New Treatment Slows Tumor Growth, Improves Quality of Life

The epitome of frustration is, when your symptoms have taken control of your life and medical professionals can’t find a way to make them stop. For more than five years, that was Gig Harbor resident Ellen Dunn’s life.

She suffered with ongoing cramping, diarrhea and dry flushing of her skin. She was first diagnosed with Irritable Bowel Syndrome, but that was incorrect. “No matter what was

Ellen Dunn

Ellen Dunn underwent therapy at Virginia Mason for carcinoid tumors, an uncommon cancer that affects the intestines, pancreas, lungs and other parts of the body.

prescribed, my symptoms just kept getting worse. It was ruining my life,” Ellen remembers. “I told my internist it’s got to be something else. She recommended I take a blood test for carcinoid syndrome, and that’s what it was.”

Finally, Ellen had an answer. Malignant carcinoid tumors tend to grow slowly. But when they increase in size, they cause pain and can produce hormones that cause diarrhea, flushing and disrupt the body’s endocrine system. Standard chemotherapy and radiation aren’t effective on these types of tumors.

Fortunately for Ellen, she learned she had carcinoid tumors at the same time a treatment to control the growth of neuroendocrine or carcinoid tumors (NET) was going through a clinical trial. Led by Hagen Kennecke, MD, medical oncologist and medical director of the Floyd & Delores Jones Cancer Institute at Virginia Mason. Ellen was selected to be the first patient in the Pacific Northwest to receive this treatment.

Called peptide receptor radionuclide therapy (PRRT), the treatment involves an injection of a small protein peptide into the patient’s bloodstream. The peptide finds the cancer tumors and binds to them, while also protecting the surrounding tissues. PRRT has been shown to significantly slow the growth of tumors. It is also beneficial to patients with advanced neuroendocrine tumors who are not candidates for surgery and whose symptoms are not responding to other medical treatment.

In December, Dr. Kennecke and radiologist Marie Lee, MD, administered the first treatment to Ellen. She receives PRRT treatments every two months in an outpatient setting The treatment lasts only a few hours and has minimal side effect. Ellen had her third PRRT treatment in April.

“Until now, there has been no effective therapy to shrink small bowel and lung neuroendocrine tumors when surgery is not an option,” says Dr. Kennecke. “While this procedure does not cure cancer, it significantly extends the lives of those living with the disease and improves their quality of life. We are proud to be on the forefront of this promising, highly targeted therapy which can be used for the treatment of other cancers in the future.”

More than 3,000 patients with advanced carcinoid tumors live in Washington state. This new treatment helps the majority of these cancer patients and controls the tumors for three years on average. The treatment may be repeated as needed.

“I’m so thankful that I was accepted into the program,” Ellen says. “I feel very fortunate.” In early April 2018, Virginia Mason became the first medical center in the Pacific Northwest to administer PRRT as part of routine care, offering a viable new treatment to many patients. In the near future, Virginia Mason will be offering clinical trials of a very similar therapy to treat patients with prostate cancer.


A version of this article also appears in the Virginia Mason Health System 2017 Annual Report.  

Facing Prostate Cancer: Michael’s Story

To return his doctor’s phone call, Michael Webb found a remote office in his building and shut the door. A recent blood test showing an uptick in Michael’s prostate-specific antigen, or PSA – a protein produced by prostate cells – had prompted a biopsy. Now he braced himself to hear the results.

“Dr. Kozlowski said ‘I’ve got to tell you it’s cancer, but understand we’re going after it. Whatever we have to do, we’re going to get it,’” remembers Michael. “He was very straightforward with his delivery and I appreciated that more than anything.”

On the phone Michael was making a dizzying pivot, from the mental image of a perfect biopsy to a confirmed cancer diagnosis.

On the phone Michael was making a dizzying pivot, from the mental image of a perfect biopsy to a confirmed cancer diagnosis. He needed to talk treatment, even if just high level. Urologist Paul Kozlowski, MD,  presented some options, including total removal of the prostate. But he cautioned Michael not to make any immediate decisions. More information was on the way, in preparation for an appointment where Michael could learn more and ask anything.

“Then I called my wife and it was a complete meltdown,” says Michael. “She asked, how bad is it? I said I don’t know. I remember like it was yesterday, driving to that appointment with her.”

Michael and his wife met with Dr. Kozlowski and a radiation oncologist, who could address possible radiation therapies. But two big factors in Michael’s case made a good argument for cutting the cancer out: being just 51 years old, and having a high Gleason score, a number indicating the degree of cell abnormality. Michael decided on total prostatectomy. They had already discussed potential side effects, and erectile dysfunction was one giving Michael pause. But Dr. Kozlowski had a secret weapon in the form of minimally invasive surgery, aided by a robot known as the daVinci system.

