The Beginning
He diagnosed what appeared to be a fibroma, a benign growth, and referred me to the Carl Gustav Carus University Hospital in Dresden.
In June 2025, I was told there for the first time that they could not be certain whether the lesion on my tongue was actually a harmless fibroma or a carcinoma, in other words, cancer.
A biopsy performed at the Carl Gustav Carus University Hospital at the end of July 2025 finally provided certainty.
Chemoradiotherapy
My first treatment was chemoradiotherapy, which began in September 2025.Over the course of six weeks, I received weekly chemotherapy while also undergoing radiotherapy every weekday, from Monday through Friday.
As the treatment progressed, I found both forms of therapy increasingly exhausting.
The chemotherapy itself was comparatively manageable, apart from the nausea that followed each infusion.
During the first few weeks of radiotherapy, I experienced very few side effects.
Towards the end of the treatment, however, each session became noticeably more difficult than the last.
The radiation caused my beard and neck hair to fall out, left my neck red and burned, and I became physically weaker with every passing week.
After those six weeks, I believed I had overcome the worst and hoped that I would soon be able to return to a normal life.
Removal of My Tongue and Tracheostomy
One to two months after completing chemoradiotherapy, the problems with my tongue returned.Further examinations, including CT scans, MRI scans, and a PET-CT scan, revealed that the tumor had not disappeared completely but had continued to grow.
Because the tumor had reached an advanced stage, my doctors presented me with two options: either palliative care, in which the focus is no longer on curing the disease but on improving quality of life and relieving pain, or a complete removal of my tongue together with the tumor.
The doctors explained that choosing palliative treatment alone would leave me with a life expectancy of only a few months.
I chose the second option, even though I knew it would change my life forever.
During the procedure, my entire tongue was removed and reconstructed using tissue from my left pectoral muscle. A tracheostomy was also performed to secure my airway.
In addition, the lymph nodes on both sides of my neck were removed, and a tracheostomy tube was inserted into my windpipe.
The operation left me with a number of permanent limitations.
I have very little movement in my reconstructed tongue and have lost almost all sense of taste.
Because of the tracheostomy tube, I can no longer speak, as no air passes through my larynx anymore.
I can also perceive only very strong smells because air no longer flows through my nose.
Both my nutrition and all medications are administered entirely through a PEG feeding tube.
Another complication following the operation was the development of trismus, commonly known as lockjaw.
This means that I can now open my mouth only a few millimetres.
To improve this, I undergo speech and swallowing therapy, including tongue depressor exercises and other therapeutic exercises.
Because the lymph nodes on both sides of my neck were removed, I have also been left with severe swelling in my neck and lower jaw.
This is being treated with regular manual lymphatic drainage.
Complications After Surgery
There was a possibility that cancer cells had already spread into my jawbone.
During the operation, as much of the lower jaw as possible was removed.
Removing any more bone would have required extensive reconstructive plastic surgery.
If the doctors' concerns proved to be correct and cancer cells were indeed still present in my jaw, another major operation would become necessary.
Part of my lower jaw would have to be removed and reconstructed using a section of my tibia.
Further tissue samples were expected to provide certainty.
Immunotherapy
As an additional precaution to eliminate any remaining cancer cells and reduce the risk of the cancer returning, I underwent immunotherapy after the operation.This is a relatively modern form of treatment that aims to train the body's own immune system to recognize and attack cancer cells through regular infusions.
The treatment plan consisted of one infusion every three weeks, for a total of 15 treatments.
Again?!
Around ten weeks after my operation, I received the news I had almost been expecting: the cancer had returned.This time it had spread to my throat, and shortly afterwards it was also found in my jaw and gums.
Once again, tissue samples were taken, and the multidisciplinary tumor board at the Carl Gustav Carus University Hospital explained that I was once again facing two possible treatment options.
The first option was another, even more extensive operation.
Because of my trismus, all of my teeth would first have to be removed, and my lower jaw would have to be split at the chin in order to reach and remove the tumor.
However, this operation offered no guarantee of success and would most likely never heal completely.
For that reason, my doctors advised against it.
The second option was another course of chemotherapy.
However, both my doctors and the specialists on the tumor board made it very clear that a cure was no longer realistically possible.
From this point onward, every treatment would be purely palliative, with the sole aim of slowing the growth of the cancer and, hopefully, shrinking the tumors for a while.
After giving it some thought, I chose the second option because it would place considerably less strain on my body.
The End?
Everyday life has become extremely exhausting.
Ever since I was a child, I have been afraid of not being able to breathe and of suffocating. Because of that, breathing through my tracheostomy tube is a constant burden for me and sometimes even triggers panic attacks.
The knowledge that I do not have much time left to live is an enormous burden for both me and my family.
My family has not yet given up hope that a miracle might happen and that, somehow, the cancer will disappear.
I, however, can feel the tumors growing larger day by day, together with all the limitations they cause.
My greatest hope is simply that I will not have to suffer too much in the end.
As a software developer, I have always believed that everything has a reason—or at least a cause—whether in a computer program or in real life.
Yet the fact that I, of all people, developed cancer and that my entire life was turned upside down within just a few months simply makes no sense to me.
I have never smoked, consumed alcohol, or taken drugs.
I cannot find any explanation for why the cancer developed in me, at my age, why it is so incredibly aggressive, why it has resisted every scientifically established treatment available, and why it has progressed so rapidly.
In the end, there is probably only one thing left for me to say:
Goodbye ♡
If you have any questions, would like to leave a few kind words, or simply want to know whether I am still alive, please feel free to get in touch with me.