# Symptoms and stages of glioblastoma
Glioblastoma progresses through different stages, each with its own characteristics and challenges. The disease course varies greatly from person to person, depending on factors such as the exact location of the tumor, how aggressively the cells grow, and how well treatment responds. This page describes what typically happens in each stage.
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Stage 1: Before diagnosis (symptomatic period)
Before glioblastoma is detected, the tumor grows silently. The symptoms that develop depend largely on where in the brain the tumor is located.
**Most common symptoms:**
- **Headache**: often worse in the morning, sometimes accompanied by nausea or vomiting. The pain may initially be reactive (tension, sleeping position) and gradually worsen.
- **Neurological deficits**: weakness in an arm or leg, loss of sensation, balance disorders, or stiffness on one side of the body (depending on tumor location).
- **Speech and language problems**: difficulty finding words, slurred speech, or difficulties with comprehension.
- **Vision problems**: visual field loss on one side, blurring, or double vision.
- **Seizures**: unexpected, sometimes recurring seizures are a warning sign.
- **Memory problems and concentration difficulties**: forgetfulness, difficulty thinking or multitasking.
- **Personality changes**: unusual irritability, apathy, or emotional changes.
- **Coordination disorders**: unsteady gait, falls, clumsiness.
**What this means for daily life: **
In this stage it often seems like a less serious condition — people visit their general practitioner, are prescribed migraine medication, or attribute symptoms to fatigue and stress. This can last for months. Symptoms may be intermittent, which further delays diagnosis. Employers may notice a decline in performance, or friends and family may notice subtle changes in behavior or speech.
**When it is usually noticed:**
Glioblastoma is often recognized only when:
- Symptoms worsen and persist,
- A first seizure occurs (many patients seek emergency care after an initial seizure),
- Neurological deficits become more apparent.
In approximately 40–50% of cases there is already a certain level of swelling (edema) in the brain at the time of diagnosis.
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Stage 2: Diagnosis and initial treatment
**What happens medically:**
Diagnosis is made by MRI scan of the brain. The tumor appears recognizable on the scan: a large, heterogeneous mass with characteristic appearance (contrast-enhancing rim, central necrotic area, significant edema). Sometimes CT is done first, then MRI. Confirmation of glioblastoma diagnosis (WHO grade IV) is made through brain biopsy or surgical resection with tissue examination.
**Symptoms in this phase: **
- The symptoms from Stage 1 persist or worsen,
- Expectation of further neurological deterioration,
- Swelling may increase before treatment starts,
- Inflammation around the tumor causes additional headache and neurological symptoms.
**Medication support:**
Corticosteroid (usually dexamethasone) is often given to reduce swelling in the brain. This usually leads to noticeable improvement in symptoms within hours to days: headache decreases, concentration improves, seizures diminish.
**Surgical phase:**
Most patients undergo surgery to remove as much tumor as possible without damaging critical brain areas. After surgery, symptoms may initially worsen (surgical trauma, swelling) but improve over 1–3 weeks. Intraoperative monitoring (electrical mapping, tractography) helps limit neurological damage.
**What it means:**
This stage is intense. Admission, operation, treatment and inflammation protocols, regular check-ups — everything happens quickly. Many patients feel psychologically affected by the diagnosis, combined with physical recovery after the procedure.
**Figures about this phase: **
Surgical mortality risks are low in experienced teams (< 2%), but complications such as permanent neurological deficit, brain infarction or infection can occur. The percentage of patients who have >90% of the tumor removed is typically 70–80% depending on tumor location. Regarding survival: this is highly dependent on genetic characteristics (see further). No generally applicable survival figures for *this phase* alone — it concerns weeks to several months of recovery and preparation for follow-up treatment.
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Phase 3: Chemoradiation (standard follow-up treatment)
**What happens:**
After surgery, standard chemotherapy combined with radiation follows. This takes place over 6 weeks:
- **Radiation**: daily sessions of approximately 15–30 minutes, targeted at the area where the tumor was. Dosage and schedule may vary.
- **Chemotherapy**: usually temozolomide, administered alongside and after radiation.
**Symptoms and side effects:**
- **Fatigue**: very common; accumulates during treatment.
- **Headache**: can increase due to radiation, sometimes severe.
- **Brain edema**: can increase again and affect symptoms such as clarity, motor functions.
- **Skin reactions**: redness, flaking, sometimes irritation in irradiated area (depending on field size).
- **Nausea and vomiting**: usually mild to moderate, well manageable with medication.
- **Hair loss**: permanent in irradiated area (often inconspicuous because head is irradiated below the hairline).
