Angelica is a survivor and patient advocate who does not take no for an answer! She lives in Sweden and volunteers closely and personally with cancer patients and their families, helping them advocate for the best diagnostics and treatments they deserve.

The Start of Her Symptoms and Path to an Oesophagostomy

Angelica’s cancer story started in late Spring of 2015. After experiencing intolerable stomach symptoms, she asked for a gastroscopy and was diagnosed with irritable bowel syndrome (IBS). However, she felt it was an inaccurate diagnosis and made it known – this was the start to being her own best and loudest advocate.

Angelica spoke up, demanding a thorough and detailed investigation which revealed a diagnosis of Oesophageal cancer (oesophageal adenocarcinoma, Stage I-II). At this point she was encouraged to enrol into a clinical study which would play a life-saving role down the road. Angelica was selected to be in the group that had surgery 12-weeks after radiation, rather than 6-weeks after as is standard practice. As part of the study, she received radiation and chemotherapy through the summer of 2015, and then 12-weeks later she had an oesophagostomy (a surgical procedure in which two-thirds of her oesophagus and half of her stomach was removed and reconnected). Recovery was hard; with the need for an additional surgery to fix a massive hernia just a few days later, and lots of help caring for herself in the months that followed.

Finding Her Strength Again and Further Surgery

Slowly she found her strength and was working her way back to her old routines.  However, now she was experiencing terrible back pain and walking around feeling like there was a football popping out of her stomach. This was caused by a 10cm separation of her stomach muscles, called Diastasis Recti, and despite trying to restore her muscle strength with private physiotherapy, she needed another surgery. Angelica believes that this complication was caused by poor post-operative care and could have been avoided completely with access to a multidisciplinary team approach, where proper healing and recovery are prioritized. To repair the Diastasis Recti the muscles of her abdomen had to be sewn back together and bound with a mesh down most of the length of her torso.

As she recovered, her core and back felt more stable, but she kept experiencing pain that would come and go. By May of 2017, Angelica found herself experiencing severe pain in her chest and abdomen. Not one to usually rely on pain medicine due to her high pain tolerance from previous surgeries and medical procedures, Angelica’s pain was so intense, she ended up in the emergency room begging for morphine. This did not sit well with the attending physicians, and she was sent home after a quick physical exam, without any scans or testing, but rather with a prescription for painkillers from the pharmacy. Angelica spent the day at home in excruciating pain only to be rushed to another hospital by her son, where she had to be rushed into emergency surgery for multiple volvulus (twisting of the bowel) and signs of sepsis.

2-Year Follow-Up Finds New Spots on Her Lungs

A few months later, in August 2017, at her 2-year follow up for her oesophageal cancer surgery, the radiologist found two new spots on her lungs, however her oncologist was convinced it was the remnants of an infection or previous radiation. Angelica insisted on a thorough examination with a PET-CT scan and a bronchoscopy, but her oncologist did not see the need and suggested a simple X-ray despite her persuasion.

Clinical Study Saves Her Life

She kept coming back and kept being brushed off, receiving only one more X-ray over several months; it showed the patches were still in her lungs. One year and two follow-up X-rays later, Angelica finally received the PET-CT scan in October of 2018 she had been asking for through the framework of the clinical study she was enrolled in for her initial oesophageal cancer diagnosis. Had she not participated in the study, she would have never received a PET-CT scan at all. The scan results were devastating. Suspected tumors were found in her lungs, bronchi, pancreas, and lymph nodes. The cancer was back and spreading rapidly and, in that moment, she felt the floor disappear under her. She somehow mustered up the courage and prepared herself to fight again, instead, she was offered two rounds of palliative chemotherapy (based on the Swedish guidelines for recurrent oesophageal cancer) to give her a few more months with her family.

