Deciding Whether to Keep Diagnosis Private or Share
- Stand-up comedian and roastmaster Jeffrey Ross has revealed that his late friend and fellow comedian’s passing from colon cancer inspired him to go public with his own diagnosis.
- Some people battling a disease or cancer are open to sharing their experiences as much as they can, while others prefer to keep it to themselves. SurvivorNet experts say both approaches and everything in between are valid.
- Some possible reasons why cancer patients may choose to keep their diagnosis private are to maintain a sense of privacy and control and avoid pity, stigma, and discrimination.
- Patients may also be motivated to keep their diagnoses private because they want to reclaim a sense of normalcy and protect their loved ones.
- If you find yourself wrestling with your emotions because of a diagnosis, remember you don’t have to go it alone. Your support group filled with loved ones are there to help you on your journey.
Ross, also known as the “Roastmaster General,” said on the 3rd Hour of TODAY, “I was very good friends with Norm Macdonald, and he didn’t tell people about his health issues
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“It’s the people that help you through it. So, I thought it was important. Plus, get a colonoscopy, folks. It saved my life,” he added.
Ross also praised his support system and offered more insight during a recent interview on The Howard Stern Show. He said, “Right after the Brady roast, I had been working so hard, and I was like ‘I’m going to take a month and just catch up with myself … went to the shrink, went to the dentist … my buddy Jordan Rubin, for like two years, was like ‘You gotta get a colonoscopy.’
“I do it … I finally do it and the doctor’s like ‘Don’t worry about it, you have no symptoms, you’re just here for a routine thing’ … and I wake up an hour later and I have this guy standing over me and he’s like ‘yeah, we’re going to have to find you a surgeon.'”
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He then urged anyone listening to “Get your colonoscopies and your mammograms.”
When Stern asked Ross if he kept it private at first, Ross revealed he only told “close friends and family.”
“I realized I needed a support system to survive. And I had friends like norm who didn’t do that, and I thought, I don’t think I should do it that way, as much as I hate talking about it,” he continued.
“There’s a reason why I have so many friends and this must be it. My friends really rose to the occasion, my family really took care of me.”
After sharing how some of his loved ones and friends visited him in the hospital and joined him for chemo, Ross said, “It’s not the fight, it’s the army.”
Referring to how how Macdonald has kept his cancer battle private, Ross said, “I have kept a secret before and it was really a heavy load.”
In an earlier interview on “Jimmy Kimmel Live!” Ross shared that humor has also helped him throughout his cancer journey, saying, “My oncologist was like, ‘Jeff, the good news and bad news. The bad news is you’re going to need six months of chemo.
“‘The good news is you lost your hair a long time ago!’”
He also joked that he now has a “semicolon” as he had 7 inches of his colon removed following his diagnosis, through laparoscopic surgery last summer.
When Is It Okay to Share Your Diagnosis?
Some people battling a disease or cancer are open to sharing their experiences as much as they can, while others prefer to keep it to themselves or close loved ones. SurvivorNet experts say both approaches and everything in between, are valid.
“Patients who have just been diagnosed with cancer sometimes wonder how they are going to handle the diagnosis of the cancer in social situations,” psychiatrist Dr. Lori Plutchik explains.
Questions like “How much information should they share and with whom should they share the information?” are things Plutchik says patients take into consideration.
Do I Need to Share My Cancer Diagnosis in Social Situations?
Dr. Plutchik explains, “There is no one right way to handle this diagnosis. People should do what feels right to them.”
A cancer journey can last months to years, which means cancer warriors may be experiencing a lot of uncertainty until they fully understand where their health stands. This uncertainty can influence when a cancer patient is ready to share their diagnosis, Dr. Plutchik further explained.
Dr. Plutchik stresses that those close to a person going through cancer should be respectful of their wishes when it comes to disclosing their diagnosis and seeking support.
Adjusting to Life After a Diagnosis
A cancer diagnosis will undoubtedly upend your life in some form, but learning to cope with the onset of changes can make the adjustment easier to bear. You may notice your emotions and feelings fluctuating, ranging from high anxiety to depression. Experiencing a range of emotions and feelings is completely normal.
Dr. Plutchik says your emotions are likely to be fluid in the first few days, weeks, and possibly even months after a diagnosis.