- **Immunosuppression**: infection risk increases.
- **Cognitive changes**: very many patients experience "chemo brain" — slowed thinking, forgetfulness, poor sleep.
**What it means for daily life:**
This is taxing. Many patients cannot work. Driving becomes impossible (radiation and fatigue, sometimes neurological symptoms). Leisure activities are limited. Regular clinic visits are mandatory (1–2 times per week). Family often feels exhausted by transportation and care.
At the same time, many patients are hopeful: they are doing *something active* against the disease. Side effects of fatigue are sometimes accepted for the sake of treatment.
**Who responds better?**
Patients with certain genetic characteristics (for example MGMT promoter methylation, IDH1 mutation) have better prospects for response and longer survival. This is determined by tissue analysis of the tumor. This topic falls outside this tab (see: Overview), but is clinically very important.
**Numbers:**
- **Median overall survival** (all patients together, all groups): approximately 12–15 months after diagnosis — source: EORTC/NCIC trial 2005, confirmed in multiple later cohorts.
- **Median progression-free survival** (time until tumor returns/grows): approximately 6–7 months.
- These figures are averages. Some patients survive 2–3 years or longer; others shorter.
- **Genetic stratification changes this picture considerably**: patients with more favorable genetic profiles have median survivals of 17–20+ months; less favorable groups <10 months.
What these figures mean: they are realities for large groups, not for you personally.
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Phase 4: Interim period and surveillance (progression-free period)
**What happens medically:**
After radiation and chemotherapy follows a period of watchful waiting and regular monitoring. MRI scans occur every 2–3 months in the first year, then less frequently (if everything is stable).
**Symptoms in this phase: **
This varies:
- Many patients feel considerable **improvement** of original symptoms; they get their lives back in part.
- **Exhaustion** can persist months after treatment.
- **Cognitive problems** (memory, concentration) can be permanent.
- **Motor consequences** of the tumor/radiation can persist or improve depending on where the tumor was.
- **Depression and anxiety** occur: patients live with uncertainty, afraid of recurrence.
- **Skin changes** in irradiated area (hyperpigmentation, atrophy) can occur.
**Neuropathic pain**, sleep problems, and **endocrine disturbances** (hormone restoration failure from radiation) can develop.
**What it means:**
This can be a physically and psychologically difficult phase. Some patients feel "hanging in the balance" — they have no active disease, but they are no longer a patient and not a healthy person either. Return to work is sometimes possible, but many struggle with fatigue, concentration, or anxiety. Relationships can become strained. For many, this is the phase in which psychosocial care (psychologist, social worker) is very valuable.
**Numbers:**
Approximately **50–60%** of patients will show progression (tumor growing back) within 1 year after initial treatment. The rest have longer stable disease. This means that for many, this phase is relatively short (months to a few years).
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Phase 5: Recurrent tumor growth / progression
**What happens:**
The tumor grows back. This can be near the original tumor area (local recurrence) or further away (diffuse). This is seen on MRI: new contrast-enhancing tissue, new swelling, new symptoms.
**Symptoms:**
This depends on where it comes back, but often:
- **Return or worsening** of original symptoms (weakness, speech problems, seizures, headache).
- **New symptoms** if tumor reaches other areas.
- **Accelerated neurological decline** over weeks to a few months.
- **Increased fatigue**, cognitive decline.
- **Immobility**: many patients can no longer walk independently, need support.
**Diagnosis of recurrence is sometimes difficult:**
Because radiation itself produces scar tissue and inflammatory changes, distinguishing between true tumor recurrence and treatment effects (pseudoprogression) can be difficult. Advanced imaging (diffusion MRI, perfusion MRI, PET) helps distinguish this. (This topic—progression vs. pseudoprogression—is the subject of much research mentioned in the sources.)
**Follow-up treatment:**
Options vary depending on:
- Time since initial radiation (minimum interval needed before re-radiation is possible),
- Location of recurrence,
- Overall condition of the patient.
Possibilities include:
- **Second surgery** (sometimes, for accessible tumors),
- **Re-radiation**: in certain schedules (hypofractionated, see sources),
- **Chemotherapy**: different drugs than temozolomide,
- **Experimental therapies**: in clinical trials (see sources: CAR cell therapies, immunotherapies, new drugs).
Many of these approaches are still under investigation; none of them is standard curative.
**What it means:**
This is usually an emotional turning point. Patients have adjusted to cure or at least long-term stable disease. A recurrence is morally difficult. Treatment options become more limited. Qual