For decades, many patients, their children, and grandkids have strived to answer, “What is cancer?” As a doctor and scientist, over the past 16 months, I have learned the latest cancer information from experts at Cedars-Sinai in Los Angeles and MD Anderson in Houston. With that, I have also become aware some patients are either denied state-of-the-art care or just kept in the dark about potential treatment because it is too costly.

First, a lesson in Cancer 101. Human cells multiply at the direction of DNA. For instance, if you have a laceration, the healing process covers the wound with a scab and then heals from below. Once complete, a “stop button” halts the cell DNA multiplication process… and the wound is healed!

Cancer is when the stop button is faulty, possibly because of a DNA mutation. Cells then multiply out of control … cancer.

Up to now, cancer treatment has utilized surgical resection, radiation, or chemotherapy, which removes or kills cancer but also adversely affects healthy cells. That’s why these treatments can get you sick from side effects.

Over the last decade, we have analyzed DNA and found mutations in cancer cells. In addition, “targeted” medicines have recently been developed that correct mutations and allow the stop button to function again, curing cancer.

Nowadays, when a biopsy of cancerous tissue is obtained, that tissue can be analyzed for “biomarkers” to determine whether there is a mutation and even suggest a drug that might stop the cancer from multiplying.

Here’s the catch: not all hospitals and insurance companies provide this analysis.

Sixteen months ago, cancer was found in my partner, Robin, and Cedars-Sinai provided not only a pathology report but also her biomarker analysis. This revealed a mutation and even designated medication that might be used to treat it.

This information was used by doctors at Cedars-Sinai and MD Anderson to contour appropriate care using targeted medication against her cancer. Every day, new medication is developed, and hopefully, one day, all cancers might be treated with targeted drugs.

Let’s revisit the inequality in health care. Some hospitals and insurance companies do not offer biomarker analysis for their patients. The reason? The cost.

Fortunately, the extra cost for biomarker analysis I have found in my research is under $300. Not much to save a life! But the overall treatment cost comes later as the new targeted cancer medication could be as much as $20 to 30,000 per month. Aha! That’s why!

Right now, though, many pharmaceutical companies are providing significant discounts for these targeted medications as they are still gathering evidence-based data to use these drugs in the future as first-line treatment, possibly replacing surgery, radiation, and chemotherapy.

Here’s another piece of information that most patients and doctors don’t know: New tests examine blood for cancer cells, ctDNA (circulating tumor DNA). Robin is in a clinical trial at MD Anderson, which they used in conjunction with a PET/CT scan revealing metastasis and consequential use of targeted cancer treatment.

After four weeks of targeted treatment, a repeat PET/CT scan and ctDNA blood test revealed undetectable cancer. Four weeks!

Because of side effects, she had to stop the medication and later go to a lower dose, but at least we saw a halt in the cancer cell multiplication. Indeed, this treatment seems promising, guided by the up-to-date initial information from the biomarker analysis and ctDNA blood test. Without this information, we would not have had much hope.

Therefore, adding to Cancer 101, if you have been recently diagnosed with cancer, you and your doctor should do the following:

• Look at the tissue biopsy pathology report for a biomarker analysis. It could be designated using other terminology like genetic testing, tumor testing, genomic or genomic profiling, molecular or molecular profiling, somatic testing, or tumor subtyping. At Cedars-Sinai, it was called CS Comprehensive Cancer Plus;
• If a biomarker analysis has not been done, ask if insurance will cover the cost;
• If they won’t, contact the insurance company and ask for approval;
• If they don’t pay for it, open your wallet as it will be the best investment you could make for yourself or a loved one (as I mentioned, right now, it is usually under $300);
• If there is a biomarker analysis, you must find a specialist (oncologist) who can best interpret the information. Typically, they are at teaching institutes. Right now, most primary care doctors are not up-to-date in deciphering this data;
• Ask your doctor if a ctDNA blood test is available, which could provide valuable information concerning your workup or treatment plan.

The road you then travel will be at the edge of modern technology, so you might consider information obtained not just from your doctor but also online (although vetting is essential);

We also joined online social and support groups, which are very helpful, especially emotionally.

In California, a recent proposal signed into law in 2023, SB 496, mandates cancer pathology reports in MediCal patients (Medicaid) have tumor biomarker analysis provided.

Frustratingly, only a small percentage of VA pathology reports have these analyses done, which does not reflect good enough care for those who have served our county. Maybe we can correct this legally on a federal level in 2024 or 2025.

Cancer is the second leading cause of death in the United States. New medical technology can lower these numbers, but the public must have adequate information to make appropriate medical decisions. Cost will always play a role, but every citizen must have a Cancer 101 education and an equal opportunity to receive treatment.

Hopefully, my grandchildren will one day ask me, “What was cancer, Grandpa?”

Gene Uzawa Dorio is an internal medicine physician who blogs at SCV Physician Report.