After years in exam rooms, I feel like I’ve developed a pretty good sense of where cancer care is falling short. Hearing others’ experiences (including patients sharing their stories here on Substack) has only deepened that insight. These days, much of my work is focused on trying to close those gaps for my patients, and sometimes for friends and family facing their own diagnoses. It’s pushed me to become a better listener and to pay attention to the blind spots in cancer care.
To be clear, I’m increasingly encouraged by the science. Cancer treatments have advanced dramatically. Testing has become more precise. Supportive care has improved. We now have treatment options that would have been hard to imagine when I was in training. I see this progress every week, and it is a big part of why I remain so hopeful about the future of oncology.
But the experience of cancer care has not kept pace. That is the part I want to talk about here, the part patients actually have to live through.
Even at excellent cancer centers, cancer care still feels confusing, fragmented, rushed, and hard to navigate. Those of us inside the system know why each step is happening. We know why a biopsy takes time, why the biomarkers are important, why a scan has to be repeated, or why the surgeon comes before the oncologist in one case and after the oncologist in another. But from the patient’s perspective — it can feel like being dropped into a maze.
Over the past decade, I’ve put a lot of effort into improving my communication. I make an effort to explain things more clearly. I take my time when decisions are difficult. I try to be upfront about any uncertainty in outcomes. That helps, but only so much. Many of these gaps are rooted in how cancer care is structured, which means they’re shared by all of us working in this space.
I want to highlight some of the biggest blind spots I see in cancer care, and rather than just pointing them out, I think it’s more helpful to share practical ideas on how we can work to close these gaps.
Take breast cancer for example. A woman gets an abnormal mammogram. Then comes more imaging, maybe an ultrasound, then a biopsy, pathology, and biomarkers. After that come the referrals: surgery, medical oncology, radiation oncology, genetic counseling, and sometimes plastic surgery, an MRI, a repeat biopsy, or genomic testing on the tumor weeks later.
Before she has anything resembling a full plan, she might meet five or six people in different places. We know this sequence well and understand why each step happens. But for the patient, it’s experienced one phone call, one MyChart message, one pathology report, and one waiting period at a time. At each stage, the language can sound terrifying when taken out of context. Delays can feel personal, even when they aren’t meant to be. And despite having many doctors involved, no one may seem clearly responsible for keeping the whole picture together.
For patients and families:
Ask early on who your main point of contact is and get one name and number you can call with questions.
Keep a simple running file of your reports, dates, medications, and the names of everyone you’ve seen.
At each visit, it’s OK to ask what happens next and roughly when, until the sequence feels clearer.
For the oncology or primary care team:
Assign a nurse navigator as soon as a screening result comes back abnormal, so one person holds the whole picture.
Give patients a simple written roadmap early on: what’s happened, what’s pending, who’s next, and rough timing of things.
If nurse navigation is not available, make sure every patient has one reliable contact for questions while the workup is going on.
Action item: If you run a practice or a cancer center, trace your own path from an abnormal screen to the first treatment-planning visit and find out who owns the patient’s experience at each step. If the answer is no one, that’s the gap.
Patients are often told, “You should see an oncologist.” While that might sound like a step forward, it leaves a lot of questions unanswered.
Which oncologist? At which center? Does this person have real experience with my type of cancer? Will they listen? Will they want to understand what I’m hoping for? Are they open to talking about nutrition, exercise, integrative care, clinical trials, and second opinions?
Finding the right medical oncologist can feel like another maze. I’ve watched patients struggle with it, and I’ve watched my own family struggle with it too. Most referrals are made with good intent. But patients often have no idea why one oncologist or center was chosen over another. Clinical expertise is essential, and so is communication. People need someone who understands the disease and also takes the time to understand them.
This doesn’t mean every patient has to go to an academic center for every decision. Plenty of great cancer care takes place at community practices close to home. What patients really need is honest guidance on when it’s worth seeking specialized expertise, when a second opinion could help, or when a clinical trial should be part of the discussion, as well as how to know if their care team truly shares their goals.
