Dutch Phyllodes Group
General information
As you may have discovered, it is difficult to find any information about phyllodes tumors, let alone reliable information. This rare type of tumor is often an odd one out, as it lies precisely between breast cancer and sarcomas. It is therefore often difficult for both doctors and patients to find the right information.
Dutch Phyllodes Group helps to make reliable information available and links up doctors and patients.
What we do
We are a support group made up of phyllodes tumor patients and their close relatives. Our main aim is to improve the quality of life of phyllodes tumor sufferers, which we do in various ways.
- We are constantly engaged in collecting information relevant to phyllodes tumor patients – about studies, treatment methods or tumor recurrence – and making it easy to find.
- We also promote contacts with fellow sufferers. As phyllodes tumors are so rare, patients can easily feel alone, or they may have questions that a doctor cannot answer. Contact with fellow sufferers is consequently very important, as it tells you that you are not alone!
- Finally, we promote and fund research into phyllodes tumors: we are closely involved, for instance, in developing a new guideline for phyllodes tumor treatment. We also seek to collaborate with experts worldwide.
Who we are?
Marco van Esterik
Contactgroep PhyllodesBoard member, partner of Marloes, and driving force behind the Dutch Phyllodes Group.
Click here for the article about Marco (Leven magazine, December 2018).
Marloes van Esterik
Contactgroep PhyllodesBoard member and expert with personal experience of recurring borderline phyllodes tumors since 2013, our columnist.
Click here for a column by Marloes (Leven magazine, July 2021).
Corrie Kamminga
Contactgroep PhyllodesBoard member and expert with personal experience of a borderline phyllodes tumor in 2018, our copywriter.
Click here for the article about Corrie (Leven magazine, August 2020).
Andrea Röell
Contactgroep PhyllodesBoard member and expert with personal experience of a malignant phyllodes tumor in 2017, our photographer.
Click here for the article about Andrea (Leven magazine, July 2019).
Dr. Frederieke van Duijnhoven
Contactgroep PhyllodesDr Frederieke van Duijnhoven is attached to the Dutch Phyllodes Group as an oncology surgeon. She started work on a study of phyllodes tumors in 2020 to enable a clear-cut guideline on its treatment to be developed.
Click here for an article about Dr Van Duijnhoven (Leven magazine, August 2020).Contact with fellow sufferers
As with many other medical conditions, many patients like to be able to talk with fellow sufferers. In particular, acknowledging each other’s problems, not needing to explain your diagnosis all the time, and sharing feelings can often relieve the tension and insecurity surrounding the diagnosis.
We therefore try to contact as many patients as possible and bring them together. We organize online coffee breaks, for instance, and host contact days to meet each other ‘in the flesh’, with events such as talks by professionals.
If you register with Sarcoma Patient Platform you will automatically be kept informed of new coffee breaks or contact days.
Contact with fellow sufferers
As with many other medical conditions, many patients like to be able to talk with fellow sufferers. In particular, acknowledging each other’s problems, not needing to explain your diagnosis all the time, and sharing feelings can often relieve the tension and insecurity surrounding the diagnosis.
We therefore try to contact as many patients as possible and bring them together. We organize online coffee breaks, for instance, and host contact days to meet each other ‘in the flesh’, with events such as talks by professionals.
If you register with Sarcoma Patient Platform you will automatically be kept informed of new coffee breaks or contact days.
Social media
Facebook
https://www.facebook.com/groups/1884253511892522
This is a Dutch-speaking group set up by the Dutch Phyllodes Group.
https://www.facebook.com/groups/PhyllodesSupportGroup
This is an international, English-speaking, fairly active group where a good deal of information and support is shared. It is not connected with Dutch Phyllodes Group.