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Notable News July 2019

So much for the dog days of Summer. July was a super active Notable News month full of information. There are risks and recalls to be aware of, along with some very encouraging news about exciting new research and treatments. So, while you may not want to hear that you should probably consider getting a colonoscopy ASAP, you’ll be relieved to learn that some cancers may have much less invasive diagnostic tools on the horizon. Oh, and there are a couple links to some really interesting (although alarming) longer reads; just in case you’re embracing the dog days, and need some reading material, this summer.

Increased Cancer Risk

Colon cancer is on the rise for people younger than 50, reports cbsnews.com. The rate has increased over the past decade from 10 percent of all cases to about 12 percent. While there is no concrete explanation as to why colon cancer is increasing among the younger age group, one possibility is that it is linked to modern diets and the gut microbiome. Conversely, colon cancer rates are declining among those 50 and older, largely because of colonoscopy screenings which detect polyps before they become cancerous. Find out more below.

Breast implants that have been linked to cancer are being recalled, according to nytimes.com. The textured implants were banned in Europe late last year and are now being recalled in the United States by the Food and Drug Administration (FDA). The implants are linked to anaplastic large-cell lymphoma. It is a rare cancer of the immune system that develops in the tissue around the implant. Removing the implant and scar tissue around it is effective in curing the cancer in most cases, but if it is not found early it can spread and be deadly. Symptoms are swelling and fluid around the implant, and patients should have symptoms checked by their doctor. More information about the implants can be found below.

There is a link between radioactive iodine (RAI) treatment and cancer deaths, says cancer.gov. RAI has been commonly used to treat hyperthyroidism since the 1940s. An association between the dose of RAI treatment and long-term risk of death from cancers, including breast cancer, has been found in a study led by researchers at the National Cancer Institute. More research is needed to better understand the risks and the benefits of the treatments, but in the meantime, the information will help patients discuss hyperthyroid treatment options with their doctors. More information about the research can be found below.

Treatment and Detection

Immunotherapy may work in treating brain cancer, says medicalxpress.com. Researchers have found a way to make the CAR T immune therapy more effective against glioblastoma, the most common and most deadly form of brain cancer. Previous research showed that not all of the tumors could be targeted by the T cells. So, in order to more strategically target the tumors, researchers used a bi-specific T-cell engager, or “BiTE”, that makes it possible for CAR T cancer-killing cells to be sent to specific targets, making the treatment more effective. Learn more about the complicated, but promising, process below.

There may be a better, non-invasive way to detect bladder cancer, reports medicalnewstoday.com. Researchers in Spain have proposed using electronic tongues. The devices can detect or “taste” soluble compounds by using software and sensors. The tongues, used to analyze food, water, wine, and explosives, can also be used to detect diseases by testing samples of biofluid. Using the tongues to test urine samples could be an easy and inexpensive way to detect bladder cancer in the early stages. Learn more about the proposed tongue testing below.

Researchers may have found a new way to treat ovarian cancer, according to medicalnewstoday.com. Researchers have identified an enzyme known as IDH1 that encourages the growth of high-grade serous ovarian cancer, the most common form of ovarian cancer. The cancer is difficult to detect in early stages and hard to treat because it often develops a resistance to chemotherapy. Researchers found that when they blocked the IDH1 enzyme, the cancer cells were unable to divide and grow. The research also suggests that blocking the enzyme works on the cancer cells that have spread to other parts of the body as well as where the cancer originated. More information about this encouraging research can be found below.

Cancer-Causing Toxins

If you’ve never heard of ethylene oxide, you might want to consider reading the article ‘Residents Unaware of Cancer-Causing Toxins in Air’ from webmd.com. Ethylene oxide is an invisible chemical with no noticeable odor. It is used to sterilize medical equipment and make antifreeze, and it is on the EPA’s list of chemicals that definitely cause cancer. It is also an airborne toxin in areas that have been flagged as high-cancer risk, but many of the residents of those areas have no idea they are being exposed.

Another article worth reading this month can be found at huffpost.com. A new plastics plant is planning to come to an area in the middle of Louisiana’s “Cancer Alley”, and the residents, tired of cancer-causing chemical pollutants, are fighting back. Read about their path to empowerment below.