Helping Patients Cope with a Cancer Diagnosis
Cancer patients are encouraged to build a support system of people they trust to help manage these emotions during this sensitive period. Mental health professionals are also very helpful in managing emotions during the cancer journey.
Cancer and treatment can have an impact on your physical appearance. Chemotherapy, for example, often causes hair loss, which can drastically alter how you view yourself.
Licensed clinical psychologist Dr. Marianna Strongin explained to SurvivorNet, “Cancer changes who you are both physically and emotionally.”
A study published in Frontiers in Psychology questioned how self-esteem should be considered in cancer patients. Researchers noted cancer patients’ framing of their diagnosis and how they cope with their diagnosis and subsequent treatment impacts their self-esteem throughout their cancer journeys.
“Adaptive adjustment strategies (positive reframing, use of emotional support, active coping, acceptance, and planning) in breast cancer patients were associated with high self-esteem. Social support also appears to be strongly related to self-esteem,” the study says.
Dr. Strongin suggests looking at the part or parts of your body impacted by the cancer or cancer treatment to help you cope with body changes. She recommends creating a regular practice of accepting your body image because it enables you to accept your cancer journey emotionally and physically.
“As you allow yourself to spend more time looking at all of you, you will begin having a new relationship with your body. It may not happen immediately, but you can start honoring and thanking your new body with time.
“Just because the treatment is behind you, the emotional recovery can take longer,” Dr. Strongin adds.
If you find yourself wrestling with your emotions because of a diagnosis, remember you don’t have to go it alone. Your support group is filled with loved ones who are there to help you on your journey.
Understanding Colon Cancer
Colorectal cancer happens when polyps are not removed and become cancerous. It can take up to 10 years for a colon polyp to become cancerous, according to SurvivorNet experts.
“We know that colon cancers can be prevented when polyps are found early,” Dr. Heather Yeo, a surgical oncologist who specializes in colorectal cancers at Weill Cornell Medicine, told SurvivorNet.
“Lowering the screening age helps somewhat with this, but access to care is a real problem,” Dr. Yeo added.
Dr. Zuri Murrell, a colorectal cancer surgeon and Director of the Cedars-Sinai Colorectal Cancer Center, previously explained the colonoscopy procedure to SurvivorNet.
“When we see a polyp, we actually physically take the polyp out through the colonoscope,” he explained. “What does that mean? That means we basically put a wire through with a little bit of a flange at the end, and we pull the polyp out. Now, note there is no pain with that. Inside the colon, there are no pain fibers. So, there’s no pain.”
The advantage of a colonoscopy is that your doctor can remove any polyps found during the test. Many colon cancers can be caught on colonoscopy before they develop or when the polyps are small enough to be removed without surgery.
Looking for Polyps During Colonoscopy
The American Gastrointestinal Association lowered the recommended initial age for a colorectal screening from 50 to 45.
The U.S. Preventive Services Task Force recommends guidelines that state colon cancer screenings should begin at 45 years old. This is in response to the increase we see in colon cancer diagnoses in younger adults.
However, many insurance companies still do not cover the cost of screenings for those under 50. In the past, the disease had predominantly been found in adults 50 years or older, but for those predisposed to getting it at a younger age, these new guidelines could help catch it earlier.
Dr. Heather Yeo, a colorectal surgeon and surgical oncologist at Weill Cornell Medicine and New York-Presbyterian, previously told SurvivorNet, “Colon cancer is considered a silent and deadly killer. What happens is people often don’t know that they have colon cancer. They don’t have any symptoms. That’s why we screen for colon cancer in the United States.”
The Rate of Colon Cancer is Increasing in Those Under 50
“You should be screened for colon cancer, even if you have no family history. Once you have your initial screening colonoscopy, if there are no polyps and you have no high-risk factors, usually once every 10 years is fine,” she advises.
“Colon cancer is a slowly progressing cancer. If you have any family history of colon cancer, you should be screened about 10 years before your family member had colon cancer. So if you have a family member that was 53, you should be screened at 43.”
Dr. Paul Oberstein Explains Common Colon Cancer Symptoms
What Increases Your Risk for Developing Colon Cancer?
