For most people with metastatic melanoma, the first scan comes 8–12 weeks after treatment begins.
B Usually after 2–3 cycles.
And those weeks? They stretch and they echo into the empty voids of your thoughts. Scanxiety starts to creep in and those positive thoughts start to waiver under the increasing uncertainty of what’s next.
They are filled with counting days, replaying symptoms, wondering what’s happening inside a body you no longer fully trust. My past experiences with melanoma have always involved surgery and then healing. The last surgery took around 14 hours whilst the surgeons skilfully my spleen and the vast majority of my pancreas. They saved my life 4 years ago. Single Nivolumab followed for 12 months.
This time it’s so very different – the physiological weight of “carrying an unwanted guest” around is sometimes very frightening.
Feelings of lumps and bumps, aches and pains leap out every day – are they real? Or is it that your mind is playing a cruel game and increasing the mental torment.
In my case my scan has been scheduled for February 5th which is just less than 3 months after IPINIVO was started. My consultation is also scheduled for the following week.
This is THE MOST IMPORTANT SCAN OF MY WHOLE EXPERIENCES WITH MELANOMA!
The reason for the wait is logical — but logic doesn’t quiet the fear:
Immunotherapy doesn’t rush in like chemo; it moves slowly and deliberately. Your immune system has to be woken up, trained, unleashed Scan too early, and the pictures can lie. The normal sequence is for 4 doses of IPINIVO followed by single Nivo.
Every patients body is different and the tolerance levels to the high levels of toxicity can mean that treatment may be withheld, cancelled or postponed. In my case the Ipilumab has been cancelled and a course of steroids prescribed to calm the side effects down.
Some teams scan sooner — not because they want to, but because anxiety forces the issue:
Symptoms worsen and won’t be ignored Something doesn’t feel right Decisions suddenly can’t wait
What could the scan show?
This is where immunotherapy stops being a treatment plan and becomes an emotional trial.
This is where hope and dread sit side by side.
✅ 1. Response — the moment you’re praying for
Tumours shrink, lesions quieten and PET scans dim instead of flare
This is the result you rehearse in your head.
The phone call you imagine answering calmly — even though you know you won’t.
This is hope, fragile and fierce 🤞
⚖️ 2. Stable disease
Stable disease (SD) in advanced cutaneous melanoma after treatment with ipilimumab and nivolumab (Ipi-Nivo) is considered a positive clinical outcome, as it indicates the treatment is controlling the tumor, often resulting in prolonged, durable, and long-term,5-year, survival.
Nothing better. Nothing worse – a feeling of numbness and frustration. What can be done? Can anything be done?
It sounds underwhelming and somewhat of an anticlimax but with immunotherapy, stillness can be progress.
Holding ground today may mean retreat tomorrow — if you can live with the waiting.
⚠️ 3. Pseudo-progression — the cruel mind game
Pseudoprogression in skin cancer (mainly melanoma) is a rare (approx. 5-10% of cases) phenomenon where tumors initially appear to grow or new lesions emerge on imaging during immune checkpoint inhibitor (ICI) therapy, but subsequently shrink as the immune system attacks the cancer. It is caused by an influx of immune cells creating temporary inflammation and swelling.
Tumours look bigger and/or new spots appear. The words on the report hit like a punch.
However, this might not be cancer winning – It might be your immune system storming the battlefield — inflammation masquerading as failure.
It’s unique to immunotherapy and it’s terrifying for those that experience it.
And it’s why doctors hesitate to stop treatment too soon.
Often you’re sent back into limbo:
“Let’s scan again in 4–8 weeks.”
More waiting. More sleepless nights. More breath-holding.
❌ 4. True progression
True progression of skin cancer (specifically melanoma) after immunotherapy, known as true disease progression, involves the growth of existing tumors or the appearance of new lesions despite treatment, often indicated by clinical deterioration and rising tumor markers. Unlike pseudoprogression, which is temporary, true progression reflects resistance to checkpoint inhibitors, with a subset of patients experiencing a rare, rapid accelerated growth called hyperprogressive disease
Real growth and new disease Symptoms.
If this is confirmed, the conversation changes:
New treatments Targeted therapy if BRAF+ Clinical trials Or plans that focus on control rather than cure
It’s not just a medical shift — it’s an emotional earthquake.
Why how you feel matters as much as what the scan shows
Your oncologist doesn’t just read images. They read you.
They’ll ask:
How are you really feeling? Are symptoms creeping forward or pulling back? Are side effects raging or settling?
Sometimes the scan looks chaotic — but you feel better.
And sometimes that matters more than pixels on a screen.
💙 A very honest truth
The first scan after IPI-NIVO is often the hardest – soaked with anxiety and dread and even not providing the clearest of answers.
Immunotherapy doesn’t follow neat timelines and it doesn’t respect deadlines or emotional readiness.
That scan is not a verdict nor a judgement and it feels like a snapshot of a battle unfolding whilst the fighting factions plan a strategy.
The feelings through this part of the cancer treatment are incredibly raw. The tears, the stress, the anxiety and the realisation that maybe, just maybe this THING may be bigger and uglier than you.
You’re only human.
