Beth Fand Incollingo

Many patients defer to their oncologists for advice on managing cancer. Roxane Vermeland, however, was committed to making her own treatment decisions every step of the way.

Vermeland developed breast implant-associated anaplastic large cell lymphoma (BIA-ALCL), a type of cancer not yet well understood, after undergoing mastectomy and reconstruction due to breast cancer. Because all her doctors had limited experience treating BIA-ALCL, she felt it was crucial to study clinical diagnosis and treatment guidelines and discuss them with her care team.

In part due to her persistence, Vermeland is now cancer free, and she encourages others with the disease to also advocate for themselves.

BIA-ALCL has been linked to textured breast implants filled with either saline or silicone — in particular, Allergan’s Natrelle Biocell brand — and as of Nov. 5, 2020, has been diagnosed in 1,136 patients, 36 of whom have died, according to the Food and Drug Administration (FDA). In response to a July 2019 FDA request, Allergan, which has since been purchased by AbbVie, issued a worldwide recall of those products.

On Sept. 28, 2020, the FDA urged the makers of breast implants to supplement their labeling to include a boxed warning and a patient decision checklist focusing on health problems that can arise from the implants, in particular, two major health issues: BIA-ALCL and breast implant illness, an autoimmune condition that can result in brain fog, fatigue, rash, and muscle or joint pain.

Vermeland considers that a victory for patients but remains committed to creating more awareness around the issue. “We do believe that many more women will be diagnosed properly by generating much-needed attention around this cancer,” she says.

In November 2012, Vermeland was shocked to learn she had breast cancer in both her breasts, with infiltrating ductal and ductal carcinoma in situ T1c in one and T1b in the other. Vermeland underwent surgery at Rush Copley Medical Center in Aurora, Illinois, on Dec. 14, 2012, and had expanders put in at the advice of her plastic surgeon so reconstructive surgery could be performed later; she was not, however, informed of the risks of getting another cancer.

On Jan. 14, 2013, Vermeland began five months of harsh chemotherapy that included Cytoxan (cyclophosphamide), Adriamycin (doxorubicin), Taxotere (docetaxel) and Neupogen (filgrastim). “I cried every time I went because I knew how sick it was going to make me,” Vermeland says, adding that her side effects were ongoing and included hand-foot syndrome (swelling, redness and pain on the soles of the feet and/or palms of the hands), breast cellulitis (infection of the skin and tissue from bacteria), body aches, neuropathy (weakness, numbness, tingling or pain in the hands or feet) and weight loss.

In October 2013, almost a year after her diagnosis, Vermeland had smooth saline implants made by Mentor placed by her plastic surgeon, but problems cropped up right away. “They just wouldn’t stay in place,” she says.

“I went into surgery probably two more times for him to straighten them and do some fat grafting, but they always looked terrible.”

In April 2014, her plastic surgeon offered to replace them with Allergan’s Natrelle 410 textured implants that he recommended highly, assuring Vermeland and her husband that the product would not put her at risk of developing a new cancer.

In July 2015, the area around Vermeland’s implant filled with fluid. Her plastic surgeon tried to improve their appearance with fat grafting, but he never tested the fluid to determine if it could be associated with cancer. It wasn’t until July 2018, when her left breast swelled to triple the size of her right that Vermeland did some research online and learned about BIA-ALCL.

Although her plastic surgeon said that her breasts looked fine, Vermeland requested an MRI and that he test the fluid spotted during the imaging for CD30, a protein that can signal the presence of BIA-ALCL. The fluid was drained by a radiologist, who was instructed to put in a drain — but did not have orders to test the fluid. While on the operating table, Vermeland needed to advocate for herself again by requesting he call her plastic surgeon for orders, which he did. The fluid was tested by flow cytometry and immuno-chemistry in labs at Rush Copley Medical Center in Aurora, Illinois, and at Mayo Clinic in Rochester, Minnesota.

Vermeland went into septic shock a week after her drain was removed due to an infection from her left breast implant. Her plastic surgeon was called immediately to remove her left implant. Her husband asked her plastic surgeon to remove not just the implant but also the surrounding capsule made of scar tissue that forms around implants during healing. He told the doctor that this would allow Vermeland to avoid a second surgery later and prevent the spread of cancer that could occur if the capsule was disturbed but not removed.

Despite the suggestions, the surgeon only removed the left implant and multiple samples of the capsule, which were tested for CD30. This left Vermeland in fear for her life.

