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.

***

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.”

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.


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.


FAQs After Diagnosis: Early Stage Hormone-Positive Breast Cancer


This post is written by ASK Cancer Commons Scientist and Product Team Member Amanda Nottke, PhD. Dr. Nottke regularly provides guidance to patients through our ASK Cancer Commons service.

After a diagnosis of early stage, hormone-positive breast cancer, you may find yourself facing several daunting decisions, such as choosing between the extensive surgery of mastectomy versus a more minor lumpectomy procedure paired with radiation (with all its challenging side effects). And once surgery is complete, what next? Hormone therapy is clearly indicated for many women, but which drug, and how long to take it? And what about chemo—how to know if the tough side effects are worth the possible reduction in risk of recurrence?

Fortunately, there are a wealth of quality datasets available to inform these decisions. Below are some of the questions we get most frequently from patients using our ASK Cancer Commons service, answered according to the latest thinking from scientific literature and our expert physician network. If you are facing your own cancer treatment decisions and would like free one-one-one expert support, please submit your case here.

1. If my doctor has said either mastectomy or lumpectomy plus radiation are appropriate for me, how do I choose?

Many studies have looked at this, and overall the outcomes for mastectomy versus lumpectomy plus radiation are extremely similar (both are effective treatments, so you can instead weigh the side effects of radiation versus the more intensive surgery of the mastectomy). This webpage provides a helpful summary of the pros and cons of mastectomy compared to lumpectomy. Continue reading…


How Decision-Making Habits Influence the Breast Cancer Treatments Women Consider

Excerpt:

“A new study finds that more than half of women with early stage breast cancer considered an aggressive type of surgery to remove both breasts. The way women generally approach big decisions, combined with their values, impacts what breast cancer treatment they consider, the study also found.

“Contralateral prophylactic  – a procedure to remove both breasts when  occurs in only one breast – has become increasingly popular in recent years, with more than 20 percent of  opting for it. For most women, removing the unaffected breast does not improve survival.”

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.


Anti-Inflammatory, Anti-Stress Drugs Taken Before Surgery May Reduce Metastatic Recurrence

Excerpt:

“Most cancer-related deaths are the result of post-surgical metastatic recurrence. In metastasis, cells of primary tumors travel to other parts of the body, where they often proliferate into inoperable, ultimately fatal growths.

“A new Tel Aviv University study finds that a specific drug regimen administered prior to and after surgery significantly reduces the risk of post-surgical cancer recurrence. These medications, a combination of a beta blocker (which relieves stress and high blood pressure) and an anti-inflammatory, may also improve the long-term survival rates of patients. The treatment is safe, inexpensive—two medications similar in price to aspirin—and easily administered to patients without contraindications.”

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.


Post-Mastectomy Fat Grafting Boosts Patient-Reported Outcomes

Excerpt:

“Women with breast cancer who undergo autologous fat grafting following post-mastectomy breast reconstruction want a breast that looks and feels more natural and say it makes life better psychologically, emotionally, and sexually, according to researchers.

“Results from the ongoing Mastectomy Reconstruction Outcomes Consortium (MROC) study now show that fat grafting is effective and safe and that it does not increase risk for breast cancer recurrence or intervene with breast cancer screening.”

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.


More Women With Breast Cancer Opt to Remove Healthy Breast

Excerpt:

“One in three breast cancer patients under 45 removed the healthy breast along with the breast affected by cancer in 2012, a sharp increase from the one in 10 younger women with breast cancer who had double mastectomies eight years earlier, a new study reports.

“The rate is especially high in some parts of the country, the study in JAMA Surgery found. Nearly half of younger women in five neighboring states — Nebraska, Missouri, Colorado, Iowa and South Dakota — had double mastectomies in 2010-12. Women often remove the healthy breast so they don’t have to worry about developing another cancer, even though there is no evidence that removing the healthy breast extends lives.”

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.


Breast Conserving Surgery Plus RT Better Than Mastectomy in Some Patients

Excerpt:

“A large registry study found that certain breast cancer patients gain a significant survival benefit with breast conserving surgery plus radiation therapy (BCT) compared with mastectomy. This includes patients over the age of 50 with T1–2N0–1 disease, and other factors.

“Studies comparing those options have often excluded elderly patients, or those with existing comorbidities. The new study involved two time cohorts from a Netherlands registry, one with 55,802 patients diagnosed between 1999 and 2005, and another with 65,394 patients diagnosed between 2006 and 2012. The results were presented by Mirelle Lagendijk, MD, of the Erasmus MC Cancer Institute in Rotterdam, at the European Cancer Congress 2017 in Amsterdam.”

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.