This year almost 1.4 million South Africans will hear the words “You’ve got cancer,” and in an instant their lives will be changed forever.
It is common for those who have just been diagnosed to be overwhelmed with all the information being thrown at them: the facts, figures, statistics and the choices you are suddenly being expected to make.
But the choices you make are critical and they may impact the rest of your life.
What’s the most important things newly diagnosed patients can do to maximize their odds of beating cancer? Doctors, patient advocates, and cancer survivors were asked this question and these are some of the most important steps and advice on what to do next.
Not All Breast Cancers Are Created Equally
Know Exactly what you are dealing with and get all the facts on what relates to you personally. Find out the name of the cancer, its size and location, where it started, and if it has spread. Learn whether it’s viewed as a slow-growing cancer or an aggressive one.
“I have seen people waste a lot of precious time researching the wrong thing because they didn’t really understand their cancer,” says Joan Arnim, who manages the patient advocacy program at Houston’s M.D. Anderson Cancer Center. “It is often a good idea to ask your doctor for recommendations about where to get information about your particular cancer.”
Your oncologists or doctor will help you to understand three specific characteristics of your cancer and how those characteristics impact will impact your treatment options:
The stage of a person’s cancer describes how advanced the cancer is based on the size of the primary tumor in the breast and the extent to which it may have spread to other locations in the body. Staging is expressed on a scale of zero to four, with larger numbers indicating more advanced disease.
Tests are also performed on breast cancer tissue samples to determine whether the tumor is driven by the hormones estrogen or progesterone.
Tumors that are sensitive to these hormones, called hormone receptor-positive, tend to grow somewhat more slowly, and may respond better to hormone suppressing treatments than tumors that are receptor-negative.
The pathologist will also report whether a patient’s tumor tissue sample tests positive for human epidermal growth receptor (HER2), a protein that influences the growth and spread of cancer. Like hormone sensitivity, HER2 has important treatment implications. A targeted treatment called trastuzumab (Herceptin) has been shown to be effective against cancer that is HER2-positive.
Get A Second Opinion
It’s always reasonable to seek a second opinion from an oncologist if you were diagnosed by your GP. While second opinions are reasonable, don’t waste time by going to six or seven different specialists who may all tell you the same thing. If the two opinions are similar, it’s likely that all other cancer specialists will tell you the same thing.
Know your comfort level on details & bring in a second pair of ears
It’s up to you to decide how much detail you want to know or can handle. Some people may only want a ‘big picture’ view while others want to know exactly how the operations will work. There’s no shame in admitting something is too overwhelming. And there is no need to torture yourself by forcing yourself to watch surgeries online if you can’t handle it.
Taking in information can be difficult, especially when you have just been diagnosed. It’s a good idea to bring someone along to appointments for not only support but to act as another set of ears. A friend is often better than a close family member in this support role, because family members are often as upset as the patient.
Christina Koenig of Y-ME recommends bringing a tape recorder to doctor’s appointments (if everyone in the room agrees)
“I’ve had people tell me that after the first five minutes they didn’t hear a thing their doctor was telling them,” Christina said.
Christina also recommends writing down your questions before meeting your doctor. It’s easy to miss a question or get side tracked once you’re at the appointment. Ask your doctors and nurses to explain things again if you need them to. Remember that you don’t have to sort everything out at once. It might take some time to deal with each issue. Ask for help when you need it.
Questions to Ask Your Doctor
About your diagnosis
- How big is the tumor?
- Exactly what type of breast cancer do I have?
- Where exactly is the tumor located?
- Has the cancer spread to my lymph nodes or other organs?
- What’s the stage of the cancer? What does that mean?
- Will I need any other tests before we can decide on treatment?
- Do I need to see any other doctors or health professionals?
- What is the hormone receptor status of my cancer? What does this mean?
- What is the HER2 status of my cancer? What does this mean?
- How do these factors affect my treatment options and long-term outlook (prognosis)?
- What are my chances of survival, based on my cancer as you see it?
- How do I get a copy of my pathology report?
- Are these tests covered my medical aids?
About Your Treatment
- What are my treatment choices?
- What treatment do you recommend and why?
- What would the goal of the treatment be?
- How soon do I need to start treatment?
- How long will treatment last? What will it be like? Where will it be done?
- Should my biopsy tissue be sent for a gene expression test to help decide if chemotherapy might be helpful for me?
- How should I get ready for treatment?
- What risks or side effects are there to the treatments you suggest? Are there things I can do to reduce these side effects?
- How will treatment affect my daily activities? Can I still work fulltime?
- Will I lose my hair? If so, what can I do about it?
- Will I go through menopause as a result of the treatment? Will I be able to have children after treatment? Would I be able to breastfeed?
- What are the chances the cancer will come back (recur) after this treatment?
- What would we do if the treatment doesn’t work or if the cancer comes back?
- How will we know if the treatment is working?
- What symptoms or side effects should I tell you about right away?
- Will I need to change what I eat during treatment?
- Will I need special tests, such as imaging scans or blood tests? How often?
Surgery as a Treatment Questions
- Is breast-conserving surgery (lumpectomy) an option for me?
- What are the positive and negative sides of breast-conserving surgery versus mastectomy?
- What side effects might lymph node removal cause?
- How long will I be in the hospital?
- Will I have stitches or staples at the surgery site?
- What will my breasts look and feel like after my treatment? Will I have normal feeling in them?
- What will the scar look like?
- What types of reconstruction might be options for me?
- Can I have reconstruction at the same time as the surgery to remove the cancer? What are the reasons for and against having it done right away or waiting until later?
- Do I need to stop taking any medications or supplements before surgery?
- When should I call your office if I’m having side effects?
After Treatment Questions
- Will I need a special diet after treatment?
- Will there be any limits on what I can do?
- What should I do if I notice swelling in my arm?
- What type of follow-up will I need after treatment?
- How often will I need to have follow-up exams, blood tests, or imaging tests?
- How will we know if the cancer has come back? What should I watch for?
- What will my options be if the cancer comes back?