To make matters worse, she had trouble getting any physician to disclose her test results. “Both (the surgeon and my oncologist) knew nothing about that cancer type,” she says.

After receiving a diagnosis of BIA-ALCL on Aug. 11, 2018, Vermeland underwent a positron emission tomography (PET) scan on Aug. 23, 2018, at Mayo Clinic that identified effected mammary lymph nodes, which were false positive due to surgery a few weeks prior. This led to their removal on Aug. 24, 2018, along with the other implant with the capsule, the remaining capsule from left implant and part of Vermeland’s ribs to get to the mammary nodes. She was given a negative result for CD30.

Her next PET scan three months later showed more mammary nodes lighting up, which biopsy results proved positive. After multiple second opinions, Vermeland chose removal of the nodes through cryoablation at Mayo Clinic to potentially bypass chemotherapy. Unfortunately, more nodes were affected, requiring more biopsies and several other PET scans at The University of Texas MD Anderson Cancer Center in Houston, all of which were either negative or inconclusive.

In July 2019, after a PET scan and a few more biopsies, she was told she was in remission. However, Vermeland was convinced otherwise because she could still feel an enlarged node along with persistent chest wall pressure.

“It was the worst thing,” she says. “I was supposed to be happy, and it was so sad for me because I felt the results just were not correct. My family was telling me to move on, thinking I (was) being too pessimistic. I was confused what to do.”

At her next PET scan in November 2019, doctors saw positive nodes throughout her body, including her lungs. Vermeland had advanced to stage 4 disease.

Hematologists at Mayo Clinic wanted to treat her with a multichemotherapy regimen known as CHOP (cyclo- phosphamide, vincristine, prednisone, Adriamycin) plus Adcetris (brentuximab vedotin), but Vermeland was against it. At the First World Consensus Conference on BIA-ALCL that she attended in October 2019, Vermeland had learned that Adcetris, an antibody-drug conjugate that targets CD30-positive cells, can be used alone to treat the disease.

Past treatment guidelines recommended giving CHOP (or that regimen with Adcetris replacing vincristine) as the preferred treatment for BIA-ALCL that had spread.

After lengthy discussions and a second opinion from MD Anderson Cancer Center, she completed treatment with Adcetris at an affiliate of Northwestern Medicine in Geneva, Illinois.

“I had a lot of side effects including neuropathy, and I was in the (emergency room) a bunch of times,” she recalls. “But after I got my second PET scan during treatment on June 8, 2020, it showed I was in remission. It was unbelievable. My oncologists at all clinics were in awe. I was the miracle child.”

Vermeland has these suggestions for other patients undergoing mastectomy: Find a plastic surgeon who is well informed about all kinds of implants, is familiar with the symptoms of both BIA-ALCL and breast implant illness, is willing to test for CD30 and knows how to remove both implants and capsules.

For patients who suspect they have BIA-ALCL, Vermeland warns that most health insurers won’t pay for testing or implant removal unless the patient has survived breast cancer.

According to Allergan, it is not recommended that asymptomatic women remove their Biocell implants, and the FDA recommends against this as well. Those who do choose explant will receive a free pair of smooth implants from the company, although it will not pay for surgery.

Women with Allergan implants and a confirmed case of BIA-ALCL receive $7,500 from the company, but they must sign a document releasing the company from liability, Vermeland says. The company did not respond to a request for comment on the issue.

Some women are suing Allergan, claiming that Biocell implants contain unsafe particles and contaminants, according to an article on aboutlawsuits.com. The women allege that they may have avoided BIA-ALCL if Allergan had been more forthcoming about the dangers of the implants, the article states.

Vermeland also points out that breast implant illness is not covered by insurance because it’s not recognized as a medical condition, although patient advocates want the FDA to change that. She notes that Diana Zuckerman, president of the National Center for Health Research, can help patients get insurance to pay for this by identifying the best codes to use when filing claims.

Still, Vermeland says, “We need funding to help these women. They are doing GoFundMe pages to get their breast implants removed.”

Giving patients the care they deserve requires action, Vermeland says. She suggests that efforts should start with studies of patients who have BIA-ALCL, the therapies they’ve received and their health outcomes so treatment guidelines can be continually updated.

In addition to the guidance it recently issued, the FDA created a registry of patients with BIA-ALCL in 2012 called PROFILE (thepsf.org/PROFILE). Still, “it’s just not enough,” Vermeland says. She wants the FDA to force Allergan to pay for the removal of its textured implants in any patients who want the procedure.