Resource Links:

cbsnews.com

Colon Cancer Study Finds Colon Cancer Rates Rising for Patients Under 50

nytimes.com

Breast Implants Linked to Rare Cancer Are Recalled Worldwide

cancer.gov

NCI study finds long-term increased risk of cancer death following common treatment for hyperthyroidism

medicalxpress.com

Immune therapy takes a ‘BiTE’ out of brain cancer

medicalnewstoday.com

‘Electronic tongues’ may help diagnose early stage bladder cancer

Could targeting this enzyme halt ovarian cancer?

webmd.com

Residents Unaware of Cancer-Causing Toxin in Air

huffpost.com

A Community In America’s ‘Cancer Alley’ Fights For Its Life Against A Plastics Plant

Negotiating Cancer: Tips From One Who’s Done It

Editor’s Note: This blog was written by Stefanie Joho, an advocate, speaker, and colon cancer survivor, for The Washington Post. You can see the original blog here.


At the age of 24, after two surgeries and two aggressive rounds of chemotherapy failed to cure me, my oncologist sent me home to die. When I was first diagnosed with colon cancer in 2013, I’d never even heard the word immunotherapy. I didn’t know that my doctors wouldn’t have all the answers. I thought clinical trials were last-ditch efforts rather than treatments that save countless lives. I didn’t know that a treatment geared to fighting my specific type of cancer and the genetic components of my tumor would go on to potentially offer tens of thousands of patients a revolutionary new path to surviving cancer in 2017.

Because I’m one of the very few lucky ones who looked into the abyss and made it out on the other side, I feel it is my duty to speak up and share some of the critical things that I have learned in what is now a new era in cancer care. Because a disease that should have killed me instead launched my career in patient advocacy.

[‘This is not the end’: Experimental therapy that targets genes gives cancer patients hope]

First and foremost, it is important to remember that every cancer is unique. Your journey will be different from mine. Your cancer is yours and yours alone. So think of the following points as “road signs.” They’re ones that I wish someone had shown me when I felt lost, with nowhere else to turn. The goal of this guide is to potentially help shape your thinking as you become an active participant in saving your life. More than anything, I hope it prompts you to question the presumption of cancer care for nearly a century.

1. The more we know, the more we can fight for our lives. 

We look to doctors in their white coats to be the experts — partly because, in a moment of such despair, we want to be able to look to someone to just give us the answers. But you should know that you will not find that person in anyone but yourself.

In the beginning of my cancer journey, I felt intimidated by my doctors and made several decisions that I now regret. I walked into appointments and agreed to everything instantaneously, without even considering a second opinion. As my cancer kept coming back and the treatments kept failing, I decided that the only chance I had to make it out alive would be to become an active participant on my journey. I would have to educate myself. I scoured the Internet. I became an “expert” not only in my specific disease, but also in the current cancer landscape.

I’m in no way encouraging you to become your own doctor and understand all the science. And I’m certainly not encouraging you to take everything you read on the Internet as fact. But in 2017, with the amount of accessibility to information, I’m encouraging you to seek it out. Never take anything at face value or trust blindly. Make informed decisions, not decisions based on fear. Walk into appointments with your doctors as an equal, not as a passive bystander. Being an informed cancer patient today is a full-time job. As with any job, that means learning new skill sets and finding the resources needed to succeed.

2. Asking questions is not making trouble. 

You will often be made to feel that being a “good patient” means not asking questions. But do not be afraid to speak up. Your life quite literally depends on it. Come into every appointment with a prepared list. If possible, bring someone with you who can take notes. If you are confused about something, ask. If you think of it later, write it down. Remember: You’re the one whose needs are paramount. You’re the one who is fighting for your life. Make every thought, concern and feeling heard. If it isn’t received the first time, say it as many times as necessary.

If you begin to develop a symptom from a treatment side effect or from the cancer itself, understand that it is the system’s job to help you get relief. If your doctors aren’t taking you seriously, do not believe their judgment over yours. And if you feel that your physician doesn’t understand or listen to you, then perhaps it’s time to seek one out who will. In my opinion, an individual who does not have empathy is not a physician.