During this time, she was also experiencing vision problems which was diagnosed as anxiety and stress from her cancer returning. Feeling like it was something more and fed up with not being heard, Angelica decided she needed a new oncologist. She found herself one who was willing to listen when she spoke of her symptoms, concerns, and fears. Happy with her new doctor, she asked for access to an immunotherapy treatment that was showing promising results in patients in the US. But despite her new oncologist being open to the idea, immunotherapy could not be considered until after the 1^st and 2^nd lines of the palliative chemotherapy care protocol were completed. So, she started the palliative protocol; the side effects were debilitating on her body.

Persisting in Seeking New Answers to Her Medical Challenges

Angelica needed to try a different approach, relying on private health insurance, she managed to secure through her employer, Angelica was able to have an MRI. The MRI and follow-up tests revealed numerous metastases in her brain, eye, bones, and other internal organs. Frustrated and disappointed with the health care she was being offered and desperate to live, Angelica sought out a second opinion with doctors in Germany. There they agreed that Angelica’s cancer could benefit from immunotherapy, something she had been fighting for in Sweden.

Staying Hopeful and Amplifying Her Message to Gain Treatment Access

Through each surgery, each misdiagnosis, each scan with bad news and each denial of therapy Angelica remained hopeful.  If the system was not going to offer her the immunotherapy that could save her life, she would seek it out privately. With the help of her children, she created a crowdfunding account to gain access to private healthcare and unknowingly amplified her loud and passionate voice be heard across Sweden, and the world.

The social media attention grew fast and within days the same hospital that denied her the treatment she so desperately requested, was calling to schedule her first round with of immunotherapy. In March of 2020, Angelica finally started immunotherapy.  After several treatments she was called in to discuss her progress; her cancer cell marker was through the roof and the metastasis in her brain showed a mixed picture with some tumours shrinking, others still growing and the rest unchanged, typical for pseudo-progress. But her oncologist was optimistic and wanted to continue the immunotherapy, adding in chemotherapy as a point-treatment to see how the cancer might respond.

Finally – Clear Scans with the Combination Therapy Working!

After completing the chemotherapy, Angelica recalls entering her oncologist’s office, skipping the formalities, and asking him to just give her the news of her follow up scans, whatever it was. To her surprise, he was jumping around in excitement! Her scans were clear. The metastasis in her brain, eyes and other organs had shrunk, disappeared, or had stopped growing, there was not metabolism with her cancer – the combination therapy was working beautifully! It is difficult to say whether the addition of chemotherapy was responsible for the results she saw, but she knows that immunotherapy was a definite game changer in her treatment plan.

Like with her cancer diagnosis, Angelica did her own research on holistic ways to care for herself after surgeries, chemotherapy and radiation treatments battered her body. She understood the systemic effects of chemotherapy and radiation, especially the impact on her gut microbiome. Taking charge of her recovery, Angelica focused on good nutrition, gut health, exercise, physiotherapy when needed, and always keeping a positive attitude.

Angelica still receives immunotherapy every 3 weeks, and her body is responding well.

She is happy and healthy and most recent scan was clear. Her doctors continue to be amazed by how well her body has responded to the treatments.

When offered palliative care Angelica said, ‘death to death, let’s talk about life!’ she has fought hard and will keep fighting to go all in and strive for the best!

Angelica’s message to patients, survivors and their families is NEVER EVER GIVE UP, IT IS BETTER TO DIE WITH HOPE THAN TO DIE HOPELESS.

Angelica is determined to help anyone avoid the painful rollercoaster ride she endured. If you are a patient or carer wanting to connect with Angelica, please reach out to us.

Angelica is an active member of the following Swedish organisations:

• PALEMA: A DiCE Member that supports those directly and indirectly affected by cancers of the pancreas, liver, stomach and oesophagus; promoting accurate diagnosis and effective treatment.
• Njur Cancer Foreningen: Supports those directly and indirectly affected by cancers of the kidney.
• Lung Cancer Foreningen: Supports those directly and indirectly affected by cancers of the lungs.
• Hjarn Tumor Foreningen: Supports those directly and indirectly affected by cancers of the brain.
• Gyn Cancer Forbundet: Supports those directly and indirectly affected by gynecological cancers.
• Nätverket mot cancer: A Swedish umbrella association for different cancer types.