In addition, Vermeland and three other women started a Facebook group, the BIA-ALCL Global Patient-Clinician Site, aimed at patients, doctors and advocates. “We hope to contribute to the diagnosis and treatment of women with the disease and to the prevention of more cases in the future,” she says. “As we say very frequently these days: ‘Not our daughters.’”

Articles

One patient with breast implant-associated anaplastic large cell lymphoma spoke out for herself throughout therapy — and encourages other patients do the same.

Advocating for Herself Amid Treatment for a Rare Cancer

Patients with cancer who contract COVID-19 were not more likely to get severely ill or die from the virus than people who do not have cancer, a recent study showed.

Across all patients in the study, only age and obesity were associated with worse COVID-19 outcomes.

Because patients who have received recent treatment for cancer are likely to be immunocompromised, the question of whether they are more susceptible to dire complications of COVID-19 has been the subject of numerous studies over the last eight months, with mixed results.

By shedding more light on the issue, the results of this latest research could be meaningful in helping patients and their doctors make treatment decisions, according to its authors, a team from Weill Cornell Medicine/NewYork-Presbyterian.

“This finding suggests that a diagnosis of active cancer alone and recent anticancer therapy do not predict worse COVID-19 outcomes, and therefore, recommendations to limit cancer-directed therapy must be considered carefully in relation to cancer-specific outcomes and death,” the study authors wrote in their paper published in the 

. “Our results suggest that patients with cancer with limited comorbidities (additional health conditions) may continue their cancer care with caution.”

The study looked retrospectively at data about patients admitted to two of the health system’s hospitals for COVID-19 treatment between March 3 and May 15, 2020.

It included 585 adults with COVID-19 (median age, 71 years; 55% men), 117 of whom had either a blood cancer or a solid tumor (18.8% genitourinary, 16.2% gastrointestinal, 16.2% chronic leukemia and 12.8% breast). Patients with cancer received treatment or were under active surveillance within six months of entering the hospital. Nearly half of the patients with cancer were receiving therapy, with 45% of them having received chemotherapy or immunosuppressive treatment within 90 days of admission, the study authors reported. Each patient with cancer was matched, for the sake of comparison, with four patients who had COVID-19 without cancer. The patients compared with each other were similar in age, gender and the number of other health conditions they had, such as diabetes, asthma, obesity and hypertension.

The researchers found that symptoms upon diagnosis with COVID-19, as well as complications encountered while in the hospital such as admission to the intensive care unit or use of a ventilator, were similar between the cancer and noncancer groups. There were no statistically significant differences in the levels of sickness or death between patients with and without cancer. The researchers recorded 29 deaths (24.8%) among hospitalized patients with cancer compared with 100 deaths (21.4%) among patients without cancer.

They suggested that earlier studies linking cancer and its treatments to worse COVID-19 outcomes were flawed because they failed to take into account age, gender and other health conditions contributing to worse outcomes. They noted, however, that the reason other health conditions were not linked with poor COVID-19 outcomes in their study could have been because most patients had few health issues besides the virus and cancer. The study authors added that it was difficult for them to evaluate the role of ethnicity or smoking in COVID-19 outcomes, as the patients in their study were largely white and nonsmokers. Finally, many of the patients with chronic myeloid leukemia were taking Bruton’s tyrosine kinase inhibitors to treat the cancer, which are anti-inflammatory, and could have contributed to their recovery from COVID-19, the authors pointed out.

Nevertheless, the researchers believe their findings should have a bearing on care decisions for patients with cancer.

“During the COVID-19 pandemic, we may be able to deliver anticancer care safely to patients who are younger with limited comorbidities,” the study authors wrote. “We may consider a more conservative approach in older patients with metastatic cancer and multiple comorbidities, for whom the efficacy of continued lines of therapy may be limited. Conversely, we would consider cautious continuation of therapy in patients with fewer comorbidities and in whom therapy is associated with significant benefit.”

For more news on cancer updates, research and education, don’t forget to 

A retrospective study of patients with COVID-19 showed that those with cancer were not more likely to experience severe symptoms or death due to the virus than those without cancer. Rather, only age and obesity were associated with poor COVID-19 outcomes.

Cancer May Not Suggest Poor Health Outcomes After COVID-19, Study Shows

since the requirements for what’s included on nutritional labels had been updated. Because our eating habits and understanding of dietary health have changed quite a bit since then, the Food and Drug Administration (FDA) recently updated its format for the labels attached to nearly all foods sold in the United States.

