Trying to relax after the news

We were planning to go on holiday a couple of days after the scan, before the news messed things up. For the third time this year....

We booked a holiday for January 2020, but Phyll was there so we had to cancel.

We booked a trip with my parents to visit the family in Italy during Easter 2020, but Corona was there.

Nothing booked for August 2020 as with Corona we just wanted to wait and see what the options were there last minute. We only took 3 weeks off and wanted to book last minute. But there was Phyll again with a bigger squad.

After the news of 10 August and the visit at the 2 cancer clinics afterwards, we decided to get out for a couple of days, hoping that we were able to relax a little bit and feeling that now is the time to enjoy life and each other as much as possible. As options were limited due to Corona we decided to drive to France. We enjoy every day that is given, but at this time emotions are still too much present.

10th of August, the day that everything collapsed

After finishing my treatment at a local hospital in Rotterdam and a second opinion at a reputable Cancer Institute in Amsterdam in January of this year (2020), the doctors concluded that no further treatment was necessary and that every 3 months check ups could be continued at the local hospital. A CT scan was proposed only once a year, although I was free to decide when. So I had my first check up in April, where the hospital made a huge mistake but that story is for later.

During the second check round they did the CT scan and l was informed that the cancer was metastasized to my lungs. I was full of questions but the doctor was not able to answer any of them. I was told to be transferred to another hospital, Erasmus University Medical Center and that I should save my questions for the new doctor. Erasmus MC is one of the best institutes in the world and number one ranking in the top of European institutions in clinical medicine. Because of the rareness of my disease there have already been consultation for my treatment in December 2019 between the local hospital and Erasmus MC.

My doctor informed me that the new doctor at Erasmus MC was going to call me the day after. At one question she did gave answer: " Is it palliative?" The answer was yes...

Telling the family

Totally broken my husband and I left the hospital, holding each other like there's no tomorrow. Strangled up in disbelieve, we're a team, soulmates, we can't be separated! And then knowing we have to tell our families. We went to my parents house, my mother started screaming and I saw my father's spirit going numb. My sister, my best friend, was on vacation in Italy. I video called her. She was in the car, although she wasn't driving I was in doubt to tell her afraid of causing a car accident. But because of my hesitation, she knew it was bad and burst into tears. This can't be happening, we can't be separeted! My brother in law also crushed and while driving the Italian Autostrada he was trying to park the car. They decided to come home immediately.

And that was just act one, act two up to come: My family in law. My mother in law lost her husband two years ago due to cancer and we didn't want to tell her knowing that we had to leave her behind alone without someone to hold her afterwards. Therefore we decided to go to my sister in law and lured my mother in law to her home to tell them the bad news.

Last, but not least act three: our boys. My husband called them to come home and they came right away. The boys are teenagers, they had no words, they were just hugging, so powerful!

That day I broke, so much pain. I'm going to die and leave everybody I love behind in so much pain.

The days after: desperate searching for answers

The day after the worst day ever I was waiting for the call from Erasmus MC that was promised. I needed answers with the most important one: How much time do I have? Impatient as I am, I already tried to call the day before, but my file was still on the way. I wanted to call early in the morning, but decided to wait at least till 14 pm. You don't want to irritate the people who have the drugs :-).

I live in the centre of the city of Rotterdam and to kill time we decided to walk through the park and visit the Euromast. Born and raised in Rotterdam but never visited this famous attraction before. And then it was 14 pm and still no call. Time to take action! I found out that they indeed received my files, but the clinic didn't know about the promise of calling me that day and the best thing they could do was an appointment within 2 weeks. Something went wrong in the communication in this transfer. So calling back and forth that day and the next day to both hospitals. I couldn't wait two weeks! How can you tell someone that she has a terrible disease and then leave her behind without any answers or information. Do I have 1 month, 3 month, 1 year.....maybe 5 years. It's frustrating not knowing anything. I wanted to fight with all my power against this disease but if you don't know were you fight against it's terrible! As I didn't want to put all the eggs in one basket I decided to get in contact with the Netherlands Cancer Institute (NKI) through my general practitioner. My general practitioner is great and wanted to help in every possible way she could. She called the NKI for me. As this clinic did the second opinion of my earlier treatment they already had my files. Because of the rareness of the mets of the Phyllodes Tumor they were willing to help me and scheduled a meeting the week after. But also our calls to my old clini

c helped, because Erasmus MC rescheduled our appointment a week forward.

