The moment your doctor tells you that you have cancer is a very frightening and life-changing one. When I was told at Hamad Hospital in Qatar in January 2013 that the 1cm x 0.5cm lesion on the right side of my torso was a highly-dangerous skin cancer in the form of a nodular melanoma, it was a real shock, particularly as a dermatologist had told me only the month before that it was a far less threatening basal cell carcinoma. Two months later, a small hamburger-sized piece of skin tissue containing this small melanoma was removed in surgery and, since a CT scan and PET scan revealed that the cancer hadn’t spread, the crisis was temporarily over. However, in December 2015, a lump under my right arm turned out to be melanoma in two lymph nodes and, once again, I decided upon surgery to have them removed. It was at this point that the issue of post-operative treatment options became a reality. Fortunately, I’m the type of person who doesn’t blindly accept authority opinion and, instead, needs to research information myself, particularly where my health and life are at stake. However, what do you do if you’re not that kind of person? Well, I think you need to go into those appointments with your oncologist, armed with at least 10 key questions and a notepad (you might even want to ask your oncologist if you can record the conversation so you don’t miss anything), and listen carefully to his or her answers as it will help you determine their level of knowledge regarding the treatment plan they’re proposing for you and also how much they know about alternative and natural approaches. Although we’d like to think that we have the undivided attention of our oncologist, they are extremely busy people. Statista, a leading provider of market and consumer data worldwide, revealed that, as of March 2013, an average of 51.7 outpatients per week visited oncology clinics in the United States. Therefore, if you’ve been diagnosed with cancer, you also have to take some responsibility for your treatment, and asking these 10 questions is a good first step towards helping you select the treatment plan which is right for you.
- What do you think caused my cancer? Could it have anything to do with lifestyle choices? If your oncologist answers that it was just down to genetics or bad luck and didn’t have much to do with your lifestyle choices, you might want to question his or her knowledge and whether he or she is the right doctor for you. You should know, but not share with your oncologist to avoid lecturing him or her, that the latest research on the preventable causes of cancer (i.e. things you can change) in the US by the American Cancer Society found that cigarette smoking is responsible for 19% of all cancer cases, obesity stands at 7.8% and alcohol intake is responsible for 5.6% of cases. As low fruit and vegetable intake accounts for 1.9% of cases, this, when added to the obesity statistics, adds up to 9.7% of cancer cases resulting from an unhealthy diet. When other preventable causes of cancer like UV radiation, lack of exercise and Human Papillomaviruses infection are included, these seven preventable causes amount to 42% of cancer cases in the United States. The US-based National Cancer Institute attributes only 5%-10% of cancer cases to inherited genetic mutations so bad genes or bad luck have little to do with cancer.
- Is this a slow-growing or fast-growing cancer? If it’s a slow-growing cancer, you might have a lot more time than you realise to research your particular type of cancer and its staging in your body, and perhaps to also take a step back and really evaluate the treatment plan that your oncologist is prescribing for you. How he or she answers the questions in this post will provide you with some of the information you need to help you make the critical decision on your treatment.
- Can you recommend a facility where I can get a second opinion? While test results from blood tests, CT Scans, PET scans and so forth, will likely be the same wherever you go and might also prove expensive for some cancer sufferers, the recommended treatment plans may vary greatly. For instance, each year more than 20,000 women in the UK are diagnosed with hormone-receptor positive, HER2-negative, node-negative breast cancer. Around half of these patients undergo chemotherapy after surgery to stop the cancer returning. However, the recent TAILORx trial, involving more than 10,000 women, led by the Montefiore Medical Centre in New York, allows doctors to use an Oncotype DX test to predict the likelihood of the breast cancer coming back. Test results showed that only 30% of women with this particular form of early-stage breast cancer derive any benefit from chemotherapy treatment. So, one oncologist may prescribe gruelling chemotherapy for this kind of cancer, but another might not. That’s a pretty radical difference.
- What are the short-term and long-term side effects of the treatment that you’re proposing for me (i.e. surgery, chemotherapy, immunotherapy, radiation or other cancer drug)? Before I had my infected lymph nodes removed, I researched the side effects of lymph node dissection and decided that they weren’t sufficiently drastic to warrant not having it done. Although I have numbness under my right arm where 28 lymph nodes were removed and an occasional sense of stickiness there, thankfully, I’ve not experienced lymphodema; the build up of lymphatic fluid which causes swelling in the area where the nodes have been removed and which can be quite painful. My oncologist was also recommending a course of immunotherapy, but after researching the drug and discovering the awful side effects of Ipilimumab, I politely declined the treatment.
