My story: from back pain to a complete cancer diagnosis in ten days

In short: I am the patient behind this blog. In this first story I tell you how I went, in a few weeks, from back pain to a complete diagnosis of stage IV lung cancer – and what I learned along the way, so it can be a little easier for you.

Who I am

I’m not going to use my name here. Not because I’m ashamed, but because this blog is about you, the reader, not about me. The message matters, not the messenger.

I’m 42 years old, I’m from Romania, from Bucharest, and I work as a software engineer. I have never smoked. I don’t drink. I eat healthy, I’ve always been in good physical shape and lived a normal, balanced life.

I say this not to brag, but because that is exactly what made the diagnosis so hard to accept. Cancer, in all of our minds, happens to other people. Not to a young, healthy person with no classic risk factor at all.

And yet.

It started with back pain

Around September 2025 I started having back pain, in the lower-back area. Nothing dramatic at first – the kind of pain anyone would put down to bad posture or stress.

I had a lumbar MRI at a private clinic. The official result spoke only of degenerative disc problems. Nothing worrying. On the basis of that result I went through weeks of physiotherapy, kinesiotherapy, massage, TENS.

But the pain wasn’t going away. On the contrary, it was getting worse.

Much later I understood how much a second opinion on the images matters when a pain won’t go away. It’s a lesson that still hurts – I wish I’d known it sooner: a “clean” result shouldn’t be the last word when your symptoms say otherwise.

January 2026: the MRI that changed everything

Because the pain was getting worse, in January 2026 I went to another clinic. This time they recommended an MRI of the entire spine, not just the lower-back area.

That’s how it showed up. At the level of the T11 vertebra, a tumor that took up almost one and a half vertebrae, that pushed into the canal between the vertebrae and pressed on the nerves.

It was a shock. For me, for my wife, for the whole family. I was young, a non-smoker, with no vices, with a healthy lifestyle. And yet, all of a sudden, we were talking about cancer.

The first void: I knew absolutely nothing

At that moment I knew nothing about cancer. Nothing.

You search the internet and you run into dozens, hundreds of variants, options and scenarios, each one more frightening than the last. But without knowing exactly what you have, none of it helps you. The first thing you’re missing, and the most important, is a precise diagnosis.

That was our first lesson: until you have a complete diagnosis – including at the molecular level – you can’t make any good decision. Everything else is noise.

The Romanian medical system: my experience

Here I have to be honest, because the purpose of this blog is to be useful, not to be polite. I encountered, sometimes on the same day and in the same building, both the warmest people and the most painful lack of empathy.

With the MRI referral and the CD in hand, after several pieces of advice from family, I ended up at the emergency room at Floreasca Hospital. There, a man at the emergency desk came down on me pretty hard: what was I doing there with back pain, since he too has back pain and doesn’t come to the emergency room for that.

At my insistence, he did eventually agree to call a neurosurgeon. The neurosurgeon took my CD, looked at the images and confirmed what I feared: it was cancer. The spinal lesion looked like a metastasis – a sign that there was a primary tumor somewhere else.

Floreasca doesn’t have an oncology department, so I was referred to a hospital that does – the University Hospital or Elias.

I went to Elias. At the emergency room they told me, correctly, that this wasn’t an emergency matter and that I needed an oncologist to characterize the tumor. But just as I was leaving, someone told me that oncology was open and that I could ask there too.

I waited in a small queue. Inside there were two people who turned out to be incredibly empathetic. They called the oncologist, got me a referral through the Romanian national health insurance (CAS) for a CT scan, and found a slot the very next day, at a partner clinic. In that moment – and now, looking back – it seemed incredible to me.

That was the moment that opened my path to living with cancer. Because, as I quickly learned, it isn’t a fight – it’s a coexistence.

The next day’s CT showed the full picture: I had lesions in the lungs, in the spine and in the lymph nodes.

In the following days, my wife and family mobilized – dozens of phone calls, looking for options, appointments, MRIs with contrast of the entire spine and of the head. I needed someone to give me the referral slips.

I made an expensive appointment with oncology at Sanador, but there they told me they couldn’t give me the referrals, because it wasn’t yet a confirmed case.

So I went back to Elias, where the evening before I had found those wonderful people, hoping to get the referrals too. Unfortunately, someone else was on duty. They almost scolded me for daring to bother them without an appointment, two days in a row – something “unacceptable” for their hospital.

It was very ugly. Something I wouldn’t wish on anyone, especially on the second day after finding out you have cancer. I insisted and, in the end, I got those referral slips.

Looking back, those investigations would have cost me a few hundred euros anyway if I’d done them on my own. Now, after tens of thousands of euros in expenses have piled up, I understand that every penny saved counts. Those people didn’t know that. And, unfortunately, they didn’t even stop to consider it.

The turning point: Anadolu, Istanbul

A few days before the day scheduled for the lymph node biopsy, someone sent me a link about the Anadolu hospital in Turkey.

I called them on a Saturday night, late. A warm and helpful person answered, and explained their protocol: before anything else, you do a PET-CT, so you enter their workflow of investigations. This was something no one had told me in Romania, even though I was heading toward a biopsy.

And the speed was unimaginable. The people at Anadolu told me they had a free slot for a PET-CT on Wednesday. I told them I could come on Sunday evening. I arrived in Istanbul on Sunday evening, on Monday morning they called me that a slot had opened up, on Monday I had the PET-CT, and by Tuesday I already had the results.

