What about phyllodes tumor? Dutch patient advocates honored for pioneering work to develop treatment guidelines
by Natalia Fernández Diaz-Cabal
Marloes Esterik presented the project “Only together. From nothing to treatment protocol and financing research” at the SPAGN Annual conference in Washington DC in April 2025.
Marloes and Marco van Esterik live in the city of Lelystad, capital of the Dutch polder of Flevoland. I spoke with Marloes, a phyllodes tumor patient, so she could tell us first-hand a little about her experience with the tumor and how her small phyllodes association in the Netherlands came about and grew stronger.
Marloes, 56 years old, does not hesitate to recall her long experience, since her teenage years, of always having benign tumors in her left breast. They were very recurrent, and, in a way, she had become accustomed to them. What she did not expect in 2013 was that on that occasion the diagnosis would be different: a borderline phyllodes tumor. I ask her to tell us more about what a phyllodes tumor is, and she explains what she has learned through experience: a tumor normally located in one breast that is either borderline (a limbo between benign and malignant) or directly malignant. In general, the only treatment, amid much uncertainty, is surgery with margins, although she has tried radiotherapy and has had no relapses since –“I don't know what my life would have been like without radiotherapy, because I haven't experienced it”.
When she was diagnosed, she and her husband Marco realized that no one knew much about the disease: not the oncologist nor the radiology nurse, who sincerely confessed that she did not know what tumor Marloes was getting radiation for. Marloes speaks at a lively pace, as if she wants her story to be captured forever in words.
The Board members of the Dutch Phyllodes Group – Marloes Esterik on the far left, her husband Marco next to her, then Corrie Kamminga and Andrea Roëll.
But her tone changes and her eyes light up when she talks about Marco, her husband: he is the heart and soul of the association. He is the one who has sought out reliable information. He is the one who has established contact with experts. He is the one who comes up with activities to keep things going. He is the one who knocks on every door. Thanks to him, this small Dutch association for a very rare tumor has a board of three members (Marloes herself and two other patients, Corrie and Andrea) and Marco. There are also 15 members, who have or had a phyllodes tumor. All of them constitute the Dutch Phyllodes group as part of the Patient Platform Sarcomen in the Netherlands.
And so, little by little, Marco has left the family bakery business, leaving him time to devote himself to the association. Marloes, on the other hand, has returned to her former job as a hospital pharmacy technician. All this despite the long-term effects of radiotherapy.
When Marloes was diagnosed with phyllodes, they contacted the Dutch breast cancer group. But they were told that this was not the right place for them. Finally, they spoke to the Dutch Sarcomapatient Federation and were warmly welcomed: they are rare among other rare patients. And from there, they centralize all their actions. One of the next is a benefit concert. And last but not least, a phyllodes symposium in Florida in two months' time. Their little boat has managed to sail smoothly and has two of the most prominent experts on phyllodes on board, Laura Rosenberg in the US, and Frederieke van Duijnhoven in the Netherlands.
They are well aware that the path of rarity cannot be travelled alone. And they have not ceased to be the voice of patients with this rare tumor. They do so by being accessible at all times and in all places: Marco's telephone number appears on social media for anyone who wants to know more about phyllodes or simply to know that they are not alone on this journey. Once, Marco told Dr. Duijnhoven that they would never have come this far without her help. And Dr. Duijnhoven replied to Marco that she would not have been motivated to investigate further without his encouragement and motivation. The paths go in two directions. Synergies feed off each other.
If you just wanna go fast – do it alone
But if you really wanna go far
Don’t go on your own
Only together we can get this right…
Credits: Cover graphics by Natalia Fernández provided to SPAGN for publication @nataliafernandezdiazcabal; photo (board members) provided by Marloes Esterik to SPAGN for publication; photo (Presentation) by SPAGN.
Bio:
Natalia Fernández Díaz-Cabal, sarcoma survivor and patient advocate, is member of the ASARGA board and of SPAGN’s editorial team of Voices of Sarcoma. She holds a Ph.D. in Linguistics and in Philosophy of Science.