By Ilonka Dee - Between March 2012 and March 2020, I underwent chemotherapy 3 times with in total 26 chemo rounds. Radiotherapy twice; 53 sessions, and an endless long list of many different medications. It seems I've lost count of the numerous times I've been on an operation table for breast cancer related stuff.
My breast cancer adventure began on March 29th, 2012. On that Thursday evening, my husband Marc and I were goofing around a bit when my hand got stuck between my chest and Marc's upper arm. I felt... a lump, and a hot flash shot through my body, and I asked Marc if he felt it too. A lump indeed, in my left breast. In an attempt to reassure each other, we both waved it off with 'it's probably a swollen milk gland or something'. Early the next morning I went to our house doctor, his first impression was a cyst, but to be sure I had to go to the hospital for a mammography. The doctor immediately made a call to the hospital, and they were able to squeeze me in that day. Marc stayed home with our son Kaj, who was 16 months old at the time. Elise, a dear and close friend, offered to pick me up and accompany me to the hospital. First, a physical examination, then a mammography, followed by an ultrasound. During the ultrasound the radiologist told me he was going to take a biopsy. 'Biopsy!? Is the image unclear or does he maybe suspect cancer?', I thought to myself. The nerves rushed through my body, and because of the sudden dryness in my mouth, I almost couldn't swallow my saliva. He told me he would send the biopsy to pathology, and that the physician wanted to see me in a bit to inform me further. In the doctors office my physician opened the images on her screen, and looked at the monitor in silence, what seemed like forever at that moment, she than looked up at me and said: 'I unfortunately have very bad news for you Mrs. Dee, it looks like it concerns malignant cells. We still have to wait for the official pathology report from the biopsies, but we know from experience with these kind of images that it almost always concerns malignant breast cancer.' Strangely enough, the pinched feeling in my body ebbed away and was replaced by a strange numbness. I systematically fired practical questions, bearing in mind how to tackle this obstacle with our son Kaj. Kaj, who was about to start his high dose chemo round to try to cure him from neuroblastoma stage 4. On Tuesday, April 3rd, an appointment was scheduled with the doctor to discuss the results of the biopsies. It turned out I had triple negative breast cancer. Given the location of the tumor, it was not necessary to amputate the breast. A breast saving operation followed including removal of the glands in my left armpit. After that I underwent radiotherapy and chemotherapy.
Despite the chance of infertility due to my treatments, we were able to welcome Kaj's little brother Dylan into our family on the 1st of November in 2013. On January 6th, 2014, I felt some enlarged neck glands. Scans and biopsies followed. On Wednesday, January 15th, we received bad news. The breast cancer had spread to the lymph nodes in my neck. The big bad breast cancer was back, or better said, had not been gone. The chemotherapy that I was given in 2012 had not given the results we'd hoped for, as the breast cancer was still active in my body. The doctor had a strong suspicion that the spot detected via MRI on my left upper arm could be a metastasis of breast cancer in the bone. A PET scan had to follow to give a definitive answer. In one swoop, the cancer blew away our just re-found fragile family happiness. With an ink-black cancer cloud above our heads, we drove back home. We felt numb. The news felt so unreal. We could only hold each other tightly at that moment. We hadn't seen this coming at all. After all, I physically felt so good! I'd just made plans to resume work, and Dylan had his first day at the daycare centre. A PET scan needed to follow to check for mets. The first few days and nights after the news we both had a lot of trouble sleeping and eating. The nights dragged on into the days and vice versa. After a few days we miraculously managed to flip the switch in our heads. We had to park it, otherwise those 12 days of waiting for the PET scan would feel like an endless horror show. Above all we both felt a great urge to stay strong, for each other, but especially for our children. The following days were spent in a daze. Sucked into a vacuum, in our own strange little universe. We visited the zoo and an amusement park called the Efteling, seeking some nice distractions and spending quality time with our family. No matter what would lie ahead, we wanted to try not to let the fears and sadness take the upper hand, and to enjoy every day we had with each other. Making beautiful memories with each other. As our family calls it: 'Taking photographs with your heart!' The days were filled with a smile and a tear. Happy moments, insecurity and fear side by side. After my PET-scan there was, LFS style 'good' news. It turned out I had 4 affected neck lymph nodes, and the rest of my body seemed clear. The spot seen on my left upper arm appeared to be scar tissue on the bone. Again, I had to undergo radiotherapy and chemotherapy, but thank God I had another chance to survive. In this period someone finally woke up on my medical team and I was referred to a clinical geneticist. It turned out I have a genetic mutation called Li-Fraumeni. I also found out to be de Novo (first) in my family, and I had passed on this mutation to our eldest son Kaj.