For patients and families:
Ask your referring doctor why they chose this particular oncologist or center for your kind of cancer.
Know that asking for a second opinion is normal and expected. A good oncologist will welcome it.
Before the first visit, write down what you want to know: their experience with your cancer, clinical trial options, and how they communicate.
For the oncology or primary care team:
When you refer, say why this oncologist or center fits the patient’s cancer instead of handing over only a name.
Bring up second opinions yourself, so patients do not feel like they are being disloyal by asking.
Give patients a few plain questions to ask a prospective oncologist.
Action item: If you’re the patient, it is completely reasonable to seek a second opinion before you commit to a plan, and the right team will support you in doing it.
*Related articles that you might find helpful:
Before I talk with someone about surgery, chemotherapy, radiation, immunotherapy, hormone therapy, or any other direction a treatment plan can take, I need to understand the person in front of me. That sounds obvious, but I’m convinced it happens less often than it should.
In oncology, it’s easy to jump straight to the medical facts since the pathology, stage, guidelines, and typical sequence are already known. Meanwhile, the patient is often still grappling with how cancer became a part of their life in the first place.
So, I try to slow down and pay attention first. What does this person already understand? What scares them most? Who helps them make decisions? Are they still working, or caring for kids, a spouse, or an aging parent? What does a good outcome actually look like to them?
The same treatment lands very differently for a young parent, a teacher, someone who lives alone, or someone who has already watched a loved one go through cancer treatment. If I miss that context, I can still recommend the right guideline-based treatment and completely miss the patient. These questions are part of cancer care, every bit as real as the staging and the pathology.
For patients and families:
Tell your team early what you are most worried about and what a good outcome looks like to you.
Bring the people who help you make decisions to the first few visits.
Say how much detail you want right now, whether that is all of it or just the headlines for the moment.
For the oncology team:
Spend the first few minutes of a new visit on the person rather than the pathology.
Use a short pre-visit questionnaire about goals, worries, support at home, and how much detail the patient wants.
Write the patient’s goals into the chart next to the stage, so the whole team can see them.
Action item: If you’re the patient, before the treatment talk begins, tell your oncologist the one thing you’re most worried about and the one part of your life you most want to protect.
*Related articles that you might find helpful:
Cancer Staging: You Are Not a Number
When a diagnosis is new, the options can get laid out like a menu. Surgery, chemotherapy, immunotherapy, radiation, hormone-blocking treatment, targeted drugs, close monitoring, or a clinical trial. The side effects get reviewed, the schedule gets explained, a few percentages get mentioned. The patient nods, the family nods, and everyone is just trying to keep up.
A new cancer diagnosis can be terrifying, and someone might appear calm while actually processing only a small part of the conversation. Later, they head home with brochures, information, and a big decision to make. It’s a lot to expect from someone still trying to grasp the basic reality of what just happened.
A few simple questions, asked before the guideline pathway takes over, can change the whole conversation.
What are you hoping treatment can do for you?
How aggressive do you want to be?
Which parts of your life do you most want to protect?
What would make a treatment feel like too much?
How we frame the numbers makes a difference here too. A treatment described as cutting the chance of recurrence by a third sounds like an easy yes. The same treatment described as lowering someone’s risk from 12% to 8%, which spares about four people in a hundred, invites a more honest conversation.
Both descriptions are accurate. People deserve the version that lets them weigh the trade-off against the life they actually want, whether the goal is cure, long-term control, or protecting function and meaningful time.
For patients and families:
Ask for any benefit in plain numbers: out of a hundred people like me, how many does this help?
You do not have to decide on the spot. Ask whether you can take a day or two and talk again.
Take notes, or bring someone to take them, since it is hard to absorb this all at once.
For the oncology team:
Explain the benefit in plain numbers, and when possible, tell patients how many people need the treatment for one person to benefit. Do not rely only on the more impressive-sounding percentage.