Also called robotic prostatectomy, daVinci allows the surgeon to control robotic arms fitted with precision instruments to operate through small incisions in the abdomen. Advantages of this approach over open surgery include less pain, reduced blood loss and a faster recovery. Dr. Kozlowski explained that Michael’s procedure would be nerve-sparing, leaving tiny nerve bundles on either side of the prostate intact. An operation by an experienced robotic surgeon, combined with Michael’s age and good health would give him the best chance of recovery without long-term side effects.

Michael Webb shows off his PSA number

Time to celebrate: Michael shows off his new tattoo.

Michael underwent surgery on February 12, 2016. Dr. Kozlowski reported everything had gone according to plan, but that was small comfort to Michael who struggled to endure a catheter at home for 16 days. Much bigger comfort came when Dr. Kozlowski called to say they got it: the cancer looked to be contained in the prostate. Going forward, Michael would need blood tests every three months to monitor his PSA level. The number to look for, Dr. Kozlowski told Michael, is 0.01. That number says there’s no cancer.

“So that became a mantra for me and my wife, 0.01,” says Michael. “We became team 0.01. I told her if we get to the one year mark and we’re still there, I’m getting a tattoo!”

A successful surgery now behind him, Michael kept up with blood draws and visits with Dr. Kozlowski, who Michael remembers shifting into counselor mode. There was some physical stuff to work through in the healing process, and Michael found he could talk about it all with ease.

“I didn’t ever feel alone with Dr. Kozlowski, he was right there with me,” says Michael. “He was totally vested in my whole process. He really wanted things to work out well for me.”

If anyone wonders if things worked out well for Michael, they need only look at his left bicep. One year post surgery, his PSA remained locked at 0.01. It was time to schedule that tattoo. Michael discovered good tattoo artists are really busy – there’d be a three-month wait. But then in May it happened. The guy who had been deathly afraid of needles before his diagnosis sat for a long session under one forbidding needle, and got the deed done.

Not long after Michael’s inking, it was time for his six-month blood draw, having graduated from the three-month schedule. Michael asked to know as soon as the results were in. Dr. Kozlowski’s message came back: “0.01, just like your tattoo.”

Sketch.0.01

Original Sketch of Michael’s Tattoo

Awareness and Surveillance: Critical Tools in the Fight Against Anal Cancer

**By David Aboulafia, MD**

Anal cancer is a subject most people would rather not discuss, because of its anatomical location, along with an unfortunate stigma attached to the malignancy. Although tragic, actress Farrah Fawcett’s openness about her diagnosis helped create much-needed public awareness during her battle with the disease, which she lost in 2009 at the age of 62.

stop-cancerCloser to home, a 51-year-old White Center resident named Ed was impressed with Fawcett’s openness and advocacy. He now feels very fortunate that he listened to his physician and decided to have an anal Pap test following many years of HIV (human immunodeficiency virus) treatment and participation in a surveillance program. Despite having put off the screening for a few months, Ed knew that since he had HIV, he was at higher risk for HPV (human papillomavirus) and anal cancer.

The anal Pap test showed cells, which were concerning for cancer, and a subsequent biopsy of a suspicious-looking lesion proved to be cancerous. After additional studies, Ed was diagnosed with early stage anal cancer. The fortuitous discovery in October of last year allowed him to forgo surgery and, instead, receive six weeks of chemotherapy and radiation.

Although his treatment was challenging, the holidays and the month of January allowed Ed to rest and recover. In February, he felt good enough to return to work and subsequently began following a vegan diet, exercising regularly and better managing diabetes and stress. Due to the clarity that accompanied his hardship, Ed said he almost feels lucky to have gone through this experience because of everything it taught him — especially the importance of educating yourself, finding a good care team and learning to be his own best health advocate.

Anal cancer and HPV

Anal cancer occurs when skin cells grow out of control in the anus. The causes and location of anal cancer should not be confused with colon or rectal cancer, which are different.

According to the American Cancer Society, about 90 percent of anal cancers are caused by HPV. It is important to know that there are many strains or types of HPV and not all of them cause cancer. Most cancers of the cervix and anus are caused by HPV strains 16 and 18, while other HPV strains cause genital warts. HPV is the most common sexually transmitted disease and most people are exposed to HPV numerous times over their lifetime.