- Are any of these side effects life-threatening? I think it’s fair to say that most cancer patients know only the basic side effects of, say, chemotherapy; nausea, vomiting, lack of appetite, weight loss, fatigue, hair loss and, unsurprisingly, a pallid complexion. However, if your oncologist isn’t telling you about the sometimes catastrophic internal damage that chemotherapy drugs cause, then you’re not getting the full picture. Chemotherapy causes brain, heart, liver, lung, kidney, bladder and intestinal damage, hearing loss, internal bleeding and peripheral neuropathy which is a loss of sensation in your fingertips and toes that might be permanent. Chemotherapy also severely weakens the immune system which can lead to Sepsis, a life-threatening illness where the chemicals that the immune system releases into the bloodstream to fight an infection cause inflammation throughout the entire body instead. Chemotherapy drugs can also cause new cancers to form in the body. As far as immunotherapy is concerned, some of the side effects from Ipilimumab are also life threatening and include pneumonia, toxic epidermal necrolysis which is a severe peeling of the skin, and infection of the meninges; the covering of the brain and spinal cord. I was also deeply alarmed by what was written on the ‘National Comprehensive Cancer Network Guidelines Version 2: 2016 Melanoma’ document I was given by my oncologist which read ‘The recommended dose of Ipilimumab (10 mg/kg) was associated with adverse events which led to the discontinuation of treatment in 52% of patients. There was a 1% drug-related mortality rate.’ These life-threatening side effects of Ipilimumab merely cemented my decision not to take it.
- What drugs will I likely need to help me deal with the short-term and long-term side effects of the primary medication? Many cancer sufferers don’t realise that chemotherapy, immunotherapy and radiation treatments are extremely harsh on the body and so they’ll need to take additional medication to help them get through it. If we just consider the common side effects of Ipilimumab, the immunotherapy drug that I was offered, they include diarrhoea (for which I’d have been prescribed Imodium or Pepto-Bismol), nausea and vomiting (popular anti emetics to prevent nausea include Zofran and Compazine), itchy skin rashes (for which a topical corticosteroid cream or corticosteroid tablets would have been prescribed) and high temperature (which would’ve required paracetamol). Some of the medication for the side effects of Ipilimumab can be taken at home, but if these and other side effects become severe, then hospital treatment is required. Macmillan Cancer Support in the UK acknowledges the problem, stating that “We estimate around one in four (25%) people in the UK face poor health or disability after treatment for cancer.”
- What is the five-year disease-free survival rate for my specific diagnosis with your treatment protocol? It’s really important that you use these exact words as you want to know the five-year disease-free survival rate for your specific diagnosis if you undergo the treatment that the oncologist is prescribing. Disease-free survival is defined as the length of time after primary treatment for a cancer ends that the patient survives without any signs or symptoms of that cancer. What you don’t want is overall five-year survival rates which just means the cancer patient is still alive. They could be on life support but because their heart is beating at the five-year mark, they’re termed a “successful five-year survivor”. Overall survival in patients with cancer is defined as the length of time, usually expressed as five years, from either the date of diagnosis or the start of treatment that patients diagnosed with the disease are still alive. The overall survival rate for Ipilimumab was proudly trumpeted in an article on the Science Daily website as 18% after five years. When considering all of the very unpleasant side effects of the drug, such a poor prognosis wasn’t very encouraging for me, was it?
- Can I speak to some patients with the same cancer as me who you’ve treated and are cancer-free after five years? If you were booking a hotel for your holiday, you’d want to check out the customer reviews on a website like Trip Advisor or Booking.com before you decided to pay your money in advance to stay there, wouldn’t you? Well, why wouldn’t you do the same thing when you’re considering the far more important matter of a probably gruelling cancer treatment protocol and your chances of disease-free survival after it? This isn’t an unreasonable request to make of your oncologist, but even if they don’t want you to call their patients directly so as not to violate patient privacy, there’s absolutely no reason why your oncologist shouldn’t call some of their patients and ask them to call you.
- Would you undergo the treatment plan that you’re prescribing for me or recommend it to your family? I think this is a critical question because, so often, most oncologists, like almost everyone else, don’t put themselves in the shoes of others. Various articles have suggested that around 75% of physicians would refuse chemotherapy treatment for themselves and not recommend it for their family members due to its devastating effects on the entire body and the immune system, and its extremely low success rate, particularly on solid tumours. If you ask this question and your oncologist doesn’t answer right away, you should keep silent and not break the tension. If he or she says “yes”, you should watch their body language, and if you observe them changing position in their chair, crossing their arms, fidgeting, looking away or blinking nervously, they’re probably uncomfortable with that question and might not be telling the truth. You may want to ask yourself why you’d accept a particular treatment protocol your oncologist is prescribing for you but who wouldn’t take it themselves nor recommend it to their parents, spouse or children.
- How much do you know about alternative and natural approaches to treating cancer, and would you support me if I chose that option? When I asked my U.S. educated and trained oncologist at Hamad Hospital in Qatar how much he knew about a plant-based dietary intervention that I’d chosen as one approach to try and prevent cancer recurrence, he was honest enough to say he didn’t know anything about it. This wasn’t a surprise to me as medical schools in the US offer virtually no education on nutrition. A 2015 report in the Journal of Biomedical Education found that only 29% of medical schools offered their students the recommended 25 hours of nutrition education. However, he did reassure me that I would still have access to the recommended schedule of 6-monthly PET scan follow ups and appointments with him and his colleagues thereafter. This was, of course, exactly the right approach, but if your oncologist ridicules the vast number of alternative and natural approaches to cancer treatment available, some of which have shown remarkable results and outright cures (see some survivor video stories in the sidebar), without any knowledge whatsoever, and perhaps threatens you with withdrawal of access to them and the facility in which they’re employed if you don’t follow their treatment program, you should seriously consider continuing to work with them.
I hope this post has provided you with some valuable information and strategies that you can apply when dealing with your oncologist so that you can choose the treatment plan that’s right for you and approach it from a position of personal power, not blind obedience.