Patient advisory board Women's Cancers Research programs Breast cancer and Gynecologic oncology

How to involve patients in your research?

• Share research ideas
  It is important to involve the PAB as early as possible in the research process. Also if your research idea is not yet concrete! At start you can plan a meeting to get to know each other.
• Project proposal
  PAB members can comment on (the summary of) your grant proposal, focusing on the clarity of the proposal for ‘non-medics’, the consequen­ces of the research for the patients in the research and benefiting from the research, and the attention to patient participation.
• Interim feedback on current research
  The PAB would like to stay informed about the state of affairs. Especi­ally when the process/results involve a different view on the patients’ perspective/interests.
• Completed research
  What happens after the research has been completed? Was the research considered successful? Why (not)? What did you learn; in general, but also considering the patients’ perspective? To reflect on this together, means we can learn from each other, which is important for future developments. Does the project lead to follow-up research questions?

Examples of patient participation in your research

• Advice on research proposals

  For example a KWF application: STOPOVCA (STOP Ovarian CAncer) study project. It is proposed that women undergo gynecological surgery for a benign problem in order to remove fallopian tubes during this procedure. To prevent development of ovarian carcinoma.

• Support letter for grant application

  By example KWF aanvraag TUBA-WISP II study. "As advisors, we read and commented on the proposal from the patient’s perspective. Then we also discussed the project live with the research leader and current PhD student. We wholeheartedly support this request".

• Advice on questionnaire

  Sometimes one of the researchers asks a patient of the PAB to look at a questionnaire to prevent the formulation of strange or hurtful questions.

• Advice on patient letter

  By example Enose pilot: patients have given feedback on patient information brochure for breath test to detect ovarian cancer.

• Member in steering group

  By example, PC (Principal Clinician) project patient participation in the complication meeting. This project which is about involving patients more in healthcare, including the complication discussion in present of the patient.

• Advisor in ongoing research

  By example Prisma study. After presenting de Prisma I study, patients are involved in how to formulate the question for patients in the Prisma II application for KWF. "Currently, the participants have given permis­sion for the use of their data specifically for breast cancer research. By extending this permission to cancer research in general we could appeal to more researchers".

• Contribute by participation

  By example, one of the patients has worked together with the commu­nication department on a video message to draw attention to a subsidy application for the Radboud Oncology Fund ‘to improve the fact, that providing information about the decline of fertility and fertility preservation and referring to the gynaecologist, will become an integral part of the care for young women with cancer through an oncofertility program’. Besides this, the patients have upfront adviced on the research proposal.

Geralda Brus

- Geralda's story

I am Geralda Brus, I work as an administrative assistant at Webton. At the age of 35 I went to the doctor because I felt a lump in my chest. In the hospital in Hengelo breast cancer was detected with metastasis in the axillary nodes. A mastectomy and removal of axillary nodes followed. Of the 36 glands, 26 glands were affected. Further treatment consisted of first 6 TAC chemotherapy and then 25 more in the hospital in Enschede.

As far as I knew, there was no breast cancer in our family. On my father’s side, other types of cancer did occur. My father had already had prostate cancer. Because I was so young, I was eligible for hereditary research. For this research I had to go to the Radboudumc. At the beginning of 2007 I received the results of the hereditary research and I was found to be a carrier of the BRCA1 gene mutation. In June 2007 I therefore preventively removed my other breast, my ovaries and my uterus in Hengelo, and immediately a reconstruction of both breasts was performed.

After the results of the heredity test, my parents and 2 sisters were also tested. My father and both sisters also have a BRCA1 gene mutation. My youngest sister has undergone a preventive breast surgery with direct reconstruction after the birth of her youngest child. Later she had her ovaries removed. My other sister wanted children and therefore did not opt for preventive operations, but she was under control. To make a long story short, she was operated during her pregnancy and treated for breast cancer in the Radboudumc. After the birth of my niece, she also preventi­vely removed her other breast and ovaries.

Bad luck aside, we have had a lot of luck in our family. We are all there! I realize very well that a number of years ago, we probably would not have survived this disease. Thanks to medical science, great doctors and researchers, we survived cancer. I am very grateful for this. By participating in the Patient Advisory Board Women’s Cancers, I hope to make a small contribution to cancer research and I hope that I can do a little bit for medical science. I also hope that in this way I will help other people who will have to deal with cancer in the future.

Claudia Soede

- Claudia's story

I am Claudia Soede, I have been working at the Radboud campus since 2000: first as a researcher at the Radboudumc (prostate cancer research 2000-2002), then as a researcher at Radboud University (rheumatism research 2002- 2007) and since 2007 as a grant advisor at the Radboudumc.

