Receiving cancer care is hard. Receiving it during a pandemic is even harder.
I’m deeply sorry that you’re experiencing additional stress during these unprecedented times.
I am confident that I can help though. My goal here is to lighten some of the load by helping you prepare for your cancer care in ways that you may not be considering.
This is the forth and final post in this series. Each post addresses questions regarding cancer care in the time of Covid-19.
Here, we hope to give you some reasons to smile.
#4: Is there any good news for us? What’s the silver lining to all of this? (This post).
At last, some good news!
Immediate Good News: New Guidelines
So what has happened already? What has been put in place to improve cancer patients' odds of success during the pandemic?
Expert oncologists and surgeons, who work in large teams, have already produced several new guidelines for the NCCN—the National Comprehensive Cancer Network. Your oncologist can use these guidelines to direct treatment decisions right now. The speed with which this has been done is truly remarkable.
But first, why are new guidelines needed?
Your team of doctors is having to weigh decisions that they never have had to before.
In general, they are asking a simple question that often has complex answers: given the added threat of acquiring Covid outside your home, does it make sense to have you come to a doctor’s office, radiation oncology facility, a surgical suite or a chemo center right now?
In some cases, the answer is a clear yes. For some, the cancer is a significant threat to a patient’s life in the near term and it must be treated if the patient wants a chance at living a longer life.
In some cases, the answer is a clear no. In this case, the cancer is not a significant threat to a patient’s life in the near or medium term and treatment can be delayed with minimal risk.
In some cases, the answer lies in a difficult grey area. That is why these guidelines have been written. Large committees of expert oncologists want to help other oncologists classify different patients into various categories of risk.
A Hypothetical Example
Let’s say there is a patient who has been diagnosed with ER positive / HER2 negative breast cancer. It’s relatively early in the progression of the disease; the patient is currently at T1N0. (Please see this quick read on TNM staging if you don't know what that means).
This NCCN breast cancer guideline considers Covid as an additional variable. It tells a breast surgeon not to remove this tumor until the Covid crisis has ended. That’s because the patient’s risk of acquiring Covid while going in for surgery is higher than the risk of having the cancer mature and spread. (If, by chance, this sounds like you, do not take my example as advice. I am not a doctor and you should speak with your own about your choices).
Let’s say a patient with the same type of breast cancer is at a different stage. She is at T2N1 (a cancer that has a larger tumor that has spread to between one and three lymph nodes near the breast). In this case, they’ll still delay surgery but suggest that the oncologist considers starting hormonal treatment.
In cases with more advanced cancers, such as a T3N3M1, the treatment guidelines become more likely to suggest treatment—at least if treatment is still likely to have a positive impact on the patient’s length and/or quality of life.
I can’t stress this enough: it’s absolutely wonderful that these new guidelines have been published so rapidly. For most oncologists, making these decisions based on their own hunches is both difficult and dangerous; it helps to have sixteen brains making complex decisions as opposed to just one.
A Real Example
I’ll give you an example of how these wonderful guidelines have affected my own life.
My grandfather died from prostate cancer in 2003. Because family history of the disease increases risk of prostate cancer, I am proactive with prostate cancer screenings.
Last year, when I went in, my PSA (prostate specific antigen) level was high, which puts me at a higher risk. Although the PSA value wasn’t high enough to require a biopsy, my urologist instructed me to have my PSA checked every six months.
(Quick tangent: I acknowledge that the PSA test isn't a great predictor of metastatic disease and probably leads to over treatment of benign prostate cancers. Some day I'll write a post on 4k, PHI, Gleason scores, diffusion-weighted MRI and all the advanced technologies that should be used much more often than they currently are).
The next appointment was scheduled for February 26th, just as the coronavirus was starting to spread. There were Covid patients in the hospital where I was to have my labs done, so I wondered whether or not it made sense to go in.
