So here I am today. Alive, in remission, and fighting myself back into normality again.
If I missed any questions, feel free to ask, just please keep it civil.
Since I never expected this to go as viral as it has, even 14 months later and after getting countless questions, I decided to post a long-due update and answer some of the most-asked questions.
I was diagnosed with PMBCL stage IVB, which is a rare form of Lymphoma. The Tumor was the size of 17x15x10 cm and had spread/created herds in the lungs, breast, pancreas, and ovaries. I also had heart and lung failure due to the sheer amount of the tumor size, however it was not actively treated, but my body resolved it on its own.
16 months prior to my diagnosis, I was diagnosed with a rare form of skin cancer. These two are not related at all, which was confirmed by extensive DNA testing, which confirmed that I’m absolutely healthy and simply had some major bad luck.
I'm from Germany, and everything regarding my PMBCL diagnosis and treatment was done here. We have a public healthcare system that is funded by every working person in a form of tax which isn’t tax, but simply a contribution to the health insurance system.
GP also called a general practitioner, is your first point of contact for anything except emergencies and pediatric cases.
As far as the symptoms and diagnosis process goes, I’ll just break down the time between the first symptom and the diagnosis. About 8 months prior, I suddenly started having a barking cough that came up whenever I had eaten, drank something cold, laughed, laid down, and had done minor exercise that needed loads of lung work. I went to my GP who suspected asthma. I had a same-day x-ray at a radiology clinic, which was absolutely fine, and was prescribed a cortisone inhaler, which took care of the issue, and the cough was gone. About 6 months prior, I had a phase of constant, unexplainable bruising, especially on my arms and legs. I was in the middle of extended travel in Australia, took pictures and decided to mentioned it when I was back. By the time I was back, the bruising had stopped. My next symptom was localized breast pain in one spot, which lasted for about 2 weeks. I had initially called my OBGYN for a check, but did not receive an appointment until the next year, and as the pain had stopped, I assumed it was nothing. About 3 months prior, the coughing came back and was no longer treatable with the inhaler. I went back to my GP, and he decided to run a full blood panel and check for allergies via blood. Lab results came back A OK and did not indicate any issues. At this point, I was prescribed some cold medicine and was hoping it would work. I also did extensive travel from then onwards, and whenever I was home, my GP was on holiday, so I had to go to his deputy. It never got better from there, and I continued to go from one cold to another; I couldn’t seem to shake it off. Two weeks prior, I was diagnosed with acute pneumonia by his deputy. I received a same-day x-ray, which was confirmed, and antibiotics. For obvious reasons, the antibiotics did not work, and on December 1 I decided to do something that most likely saved my life. After I suddenly fell extremely weak and started having a resting BPM of ~140 the day prior, I called my GP, and he had me come in the same day. After two ECG’s that were top-notch, he was very confused and called an ambulance to take me to an ER. At the ER, I went through extensive testing and had some very confused doctors who couldn’t believe my state, but could not find a reason. My blood work again was superb; I had active heart and lung failure. I was given a regular CT which did not indicate much, and they decided to admit me and continue testing and researching the next day. The next morning, I woke up to two doctors telling me they suspected cancer and that I would receive another CT, this time with contrast / dye to confirm. And low and behold, it sure did confirm. I was immediately admitted to the oncology ICU, got a biopsy and my first chemo ran 5 days later.
Probably the most lucky thing was being admitted at complete random to this specific hospital. A leading hospital for treating blood cancer and trying out new treatment options as the first hospital in the state and sometimes country.
I received six rounds of a fairly new chemo mix called DA-R-EPOCH. It took exactly 4 months. Even though it’s one of the most aggressive out there at this time, I managed to fly through without any symptoms and much positivity. The Tumor was pretty much gone, and they decided to end treatment. A check PET CT about 3 months later did confirm a small deauville 5 spot, which was treated with 4 weeks of daily radiation, and since August 2023 I’m officially in remission.
Maybe after reading through my diagnosis road, it now makes sense why my GP is still my GP today and I have not pressed legal charges against him. I did not have a good enough pattern or the normal symptoms. I was seen by up to 10 doctors within 8 months, who all missed it. I’m not out to destroy someone’s life and career. We’re all humans, and we all make mistakes. When I went to him 6 weeks after I was diagnosed, he was floored, shocked, and lost for words. All I can hope is that he learns from this and will question issues more than he did before. Otherwise, you can’t even really sue doctors that easily in Germany. I wouldn’t have a case. Even the doctors at the hospital had been shocked.
So why did I post about it on Reddit? Honestly, it was a spur of the moment. I was only able to deal with this diagnosis through dark humor, and it seemed funny. It was also the reason that I met some amazing people with the same diagnosis, who helped me so much to get through it. I also hope it might prompt some people to get a second opinion, to question, and to advocate for themselves.
So here I am today. Alive, in remission, and fighting myself back into normality again.
If I missed any questions, feel free to ask, just please keep it civil.