are known to be bad for me? Do you have someone I can talk to about these treatments?
- Is there someone I can talk to who has been through this treatment?
- Are there support groups that can help me and my family deal with this illness?
- What can I expect from surgery, oncology, radiation treatment long-term, e.g. exercise, diet, work, sexuality?
After the end of surgery, chemo and radiotherapy, what is next?
- Who will oversee my case? Do you have a survivorship team that helps with my care and possible side effects of treatment? Who do I contact for what?
- How often will I need follow-ups and tests? Which doctors should I see when? What if info changes about the treatment I’ve had and if I need new treatment?
- Is there any special diet to follow? Who guides me about exercise and managing the sequelae of treatment?
- Do I need to take any special supplements?
- What can I expect in the future?
Finally find your Dr Strange. That sorcerer that you relate too, that understands the holistic aspect of cancer care of placing you, the patient, at the centre of the care wheel. Ensuring that the spokes around you, the axis, are a medical team of knowledgeable professionals that understand all aspects of cancer treatment and provide you with the insight to choose the direction of your cancer journey.
MEET THE 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.