On the 23rd of October 2017, I had my annual screenings and scans at the Antoni van Leeuwenhoek hospital in Amsterdam in the Netherlands where we live. On my previously treated left breast, a spot was noticed during a breast MRI with contrast. The good news was that there were no other abnormalities on the total body MRI. A puncture was taken, and in the lab, they immediately saw they were malignant breast cancer cells. I was called back into the treatment room, and they took some biopsies. A marker was placed next to the tumor, and the biopsies could go to the lab for further pathological research. During the procedure, a flood of nasty memories burst open in my head, and while hearing the first biopsy 'click' I felt warm, silent tears running down my cheeks. A mammography and X-ray photographs followed to confirm the placement of the marker. The waiting had begun and loads of questions filled my head. What kind of breast cancer was it? The old one from 2012 and '14, or a new primary? A recurrence would give a gloomy vision of the future. In that case, the cancer would have survived the previous 20!? chemo cocktails. A new primary tumor would give me the best survival options. On Friday 10th November the lab results showed that I had a triple negative breat cancer tumor. But, in fact, we still didn't know much more. Was it the old triple negative breast cancer, or a new primary triple negative breast cancer? It's easier said than done to keep fears under control. Not letting fear grow due to bad memories and the knowledge what certain results can have for devastating consequences. Not letting fear become all consuming. After waiting for weeks under strain, my oncologist Dr. Linn called on Friday evening, December 1st to discuss the results of the DNA tumor research.
It turned out to be a new primary triple negative tumor, grade 3. The extreme tension in my body ebbed away a little bit when hearing the words 'a new primary'. That evening we 'celebrated' LFS style that it was a NEW primary. How crazy and upside down can the life of someone living with LFS can be, that you're completely over the moon with joy that you have a new primary instead? I got another shot to live, to survive, to heal... again. This new breast tumor was probably caused by the intensive radiotherapy given in 2012 and 2014. I had to undergo chemotherapy again. On April 13th, 2018, I received my last chemo round, and on May 15th I underwent a double mastectomy. On March 12th 2020 I had my final breast reconstruction surgery, a little foob (fake boob) was placed under the flap that was created in April 2018. Finally, I looked whole and normal again while wearing clothes.
Once again the treatments and surgeries are behind me, but the recovery is a slow process, physically and mentally. Falling down and crawling back up again. The treatment and surgeries have left their marks. Chronic pain on my affected side, neuropathy, sleep and anxiety disorders to name a few. Trying to find my way, with this battered and changed body. A body that only resembles the distant echo of what it was before all treatments had started. Not only in appearance, but also my physical abilities. Everything has changed, and my quest for acceptance of my new self is a challenge and ongoing process. These past years haven't only been hard on me, but at least as tough for my family who could only passively sit on the sidelines and watch me be sick, over and over again. It was especially difficult for my husband Marc. My buddy, and my dearest friend whom I love so deeply. Our sense of humor and love for each other keeps us standing. We are amazed of how resilient and full of life we have remained, despite all the cancer crap and immense loss that has been pushed down our throats the last few years. On 28th of September 2020 the result of my annuals came back, there is no evidence of disease. I'm still in remission! We hope to find a different kind of happiness in our family's future. A future where we carry Kaj with much love in our hearts, as we make new memories in life. A future in which we will be able to take many beautiful pictures with our hearts for hopefully a very long time to come!
Ilonka, you are a beautiful soul and you have a lovely family! You have been through so much yet you are always so loving and supportive of us fellow mutants! After loosing my husband I'd been with for 37 years I love the way you say "taking pictures with your heart. Thats just what we did. I see them come up in memories now and delite in them. I also understand "Happy its only another primary", sad right? I am so happy to have met you and your family and hope to see you soon! ❤
Thank you Susan, you've been through so much yourself, and currently in the midst of your treatment and dealing with the loss of your big love and soul mate John. I'm gald you found some uplifting and regcognizeable stuff in what I wrote. Sending you so much love and light!