Super ASK Patient: An Early Retired Globetrotter Navigates Breast Cancer Treatment Abroad

 

Originally from the U.S., Ellen McGregor Kortan and her husband saved carefully and retired early so they could travel the world. They had been globetrotting continuously for three years when Ellen was diagnosed with breast cancer at the age of 46. We emailed her some questions about her nomadic cancer experience, which she answered while en route from Athens to Singapore:

 

You and your husband describe yourselves as retired budget travelers. What does that mean?

We saved money and lived below our means for many years, so that we could travel before we got too old or too sick for continuous globetrotting. We can afford this lifestyle if we stick to a budget. We live like we lived at home, but now it’s in other countries, typically where our dollars go further.

What was your initial diagnosis, and where were you at the time?

I was diagnosed with ductal carcinoma in situ, or DCIS, commonly called Stage 0 cancer, in Split, Croatia. Cancerous cells were trapped in a milk duct and were not yet invasive, according to the sample analyzed from a stereotactic biopsy. The DCIS covered a large area relative to the size of my breast, and so doctors recommended a mastectomy.

Based on family history, I had a double mastectomy. The pathology report from that operation revealed a tiny invasive tumor in the DCIS area – it measured just 1.5 millimeters. The tiny tumor upstaged my case to Stage 1 breast cancer.

Your case was considered “medically interesting.” How did that influenced your treatment options?

My tumor was so tiny, it’s not common to come across that size. Usually when invasive cancer of my type is found, it’s larger, although radiologists say they are seeing more cases as imaging and detection improve. My tumor was also triple positive, so it was considered aggressive. There is no clear standard of care for tumors of this type and size. This is why my case was called “medically interesting.” There are no right answers – or presumably wrong answers – for treatment for this size and type of tumor. My sentinel node was negative.

The National Comprehensive Cancer Network (NCCN) guidelines, which are used around the world, say patients with node negative, HER2-positive tumors under 10 millimeters should “consider” chemotherapy and trastuzumab (Herceptin), but smaller than 10 millimeters is “unlikely” to require chemotherapy. Anything larger than 1 centimeter gets chemotherapy and Herceptin as standard treatment (see chart 4.2).

Guidelines by the European Society for Medical Oncology (ESMO) make it more confusing – they’re even more “strict,” if you will, than in the U.S. The ESMO guidelines state all patients with node-negative, HER2-positive tumors should get chemotherapy and Herceptin, “except possibly T1a lesions.” T1a is a tumor size classification – 1 to 5 millimeters.

Who did you consult about your treatment options, and what was your initial approach?

I had a bilateral mastectomy in Zagreb, Croatia. In that city, I saw two oncologists who gave completely different treatment recommendations. One of those oncologists was fascinated by my “medically interesting” case and sent it to his colleagues in the European Union, where a panel of three oncologists weighed in. I had another panel of three oncologists from San Francisco weigh in, and they also were divided. The ninth opinion came from my mother’s oncologist in New York.

The opinions ranged from doing nothing beyond the bilateral mastectomy, to taking tamoxifen and skipping other drugs, to taking Herceptin without chemotherapy, to taking Herceptin with chemotherapy.

Tedly and Ellen Kortan in Zagreb, Croatia, August 2018,
the city where Ellen had a double mastectomy.

You also reached out for guidance from ASK Cancer Commons. How did you hear about us?

I joined some Facebook groups for breast cancer support. Getting breast cancer is a horrible thing and I was away from my support network. I also wanted to learn everything I could about my type of cancer, and see if there was any woman who might be remotely like me – receiving breast cancer treatment abroad. In one of those groups, someone suggested I contact Cancer Commons for yet another opinion. I had never heard of the organization before. By that point, I had nine opinions, and was leaning towards a treatment decision, but still was not fully comfortable with it. I was maybe 85.7 percent of the way there. Cancer Commons was officially my tenth opinion.

How did Cancer Commons help you?

Cancer Commons helped give me peace of mind with my treatment decision. Chief scientist Emma Shtivelman’s expert, science-based opinion made such logical sense, and it also felt right in my soul. I’d already been leaning heavily towards a decision, and Emma helped me achieve the final decision. In the end, I decided against Herceptin with or without chemo – without regard for cost or travel, but based simply on the research and expert opinions available to me at the time I made my decision. I am on tamoxifen for the foreseeable future.

But Emma’s more than a scientist. She is a caring person. I reached out to her after my decision for help. She reviewed my summaries on a small website I created to help other people with HER2-positive tiny tumors. The site is mainly a collection of studies somewhat related to that type and size of tumor. There are no studies designed specifically for patients with sub-centimeter HER2-positive tumors – a reason why treatment decisions in cases like mine also are “medically interesting.”