I knew the Radboudumc practically solely as an employee, until in November 2015 (at the age of  46 years) a nodule in my breast turned out to be a tumor, which had also spread to my armpit glands. After intensive treatment (chemo­therapy, surgery and radiotherapy), I had enough energy to gradually pick up my work again during radiotherapy sessions. Something that really helped me with my recovery. After the radiotherapy I had hormone therapy for another 7 years.

In the summer of 2016, I was approached by a researcher if I wanted to take part in the Patient Advisory Board of the research theme Women’s Cancers, because at the time there were not many women with a breast cancer past in the PAB. After having gathered more information, I agreed. From both my perspec­tive as a patient and as a grant advisor, I hope to make a positive contribution to (funding) cancer research.

Nicoline Soede

- Nicoline's story

I am Nicoline Soede, I work with great pleasure as an associate professor at Wageningen University. In 2014, when I was 50 years of age, I had what appeared to be an easy removable myoma, but turned out to be ovarian cancer with metastases. Fortunately, the chemo worked well (hospital Gelderse Vallei in Ede) and the debulking operation (Radboudumc) was successful although a metastasis was found in my head in August 2016. However, the metastasis was also successfully removed (UMC-Utrecht) and no further signs of the cancer have appeared.
In March 2017 I attended a meeting of the Radboud Research Round of the research theme Women’s Cancer. I did not have to think twice about my participation in the Patient Advisory Board Women’s Cancers; it combines my interest in research with the ability to mean something for future patients. An important role of the board is assessing new research proposals from the patient perspective; is there, for example, attention to the burden of research for the participants? Does the research contribute to a better quality of life? Fortunately, we also get the opportunity to take courses to be able to do that assessment properly and we are regularly updated about current research. Interesting and informative!

Bouwien Oosting

- Bouwien's story

I am Bouwien Oosting, I have worked as a social worker in which I specialized in mourning and loss counseling. I stopped working in 2017 when womb cancer was diagnosed with metastasis in the lymph nodes.

After surgery at the Radboudumc, chemotherapy and radiation therapy followed. During this entire process I experienced the importance of being in control of my disease process and my quality of life. Good communication with doctors and nurses is essential, but unfortunately this is not always obvious. Therefore I've joined the Patient Advisory Board Women’s Cancers.

Doorlene van Tienoven

- Doorlene's story

I am Doorleene van Tienoven, I have been working as an analyst in the laboratory at the Radboudumc for quite a few years. When an innocent-seeming cyst turned out to be breast cancer in October 2014, I got to know the Radboudumc as a patient.

An intensive treatment program followed until April 2016. Where I thought beforehand that a lot would not be possible, partly due to the many research studies for the treatment of breast cancer, it has become a time in which I have been able to do a lot.

Then, in June, when the question came whether I would be interested in participating in the Patient Advisory Board of the research theme Women’s Cancers, I didn’t have to think twice. I wanted to look forward again after all that had happened and participating in the PAB was perhaps the way to do something in a positive way with all the experiences unintentionally made richer. By attending meetings, thinking about a research choice or, for example, assessing research proposals, I hope to contribute to cancer research through the PAB.

Ineke Runneboom (president)

- Ineke's story

I am Ineke Runneboom. In February 2002, I was diagnosed with breast cancer at the age of 31 and a year later I was told that I have the BRCA1 gene mutation. This was not a complete surprise to me because several of my family members have been diagnosed with breast cancer at a young age.

In 2015, I was approached to take part in the Patient Advisory Board of the research theme Women’s Cancers. I have been appointed as the chairman of this board. I find it interesting to be in conversation with researchers and doctors together with other experience experts. This is to contribute to research and communication between doctors and patients from my own expertise.

Patricia Evers

- Patricia's story

I am Patricia Evers, I work as a carer in community care. I also work in a residential care center for the elderly, where well-being is my official focus of attention and where I am also coordinator of the volunteers. Through my work I regularly come into contact with women who have cancer or are cured from cancer. I see what an impact this has on their well-being but also what this means for their loved ones.

In August 2016, I was diagnosed with cancer for the first time. I had a melanoma on my right arm (stage 1b.) Shortly after that operation I was told for the second time that I needed surgery and this time it was vulva cancer. I myself had never heard of this rare form of cancer and neither had many people in my area. Partly due to research, I have been fortunate that my quality of life is good and that I am not physically restricted by my illness. I am very grateful to science and my doctor!

Through my participation in the Patient Advisory Board Women’s Cancers, I hope and wish to make a difference for other women for their well-being and life expectancy. I want to share my own experiences with vulva cancer. I would also like to see more awareness of this form of cancer, unfortunately many women are still ignorant.