How to Respond to Unsolicited Cancer Advice

Almost everyone who sends you an article about a clinic in another country, a fruit seed, a diet, or a supplement is doing it because they are frightened for you and cannot think of anything else to offer. That is worth holding onto, because the alternative reading — that they think you and your oncologist are fools — makes every conversation a fight and costs you people you may need later.

It is also worth being clear that the advice is not harmless just because the intention is good.

NCI separates three things:

• Complementary — used alongside standard treatment, such as acupuncture to lessen side effects.
• Alternative — used instead of standard treatment, such as a special diet in place of prescribed cancer drugs.
• Integrative — conventional care combined with complementary approaches that evidence supports, delivered as part of your cancer care.

Most of what people press on you sits in the complementary category and is a question of interaction and cost. The serious risk is substitution.

Two studies from the same research group, published in 2018, examined this directly using a national cancer database.

The first, in the Journal of the National Cancer Institute, identified people with non-metastatic breast, prostate, lung or colorectal cancer — cancers where treatment is given with the aim of cure — who chose unproven alternative therapy and no conventional treatment. Matched against comparable patients who had conventional treatment, alternative medicine use was associated with a hazard ratio for death of 2.50. By cancer type, the hazard ratios were 5.68 for breast cancer, 2.17 for lung cancer and 4.57 for colorectal cancer. A hazard ratio above 1 means death happened more often in that group. This was an observational study, so it shows an association, not proof of cause.

The second, in JAMA Oncology, looked at people using complementary medicine in addition to conventional care. They had a higher risk of death too — but the analysis pointed to why. They refused recommended treatment far more often: surgery 7.0 percent versus 0.1 percent, chemotherapy 34.1 percent versus 3.2 percent, radiotherapy 53.0 percent versus 2.3 percent, hormone therapy 33.7 percent versus 2.8 percent. Once refusal or delay of treatment was included in the analysis, the association with death was no longer significant (hazard ratio 1.39, confidence interval 0.83 to 2.33).

The honest summary: in this study, complementary use alongside full treatment was not itself shown to shorten life. The authors concluded the higher risk of death was mediated by refusing conventional treatment. That is the sentence to keep in mind when someone suggests trying their approach "first" and doing chemotherapy "if it doesn't work" — going without the treatment that works is the risk.

NCI is explicit that no diet, food, vitamin, mineral, supplement or herb has been shown to slow, cure or prevent the return of cancer. It also says some products change how treatment works. St John's wort is named as one that can make certain cancer drugs less effective. Long traditional use does not establish safety. Bring the bottles, or photographs of the labels, to your next appointment and let the team check the list.

The all-purpose close:

"Thank you for caring enough to look into this. Everything goes to my oncology team before I take it."

When they persist:

"I know you mean well. I've decided how I'm treating this, and I'm not reopening it. What would really help is a lift on Thursday."

When it comes with a story about someone who was cured:

"I'm glad they did well. Every cancer behaves differently, and mine has a plan that fits it."

When they imply you are not trying hard enough:

"I'm doing the treatment with the best evidence behind it. That is trying hard."

When it is someone close:

"Come to my next appointment and let's ask the oncologist about it together."

Redirecting the energy:

"The thing I actually need is meals on treatment weeks. Could you take one?"

Wanting to do more than sit and wait is reasonable. The evidence-based versions are integrative oncology services within cancer centers, exercise and nutrition programs, symptom-management referrals, and clinical trials — including trials of new agents you would not otherwise have access to. Ask the team what you are eligible for.

• Johnson SB et al. Use of Alternative Medicine for Cancer and Its Impact on Survival. JNCI 2018;110(1):121-124
• Johnson SB et al. Complementary Medicine, Refusal of Conventional Cancer Therapy, and Survival Among Patients With Curable Cancers. JAMA Oncol 2018;4(10):1375-1381
• National Cancer Institute — Complementary and Alternative Medicine
• PubMed record: Johnson SB et al. JNCI 2018 (PMID 28922780)
• PubMed record: Johnson SB et al. JAMA Oncol 2018 (PMID 30027204)