Patient FAQs

There’s risks and benefits to consider for every medical intervention. The risks of clinical trial participation are outlined very clearly prior to participation. Clinical trials are not without risk, just like standard care.

Any kind of medical care given with the goal of improving things for a patient with an incurable problem is a form of palliative care. A great deal of cancer treatment, even some forms of cancer chemotherapy, can be palliative care. All forms of pain medication are palliative care. Even counseling for anxiety can be a form of palliative care.

But hospice care is a specific form of palliative care provided to patients with incurable illness when death is expected within six months.

No. Patients on phase II or phase III clinical trials most often receive standard care treatments or newer but established as safe treatments. Such clinical trials are highly regulated and controlled.

Yes! A person can qualify for hospice services beyond six months if they still have a terminal diagnosis.

Medicare allows this for two reasons: estimating life expectancy isn’t exact, and hospice care often helps people live longer than they would without it.

Usually not. In most cases, hospice care can only begin when active cancer treatment ends. There are exceptions, the most notable being pediatric cancer.

Some agencies are piloting concurrent cancer treatment/hospice care for certain specific cancer situations. These are rare exceptions and may not be available.

Yes.

It depends greatly on the exact treatment you’re receiving. Many patients are still able to drink alcohol in moderation during cancer treatment. 

But some radiation and chemotherapy treatments can make alcohol taste bad. Alcohol may make nausea worse. And if you’re being treated for head and neck cancer or esophageal cancer, drinking alcohol may even be painful. 

Regular alcohol intake can make bone marrow suppression and liver dysfunction worse. Since some cancer treatments risk those side effects, you should discuss whether it’s okay to drink alcohol with your cancer doctor. 

Keep in mind, drinking even in moderation comes with risk. That said, alcohol is an important part of life for many people and the decision to drink (or not) is greatly dependent on what you value as an individual. 

No, informed consent is mandatory for clinical trial enrollment and participation.

A patient’s care is most times very similar whether on a clinical trial or not and is always supported medically.

If you are already taking supplements, we highly recommend that you discuss that up front with your care team. They will determine what you should or shouldn’t take during treatment to make your treatment as safe and effective as possible.  

Whether a patient is on a clinical trial or not, they always control their care. Patients have the right to stop any care, at any time, for any reason whether a patient is on a clinical trial or not.

Almost never, though there are select situations in which there is no clearly defined standard of care for which no treatment has been proven to be effective. In this situation, participants could be randomized to a new treatment versus a placebo. 

Generally, phase III clinical trials randomize patients to a standard of care, newer treatment, or standard of care plus a newer treatment. 

Most modern clinical trials do not treat patients with a placebo.

No, in fact, it’s probably the opposite. Enrolling a patient in a clinical trial and providing care while on the clinical trial takes more time and resources than patients receiving standard treatment. This may decrease the amount of time a physician has to see other patients.

Many clinical trials are designed and managed by the National Cancer Institue (NCI) in the United States. This is a government funded agency whose goal is to improve cancer care. Data from many clinical trials are collected and stored within the NCI or aligned agencies, however, it is typically de-identified such that patients are protected from even the tiniest possible overreach of the government. The data collected and managed is solely used for improving cancer care.

Yes. Everyone over the age of eighteen should have a Healthcare Power of Attorney as an absolute minimum.

We tend not to talk to our loved ones about our health wishes and we never know when we may become incapacitated.

Like everyone over the age of eighteen, you need a Healthcare Power of Attorney as an absolute minimum.

Most people and their families haven’t planned sufficiently for serious illness or incapacity. We tend not to talk to our loved ones about it. And most of us don’t have our wishes spelled out in any formal way. This creates avoidable stress and confusion when unexpected illness and incapacity occurs. You can do yourself and your family a big favor by taking some simple steps right now.

Not usually.

If you were well enough before treatment to live independently (including shopping and preparing food, maintaining a safe home environment, etc.) you shouldn’t need close supervision afterwards.

It depends on the lifestyle. Cancer does not just affect people that are unhealthy or those that do not have a healthy lifestyle. In people who do not have a healthy lifestyle, a new diagnosis of cancer may be the wake up call they need to make healthier choices. Common examples include changing to a healthier diet, maintaining a closer to optimal weight, increasing amounts of exercise, quitting smoking, or reducing/stopping alcohol consumption. 

You’ll still need a primary care provider to help manage your other medical issues.

Your primary care provider is going to manage things like diabetes, hypertension, and cholesterol better than your cancer care team, just like your cancer care team is going to manage your cancer care better than your primary care team.