Most medical professionals, as caring as they may be, likely wouldn’t take the time to review a laywoman’s summaries on a blog site dedicated to help patients with HER2-positive tiny tumors. But Emma did. Since September, four women with tumors like mine have reviewed the studies linked on this blog site. I’m thrilled over that. Most newly diagnosed patients don’t have enough time or energy to find this material and read it after a shocking diagnosis. Since I’m early retired, I made the time.

How has being a retired budget traveler influenced your cancer care?

I did not expect health care to be so good outside the U.S. At the same time, finding great, English-speaking doctors is the biggest challenge. For example, I found a highly regarded surgeon in Croatia to perform my double mastectomy without reconstruction. He came recommended by other doctors, and he had a great portfolio. He did a fantastic job from what I can tell. Compared to prices in the U.S., the cost of my surgery was totally reasonable.

It might sound easy, but it takes fortitude to deal with the process. Another example: the Croatian pathologists wrote my mastectomy report in their native language, and sometimes things are lost in translation, so the phrase “breast with goat hair” appears on my Google-translated version. As a breast cancer patient in a foreign country, I can either cry and go home, or laugh it off and realize it’s just one phrase, and the important stuff is implicitly clear – such as the size and features of the tumor.

How has breast cancer influenced your plans as a retired budget traveler?

We are working out future plans. We were not required to buy health insurance this year because we were not going to be in the U.S. For next year, we expect to be in the U.S. later in the year, and so we likely will buy insurance. But it’s worth pointing out that so far, my experience with health care abroad has been excellent, and relatively affordable if forced to pay out-of-pocket in a country with reasonably priced health care. The cost for my double mastectomy was about $3,500 – lower than some U.S. deductibles. That price was only for the surgery. The pathology tests, biopsy, and mammogram were additional costs that also were reasonable.

If I had needed chemotherapy, we would have stayed in Croatia under a medical visa through treatment. If I had decided to take Herceptin, we would have bought the subcutaneous form in oncology offices in different countries. We actually had a plan on what European countries we would visit based on a self-injection schedule of every three weeks. (Self-injections are available in Europe.) My surgeon was ready to help by calling colleagues throughout the EU. Our plans would have been changed, but our retired budget travel dreams could still be realized.

Ellen McGregor Kortan enjoying the blue Ionian Sea
on Lefkada Island in Greece, September 2018.

What comes next for you?

I’m responding to your questions on a flight from Athens to Singapore. Next month, we will be in Kuala Lumpur, Malaysia, and it will be six months since my initial diagnosis. I am about to start my search for highly regarded doctors in Kuala Lumpur for my needed checkups. I feel great, and our plan is to move beyond the six-month mark and continue traveling around Southeast Asia for the foreseeable future.

What advice would you give to someone who is newly diagnosed with breast cancer?

Get a second opinion, and maybe a third or a fourth, too, even if your cancer case is more common than mine. Don’t be rubber-stamped through treatment. Cancer Commons is an amazing free service that helped give me peace of mind with my ultimate treatment decisions.

Also, hang in there. A breast cancer diagnosis is not easy. You’re about to go on a journey that will change you. Give yourself time to process everything. Give yourself plenty of extra care, and respect.

Is there anything else you’d like to share?

There are no absolute answers when it comes to dealing with cancer treatment – only probabilities based on the experiences of different people with similar cancers. But I absolutely know this: I made the best decision I could and I’m comfortable with it.

You hear the phrase, “you only live once,” and it registers. You logically know it to be true. But cancer changed my understanding of that cliché. Life is now, not later, and so I’ll live the best life I can – right now.

Learn more about Ellen’s life as a retired budget traveler on her blog, Earth Vagabonds. You can also follow her on Twitter and Instagram.

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Super Patients are cancer survivors who learned to be more engaged in their own care. Cancer Commons believes every patient can be a Super Patient or benefit from a Super Caregiver or Super Advocate. We hope these stories will provide inspiration and hope for your or your loved one’s own treatment journey.


Double Mastectomy to Prevent Breast Cancer Reduces Risk of Dying from the Disease in BRCA1 Mutation Carriers – but Does Not Reduce Further the Already Low Risk in BRCA2 Carriers

Excerpt:

“Healthy women who carry a breast cancer-­causing mutation in the BRCA1 gene, not only reduce their risk of developing the disease but also their chances of dying from it if they have both breasts removed, according to new research presented today (Wednesday) at the 11th European Breast Cancer Conference.

“However, the study also found that for women with a mutation in the BRCA2 gene, there was no difference in their chances of dying from the disease whether they opted to have their breasts removed (bilateral risk-­reducing mastectomy or BRRM) or chose to have closer surveillance instead.”

Go to full article.

If you’re wondering whether this story applies to your own cancer case or a loved one’s, we invite you to use our ASK Cancer Commons service.