There was a simple key question that needed to be answered. If I were to have prostate cancer on February 26th, would the downside of delaying the diagnosis be so large that exposure to Covid was worth it?
While most of the NCCN guidelines are treatment focused, there is a prostate cancer screening guideline, a section of which is shown here:
The language is fairly simple. After the orange arrow in the exhibit, it says to “defer” patients like me who have an “elevated PSA and/or abnormal DRE”. (The acronym “DRE” stands for “digital rectal exam,” which is defined in an earlier part of the guideline. "Digital" isn't a computer reference here ... it's a digit ... as in a finger).
So did I stop there? Did I unilaterally make the decision for myself after reading this information? Heck no I didn’t! I’m not a doctor!
There could have been some other factor that pushed me into the “rare and exceptional” category—something that I wasn't considering. (See the blue arrow in the exhibit). I am highly literate in the medical sciences, but I still needed to have my belief validated by my doctor as there were several unwritten possibilities that could have changed the equation.
In the end, there wasn’t anything in my medical history that pushed me into the more extreme category. So my doctor and I will touch base in a few months as the Covid situation plays out. (I should mention this is not the 2019 cancer scare I had that's referenced in several places around the Serenity website. That scare did include a tumor removal … I’ll save that story for another blog at another time).
NCCN Treatment Guidelines have now been written for breast, colorectal, melanoma, non-melanoma skin cancers, non-small cell lung cancers, prostate cancers, t-cell lymphomas and primary cutaneous lymphomas. You’ll find them on this page, under the heading “Treatment of Cancer by Site.”
The NCCN can’t do it all alone though. Additional guidelines have been written by a wide variety of legitimate sources. I have not written out the source in the interest of brevity, but you can just click on the link to see the source and the guideline content. (As you'll see, some organizations have written additional guidelines on some cancers even though the NCCN already did so).
· Gastrointestinal (this is a broad category of cancers including stomach, colon and pancreatic cancers),
· Hematological (blood),
· Hepatocellular (liver) and
· Lung cancer.
Five Tips On The Guidelines
1. This is the primary goal: ensure that your doctor knows that these have been written. Not all of them are aware of it. The guidelines will help them make better decisions.
2. If your cancer isn’t listed on this blog, please check the main page of the NCCN guidelines frequently to see if the research oncologists have updated protocols for you.
3. The guidelines should be interpreted in the context of your well-defined treatment goals.
Let’s say your tumor has progressed significantly and you’ve been given a terminal prognosis, but it’s very important that you meet your first granddaughter who is expected this August—even if it’s via video conference. In that case, it may be acceptable to you to go in for more chemo even with the additional risk of acquiring Covid, as having more chemo could keep you alive long enough to meet your granddaughter.
Or, perhaps you feel like you’ve led a wonderful life and the additional risk of getting Covid (which may end your life quickly) isn’t worth it even though another round of chemo might extend your life by a few months.
Regardless of what the guidelines say, it’s critical that your doctor takes your goals into account while conducting shared decision making. (A good guide on shared decision making is here).
4. These guidelines are written for the average patient. While there could be good reasons why your oncologist doesn’t want to follow them for your particular cancer, it’s fair to ask your doctor if s/he is deviating from the guideline and if so, why.
5. Optional: Try to read your guideline. If you see words you don’t understand, google them. I often say “diaphoretic just means ‘sweaty’”. Don’t be intimidated and dive in. The more educated you are about your condition, the better off you’ll be. That said, the risk of guideline misinterpretation, for some people, is large. So do not make decisions without the guidance of your physician. (Remember, I sought out my doctor’s opinion after reading my own prostate cancer guideline).
More Good News: Future Guidelines
The people who typically work behind the scenes to make your life easier are now working harder than ever.
ASCO, the American Society of Clinical Oncology, launched a big study that looks at how Covid affects cancer patients.
They launched this endeavor—a very large study—at a historically fast pace.
