You don’t have to go
through this alone
From the moment I was diagnosed I started writing and talking to my friends and family. I am privileged to have a lot of friends who are themselves coaches. Which does not mean that they are all capable of supporting me mentally. I made a point of telling my loved ones what I need. They all supported by showing up, holding space, taking me for walks, sending me cards, text messages, arranging massages for, buying me a cat… Of course this is in the first 6 months. After that everyone settled in to me having this disease and still living and thriving.
Support
These groups I found online or were referred to me in my search for support and stories form real time cancer bravehearts instead of only diving into data. But also the people who can help you advocate your cause.
Sarcoma - information for Leiomyosarcoma families USA
Here you will find loads of infromation on leiomyosarcoma in the USA.
Also a list of the most popular and well-known sites.
Centrum Kwaliteit voor Leven
In December 2021 not long after my diagnosis I knocked on the door of the Centre for Quality of Life – Centrum Kwaliteit van Leven in the Netherlands in the Antoni van Leeuwenhoek Hospital. They immediately assigned me a support consultant who has a background in cancer health care. We met once a month online until August 2022. She was a neutral sounding board who made me feel I was on the right path. At least the one meant for me.
LMS Support group and Resources - Global
I am a member of this facebook support group even though it is USA based. Because of the limited cases of uterine leiomyosarcoma, there is no support group in Europe. This a private group where I have found a lot of knowledge, love and understanding. Meant for both cancer thrivers as their caregivers. To join use this link.
Inspire2Live - Peter Kapitein
Care for Cancer
Leiomyosarcoma Bootcamp for newly diagnosed
LMS Boot Camp webinars were written by Sharon Anderson, President of Leiomyosarcoma Support & Research Foundation. She talks openly and frankly about the most important things you need to know to survive. Sharon’s knowledge comes from her research, discussions with sarcoma experts and personal experience helping patients since 2002, after she was diagnosed with stage 4 ULMS. For more guidance from leiomyosarcoma survivors see Words of Wisdom.
Collaborate
Below names of specialists and experts I know, have spoken to, read of or who have been referred to me by my network on my own search for information to get a grip on what I am dealing with.
The Netherlands Cancer Institute - Antoni van Leeuwenhoek - Prof. Dr. van de Graaf (my oncologist)
Prof. Rare Cancers Nijmegen - Carla van Herpen
Van Herpen is the first Professor of Rare Cancers in the Netherlands. She will work to improve survival rate and quality of life for patients with rare cancers, paying special attention to salivary gland cancer and head and neck cancer. Rare cancers are characterised by poorer survival rates than more frequently observed cancers because there is often a delay in making the correct diagnosis, fewer adequate therapies are available, and fewer clinical trials are being set up for them.
Mayo Clinic
Mayo Clinic’s long history and experience in treating soft tissue sarcoma is important when dealing with a rare disease in which subtle differences must be recognized to make the right diagnosis and recommend and execute the best treatment.
Each year, Mayo Clinic doctors care for more than 2,000 people with soft tissue sarcoma, including very rare types. This means your care team is prepared with the knowledge and resources to provide you with exactly the care you need.
Sarcoma Patient Network en Sarcoma Centres Worldwide
- Identifying problems, challenges, and unmet medical needs in sarcoma management, helping find solutions to improve the situation in collaboration with all relevant stakeholders.
- Raising awareness for sarcomas in order to facilitate early diagnosis.
- Supporting and strengthening treatment by specialist teams using consensus guidelines.
- Delivering research that is adequately funded, coordinated and patient-centric
Leidsche University Medical Centre LUMC
The LUMC has a leading role in the European Expertise Committee Sarcoom. The experts in Leiden have international contacts.
Prof. Robin Jones Sarcoma unit Royal Marsden UK
Professor Robin Jones – leading one or the largest sarcoma units here in the UK high-grade radiotherapy is usually offered first to assess response before the more aggressive treatments.
Chirurg Diaconessenhuis - Thijs van Dalen
A message from my network: a surgeon with a lot of experience with leiomyosarcoma (there are not a lot of experts). I think he helped write the protocols for LMS.
Erasmus MC - Dr. Nuyttens specialist Cyberknife Radiation
He is the only one in the Netherlands who masters this method. He took the time to call me and explain to me what my options are.