3. No two cancers are the same. Become an expert in YOUR cancer. 

No two cancers are the same. Increasingly, knowledge of such individual variation is being shown to lead to more effective treatments. Ask your physicians and understand every type of genetic testing available to you. The more granular you can get about the specifics of your disease, the more you will maximize your chances of identifying the best possible treatment for your “personal” tumor. (Discovering the genetic biomarker of my cancer saved my life.) Continue to expand your resources so that you can be an expert in your own cancer.

4. Take note of EVERY potential side effect. Report everything. 

The incredible advances in cancer treatments have created a new set of challenges for clinicians, especially in how to identify the side effects. Given that these are new treatments, your doctors are not as practiced with them as they are with chemotherapy and radiation.

For example, immunotherapy is entirely different from traditional treatment. The former utilizes the patient’s own immune system, whereas the latter aims to attack only the cancer cells. Early recognition and proper management of side effects can make the difference between life and death.

Don’t hold back a single concern from your doctor and care team. Even if you think it sounds minuscule or irrelevant, your oncologist needs to know everything to best care for you. Listen to your body. Observe and report any changes.

5. Clinical trials are not a last-resort option.

The lines of treatment are rapidly changing, and, more often than not, getting access to cutting-edge treatments entails enrolling in a clinical trial. There’s an unfortunate misconception that clinical trials are reserved for those who have exhausted all other options. In reality, trials can actually offer access to the most individualized cancer treatment. And in fact, immunotherapy is more and more becoming the first line of treatment — and even being used before surgery to prevent relapses.

And just as individual patients can’t tackle their disease by themselves, we all ultimately must help one another by sharing and participating in clinical trials. Only 4 percent of cancer patients are currently enrolled in studies. Explore trials at cancer centers with a lot of experience in the type of therapy being tested. See if you have options outside of what has been standard of care for 70-plus years.

In the doctor-patient relationship, patients must understand that they are partners of science and as big a part of the cure as doctors. Without us, and our willingness to participate, medical advances would not exist. I will always feel a tremendous sense of pride for participating in a study that will save many thousands of people’s lives.

6. Cancer is not just a physical disease. 

It is critical throughout your journey to address the mental, emotional and spiritual aspects of this disease. Seek help, support and healing from other places, too. There are many schools of thought about why people become ill and what can be done to help them recover. It’s important to maintain your anchor in generally accepted medical principles, but don’t be afraid to look further up- and downstream to see if other currents of healing can add value for you and your care team.

As only one example among many, learning about nutrition made me feel as though I were actively fighting and doing something every single day to help my body heal.

7. Hope is a lifeline.

Don’t let anyone ever take that away from you. I believe in hope. Period. It saves lives. When your mind tells you that it’s over, the body has no reason to keep fighting. If you find yourself drifting in that direction, remember: “You haven’t failed the treatments; the treatments have failed you.”

Of course, doctors must tell their patients the difficult truth. But the specific words used to deliver such news matter. If your doctor is unable to provide you with hope or encouragement to keep fighting, find the hope and strength from within yourself and the loved ones around you.

8. None of this can be done alone. 

This might sound overwhelming. But with great power comes great responsibility. You are powerful, but you are not superhuman. Know your limits, and respect those limits.

Cancer is not a journey that you can navigate alone. The people and professionals with whom you surround yourself will alter the course of your journey. They will lend you strength when you feel you simply have nothing left to give.

If you physically or emotionally cannot actively advocate for yourself, then ask someone to be your advocate. When things were particularly bleak, my younger sister, Jess, often had to speak up for me. She knew what my doubts were, what my concerns were and what was important to me. She became my voice when I didn’t have one.

Create a health-care team that listens to you and cares about you and includes you in every aspect of your decision-making process.

Lastly, and so very importantly: Connect with others in the community. As much as your loved ones will do everything in their power to be there for you, they simply will not be able to understand the complexities of what you are grappling with on a daily basis. Making friends with other cancer patients (even through social media) enabled me to share the fears and anxieties that I was too ashamed or embarrassed to talk about with those who weren’t confronting their own mortality. I could speak openly about my side effects, the changes taking place in my body, my isolation. I could utter the words, “I’m ready to give up,” without the looming guilt associated with saying that to loved ones.

It certainly doesn’t have to be about only cancer, all of the time, but knowing that this kind of support exists is healing. It makes you feel understood.