For some people, certain risk factors can influence their risk of getting colon cancer. They include the following:
- Are older. About 90% of cases are in people aged 50 or older, according to the U.S. Centers for Disease Control & Prevention (CDC). Yet it is possible to get this cancer earlier in life.
- Have inflammatory bowel disease. Crohn’s disease or ulcerative colitis can, over time, cause cells in your intestines to turn cancerous.
- Have a family history of this cancer. Just under one-third of people who get colon cancer have family members with the disease.
- Have a gene mutation. About 5% of colorectal cancers are caused by an inherited genetic mutation that causes syndromes such as familial adenomatous polyposis (FAP) or hereditary nonpolyposis colorectal cancer (Lynch syndrome).
- Don’t exercise very often. Staying active can lower your risk.
- Eat a diet that’s high in meat. Regularly eating red meats like burgers and steaks, and processed meats such as hot dogs and bacon might put you at higher risk. Eating more fruits, vegetables, and whole grains instead might lower your risk.
- You are overweight or obese. Having too much weight increases your risk of both getting colon cancer and dying from it.
- Drink a lot of alcohol. Limiting alcohol to one drink daily for women and two drinks daily for men could help lower your risk.
- Use tobacco. Long-term smokers are more likely to get this cancer than nonsmokers.
Which Treatments are Best for You?
It’s important to understand that your doctor has many ways to treat colon cancer, depending on what stage the cancer is, including:
- Surgery
- Radiation therapy
- Chemotherapy
- Targeted therapy
- Immunotherapy
Surgery
Surgery is the main treatment for most early-stage colon cancers, according to the doctors SurvivorNet spoke with. The surgeon will remove the part of the colon or rectum where there is cancer, along with a small area of healthy tissue around it. Taking out as much of the cancer as possible is important for improving your outcome.
The surgery may be performed through small incisions (laparoscopy), or through a larger incision. Some people may need to wear a special bag (ostomy) to collect wastes after surgery.
Radiation Therapy
This treatment aims high-energy x-rays at the cancer to destroy the abnormal cells. The radiation can come from a machine outside your body, or be placed directly inside your body. Sometimes people get radiation before surgery, to shrink the tumor and make it easier for the surgeon to remove. This is called neoadjuvant radiation.
Chemotherapy
This treatment uses strong medicine to stop cancer cells from dividing, no matter where they are in your body. You may get a combination of chemotherapy drugs as your first treatment. Chemotherapy has been very well studied for colorectal cancer, and it is known to improve survival.
The most common therapy is a combination of chemo drugs called FOLFOX:
- FOL = leucovorin calcium (folinic acid)
- F = fluorouracil
- OX = oxaliplatin
Your doctor may add medications like irinotecan (FOLFIRI) or cetuximab, depending on how well your tumor shrinks with treatment and other specifics about your particular cancer. For FOLFOX, the medications are given through the vein and require regular doctor visits.
To determine exactly which chemotherapy regimen you get, your doctor will consider your age and how well you might tolerate the side effects of chemotherapy. Gene mutations (for example, BRAF and KRAS) and the location of the primary colon tumor also factor into the decision.
You can also get chemotherapy before colon cancer surgery, which is called neoadjuvant chemotherapy. Getting chemo first helps to shrink the tumor, which can make both the surgery and recovery easier, according to SurvivorNet’s experts. Chemo is also a treatment for cancer that returns after therapy.
Targeted Therapy
This treatment targets substances like proteins or genes that the cancer needs to grow. This makes targeted therapy more precise than chemotherapy, and less likely to damage healthy cells. One example of targeted therapy is bevacizumab (Avastin), which stops the growth of new blood vessels that feed tumors. Another group of targeted therapies are called epidermal growth factor receptor (EGFR) inhibitors, which block the cancer from growing.
Immunotherapy
This treatment makes your own immune system a more efficient cancer fighter. A group of drugs called checkpoint inhibitors, which includes pembrolizumab (Keytruda) and nivolumab (Opdivo), work by preventing cancer cells from hiding from your immune system. Checkpoint inhibitors may extend the amount of time before the cancer spreads.
Dr. Paul Oberstein, on which treatments doctors use to turn stage 4 colon cancer into a chronic but manageable disease
Contributing: SurvivorNet Staff
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