Physicians’ Misunderstanding of Genetic Test Results May Hamper Mastectomy Decisions

Excerpt:

“A recent survey of over 2,000 women newly diagnosed with breast cancer found that half of those who undergo bilateral mastectomy after genetic testing don’t actually have mutations known to confer increased risk of additional cancers, according to a study by researchers at the Stanford University School of Medicine and four other U.S. medical centers.

“Instead the women had what are known as variants of uncertain significance, or VUS, that are often eventually found to be harmless. A bilateral mastectomy is a surgical procedure in which both of a woman’s breasts are removed after a diagnosis of in one breast.”

Go to full article.

If you’re wondering whether this story applies to your own cancer case or a loved one’s, we invite you to use our ASK Cancer Commons service.


Super Patient: Honesty and Openness Help Lori Through the Holidays


Update:  We are deeply saddened to report that Lori passed away on October 20th, 2018. It is a privilege to continue to share her story and help keep her memory alive.

When it comes to the holiday season, Lori Wallace, a mother of two sons, is accustomed to being in charge. “I’m the mom, I’m kind of the epicenter of my family,” she says. “So I make Christmas.”

But in early April of 2011, Lori woke up with pain in her breast from what she thought was a small toy left in her bed by her five-year-old. No toy was there, and the pain persisted. She soon had her diagnosis: stage IIA invasive ductal carcinoma. Continue reading…


Video: Dr. Ann Partridge on Epidemic of Bilateral Mastectomies in Breast Cancer

“Ann Partridge, MD, MPH, breast medical oncologist, Dana-Farber Cancer Institute, discusses optimal local therapy for women with breast cancer. Partridge says that while studies have shown that lumpectomy followed by radiation is the equivalent of having a mastectomy, there continues to be a growing epidemic of women getting a bilateral mastectomy for unilateral breast cancer. These surgeries include women who are not at high-risk.

“Partridge says these bilateral mastectomies should be better explained to women who opt to have them. She adds that the common misconception is that once both breasts are removed, a patient is cancer free and “the hard part” is over. Partridge says the complications for women who opt to reconstruct their breasts after a bilateral mastectomy still poses significant health risks.”

Click through to watch the video.


Sharp Rise in Mastectomy in Early-Stage Breast Cancer

The gist: Despite breast conservation surgery (lumpectomy) becoming “a standard of excellence” for breast cancer, more and more women with early-stage breast cancer are opting for more invasive surgeries like mastectomy, bilateral mastectomy, and breast reconstruction. This trend sticks out because many other kinds of surgery have become less invasive. Lumpectomy and mastectomy give the same survival outcomes for most women with early-stage breast cancer.

“A retrospective cohort study of more than 1.2 million women treated for early-stage breast cancer in the United States has confirmed rising trends in the proportion of patients who undergo mastectomy, bilateral mastectomy, and breast reconstruction rather than breast conservation surgery for which they are eligible. Findings were reported in JAMA Surgery by Kristy L. Kummerow, MD, of the division of surgical oncology and endocrine surgery, and colleagues at the Vanderbilt University Medical Center and Tennessee Valley Healthcare System, Nashville, Tennessee.

“Breast conservation surgery was endorsed by the National Institutes of Health Consensus Conference in 1990 after studies demonstrated equivalent outcomes with mastectomy in early-stage breast cancer, ‘and has become a standard of excellence in breast cancer care,’ noted the authors. Accredited breast centers in the United States are thus measured on performance of breast conservation surgery in more than 50% of women who are eligible.

“All participants in the study were treated at centers accredited by the American Cancer Society and the American College of Surgeons Commission on Cancer from January 1, 1998, to December 31, 2011, using the National Cancer Data Base. The study was designed to determine the proportion of women with early-stage breast cancer who underwent mastectomy. Secondary outcome measures included temporal trends in breast reconstruction and bilateral mastectomy for unilateral disease.”


Double Mastectomies Don't Yield Expected Results, Study Finds

“More women are choosing to have bilateral mastectomies when they are diagnosed with early-stage breast cancer, even though there’s little evidence that removing both breasts improves their survival compared with more conservative treatments.

“The biggest study yet on the question has found no survival benefit with bilateral mastectomy compared with breast-conserving surgery with radiation.

“The study, published Tuesday in JAMA, the journal of the American Medical Association, looked at the records of all women in California who were diagnosed with early-stage breast cancer from 1998 to 2011 — 189,734 women, all told.

“Women who had breast-conserving surgery had an 83.2 percent survival rate at 10 years, compared with 81.2 percent for those who had a double mastectomy. That meant that women who had breast-conserving surgery, also known as lumpectomy, did better and also avoided the risks of major surgery and loss of a healthy breast.

“The study also looked at women who had a single mastectomy, which was the least popular option. They fared worse, with a 79.9 percent survival rate, enough to be statistically significant.”