Understanding recurrence and other cancer terminology
By Kathryn E. Vinson, MS, CCRC
When we are diagnosed with cancer and begin our journey in the house of horrors known as Cancer-Land, we are introduced to an entirely new set of terms. Treatments come in all forms, from IVs to oral meds to radiation. Our diseases are studied microscopically, staged, and sometimes even genotyped. All of these are terms that we may have heard before, but never gave a whole lot of thought. What likely does come to each of our minds is, “What is it gonna take to cure this nasty disease?” Today I want to take some time to talk with you about some of the entries in the lexicon of cancer terminology, and how we can use the terms to better understand our diseases, treatments, and prognosis.
Can it be cured?
First thing out of the gate, that’s what we all want to know. Can you cure my cancer? Using the term “cure” in terms of cancer is tricky. When we say a disease is cured, we mean that it is never coming back. Think of it this way – when your kid comes down with strep throat, the doc prescribes any of a number of antibiotics, and boom – bacteria gone, strep cured. (Yes, you can get it again if exposed again – but for all intents – that case of strep is cured).
Here’s the problem with saying that with any type of cancer. While our treatment teams do their utmost to make sure that every single cancer cell is gone – its pretty hard (dang near impossible) to say that you got 100% of the nasty cells. Here’s an example – when I had my thyroidectomy for thyroid cancer, the docs got the majority of the thyroid cells in the surgery. They can’t get them all without causing permanent damage to the parathyroid glands or to the recurrent laryngeal nerve (it enervates the larynx, enabling speech). That is why many doctors recommend radioactive iodine therapy after the thyroidectomy. The purpose of that is to “clean up” any remaining thyroid tissue or thyroid cancer cells that are left in the body. In my case, it did a pretty good job, but that isn’t the case for everyone.
So, rather than saying our cancer has been “cured”, we talk about “no evidence of disease (NED),” and partial or complete remission. Some docs do say that you are cured after five years of NED or complete remission, but it is walking a very fine line. While most recurrences happen within five years, they can still come back past that timeframe.
Dealing with anxiety
Let’s say you hear those lovely words from your doc – no evidence of disease. Its one of the most fabulous phrases you can hear after receiving a cancer diagnosis. But what now? Cancer Therapy Advisor tells us that about 7% of cancer patients develop anxiety about a recurrence that is significant enough to interfere with their daily lives. Having been diagnosed with cancer in the past, we find ourselves analyzing and over-analyzing everything. My youngest son developed a ganglion cyst on his foot after dropping something on it. You all know what went through my brain when I saw it, despite being 99% sure that’s what it was.
The chances for recurrence for differentiated thyroid cancer is 30%. As such, I still go in for annual ultrasounds of the lymph nodes in my neck. I go in for lymph node biopsies in the years that they aren’t stable. Waiting for the radiology/pathology reports is grueling. You feel in your heart that everything will be fine, but you’ve had the rug pulled out from under you before. One year, my doc called me on Christmas Eve to let me know the biopsies were negative – she didn’t want me worrying over the holiday – which I was – completely freaking out. Turned out to be the best Christmas ever.
These anxieties are real and can affect so many aspects of our lives. Its easy to say, “Gee Kathryn, chill out! Everything is going to be fine,” but actually doing so is an entirely different matter. If you find yourself dealing with anxiety over recurrences – don’t hide it and don’t be ashamed. Talk to your physician about it. He or she can talk about your actual chances of recurrence, can recommend a therapist to speak with, or there are prescription medications that can help with anxiety. Just promise me – don’t try to hide it or pretend its no big deal. Your mental health is everything!
Is it back, or is it a new cancer?
If you do develop cancer again, you may wonder – is this a recurrence or is it a new cancer? For some of us, the treatments used to kill the cancer leave us susceptible to new cancers. An example is thyroid cancer – the radioactive iodine pill that I had to swallow puts me at a higher risk for stomach and bladder cancer than the general population. Fun stuff, huh? The way your docs will know is by looking at it under the microscope. Thyroid cancer that has traveled to the bones will look different under the scope than actual bone cancer. If you do develop a second primary cancer, it will likely be treated differently than your first primary cancer, as each cancer has specific treatments.
As far as the chances for recurrence goes – this varies greatly depending on a lot of factors. Your overall health, the stage at which your cancer was diagnosed, exact type and subtype of cancer, hormone receptor status, and a lot of other factors come into play when we discuss the chances for recurrence. Below you will see some numbers about recurrence chances. Just as we take 5-year survival rates with a grain of salt (as standards of treatment can change over five years), we also must take these numbers in a similar manner. All of those factors that I listed above can change these numbers. The table below is directly quoted from Cancer Therapy Advisor:
| Cancer Type | Recurrence Rate |
|---|---|
| Bladder5 | 50% after cystectomy |
| Breast10,16 | 30% overall 5% to 9% with letrozole or placebo during median 10.6 years |
| Colorectal17 | 17% after curative surgical resection with microscopically clear margins |
| Glioblastoma2 | Nearly 100% |
| Head and neck, stage IV18 | After intensified, split-course, hyperfractionated multiagent chemoradiotherapy: 17%, locoregional 22%, distant |
| Hodgkin lymphoma13,14 | 10% to 13% after primary treatment 20% to 50% after second-line treatment |
| Kidney11,19 | 13% 49% after complete response to tyrosine kinase inhibitor therapy |
| Leukemia, childhood ALL20 | 15% to 20% |
| Leukemia, childhood AML15 | 9% to 29%, depending on risk |
| Lymphoma, DLBCL8 | 30% to 40% |
| Lymphoma, PTCL9 | 75% |
| Melanoma21 | 15% to 41%, depending on stage 87%, metastatic disease |
| NSCLC22,23 | 26% after curative surgery 27% after chemoradiotherapy for locally advanced disease |
| Osteosarcoma12 | 11%-12% local recurrence 5%-45% metastasis |
| Ovarian3 | 85% |
| Pancreas6,7 | 36% within 1 year after curative surgery 38% local recurrence after adjuvant chemotherapy 46% distant metastasis after adjuvant chemotherapy |
| Prostate24 | After prostatectomy at 10 years: 24% low-risk disease 40% intermediate-risk disease 48% high-risk disease |
| Soft tissue sarcoma4 | 50% after adjuvant chemotherapy Nearly 100% for advanced disease |
| Thyroid25,26 | Up to 30% for differentiated thyroid carcinoma 8%-14% after surgery for medullary thyroid carcinoma |
Source: https://www.cancertherapyadvisor.com/home/tools/fact-sheets/cancer-recurrence-statistics/
If you or a loved one find yourself facing a cancer recurrence, remember that you aren’t alone. Reach out to cancer associations, support groups, and search for local cancer resources that can help you as you set off on another leg of your cancer journey.
As always, much love, many prayers, and abundant blessings to all of the warriors out there!
Sources:
https://www.cancertherapyadvisor.com/home/tools/fact-sheets/cancer-recurrence-statistics/
https://www.cancer.gov/about-cancer/diagnosis-staging/prognosis
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