The FDA published its final rule on the subject in 2016, and by January of this year, most major food manufacturers were in compliance. Smaller food manufacturers have until January 2021 to start using the new labels. Jill Reedy, chief of the Risk Factor Assessment Branch in the National Cancer Institute’s Division of Cancer Control and Population Sciences, contributed to some of the research that helped inform the Dietary Guidelines for Americans, which serves as the basis for information on the labels and prompted some of the changes.

“It was really time to update that food label for consumers,” says Reedy, who holds a doctorate in nutrition and a master’s degree in public health. “Now there’s updated science, nutrition and public health information, including updated dietary guidance.”

, Reedy shared more about what shoppers will see on food labels and why.

CURE®: What is the main goal of the changes?

: The goal is to ensure that the nutrition facts label is aligned with the science about diet and its impact on health — because the label has been and will continue to be a key tool that helps consumers follow the Dietary Guidelines for Americans and make better-informed food choices. 

The guidance that we have from the dietary guidelines recommends a healthy dietary pattern that includes and encourages foods like fruits, vegetables, whole grains, low-fat dairy and a variety of lean proteins, and limits and constrains foods that are high in added sugars, saturated fats and sodium. And so, some of these recent changes to the food label, like the inclusion of added sugars, tie back to research that’s been done to understand the relationship between diet and health outcomes, including cardiovascular disease and cancer. It’s exciting to see an updated food label that reflects that current science for overall health promotion and disease prevention, including cancer prevention.

Have there been any changes in what constitutes a serving of a food?

How much Americans eat and drink have changed since that previous food label over 25 years ago. One example ... is the reference amount that’s used to set a serving. For example, a serving of ice cream used to be half a cup on the food label, and now it’s two-thirds of a cup. And the reference amount for a soda used to be 8 ounces and now is 12 ounces on the food label. The serving sizes that are included on the label have to be based on the amount of food and beverages that people are actually consuming, not what’s recommended that they should be eating.

As far as vitamins and minerals, what has been added and deleted from the nutritional label?

We now see vitamin D and potassium as new things listed on the updated food label. They’re included because of data (showing) that Americans don’t always get enough (of them). We will still see calcium and iron on the food label; those were there before. What we won’t see are vitamins A and C. Those are no longer required on the food label because most Americans are consuming enough of those.

What are the changes on the labels regarding sugar?

To follow a healthy dietary pattern, the recommendation is to limit calories from added sugars to less than 10% of total calories per day. We know from our data looking at the state of the American diet that we’re consuming too many calories from added sugars, and that makes it really difficult to meet our overall nutrient needs while staying within our calorie limits. Added sugars come from obvious sources like sugar-sweetened beverages, such as soda and sweetened coffees and teas. 

But then they are also in some packaged foods where we might not be thinking that there would be added sugars, like ketchup, spaghetti sauce or yogurt. That’s something we can now look at on the food label, and having that information can help increase our awareness and help us make choices to limit added sugars.

What is the Dietary Patterns Methods Project, and how did its findings contribute to this initiative?

Researchers have done a lot of research on this topic, with the goal of strengthening the evidence base for the dietary guidelines, and that includes the Dietary Patterns Methods Project. In that project, we looked at key quality indices, including the Mediterranean diet score, DASH (Dietary Approaches to Stop Hypertension) score, the Healthy Eating Index and the Alternative Healthy Eating Index. We used those indices to examine the dietary patterns of people who participated in three very large studies, the NIH-AARP (National Institutes of Health-American Association of Retired Persons) Diet and Health Study, the Women’s Health Initiative and the Multiethnic/Minority Cohort Study of Diet and Cancer. 

And we found very similar results across all three cohorts. People whose diets were consistent with any of these dietary indices had anywhere from an 11% to 28% reduced risk of dying from cancers, from cardiovascular diseases and from all causes combined. We also found that the healthier the diet based on these indices, the greater the reduction in the risk of dying, including from cancer. 

Relevant to the new, updated label is that higher intake of added sugars was associated with an increased risk for those negative health outcomes. So we can really see from this kind of analysis that a healthier diet, defined by any of these dietary patterns, is associated with better health outcomes.

What should people know about diet and lifestyle as they read the information on food labels?

We can consider information about each food through tools like the food label but also in the context of the overall dietary pattern. We also know that there are interrelationships with diet, physical activity, sleep and weight; these things are all connected. Diet, physical activity and obesity are all linked to many cancers, and so our goal is to support and address all these behaviors because it’s not necessarily just one or the other. It’s all of those things together. And as part of that, the nutrition facts label and the dietary guidelines are great resources for the public.