Thankfully, HPV infection usually goes away on its own. However, when the immune system is damaged by HIV and other causes, HPV infection can last longer and cause changes to the skin inside the anus, which is called “dysplasia.” Over time, some of these HPV-damaged cells – called “High-Grade Squamous Intraepithelial Lesions” or HSIL – can develop into cancer. Although HSIL is not the same as cancer, it is an indication that cancer may develop in that spot at a later date. Unfortunately, researchers do not currently know why some HSIL go away on their own while others worsen and become cancerous.

Who is at risk?

Anyone can get anal cancer, even people who have never had anal sex. However, it is much more common in people who are HIV-positive. For perspective, in HIV-negative people the chance of developing anal cancer is one to two people per 100,000. In HIV-positive people, it is between 30 and 131 per 100,000. (The rate in HIV-positive women is lower than in men.) In fact, even HIV-positive people on successful antiretroviral therapy have a higher risk of anal cancer than HIV-negative people.

Risk factors

The most common risk factors for anal cancer include:

  • Infection with certain strains of HPV
  • Age (risk increases with age)
  • Having a low count of T-helper cells, a type of white blood cell
  • Smoking
  • For women: a history of HPV-related cervical and vulvar dysplasia and/or cancers
  • History of genital warts

Symptoms

Early stages of anal cancer are often not accompanied by symptoms, which means most people are unaware when they begin to develop it. In later stages, the most common symptom reported is pain, which can be felt constantly or only when having a bowel movement or anal sex. Other symptoms can include a lump or bleeding from the anus. Unfortunately, anal cancer is often misdiagnosed as a hemorrhoid. If you are having any of these symptoms, it’s important to tell your doctor.

Treatments

Like most types of malignancies, the earlier anal cancer is found and treated, the fewer side effects people face from treatment. When caught early, anal cancer usually responds well to treatment. Some small cancers can be removed surgically. However, once the cancer spreads, treatment may require a combination of chemotherapy, radiation and surgery. Removing the affected areas can “cure” anal cancer, but there are often long-term side effects from surgery, radiation and chemotherapy, like needing to go to the bathroom more often.

Research: Virginia Mason, Harborview and The Polyclinic in national screening study

Thankfully, deaths from AIDS are way down. However, anal cancer among people living with HIV is on the rise. Researchers think anal cancer can be prevented by routine screening and removal of precancerous cells. In fact, researchers at Virginia Mason, Harborview and The Polyclinic are participating in a national clinical trial called The ANCHOR Study (ANCHOR stands for “Anal Cancer HSIL Outcomes Research”). This strategy has reduced cervical cancer rates by 80 percent. But to get health insurance companies to cover routine anal cancer screening and preventive treatment, researchers need to prove this strategy prevents cancer.

The best way to demonstrate effective prevention is to recruit people with HSIL into a study, with groups assigned randomly to a treatment arm or a monitoring arm. Researchers will then follow everyone for five years to compare the rates of cancer in both study arms. At the end of the study, researchers will know whether screening and treatment of HSIL are effective strategies in preventing anal cancer. Researchers will also learn a lot about HPV and other risk factors and why these sometimes cause cancer.

If you have any questions about whether this study might be right for you, talk with your doctor and have your provider call a local study site with any questions. For more information about The ANCHOR Study, including the list of study sites and contact information, visit ANCHORStudy.org.

Words of wisdom

Although Ed is not a candidate for participation in The ANCHOR Study, he now understands the importance of screening for anal cancer, especially among people living with HIV. Despite needing to come to Virginia Mason twice a year to be checked to make sure the cancer doesn’t grow back, Ed feels very thankful and encourages male and female friends who may be at risk to speak with their physicians about a Pap test. After all, knowledge is power.


David M. Aboulafia, MD, is board certified in Internal Medicine. His subspecialties include Medical Oncology, Hematology and HIV Clinical Care. Dr. Aboulafia is principal investigator of The ANCHOR Study at Virginia Mason and medical co-director of Bailey-Boushay House. He practices at Virginia Mason Hospital and the Floyd & Delores Jones Cancer Institute (1100 Ninth Ave, Seattle, WA 98101; 206-223-6193).

A version of this article previously appeared in the Seattle Gay News and the Queen Anne & Magnolia News.

Surviving Prostate Cancer: Bill’s Story

Bill-webMy name is Bill and I am a software engineer. In the fall of 2010, I was sitting on my father’s front porch in Milwaukee when I got the call confirming I had prostate cancer, the same disease that had killed my grandfather and was about to end my father’s life as well.

Because of my family history, for years I had regular prostate-specific antigen (PSA) tests. The PSA level is often elevated in men with prostate cancer and in the years just prior to 2010, my numbers were going up. Some doctors adopt a “watch and wait” approach to rising PSA levels when there are no symptoms. But my doctor recommended I see a urologist who specializes in diagnosing and treating prostate cancer. I’m glad he did.