With two appointments in our pocket, but no answers yet, we decided to get away for a night to get our minds of cancer. We booked an arrangement at a great restaurant, 't Amsterdammetje and we had a great night. Somehow we parked that black cloud and were enjoying the present.

Online Research

During my hospital hunting my sister started parallel her research online and came with the most amazing findings. She came in contact with the Phyllodes Foundation. The people from this voluntary organization are amazing and have been of great help in the start up for the hunt for information. We learned:

• That I'm probably one of the first patients in the Netherlands with mets. I was 36 years old when I had the tumor. They are really rare and the malignant type is even more rare: Only 25% cases of Phyllodes tumor is the bad malignant type. The change of mets of phyllodes is so small that the clinics here thought there was no change for mets. So conclusion: there's no experience for treatment in the Netherlands.

• To get on Social media: The tip was to get in contact with an international Facebook group, called Phyllodes Support Group. This group brings people worldwide with this rare disease together. It gives support and information. Our initial reaction was conservative, sharing information so private, is that the way to go? But then I realized that this knowledge sharing and asking for help was the only way (and became the breakthrough for this website). Emotional not ready to talk about my cancer and reading other calls for help, my sister became a member of the group. And it did help, we heard amongst others about a chemo treatment with some positive results. And all people in the group are supporting each other, it is warm and comforting. They know where you are going through.

• Specialist: There is a Phyllodes specialist in the Netherlands Mr. Dr. F. van Duijnhoven working at NKI. Glad I had an appointment at NKI, but later I found out the knowledge was limited to Phyllodes in breasts.

• Institutes globaly: The foundation sent us a list with clinics in Europe who could be able to help us. We contacted many of them. Although most of them were willing to treat me there was no clinic confirming they have experience to treat this disease. Through the Facebook group, where most people are American, we found out that they have more experience in the USA, with MD Anderson in Houston as one of the top clinics.

With more knowledge I went to my appointment at the two Dutch clinics and both came to the same conclusion before the treatment plan could be made. Two things had to be done:

1. Lung biopt: Just to make sure this is a Phyllodes met and to get more DNA information for the treatment plan.

2. Replacement of my tissue expander: I was in the middle of a breast reconstruction process, so I had a tissue expander with a magnet. The magnet was going to be an issue for further treatments such as radiation or MRI scans.

And good news, as it's an exceptional case they were willing to do something exceptional: the hospitals were willing to work together. Erasmus MC is my official treatment hospital, but every step they will look at the best resources between the two. At least, this is promised and we all know that a partnering is not built in one day. But most important ingredient was present, willingness to work together for the best help.

I also found out that positive patient stories, like the positive chemo treatment in the USA, was not enough for doctors from a medical point of view. I can comprehend that to a certain level, I mean if there is a research available off course that's the way to go, but if that's not the case because it's so rare, patients stories are the only reference and valuable and as a doctor I would pick up the phone and call these institutes where the patients were treated. As step 1 en 2 still needed to take place I decided to wait. I mean, they're both great institutes and I have confidence in them and need to give them first the benefit of the doubt before I act further. But that waiting is quite nerve wrecking. Always doubting, is this the right way..... And also on top of my mind, what does this slow decision making do with my tumors? Will they grow rapidly and will we be too late by doing all these steps that take a lot of time first? Will poking in my tumors during a biopt make the nodules grow even more rapidly?