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.


Small Benefit Seen in Adding Radiation to DCIS Plan for Breast Cancer

Excerpt:

“Patients with ductal carcinoma in situ (DCIS) are often treated with radiation after lumpectomy, although it has remained unclear whether this can reduce the risk of dying from this noninvasive form of breast cancer. A new study published Friday said that the combination of the 2 treatments was associated with a small benefit in reduced risk of breast cancer death compared with lumpectomy or mastectomy alone.”

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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.


Study Shows Strong Evidence Supporting Radiation Boost to Tumor Bed in Ductal Carcinoma in Situ

Excerpt:

“A radiation boost to the local tumor bed following treatment with breast-conserving therapy (ie, local excision followed by whole-breast radiation therapy) improves local control for patients with ductal carcinoma in situ, according to a study of pooled data from 10 academic centers, presented at the 58th Annual Meeting of the American Society of Radiation Oncology (ASTRO). The magnitude of improvement is similar to that seen for a radiation boost in invasive breast cancer.”

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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.


Benefit of Radiation Boost in DCIS Validated

Excerpt:

“A radiation boost to the tumor bed led to a small but statistically significant reduction in breast cancer recurrence after breast-conserving therapy for ductal carcinoma in situ (DCIS), a randomized study showed.

“Women who received the radiation boost had a 15-year freedom from ipsilateral recurrence of 91.6% compared with 88.0% for patients who had lumpectomy and adjuvant irradiation but not boost to the tumor bed. The additional protection afforded by the radiation boost encompassed both DCIS and invasive recurrence.”

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


Guidelines Establish Minimum Negative Margins in DCIS

Excerpt:

“Three medical organizations including the American Society of Clinical Oncology (ASCO) have issued a guideline on margins in breast conserving surgery for patients with ductal carcinoma in situ (DCIS). The new recommendations are published online ahead of print in the Journal of Clinical Oncology.

“The panel of experts from ASCO, the Society of Surgical Oncology (SSO), and the American Society for Radiation Oncology (ASTRO) recommend the use of 2-mm margins as a standard in breast conserving surgery for DCIS treated with whole-breast irradiation. Margins of 2 mm are ‘associated with low rates of ipsilateral breast tumor recurrence and has the potential to decrease re-excision rates, improve cosmetic outcome, and decrease health care costs,’ wrote Monica Morrow, MD, of the department of surgery at the Memorial Sloan Kettering Cancer Center in New York, and coauthors. ‘Clinical judgment should be used in determining the need for further surgery in patients with negative margins less than 2 mm. Margins more widely clear than 2 mm do not further reduce the rates of recurrence of cancer in the breast and their routine use is not supported by evidence.’ ”

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Testing After DCIS Needle Biopsies: $35 Million Boondoggle

Excerpt:

“In the United States, a common practice in the management of ductal carcinoma in situ (DCIS) costs an estimated $35 million a year, but is unnecessary, according to a new study.

“Automatically testing core needle biopsy DCIS specimens for hormone receptors is wasteful for a variety of reasons and should be abandoned, say the researchers, led by Pedram Argani, MD, a surgical pathologist at Johns Hopkins Hospital in Baltimore.

“The study was published online June 13 in the American Journal of Surgical Pathology.

“Core biopsy testing is not needed because the results do not influence the next step in standard therapy — surgical excision. Testing can be done later, if needed, on the larger excised specimen, Dr Argani and his colleagues explain.”

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Do you have questions about this story? Let us know in a comment below. 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.


Delays in Radiation Therapy Increase Chance of Breast Tumor Development in Women Treated for Ductal Carcinoma in Situ

Excerpt:

“Women who underwent treatment for ductal carcinoma in situ (DCIS), a noninvasive breast abnormality, were at higher risk of developing malignant breast tumors if they did not receive timely radiation therapy as part of their treatment, according to a study presented here at the AACR Annual Meeting 2016, April 16-20.

“DCIS is the most common premalignant breast lesion, with over 60,000 women diagnosed each year. Not all DCIS will develop into invasive cancer, but because it is difficult to predict which cases will become cancerous, most women diagnosed with DCIS undergo treatment for it.

“ ‘According to the National Comprehensive Cancer Network guidelines, primary treatment options for DCIS include breast-conserving surgery plus radiation, total mastectomy, and breast-conserving surgery alone,’ said the study’s lead author, Ying Liu, MD, PhD, instructor of surgery at Washington University School of Medicine and a research member at Siteman Cancer Center in St. Louis, Missouri. ‘This study shows that it is important for women to understand the benefits of timely receipt of radiation therapy after breast-conserving surgery.’ ”

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Do you have questions about this story? Let us know in a comment below. 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.


Does Radiation Therapy Improve Survival for Women With Ductal Carcinoma in Situ?

“Approximately 60,000 patients in the United States will receive a diagnosis of ductal carcinoma in situ (DCIS) in 2016. DCIS is not an invasive form of cancer and the 10-year survival rate for women with DCIS is greater than 98 percent. However, incidence of DCIS has increased dramatically over the last three decades, and being able to determine which women are among the small percentage at higher risk of breast cancer recurrence and mortality could help clinicians and patients tailor treatment to neither over treat nor under treat the disease. Investigators from Brigham and Women’s Hospital (BWH) and the Dana-Farber Cancer Institute have found that a set of easily measurable risk factors can predict the magnitude of survival benefit offered by radiation therapy following breast cancer surgery. Their results appear online in the Journal of Clinical Oncology on Feb. 1.”


Two Drugs Equal For Early Breast Cancer

“Postmenopausal women who have an early, noninvasive form of breast cancer had similar recurrence rates of disease whether they took the drug tamoxifen or the aromatase inhibitor anastrozole after surgery, new research shows.

“However, the side effects of the two medications differed greatly, said study author Jack Cuzick, director of the Wolfson Institute of Preventive Medicine at Queen Mary University of London, England.

“His team looked at nearly 3,000 women, all past menopause, who had hormone-receptor positive ductal carcinoma in situ (DCIS) breast cancer and underwent surgery to excise it. With DCIS, the cells that line the milk ducts have changed but not spread into the surrounding breast tissue.”