The journey
Most of this is waiting.
Here is where, and how long.
Every diagram of cancer care shows evenly spaced steps, as though the hard part were the treatment. It is not. The gaps between the steps are drawn to scale below, because the gaps are where families are lost, and they are the part we are actually paid to hold.
Start here
Where are you right now?
Four phases, twelve stations, 11 waits. You are at one of them.
Phase 1 of 4
Finding out
“Something has been found, or I am worried”
The stretch between a symptom and a name for it. Most of what goes wrong here is administrative, not clinical.
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The first appointment
A long consultation that ends in a written plan, not a prescription pad. If it is nothing, we say so and write down what would change that.
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Tests, and the wait for them
Imaging, bloods, and a biopsy if one is indicated. We tell you which of these actually changes the answer and which is being done for completeness.
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The diagnosis, read independently
The biopsy is re-read before anyone reads the treatment plan. If the diagnosis is wrong, every decision built on it is wrong too.
Same daythe wait
Nothing, if the reflex pathway is followed. This is the one gap that should not exist, and in most clinics it is where a finding is handed back to the patient to chase.
3 to 10 daysthe wait
The commonest place a family is lost. Reports sit at a lab, blocks stay at the originating hospital, and nobody is chasing them because nobody was asked to. We chase them.
3 to 5 daysthe wait
Tissue turns out to be insufficient for the molecular work that comes next, and nobody finds out until the assay fails. We check adequacy before anything is sent.
Phase 2 of 4
Deciding
“I have a diagnosis and I do not know what to do”
The phase this institute exists for. Everything here is a decision, and every decision is written down with the alternatives that were rejected.
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Molecular testing, if it changes the answer
A named oncologist selects the tier, signs the order, and signs the interpretation back. Not a portal, not a template, not a panel chosen because it is the one the lab is promoting.
- Who you see
- Ordered here, run by
- What it costs
- Quoted per tier before you commit
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The board sits on your case
Oncology, pathology, genomic interpretation and counselling on one file at one table. The quorum rule means no case is decided with a seat empty.
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The plan, costed before anything starts
Sequencing, evidence tier per option, the total cost of the course rather than the first admission, a trial search, and what happens if it does not work.
10 to 21 daysthe wait
The longest wait in the whole journey, and the one where families are most often sold a test that was never going to change the plan. We tell you first whether it will.
To the next sittingthe wait
In most places a tumour board is a meeting that happens to you and is never written down. You get the signed recommendation, the rejected alternatives, and any dissent.
Your decisionthe wait
This is the gap that should be yours to take. Nobody should be asked to consent to a treatment course on the day they are told the diagnosis.
Phase 3 of 4
Being treated
“Treatment has started, or is about to”
The plan is made here and delivered wherever it is best delivered. What stays constant is who holds the thread.
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The procedure or the first cycle
Surgery at the partner centre with the right volume. Radiation at a centre with the right machine. Infusions near your home where that is clinically reasonable. We negotiate the rate with them before you commit.
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Living through it
Nausea, counts, mouth, skin, appetite, pain, money, work, and the family. Each has a clinic and a protocol, and none of them waits for a crisis.
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Response, assessed against what was predicted
Scans and markers read against the plan that was written before you started, so the question is whether it did what it was supposed to.
Cycle to cyclethe wait
Delay and dose reduction are the quiet ways a curative course becomes a partial one. Supportive care is what keeps a course on schedule, and it is the first thing cut.
Any hourthe wait
A fever during chemotherapy is an emergency measured in hours. Most patients are told to watch for it and never told what to do. You get a written plan naming the hospital and the number.
To the next scanthe wait
Scan-to-scan is the hardest waiting there is. Your navigator holds the date, and calls you rather than waiting for you to call.
Phase 4 of 4
Living after
“Treatment has finished, or it is not going to”
The phase every system drops. Discharge is not a plan, and the end of treatment is not the end of the disease being part of your life.
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A survivorship plan, in writing
What you had, what it means for the next twenty years, the surveillance schedule, the late effects to watch for, and what your GP needs to know.
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Your family's risk, if it is inherited
Where a hereditary variant is found, the cascade plan reaches the relatives who need testing, with a letter they can take to their own doctor.
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If it comes back, or does not respond
Re-profiling, because the tumour growing now may not be the one sampled two years ago. A trial search re-run. And an honest conversation about whether more treatment is the right answer.
Months, then yearsthe wait
Surveillance without recall is not surveillance. Appointments are missed because life resumed, not because anyone stopped caring. We call you.
Their timelinethe wait
A finding that stays in one person's file helps nobody else in the family. Most cascade programmes fail at the letter.
Watch
Ninety seconds on the waiting
The part of the journey nobody films, because nothing visible happens in it.
Wherever you are on this, start with the free call
Fifteen minutes, no charge. If we cannot help you, we will say so on that call.