The urologist recommended a new gene-based test called a PCA3 and the results were “positive,” meaning there was a strong likelihood I had prostate cancer. A biopsy was needed for confirmation and during that operation, 17 samples of prostate tissue were removed. Three were found to contain cancer cells. The good news was that my cancer was detected early and confined to one part of my prostate. This meant that with proper treatment, my prognosis was excellent.

Chemotherapy, radiation and surgery are all used to treat prostate cancer. After researching my options, I chose to have surgery at Virginia Mason because, as I learned, it’s one of the best places in the country for this type of operation. After I decided on Virginia Mason, I was also accepted into the clinical trial of a new treatment being tested as an adjunct to surgery. In the weeks prior to my operation, I visited Virginia Mason frequently as part of this clinical trial. With every visit, I felt more certain that I was in the best possible hands.

On the day of the surgery, everything went smoothly. My hospital stay and follow-up care were first rate. I actually returned to work after only three days off.

Today, I am considered cancer free. I am back to enjoying hiking, biking and kayaking. And while I continue to be monitored closely, my focus is not on cancer, but on the people I love: my wife and five children/stepchildren.

My life has changed in positive ways. I have more gratitude, more awareness that I want to enjoy the life God has given me, and more urgency to do things today, not tomorrow. I’m grateful for the care I received at Virginia Mason. And to the people who provided that great care, I send my heartfelt thanks.

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This story originally appeared on VirginiaMason.org. Meet other patients who bravely shared their stories of fighting cancer, and get the latest information on cancer treatment outcomes and wellness and support at Virginia Mason.

Surviving Renal Cell Cancer: Yaffa’s Story

Yaffa with baby Nesiya

Yaffa with baby Nesiya

My name is Yaffa Grace Penski. I am 45 years old, married and have four children ages 14, 13, 10 and 8 months. I am a career coach, life coach and recruiter. And my husband and I have a small fitness studio on Mercer Island for adults and kids. I love working out with my husband, spending time with my family, hiking, beach vacations, traveling and cooking.

I found out I had cancer Aug. 13, 2013, after a trip to the ER with what I thought was horrible food poisoning. Because I had a fever and abdominal pain, they had to rule out appendicitis and did a CT scan. That’s when they found the mass on my kidney. I was shocked and absolutely terrified. Not what you are expecting to hear when you haven’t had any warning signs. The next day I was totally fine. My kidney cancer was asymptomatic and that’s why I didn’t know there was a problem.

I needed surgery to remove the tumor. This was very risky because the cancer was in my “good” kidney. My other one only functions at 18 percent. If there were complications, I didn’t have a backup.

A friend of my husband urged us to get a second opinion and one of my husband’s clients highly recommended her colleague at Virginia Mason. I did some research and found that there are only two urologists in the Seattle area who are considered experts in the type of surgery I needed. I set up appointments with both, but after my husband and I met with the Virginia Mason urologist, there was no doubt about who I wanted to be my doctor. He took so much time to explain things and we left there at ease with what was going to happen.

Cancer doesn’t just affect your body like a broken bone. It’s an illness that impacts your body, mind and spirit. I felt like my urologist and everyone at Virginia Mason understood the impact not only on me, but also my family. They treated the entire “disease” process, but ultimately the experience felt like a “wellness” process. I felt cared about and I felt my family was cared about, too.

Compared to most cancer treatments, I think mine was relatively simple. Everyone always thinks “chemo” and “radiation” when you hear the “C” word but that wasn’t my experience. After my surgery, I spent five days in the hospital and then recovered at home for about seven weeks. It was painful, but my doctor and everyone else worked hard to address and lessen my pain throughout the stages of recovery.

Getting cancer changed my life in so many ways. For one thing, it seemed to create life — literally. I have 3 children from a previous marriage, but my husband did not have any of his own. We tried for two years to get pregnant and even went through fertility treatments. We were told the likelihood of us getting pregnant was almost zero and we had come to accept that we would not have a child together.

But three months after my cancer was removed, at almost 44 years old, I was pregnant, and now have a beautiful 8-month-old gorgeous daughter. We named her Nesiya, which means miracle of God.

I quit my job that was not fulfilling and started a new career because life’s too short to do something that doesn’t make you happy. I treasure each day and each person in my life. I created a blog, http://www.lifewithasideofcancer.com, when I first got diagnosed as a way to write about the entire experience and get my feelings out and inspire others. I named it “Life with a Side of Cancer” because life is the main course highlighted by a side of cancer, which is secondary. I am completely filled up with gratitude and I know with all my being what is truly important.