In the United States, all patients covered by Medicare receive complete coverage for all hospice services provided in the home.

Many non-Medicare insurances also provide generous coverage for hospice services, though you should check with your insurer or hospice provider if you’re not on Medicare.

Yes, typically insurance plans are mandated by federal law (the Affordable Care Act) to be covered by commercial and government insurance plans.

Sugar itself is not a cancer-causing substance.

A diet routinely high in added sugars from sweetened beverages and foods can contribute to inflammation in the body that may put individuals at an increased risk for developing chronic diseases including cancers.

Sugar is found naturally in many foods we consider to be healthy choices, so instead, we encourage increasing the amount of plant-based foods, which contain a wide variety of nutrition in our meals instead of focusing on specific nutrients.  

For much of our lives we go about assuming that today will be like yesterday, and tomorrow will be like today. We feel safe.

But when things like cancer come out of nowhere, we lose that sense of safety – and we lose our confidence about tomorrow.

The truth is, we never really had the promise of tomorrow, or that things would stay the same. We just got lulled into believing it because things had been stable for so long.

But cancer taught us the truth – that life is constantly changing, difficult and unpleasant things sometimes happen, and the future is uncertain for us all.

Learning to live happily after a disruption like cancer requires us to learn (or remember) that life is uncertain, the present moment is precious, and fear comes from demanding to know more about tomorrow than any human is allowed to know.

Learning to live with uncertainty is as much a spiritual journey as a medical one, and every human being must learn it at one point or another.

Most people say the lesson is worth learning, and that life is richer afterwards.

You can apply for disability on the Social Security website. If you have an Aging and Disability Resource Center in your county, they will also be able to help you.

Please call your insurance or clinic to verify the provider and healthcare system you are going to is in-network.

Hydration needs can vary from person to person based on body composition, treatment, activity levels, side effects, and much more. Sweating, fevers, diarrhea or vomiting increase hydration needs.

A baseline of 64-80 fluid ounces is usually recommended and this can come from beverages such as water, sports drinks, juice, milk, protein drinks, etc.

Also consider foods that have high water content such as soups/broths, fruits, vegetables, smoothies etc.   

You should tell them the way we hope you were told – clearly, concisely, and with extra time taken together to talk about any emotions you or they may be feeling. 

• Brief is better, and plain facts are best. 
• You may be tempted to try to protect your loved ones, especially if you’re having to tell your children or grandchildren. Resist this temptation. You cannot protect them from what’s happening, and you can’t stop them from feeling difficult emotions. 
• Once the plain facts are out in the open, they’re easier to cope with. Hiding things lets your loved ones’ imaginations run wild, and usually makes things seem scarier than they are. 
• These guidelines even apply if you’re talking to very young children. Just tell them the plain facts and answer any questions they ask clearly and with complete honesty. 
• Children only ask questions they need to have answered, and they have a surprising capacity to know what they need to know. Give their questions the respect they deserve. Answer them simply and honestly. 

Treatment costs will depend on your insurance coverage.

The most important things are ensuring you are going to an in-network provider, and the clinic has obtained prior authorization for your treatment. If those are done your out-of-pocket cost should not exceed your in-network, out-of-pocket maximum as defined by your insurance.

We can estimate your chances of cure accurately, and if you want to talk to your doctor about this, you should ask. We don’t mind answering these kinds of questions. 

But even if we know a specific probability, such as 85% cured versus 15% not cured, we can’t know whether you’re in the 85% or the 15%. And no tests or scans that we can take right now will tell us either. Only time can tell us with certainty.

The first thing to do is notify your healthcare provider.

There are many options that can be reviewed to determine what will be best for you. Some of the options include COBRA coverage through your current employer, a Marketplace plan, and Medicaid (depending on diagnosis, income, and assets). There may be resources within your community or your healthcare system that can help you with that investigation.

Just like any other medicine, many vitamins, and alcohol – cancer treatments can indeed be poisonous. Whether something becomes poisonous or not is a matter of the dose, and how it’s used.

Yes, if they don’t have any contagious infections. 

Your insurance should pay for your treatment if there is an authorization in place.

It is important to encourage a loved one, instead of pressuring. There may be a variety of reasons someone isn’t interested in eating, including treatment side effects.

Sometimes when asked ‘what would you like?’, the question is too large and not specific enough. Try listing a couple of options for them to choose from or brainstorm together by looking at recipes in a book.