Offer a decision aid or a written summary the patient can take home and read again once they are calmer.
When time allows, build in a second conversation before the final decision.
Action item: If you’re the patient, ask your oncologist to put the benefit in absolute terms, something like, “This helps about four people in a hundred,” so you can weigh it clearly.
*Related articles you might find helpful:
Who Actually Benefits from Cancer Treatment?
Most people I meet are interested in some form of integrative or holistic care. They want to know what they can eat, how they should exercise, whether supplements are safe, whether fasting is useful or risky, and how sleep and stress affect recovery. These are good questions, and they deserve thoughtful answers.
In a lot of oncology visits, there just isn’t much time for them. Part of that is the clock. Part of it is that a lot of integrative strategies have less clinical trial data behind them than drugs do. And part of it is appropriate caution, since some supplements really can interfere with treatment. But when we leave no room for these conversations, people go looking for answers elsewhere, and the internet is always happy to oblige.
Integrative oncology should play a central role in cancer care and be talked about openly. We can be upfront about what’s backed by strong evidence, what seems promising, and what’s still uncertain. It’s important to explore options that are likely safe and point out those that carry some risk. The goal isn’t to replace cancer treatments with lifestyle changes, but to make the overall care more holistic.
Nutrition, exercise, sleep, and stress management are supportive and personal. They can help someone get through treatment, and they work best when they are tailored to the individual rather than handed out as one formula for everyone. People should be able to bring these questions up without feeling judged.
For patients and families:
Bring up diet, supplements, exercise, and anything else you are doing or considering, so your team has the full picture.
Tell your oncologist about every supplement you take, since some can interfere with treatment.
Ask your team for trustworthy sources rather than leaning on the internet alone.
For the oncology team:
Ask every patient, as a matter of routine, what they are already doing or thinking about for diet, supplements, and activity.
Keep short, honest one-pagers handy on common questions like supplements, fasting, and exercise.
Build a few trusted relationships with credible nutrition and integrative resources you can refer to.
Action item: If you’re the patient, bring a full list of your supplements and any practices like fasting to your next visit, and ask plainly what is safe alongside your treatment.
We tend to go over side effects in a technically accurate way, and patients still may not really grasp the trade-offs underneath them. Neuropathy is a good example.
We say that numbness and tingling can happen, and that it can be long term. But does the person across from us picture what that could actually mean for them? Does the golfer realize it could change their balance and feel? Does the musician realize it could reach their fingers? Does someone who works with their hands realize it could change what they do all day? Does an older patient realize it could raise the risk of a fall?
The same gap shows up with fatigue, memory or concentration changes, hormone symptoms, sexual health, fertility, bowel changes, immune side effects, swelling after lymph node treatment, and body image. Side effects are trade-offs, and they only really make sense inside a particular life.
That weighs most heavily when the expected benefit of treatment is modest or uncertain. One person will accept a hard side-effect profile because the possible benefit feels worth it. Another person, looking at the exact same numbers, will land somewhere else. Both choices can be right when they are well informed and fit that person’s values. Our job is to explain the trade-offs clearly enough that the patient can take a real part in the decision.
For patients and families:
Tell your team what your days actually involve: your work, your hobbies, what your hands and energy need to do.
Say which side effects would be hardest for you, so the plan can account for them.
Speak up if a side effect changes during treatment, since the plan can often be adjusted.
For the oncology team:
Tie each major side effect to that specific person’s daily life and work.
Ask what the patient would find hardest to lose, and weigh the side effects against that.
Revisit side effects during treatment, not just at the consent conversation.
Action item: If you’re the patient, tell your oncologist which side effect would disrupt your life the most, and ask how likely it is and what can be done about it.
Electronic records and patient portals have really helped. People can see their results, send messages, check appointments, and get hold of more information than they ever could before.
