"You’re committing suicide."
That was the chilling statement delivered to one of my friends when she told her oncologist she was considering skipping the chemotherapy he’d recommended.
My friend’s no fool; she’s an intelligent, well-educated woman. She’d done her homework, carefully researching her particular cancer, studying her pathology report, and listening as her oncologist outlined his treatment plan, and how much each protocol - surgery, chemo, radiation, and hormone therapy drugs - would reduce her risk of recurrence.
She’d also read all she could about side effects from each of those treatments: what they were, how likely they were to occur, and whether they were temporary, or permanent.
After all of this research, she’d come to the conclusion that the benefits of surgery, radiation, and hormone drugs outweighed their potential side effects; but not so those of chemo. She decided the added benefit of chemo, statistically speaking, wasn’t enough for her to risk its side effects.
Being a woman with a positive outlook, one not prone to second-guessing, she figured she’d take the chance and skip chemo.
But when she told her oncologist her decision, he replied with anger and scorn. And left her feeling unheard, under-valued" and uncertain.
Was she REALLY making the right decision?
As breast cancer survivors, we know that the disease itself isn’t usually painful; it’s the treatments that are difficult. In fact, some treatments are so difficult that they make you wonder whether they’re actually worth it.
Chemo is the main culprit. The hair loss is devastating, but temporary. It’s the other side effects - those with potential to last for years, or forever - that make you stop and think.
Many women experience neuropathy: tingling in the hands and feet that can be alternately annoying, painful, and sometimes downright dangerous, when it affects balance and the ability to grasp things. Neuropathy can last just a few months - or it can be permanent.
And how about that Neulasta shot the day after your infusion? It strengthens your immune system, and reduces your risk of infection. But for many of us, it also produces incapacitating bone pain. Pain so bad it prevents work, pleasure, or doing anything else beyond gritting your teeth and getting through it.
Most oncologists are loath to back off on treatment due to side effects; after all, it’s their job to save your life. But it’s YOUR job to weigh sometimes excruciating, often debilitating side effects against their possible benefit.
How do you decide whether to skip chemo, or stop taking Arimidex? And how do you talk to your oncologist about your decision, without leaving the office feeling like you’ve been beat up emotionally - or simply dismissed as weak?
First, understand where your oncologist is coming from. Of course s/he wants you to follow "doctor’s orders." After all, your oncologist is a highly trained professional, someone who’s studied cancer for years; someone with access to information on the latest, cutting-edge treatments.
Your oncologist’s goal is to cure your cancer; or if not to cure, to prolong your life. By any means possible.
But here’s where it gets tricky. What if "any means possible" includes treatment that may severely impact your everyday life - not just temporarily, but permanently? Isn’t it your responsibility to decide whether the benefit of treatment is work its risk?
Yes, it is. And here’s how to approach this challenging decision.
First, get your hands on all the information you can. Ask your oncologist for a complete rundown of your suggested treatments, including the following information:
-What does the treatment entail, including duration, procedures, and drugs?
-What are its side effects, and what percentage of women experience each?
-Statistically speaking, how much will this treatment reduce your risk of recurrence, and/or increase your survival rate?
Speaking of statistics, make sure you understand the doctor when s/he gives you these figures. There’s relative risk, and absolute risk; and they’re very different. For an easy to understand explanation, please read Risks and Benefits: Understanding the Statistics that Affect You.
Next, make sure you understand completely the possible benefit of each treatment. For instance, a mastectomy reduces your risk of cancer in the affected breast by 90%; but in many cases it doesn’t increase your survival rate, compared to lumpectomy/radiation.
And chemotherapy may be the treatment of choice for many women with your diagnosis: say, stage 2 IDC. But how well will it work for YOU? Oncotype-DX is a personalized assessment test for chemo; if your doctor hasn’t offered it, ask if you’re a candidate.
Then, look into your own heart, and judge your personality. Be truthful, now; this is important. Are you a worrier and a second-guesser, someone who has trouble feeling comfortable with important decisions? Or are you comfortable with making a choice and, if it doesn’t work out, going forward without guilt or self-recrimination?
If the former, you’ll probably want to take your doctor’s advice, and go with the recommended treatment. If the latter, it’s probably worth "going with your gut" - bypassing a particular treatment, thus avoiding any chance of its side effects; but potentially raising your risk of recurrence.
Finally, how do you tell your oncologist you’ve decided to skip chemo?
Bravely. It’s not easy to speak your mind to an authority figure, and that’s surely the way we all feel about our oncologists. But if you believe you’re doing what’s right for YOU, look the doctor in the eye, and speak your piece:
"I understand the treatment you recommend may reduce my risk of recurrence. I’ve researched this, thought hard and long about it, discussed it with my family and friends, and have come to the conclusion that for me, the benefits of this treatment aren’t worth its risks. I’m willing to accept the consequences of my decision."
Then listen quietly while the doctor responds. If you hear new information that may change your mind, tell the doctor you’ll think about it. If not, simply say thanks, and move on.
Hey, no one ever said cancer is easy; the emotional torment is often as great (or greater) than the physical pain. But taking the time to research your treatment options, and all that they entail - both good, and bad - is worth the effort.
PJ Hamel is senior digital content editor and food writer at King Arthur Flour, and a James Beard award-winning author. A 16-year breast cancer survivor, her passion is helping women through this devastating disease. She manages a large and active online survivor support network based at her local hospital and shares her wisdom and experience with the greater community via HealthCentral.com.