How will people know about the changes to food labels?

To help people better understand the updated nutrition label, the FDA has developed a really comprehensive public education campaign. They have videos and a lot of other helpful information on their website that folks can access to answer specific questions, either for us as consumers or for us as health educators.

What percentage of Americans pay attention to food nutrition labels?

There are studies that look at this, and we see that the majority of Americans do read the food label. And studies show that those who are using the food label are more likely to consume more fruits and vegetables and fewer sodas. So more frequent use of the food labels is associated with better diet quality.

The science underlying the dietary guidelines and the food label comes from research that’s grounded in the idea of the total diet and dietary patterns. And it’s important for us to take this more holistic approach and look at dietary patterns — rather than only looking at an individual food or nutrient — as we think across our lifetime, and any person’s lifetime, because we know it’s not just one thing that we eat that can affect health. It’s really that totality of our diet. And the food labels are an important tool that we have to continue to improve our dietary patterns.

For more news on cancer updates, research and education, don’t forget to

Paying attention to the updated nutritional labels on food can help Americans stay within dietary guidelines and prevent illness, including cancer.

Reading Updated Food Nutrition Labels May Help People Adhere to Dietary Guidelines and Prevent Cancer

“My doctor told me that cancer treatment will add years to my life. After my first week of chemotherapy, I feel older already.”

Mark Kantrowitz knew there was nothing funny about receiving a diagnosis of testicular cancer two weeks after the birth of his son. But he believed in the healing power of laughter, and the passage of nearly 20 years hasn’t changed that. Hence, his latest book: “Tumor Humor: Cancer Jokes and Anecdotes,” published this year by Cerebly, Inc.

Kantrowitz started writing cancer jokes and posting them to his website while he was in treatment for the disease in 2003. Since then, the collection has grown. Some are corny puns that fall into the “dad joke” category. Others are more risqué. Kantrowitz advises those who are easily offended not to read his quips but hopes that, for most, they will help dispel stress and depression.

“Beware,” he writes, “cancer jokes are contagious.”

The 143-page book is set up in chapters. Having a bad experience in the infusion room? Read jokes about chemotherapy. Worried about your next needle stick? Read jokes about IVs and blood draws. The book includes silliness about nausea, dietary restrictions, hair loss, paperwork, money, oncology nurses, specific cancer types and more.

Along the way, Kantrowitz shares pieces of his own journey, which inspired much of the humor, and the text is punctuated with occasional cartoons by Jerry King. Kantrowitz discusses being strapped in for scans that lasted hours, receiving test results, living with chemotherapy’s side effects, and enduring hospital parking problems and the things people say.

“One time I was talking to a young man about my cancer experience and he exclaimed, ‘Did you survive?’ to which I replied, ‘Well, I am standing here talking to you, aren’t I?’” Kantrowitz recalls in the book.

He adds that, “One acquaintance said, ‘Good luck on your double vasectomy.’ I think they meant to say mastectomy, but I was having an orchiectomy. I was having my testicle removed, not my breasts. Seriously, dude.”

Kantrowitz also gives “helpful” advice to those with cancer who want to pull pranks on their caregivers, such as using a green glow stick to make it look like they’re radioactive after radiation therapy; eating 

beets, blackberries or asparagus to change the color of urine; and even convincing someone a glass of apple juice is a urine sample and then drinking it.

The book is a good place to turn for a giggle, even when your situation doesn’t seem to call for humor. “It can take your mind off the cancer,” Kantrowitz says, “at least for a little while.”

Mark Kantrowitz, a testicular cancer survivor, emphasizes the therapeutic power of humor in his book "Tumor Humor: Cancer Jokes and Anecdotes." The book, inspired by his own cancer journey, offers a collection of jokes and anecdotes aimed at alleviating stress and depression for cancer patients. It covers various cancer-related topics, including chemotherapy, side effects, and hospital experiences, with humor ranging from corny to risqué. Kantrowitz also shares personal stories and provides playful advice for pranking caregivers, highlighting laughter as a coping mechanism during challenging times.

One man discovered that his experience with testicular cancer inspired jokes he could share with others.

Beth Fand Incollingo

Advocating for Herself Amid Treatment for a Rare Cancer

Cancer May Not Suggest Poor Health Outcomes After COVID-19, Study Shows

Reading Updated Food Nutrition Labels May Help People Adhere to Dietary Guidelines and Prevent Cancer

One Man's Journey with Testicular Cancer Inspired Him to Share Jokes with Others

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