Real-time communication during treatment can still be tricky. If a new symptom appears midway through, getting quick and clear guidance isn’t always easy. A patient might call the office, speak with one person, then another, and end up with slightly different advice depending on who answers, how the message is passed along, and how busy the clinic happens to be. It’s frustrating, and at times, unsafe.
Cancer care needs better systems for handling symptoms between visits. That means clearer triage pathways, better tools, smarter use of technology, and more consistent messaging. It’s important for people to know which symptoms require urgent attention, which can be managed at home, and who will help them figure it out. That’s all part of good quality care.
For patients and families:
Ask for clear guidance in writing: which symptoms need a call right away, which can wait, and who to contact.
Keep that one phone number somewhere easy to find, for you and for whoever helps you.
When you call, jot down who you spoke with and what they said, in case the advice differs next time.
For the oncology or primary care team:
Give every patient a clear, written symptom guide.
Use consistent triage protocols so the advice does not depend on who happens to answer the phone.
Use portal messaging and remote symptom check-ins where they genuinely help.
Action item: If you run a practice, give every patient one reliable number and a simple written symptom guide, and make sure the triage answer is the same no matter who picks up.
Survivorship is still underdeveloped in a lot of cancer care. People finish surgery, chemotherapy, radiation, immunotherapy, or endocrine therapy, and then the intensity of support can fall off sharply. They might be told when the next scan or mammogram is due and still be left holding the bigger questions.
What do I do now? How do I lower my risk? Why am I still so tired? Who is watching my heart, my bones, my hormones, my neuropathy, my emotional recovery? How do I live with the fear that the cancer will come back?
Too often, survivorship becomes a handoff rather than a well-thought-out plan. Primary care doctors play a key role, but they don’t always get the details they need to step in effectively. Oncology tends to assume primary care is handling long-term health, while primary care assumes oncology is managing cancer-related effects. The patient ends up stuck in the space between those assumptions.
Life after cancer treatment needs a real plan. It should spell out the surveillance and the reason behind each piece of it, along with prevention, late effects, emotional health, physical function, sleep, sexual health, and financial strain. It should also say clearly who is responsible for what.
If we really believe more people are going to live long lives after cancer, and I think we should, then we cannot keep treating survivorship as an afterthought.
For patients and families:
When treatment ends, ask for a written survivorship plan: your follow-up schedule, what to watch for, and who handles what.
Make sure your primary care doctor gets a copy of that plan and a summary of your treatment.
Bring up the things that linger, like fatigue, fear of recurrence, or sexual health, since they are part of care.
For the oncology or primary care team:
Send everyone off with a written survivorship plan and the reasons behind each piece of it.
Offer a dedicated survivorship visit for fatigue, function, emotional health, and fear of recurrence.
Send primary care a clear summary, so they can manage long-term health with confidence.
Action item: If you’re the patient, ask for your survivorship plan in writing, and make sure both you and your primary care doctor are working from the same copy.
So those are some of the bigger gaps I see from inside cancer care:
I’m sure this list is incomplete, and that is part of why I wanted to write it down. If you are a patient, a survivor, a caregiver, a nurse, a navigator, a physician, a primary care doctor, or anyone who has lived near cancer care, I would really like to hear what you see.
Where did the system work well for you? Where did it let you down? What do you wish someone had explained sooner? What would have made the whole experience feel more connected, more honest, and more human?
I believe in modern oncology. I’ve seen so much progress and so many lives improved that it’s hard to feel otherwise. But trusting the science also means being honest about the experiences that come with it.
The next major leap in cancer care won’t just come from a breakthrough drug or biomarker, but from addressing the issues in the system patients have been calling out for years. That starts with truly listening before any treatment plan is created.
We owe it to people to take the time to understand the life their plan will fit into. That’s where better cancer care begins.
Related articles:
Letter to My New Cancer Patients:
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April 27, 2025
"To most physicians, my illness is a routine incident in their rounds. To me, it’s the crisis of my life. I would feel better if I had a doctor who at least perceived this incongruity."
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