The study allows oncology practices around the country to log patient data through a portal. The data being collected includes your home zip code, date of birth, gender, race, ethnicity, type of cancer, and comorbidities (those are the diseases you have other than your cancer). Additional data will include the patient’s Covid-19 status, including symptoms, treatments, and outcomes. Finally, the patient’s current cancer status, including treatment plans, any changes to treatment plans, and response to treatments will be taken into account.
This will provide ASCO with a wealth of information that they will use to assess how treatment protocols are working for various types of cancer. Several months from now, you may benefit from this data collection. Your oncologist may be able to say, “Mrs. Wright, because you acquired Covid over the summer, and you have non-small-cell lung cancer, we would like to change your treatment regimen to another chemotherapy. We are confident that this is a good course of action because data from the ASCO study indicates that you’ll likely have a better response to this drug instead of what we had you on.”
It’s impossible to overstate how remarkably fast ASCO pulled this off. In my former career, I was sometimes involved in clinical study design (that was much smaller in scope and complexity than this) and it would take many months, if not years, to develop and implement a research protocol. I take my hat off to ASCO for their wonderful effort.
Long Term Good News: Our Understanding Of Viruses
The existence of this new coronavirus will indirectly help some cancer patients over the long run. That’s not a typo. It’s highly likely that coronavirus will help some cancer patients.
As the Covid crisis unfolds, scientists worldwide are shifting their laboratories to focus on finding better diagnostics, improved therapies and new vaccines for this virus. Geneticists who have never looked at viruses now are doing so. Computer scientists who use artificial intelligence to discover new drugs, who have never focused on viral diseases, now are. Molecular biologists who used to just think about bacteria or fungi are now examining viruses for the first time. I would venture a guess that there are tens of thousands of scientists that have shifted their focus towards virus research.
This new era of virus research will lead to new discoveries that help with coronavirus and other diseases, including cancer. This frequently happens in scientific research. A scientist will be studying one aspect of his or her specialty, and a shocking, unexpected result occurs. They yell “SERENDIPITY!” and start to explore a new line of research.
All the added focus on viruses will help us deepen our understanding of not only how bad viruses cause cancer but also, paradoxically, how good viruses can be used to fight cancer.
This may sound dubious on the surface. But consider a few facts about viruses:
First, some cancers are caused by viruses. Cervical cancer is caused by particular strains of HPV, the human papilloma virus. HPV can also cause anal, penile, throat, vaginal and vulvar cancers. Hepatitis B and C Viruses are leading causes of liver cancer. Even HIV increases the risk of some cancers. To be clear, not all cancers are caused by viruses. Nevertheless, the entire catalog of “oncoviruses,” the viruses that cause cancer, is actually much longer than what I’ve listed here.
Perhaps a better understanding of molecular virology will lead to new treatments for liver cancer. Perhaps a new method to image these tiny structures will allow us to “see” into cancer cells in a more profound, helpful way. We don’t know what will be discovered, but discoveries will surely be made.
Second, not all viruses are bad. Some viruses, that are engineered in a laboratory, are used to change the surfaces of certain immune system cells (T-cells) so that they can more effectively attack cancer cells. (This is known as CAR-T therapy. You may have heard of it. There’s a simple video from the Dana Farber Institute on it here). Moreover, viruses can be used to deliver healthy genetic material into diseased cancer cells. This is what a “gene therapy” is. Improving our knowledge of viruses will almost certainly improve the success of both of these types of therapy.
This of course doesn’t mean that we’ll have new therapies right away because of Covid, but over time, it’s highly probable that a cancer patient diagnosed today will benefit from our newly enhanced knowledge of virology.
In summary, there are new guidelines that help us now. Ongoing research will augment those guidelines, taking Covid into account. And in the coming years, Covid research will indirectly yield new virology discoveries that will help cancer patients. If these little bits of good news are even mildly comforting to a few you, I'll have accomplished my goal today.
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