Renowned Fashion Designer Carmen Marc Valvo, Who Beat Colon Cancer 22 Years Ago, Pushed For Answers Prior To Getting Diagnosed: ‘The Disease Has Empowered Me To Make Sure People Are Aware’

Valvo previously told Cancer Forward about his 2003 colon cancer diagnosis, explaining how he had a gut feeling something was off with his body and pushed for answers.

Looking back to 22 years ago, Valvo explained, “I was about to debut my fall collection at the time and during the course of the period I realized something was wrong. I just knew something was wrong. I always say everyone should be his or her own best advocate.

“Everybody knows his or her body better than anybody else … better than a doctor. You need a doctor that doesn’t just hear you but also listens to you.
If you don’t have that doctor than you need to find another one.”

Thankfully his doctor did routine testing and blood work, which appeared normal. However, Valvo still pushed for answers and decided to get a colonoscopy, which revealed his cancer.

As the diagnosis came in the wake of his partner’s mother’s death, along with his cat, he chose not to go public with the news as he “didn’t want the big drama.”

After cat scans and MRIs, he scheduled surgery 16 days after being diagnosed and successfully had the surgery removed. It was then he chose to share the news with others, other than his partner and a coworker.

“After I tell them this, I find out from one sister that our aunt had colon cancer. Well, I never knew this. Then I found out on my mother’s side there was a cousin who apparently had colon cancer when she was 34 and it spread so far that half of her stomach, liver, and large parts of her intestines were removed,” he said.

Valvo then stressed the importance of removing the stigma that comes along with a colon cancer diagnosis, adding, “Who wants to talk about their butt or their bowel movements? Is that something that’s glamorous? No, it’s not. I think there’s a whole educational process that’s necessary to educate everyone that you should not keep these secrets inside.

“There’s nothing to be ashamed of. If you have a cancer it should be shared, especially with members of the family.”

Further detailing his treatment, Valvo dubbed himself “very blessed” to have not needed chemotherapy or radiation after surgery.

During his surgery, doctors discovered 17 pre-cancerous spots, which prompted them to take 17 biopsies. Although he’s been cancer free, he continues to go for a colonoscopy one a year after.

Now, Valvo strives to “make colon cancer glamorous and something we are willing to talk about,” and inspire others to be aware of their family history and take preventative measures.

He advises others to maintain a “very positive outlook” throughout cancer, insisting, “To never go down that dark hole because I think your emotional wellbeing is important, if not the most important part of the entire healing process.”

Additionally, in a 2020 interview with Essence, Valvo said, “My bout with colon cancer made me realize how precious life is and that it is important for us all to strive to make every day a red carpet moment.”

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.

Colon Cancer: A Silent Killer

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.

RELATED: How Does a Colon Polyp Turn Into Cancer?

“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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