Today, there is no “normal.” There is only great. I have been given a second chance to create the life I want and that is my focus. I am so very blessed to be able to make my life happen and so very grateful for all the people at Virginia Mason who took care of me. Thank you!

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This story originally appeared on VirginiaMason.org. Meet other patients who bravely shared their stories of fighting cancer, and get the latest information on cancer treatment outcomes and wellness and support at Virginia Mason.

Surviving Pancreatic Cancer: Kris’s story

KrisMy name is Kris and I’m happy to say I turned 63 in April 2015. When I was diagnosed with pancreatic cancer on Jan. 6, 2011, it was a very, very dark day. At that time, I had a teenage son and daughter, two Bichon Frises, a bunny and a wonderful husband I’d been with for 27 years.

I also had two aunts who had died of pancreatic cancer, one that I was particularly close to. I remember very clearly when my primary care physician called to tell me the results of a CAT scan she had ordered. I told her, “Don’t tell me this! This is a death sentence!” I was horrified.

I immediately contacted my sister, a trauma surgeon at Cook County Hospital in Chicago. They say that the Lord works in mysterious ways. At that time, my sister was studying for another board certification. She had just read a paper written by a Virginia Mason oncologist about the team approach to treating pancreatic cancer.

She asked if I was aware of Virginia Mason and I responded that I had been getting my care there for more than 20 years! She urged me to talk with the physician who had written the article she had read because “he totally gets it” — that cancer has to be looked at holistically. His protocol and the Virginia Mason approach, she said, appeared to be quite unique in the treatment of pancreatic cancer.

I met this oncologist for the first time in a joint meeting with my surgeon. I loved him right away. He has twinkly eyes, a very honest, straightforward manner and a sense of humor. That trust was confirmed when he came in to my hospital room at 9:30 at night, the day after my surgery. The diagnosis of stage 2 pancreatic cancer had just been confirmed and my husband and I were both having a good cry.

This doctor introduced himself again and then sat down on the foot of my bed. He said, “What information can I give you that will help you sleep tonight?” He then proceeded to patiently answer our zillion questions. But the answer that meant most to me was when my husband asked him, “What do you consider to be your role in this proposed treatment?” He answered, “My role is to be Kris’s spiritual cheerleader. Anyone can write a script for chemotherapy. But if I can help keep her spirit strong, she will win.”

He proceeded to talk about how cancer was perceived to be a battle waged by the human body. But it was also a battle being waged by the human spirit. I knew I had found the right doctor. Oh, I checked out the competition — but it wasn’t even close.

It is still difficult to talk about the one year of adjuvant therapy. I was very sick and the physical toll it took was a mighty one. But I had the best team in the world. All the oncology nurses were the most compassionate, lovely people. They always gave me a boost, helped me to laugh, and worked so hard to alleviate the terrible side effects. This started even before I got to the treatment room, with the wonderful ladies at the front desk on the second floor who checked me in.

But as awful as 2011 was, it was also a year of many blessings. I developed an extraordinarily close relationship with my daughter. I learned to be a gracious recipient of help. I tell my children and everyone who asks, that my survival was not due to some special effort from me.

Rather, it was the prayers, compassion and kindness of a village. From the neighbors who snuck in at night to fill my garden with tulip bulbs, to the “soccer moms” who brought dinner to my family, every night, for months in a row, to my two best friends, who sat with me every day for an entire year, and to my Virginia Mason “team” — I am here because of you.

I saw my daughter graduate and head off to college. I taught my son how to drive (now there is a challenge!) I went back to work full time — something even the Social Security office had a hard time believing. My life has been changed irrevocably. I laugh more. I spend more time with the people I love. My faith has deepened.

I truly believe that Virginia Mason gave me the means to live a full and complete life. Having such a serious illness leaves a shadow. It is always there, flitting around the edges. I don’t dwell on it. I’ve been very fortunate to be invited to work with Virginia Mason to improve the patient experience, through workshops and participating in process improvement sessions.

The dedication I see from the Virginia Mason team is an inspiration. Life after cancer is not “normal.” It’s better than that. Continuing my relationship with Virginia Mason is part of that “better.” Whatever I can do to give back is such a small price to pay for the amazing care I received and continue to receive. Thank you, thank you. As my son would say, “You totally rock!”

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This story originally appeared on VirginiaMason.org. Meet other patients who bravely shared their stories of fighting cancer, and get the latest information on cancer treatment outcomes and wellness and support at Virginia Mason.