My Cancer Journey

The Beginning

In May 2025, I went to see a doctor for the first time because of mild pain along the edge of my tongue.
He diagnosed a fibroma, a benign lump, and referred me to the Carl Gustav Carus University Hospital in Dresden.
There, in June 2025, I was told for the first time that it was uncertain whether the lesion on my tongue was actually a harmless fibroma or a carcinoma—in other words, cancer.

The final confirmation came from a biopsy at the end of July 2025, which was also performed at the Carl Gustav Carus University Hospital.

Chemoradiotherapy

My first treatment was chemoradiotherapy, which began in September 2025. Over the course of six weeks, it combined weekly chemotherapy with radiotherapy every weekday from Monday to Friday.

As the treatment progressed, I found both forms of therapy increasingly difficult. The chemotherapy itself was relatively manageable, apart from nausea after each infusion.

During the first few weeks of radiotherapy, I experienced very few side effects. Towards the end, however, every treatment became more difficult than the last as I developed increasingly severe reactions to the radiation. These included hair loss on my chin and neck, redness and radiation burns on my neck, as well as steadily increasing physical exhaustion.

After those six weeks, I believed I had overcome the worst of it and 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, showed that the tumour had not disappeared completely but had continued to grow.

Because of the tumour's advanced size, my doctors presented me with two options: either palliative care, where the focus is no longer on curing the disease but on improving quality of life and reducing pain, or complete surgical removal of my tongue together with the tumour.

The doctors estimated that, with purely palliative treatment, my life expectancy would be only a few more months.

I chose the second option, even though I knew it would completely change my life.

On 26 March 2026, I underwent a 14-hour operation at the Carl Gustav Carus University Hospital. During the surgery, my entire tongue was removed and reconstructed using a section of my left pectoral muscle. To secure my airway, a tracheostomy was also performed.

In addition, the lymph nodes on both sides of my neck were removed, and a tracheostomy tube was inserted into my windpipe.

This has resulted in a number of limitations. I can hardly move my reconstructed tongue flap 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 only perceive very strong smells because air no longer circulates through my nose.

Both my nutrition and all of my medication are administered through a PEG feeding tube.

Another complication that developed during the operation was trismus, meaning that I can now only open my mouth by a few millimetres. This is being treated with speech and language therapy, including tongue depressor exercises and other rehabilitation exercises.

Because the lymph nodes on both sides of my neck were removed during surgery, I have also been suffering from severe swelling of my neck and lower jaw ever since. Regular manual lymphatic drainage is used in an attempt to reduce the swelling.

Complications After Surgery

After the operation, my surgeon explained that it was uncertain whether all of the cancer cells had been removed. There is a possibility that cancer cells may still remain in my jawbone.

During the operation, as much of the lower jaw as possible was shaved away. Removing any more bone would have required additional reconstructive plastic surgery.

If these concerns prove to be true and cancer cells are indeed still present in my jaw, further major surgery would be necessary. Part of my lower jaw would then have to be removed and reconstructed using a section of my shinbone.

Further tissue samples are expected to provide certainty.

Immunotherapy

As an additional safety measure to destroy any cancer cells that might still have remained in my body and to reduce the risk of the cancer returning, I underwent immunotherapy after my surgery.

This is a relatively modern form of treatment in which regular infusions are used to train the body's own immune system to recognise and attack cancer cells.

The treatment plan consisted of one infusion every three weeks, for a total of 15 treatments.

Again?!

Approximately ten weeks after my operation, I received the diagnosis I had almost been expecting: the cancer had returned—this time in my throat, and shortly afterwards also in my jaw and gums.

New tissue samples were taken, and the tumour board at the Carl Gustav Carus University Hospital explained that I once again had two options.

The first option was another, even more complex 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 to gain access to the tumour.

However, this operation offered no guarantee of success and would most likely never heal completely. For that reason, my doctors advised me against it.

The second option was another course of chemotherapy.

However, the doctors and specialists on the tumour board made it very clear that, at this stage, curing the cancer was virtually impossible.

From this point on, every treatment would be purely palliative, with the sole aim of slowing the cancer's growth and, hopefully, shrinking the tumours for at least some time.

After only a short period of consideration, I decided to choose the second, less invasive option.

The End?

The hope I had after completing chemoradiotherapy—that I would be able to return to a normal life, including work and everyday routines, within one or two months—unfortunately never became reality.

Everyday life is very exhausting. Since I have always been afraid of not being able to breathe and of suffocating, breathing through my tracheostomy tube is a constant burden and sometimes even triggers panic attacks.

The fact that I do not have much time left to live is a tremendous burden for both me and my family.
My family still has not given up hope that a miracle might happen and that, somehow, the cancer will disappear.

I, however, can feel every single day that the tumours are continuing to grow and that the limitations they cause are becoming increasingly severe.

My only hope is that, when my time comes, I will not have to suffer too much.

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.
But the fact that I, of all people, developed cancer and that, within just a few months, my entire life was turned upside down simply makes no sense to me.
I have never smoked, consumed alcohol, or used drugs.

I cannot understand why my cancer, at my age, is so incredibly aggressive, resistant to every established treatment, and progressing so rapidly.

In closing, there is probably only one thing left for me to say:



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 contact me.