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.


No Regrets After Double Mastectomy, but Questions Remain

Excerpt:

“Vivien Foldes says she does not regret having her breasts removed five years ago after she was found to have an early-stage cancer.

“But there are things Ms. Foldes, a 58-year-old accountant from Woodmere, N.Y., wishes she had known when she chose a double mastectomy, like the fact that the process of reconstruction would drag on for five months and leave her forever unable to sleep on her stomach. Or that it would leave her with no sensation ‘from the front all the way to the back in the entire bra area,’ she said. ‘Nothing. Zero. Zip.’

“Ms. Foldes says there are days that she asks herself, ‘Should I have done it?’ But, she said, her mother had two types of cancer, and she wanted to be proactive: ‘I didn’t want to be waiting for the other shoe to drop.'”

Go to full article.

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.


More Women With Cancer in One Breast Are Having Double Mastectomies. That Might Not Be a Good Idea.

“For years, doctors and researchers have been concerned about a surprising trend: More and more women with early-stage cancer in one breast were choosing to have double mastectomies to reduce the risk of cancer in the other.

“Many of the patients said they thought an aggressive approach would help their quality of life by lessening their worries about future cancer and making them more comfortable with their bodies.

“But new evidence released Monday shows that the surgery doesn’t improve peace of mind or quality of life very much.”


Public Awareness of Surgical Options for Breast Cancer Improves

“The public’s awareness of reconstructive breast surgery options were boosted following media coverage of Angelina Jolie’s hereditary disposition to breast cancer and preventive double mastectomy in 2013. The results of a prospective, public survey were published earlier this week in Cancer.

“Significantly more women were aware of reconstructive breast surgery options after mastectomies for breast cancer. About 20% of the 205 women polled communicated that their awareness and interest in breast cancer stemmed from the media coverage of Angelina Jolie. The survey results suggest that media coverage can improve the health IQ of the public.

“ ‘The results underscore the importance of a media-related impact for professionals in the health care sector, which can serve as a tipping point for raising awareness and improving knowledge concerning a specific disease among the general public,’ wrote David Benjamin Lumenta, MD, of the department of surgery at the Medical University of Graz in Austria, and colleagues.”


Breast Cancer: Study Finds Rise in Double Mastectomy Among Men

“The rate of double mastectomy among men with breast cancer increased significantly between 2004 and 2011, reveals a new study published in JAMA Surgery.

“According to the American Cancer Society, many people are unaware men can develop breast cancer, but they account for 1% of all breast cancer cases in the US.

“While breast cancer in men is around 100 times less common than in women, a 2012 study from The American Society of Breast Surgeons found men are less likely than women to survive the disease.

“Among women with invasive breast cancer in one breast, there has been a significant increase in double mastectomy – the surgical removal of both the cancerous and unaffected breast – rising from 2.2% in 1998 to 11% in 2011.”


Doubt Is Raised Over Value of Surgery for Breast Lesion at Earliest Stage

“As many as 60,000 American women each year are told they have a very early stage of breast cancer — Stage 0, as it is commonly known — a possible precursor to what could be a deadly tumor. And almost every one of the women has either a lumpectomy or a mastectomy, and often a double mastectomy, removing a healthy breast as well.

“Yet it now appears that treatment may make no difference in their outcomes. Patients with this condition had close to the same likelihood of dying of breast cancer as women in the general population, and the few who died did so despite treatment, not for lack of it, researchers reported Thursday in JAMA Oncology.

“Their conclusions were based on the most extensive collection of data ever analyzed on the condition, known as ductal carcinoma in situ, or D.C.I.S.: 100,000 women followed for 20 years. The findings are likely to fan debate about whether tens of thousands of patients are undergoing unnecessary and sometimes disfiguring treatments for premalignant conditions that are unlikely to develop into life-threatening cancers.”


Study Finds Misperceptions About Impact of Double Mastectomy

“A survey of women with breast cancer found that nearly half considered having a double mastectomy. But of those who considered it, only 37 percent knew that the more aggressive procedure does not improve survival for women with breast cancer.

“Among women who received a double mastectomy, 36 percent believed it would improve their survival. Studies have shown that for women at average risk of a second cancer, removing the unaffected breast does not meaningfully improve survival.

“The study, which was presented at the American Society of Clinical Oncology annual meeting, looked at 1,949 women who had been treated for . About 20 percent of the women surveyed had both breasts removed, a procedure called contralateral prophylactic mastectomy. Even among patients without a genetic mutation or family history that might put them at risk of developing cancer in the other breast, 19 percent had double mastectomy.”


Even for Tiny Lumps, More Women Are Choosing Double Mastectomy

“Nearly 25 years ago, the National Cancer Institute declared that women with early-stage breast cancer could be spared mastectomies. The institute acted after studies found that breast removal offered no survival benefits over removing just the lump and following up with radiation treatments.

“This caused the pendulum to swing hard away from mastectomies, from a rate of nearly 100 percent in the 1980s for patients with small tumors that had not spread beyond the breast or surrounding lymph nodes to less than 40 percent today.

“Now, though, the pendulum is starting to swing back in a surprising way.

“Breast surgeons have recently seen a surge in patients with small nonaggressive tumors who opt to have one or both breasts removed (including the one that’s cancer-free) rather than removing just the malignant lump in one, called a lumpectomy.”