Finding oncologists who work with you: your right to informed, collaborative cancer care

Why you don’t have to accept the first treatment protocol offered, and how to find doctors who respect your values and support your informed decisions.

When my oncologist once said, 'You leave no stone unturned,' it wasn’t a criticism; it was recognition. Not that I had all the answers, but that I was showing up as an active participant in my own care, asking questions, seeking clarity, and wanting to understand.

Like many patients, I entered this process with a mix of fear, hope, and overwhelm. Years of exploring alternative health approaches had taught me to be curious and to question, but nothing quite prepares you for the weight of choices when it’s your life on the line. In those moments, it’s easy to feel swept along by the system, pressured by urgency, or paralysed by fear.

And yet here’s something I’ve learned: treatment decisions are deeply personal. They’re not just medical, they’re also about values, beliefs, life circumstances, risk profile and tolerance. No one else can ever fully know what the right decision is for you. That’s why it’s so important to find doctors who don’t just prescribe, but who partner with you, doctors who combine their expertise with respect for your perspective and your right to make informed choices.

Expertise without collaboration leaves something crucial missing. The best oncologists are the ones who recognise you as the expert on your life, while they bring their expertise on the disease. That partnership can transform the entire treatment experience.

The challenges of protocol-driven medicine

Most oncologists, especially in public healthcare systems, work under immense pressure to begin treatment quickly. In the UK, for example, they are measured against targets to start within three months of diagnosis. This urgency is well-intentioned, but it often leaves little room for thorough conversations or truly personalised planning.

The result can feel like a conveyor belt: surgery, chemotherapy, radiotherapy. Next patient.

But cancer isn’t a one-size-fits-all disease, and treatment shouldn’t be either.

Too often, women tell me they chose aggressive treatments without fully understanding what the numbers meant, or what life during and after would feel like. Many admit they were simply terrified, afraid of dying, of disappointing their families, of being seen as non-compliant. Decisions made primarily from fear may not always serve long-term wellbeing.

One oncologist once told me something that stayed with me: 'When someone ends up doing chemotherapy because their partner or family pushes them, it never ends well for the patient.'

Decisions made under pressure, whether from time targets, family panic, or sheer overwhelm, rarely serve a patient’s best long-term interests.

Looking beyond the numbers

When it comes to cancer treatment, the numbers are often more nuanced than the way they’re first presented. In reality, some treatments may only offer a small reduction in risk, yet come with life-altering side effects.

What many patients don’t realise is that the difference between relative benefit ('this cuts your risk by 30%') and absolute benefit ('this reduces your risk from 6% to 4%') can be profound. One sounds dramatic, the other less so, but both describe the same data.

This distinction matters. If a treatment means years of side effects, impacting sleep, energy, mood, relationships, and work, shouldn’t patients be given the chance to weigh that impact against the realistic benefit for them personally?

Take endocrine therapy, for example. It’s prescribed to most women with hormone-positive breast cancer, often for 5-10 years. Yet research shows up to 25% never start the medication, and 30–40% stop early because the side effects, such as medical menopause, fatigue, joint pain, and brain fog, are too disruptive. For many, this long-term phase feels even harder than the acute treatments like surgery or chemo.

Chemotherapy and radiotherapy, while life-saving for some, also place immense strain on the body’s natural defences. That’s why conversations about recovery shouldn’t stop at 'destroying cancer cells,' but must also include how to restore immune strength and long-term wellbeing.

That’s why collaboration with oncologists is so critical: to move beyond standard protocols, to have honest conversations about risks and benefits, and to make space for deeply personal decisions that honour both survival and quality of life.

My journey towards collaborative care

I didn’t reject medical treatment. But I did reject the idea of being a passive recipient of whatever was prescribed.

It took multiple consultations and several second opinions before I found doctors who were willing to collaborate. Doctors who took the time to explain the numbers, weigh options, respect my values, and reassure me that plans could be reassessed and adapted as needed.

The difference wasn’t that we agreed on everything; it was that I felt like a partner in my care, not just a case file. That gave me confidence, not because I had no fear, but because I understood the choices I was making.

Family pressure and fear

Sometimes the pressure doesn’t only come from doctors, but also from loved ones. Families, understandably frightened, often encourage the most aggressive treatment options. 'Do everything possible' becomes the mantra, even when 'everything' may cause more harm than benefit.

I’ve spoken with women who told me that if they hadn’t had children, they wouldn’t have chosen chemotherapy at all. They made the decision because they felt they had no choice, because their role as a mother demanded they try everything, regardless of how small the benefit or how heavy the toll on their bodies.

I’ve experienced this kind of pressure myself. Fear can easily turn into ultimatums or conflict. In those moments, having an oncologist who supports your informed decisions becomes invaluable. They can provide context, explain risks and benefits clearly, and help families understand that you are making choices rationally, not recklessly.

Your right to ask important questions

In the chaos of a new diagnosis, it’s easy to forget that you have rights, that you can ask questions, seek second opinions, and take time to reflect.

You might ask:

• What are the realistic benefits of this treatment for my specific type and stage of cancer?

• How much absolute risk reduction will it give me?

• What side effects can I expect, both short and long term?

• How will this affect my quality of life day to day?

• What are the alternatives? Can this protocol be adjusted later if needed?

• What does monitoring or a less aggressive approach look like?

Bring someone you trust with you. When you’re in shock, it’s hard to absorb complex information. A companion can take notes, help you reflect, and balance the emotions that come with fear and urgency.

What collaborative oncologists look like

Not all oncologists work in the same way, and many are under immense institutional pressures. But some do approach their patients as genuine partners.

From my experience, collaborative oncologists:

• Welcome your questions instead of dismissing them.

• Engage with your research rather than brushing it off.

• Acknowledge uncertainties and limits of knowledge.

• Support informed choice, even if you decline or modify standard treatments.

• Personalise recommendations to your age, health, values, and priorities.

• Stay open to reassessing and adjusting treatment if side effects become unmanageable.

Why collaboration matters

Fear is an inevitable part of cancer, but it shouldn’t be the driver of your most important decisions.

Collaborative care doesn’t mean rejecting medical science. It means combining clinical expertise with your lived experience, your values, and your definition of quality of life. It means recognising that treatment is not static, plans can be reassessed and adapted as your needs and priorities evolve.

Most of all, it’s a reminder that we, as patients, have more agency in our healing than we often realise. We have the right to ask questions, seek second opinions, and make decisions that align with our values, not just follow protocols out of fear or pressure.

Healing is about more than eradicating disease. It’s about restoring balance, agency, and wholeness. With the right oncologists beside you, the journey may still be hard, but it becomes one that supports not only survival but true healing.

Have you ever experienced the difference between being treated as a case file versus being treated as a partner in your care? What did collaboration or the lack of it mean for your healing journey?