For comparison: for some MRIs done in Romania, the official interpretations came after a week and a half, even two weeks. The lucky thing was that the people in Istanbul are extremely professional. You go with the CD and they do their own interpretation on the spot, for a reasonable sum (around 150 euros per CD). These are people who do only oncology, so they read the images with the eye of someone who has seen hundreds of cases like yours. It’s money worth investing.

The biopsy and the molecular tests

The decision about how to do the biopsy wasn’t made by a single doctor. At Anadolu, a tumor board takes place every day – a meeting where doctors from different specialties (radiologist, interventional radiologist, radiation oncologist, oncologist, neurosurgeon, neurologist) discuss, one by one, each individual case. Not just mine – that’s how they work with every patient. For my case, the conclusion was that the simplest option was a CT-guided needle biopsy, directly into the lung.

The procedure itself took a few minutes. I didn’t even realize when it happened; the preparation took longer than the biopsy itself.

Then I was offered two molecular testing options: a smaller panel, with a result in three days, and a larger, complete one, in ten days. Because I’m a non-smoker, there was a high chance I’d fall into one of the mutations covered by the small panel, so I chose the fast option.

In three days I had the answer: lung cancer of the adenocarcinoma type, RET fusion-positive, confirmed by two different methods. By the end of five days I already had the complete diagnosis, including the molecular one. Unbelievable.

Radiotherapy to the spine

Because the tumor at T11 took up almost one and a half vertebrae, there was a real risk that the vertebra would collapse or press even harder on the nerves. At Anadolu I had targeted radiotherapy to the spine, with a CyberKnife machine that we don’t have back home – three sessions, over three consecutive days.

It was one of the best decisions. I did it right at the beginning, before any treatment with pills, in exactly the right window. After the radiotherapy, the back pain disappeared.

One moment has stayed with me. The tumor was very close to the spinal cord, and the radiation oncologist had to decide on the dose. He left the room, went to his colleague the interventional radiologist, and they looked at the images together, to make sure they could irradiate without affecting the spinal cord. He came back, confirmed it, and everything was fine.

That level of collaboration between doctors, in real time, was something I hadn’t seen in Romania, even though unfortunately I had interacted with quite a few doctors. And everything lives in a shared data system: anyone who opens your file sees your current condition and the entire history written by the others.

The treatment: a smart pill

Until you know exactly what you have, you don’t know how it’s treated either. And we had just found out: RET fusion-positive.

The oncologist told me it was very good news – there’s a targeted treatment, a smart pill from the class of TKI inhibitors (in my case, selpercatinib / Retsevmo). “Unfortunately,” he added, “it’s a bit more expensive.”

I left the office and we quickly looked online to see how much it costs. I was expecting 1,000, 2,000, maybe 3,000 euros. As we searched, somehow, with the help of artificial intelligence, a figure appeared: 10,000 euros a month. I froze. (The amounts I give here are from my experience, approximate.)

The next day, before we left for home, we wanted to order the first month of treatment, so we’d have something to start with. They made a few phone calls and it turned out it cost 5,100 euros there. It seemed fantastic to us – we were already relieved to be paying almost half of the figure from the internet.

Back home, within two days, I registered with an oncologist in Bucharest. He gave me news that seemed wonderful: the pills had been approved in Romania as reimbursed. He immediately submitted the request to CAS, electronically.

Except the news wasn’t quite like that. Two weeks later, when he was supposed to give me the referral, he saw that the request had been rejected. The reason: in Romania, the medication was approved only for second line of treatment, and I was on first line.

So I had to buy the second month on my own as well. In Romania it cost 3,400 euros – even less than in Turkey.

The absurd part is that it’s exactly for first line that it’s now officially recommended, both by the manufacturer and at the European level, because the results are far better, scientifically proven. It’s just that the internal procedure in Romania hadn’t been updated yet.

That’s when I found out there’s a legal route. A colleague put me in touch with some lawyers, who immediately understood what it was about: an emergency court order (a presidential-ordinance procedure) – a legal route to access a drug already approved at the European Union level but not yet reimbursed locally. In two to three weeks I had the result – I had won. The whole process cost me around 2,000 euros.

Since then, through this route, I receive the treatment for free every month. Practically, I paid out of pocket only for the first two months.

The first results

Here’s the part I wish I could have read myself back then: real, honest numbers.

I had a PET-CT at diagnosis, in January, and again at three months, in April. The comparison between the two:

• The lung tumor: the metabolic activity (SUVmax) dropped from 19.2 to 2.0 – that is, almost completely, down to close to the level of healthy tissue.
• The spinal tumor (T11): from 20.3 to 2.8, after radiotherapy and treatment.
• The lymph nodes: from a large mass, the largest one dropped to under 10 mm, and their activity decreased a lot.
• The pelvic lesion (iliac crest): showed no metabolic activity at all anymore.

The official conclusion was “marked response to treatment”. It doesn’t mean I’ve beaten the disease – at stage IV we’re talking about control, careful monitoring and steps forward. But after months of fear, to see those numbers dropping is a form of hope that I can’t describe in words.

Why I write

I write because, when I needed it most, I was missing exactly this kind of information: clear, honest, from someone who had been through it.

I’d like this blog to become, over time, a place where you can find not only my story, but also comparative data from other patients, told honestly and transparently. If you are a patient or a caregiver and want to share your experience, write to us. Together we can make the road a little easier for those who come after us.

That’s enough for a first article. I’ll come back with others, more practical, about each step in turn.