The space where a person eats can also play a role in a person’s appetite so consider what might make the table more relaxing to help encourage better intake, or perhaps eating socially when able.

Most people can still go to work or school with minimal interruption during cancer treatment. There are exceptions, such as intensive treatment for acute leukemia or aggressive lymphoma. Most people will need to modify their schedule to allow for frequent clinic visits and may need to modify their work hours or school course load to allow for treatment-related fatigue.

If you’re very ill at diagnosis, or if your treatment is expected to be intense or will require frequent hospitalization (such as for some forms of acute leukemia or aggressive lymphoma) you may need to take disability leave from work or school for a period of time.

Weight loss can be divided into two categories: intentional and unintentional. Intentional weight loss can be a result of someone trying to lose weight through food choices or movement.

But often, in cancer treatment, we see unintentional weight loss, or weight loss without someone trying, sometimes due to increased stress. This type of weight loss can also result in increased fatigue, decreased strength and quality of life, regardless of your starting weight at the beginning of treatment.

A dietitian can provide suggestions and help you brainstorm ideas to increase your nutrition at a time when eating is difficult.

There are also newer medications available that are promising treatment options for weight loss than can be associated with advanced cancer.

You can’t get very far with your healthcare team if you doubt whether you’re getting good advice. It’s natural to doubt and second-guess any scary diagnosis – like cancer. You want to be sure nothing important is being overlooked.

Getting a second opinion at the beginning can go a long way to putting those worries and second-guesses behind you, so you can focus on the road ahead. If the thought of a second opinion ever occurs to you, go ahead and ask for one.

How your doctor reacts to a request for a second opinion is also a good test of whether they’re trustworthy. Medicine is supposed to be collaborative, and any good doctor will be more than willing to have the diagnosis and recommendations reviewed by someone else. If your doctor is reluctant or annoyed about getting a second opinion, you should probably work with someone else.

Yes. It really is that simple. You think you don’t need it or won’t benefit from it. You’re mistaken. Try it. You may not need it for long. Maybe only once will be all you need. But no one other than a group of people going through the same thing will ever understand. Not even your doctor.

View our monthly support group information here.

There is some variability from one type of cancer to another.

In a general sense, having a first-degree family member (sibling, parent, child) with a common cancer; this typically does increase an individual’s risk of developing that type of cancer by 2-3 fold.

If you don’t have insurance let your provider’s office know right away. 

Ultimately the best thing is to find insurance that will cover you to help ease any financial burden. Ask your clinic if they have someone who can work collaboratively with you or have a resource to help you.

You should receive price estimates before any services which will allow you to work with the health care system to determine payments and/or payment plans.

As part of the Affordable Care Act, it is illegal for insurance companies to decline patient coverage due to a pre-existing condition.

Raw/unpasteurized animal products (fish, undercooked meat, unpasteurized milk/cheese, raw eggs, etc.)

Food that doesn’t make you feel well after eating.

Food that you are allergic to.

We encourage food intake that nourishes the body without guilt or shame, practicing flexibility and giving yourself grace when it comes to making food choices. Food is meant to be enjoyed.

Treatment may come with side effects that make it difficult to eat or enjoy certain foods.

Research encourages us to eat as many plants as possible to provide benefits in reducing cancer risk and improving treatment outcomes.

There are different financial assistance programs that may be available to assist you with your bill. Some options for assistance include national and local charitable foundations, pharmaceutical co-pay cards, hospital community care programs, and payment plans.

If your insurance is out-of-network with a facility it is in your best interest to find a facility that is in-network.

Some insurance plans have out-of-network benefits, but many do not. Even if you have an out-of-network benefit you will still be responsible for high out-of-pocket costs.

Many healthcare facilities will require upfront payments from you to assist with the costs.

Information about cancer from the internet, the press, and your friends can be accurate, biased, incomplete, speculative, premature, irrelevant. Sorting out what’s helpful can be a real challenge.

• First, details matter. Different kinds of cancer behave differently and have different treatments and prognoses. Even cancers of the same general type (like lung and breast cancer) can vary widely depending on stage and subtype. It’s easy to accidentally read the wrong information and come to the wrong conclusions.

• Second, even accurate information can’t always be taken at face value – context is important. For example, very preliminary scientific studies on cancer breakthroughs in the lab are sometimes announced in the press as though the cure will arrive tomorrow – and all too often there’s only silence afterwards, because the initial results didn’t pan out or they’re still years away from being clinically useful.

Science changes its mind when presented with enough contrary evidence. This is its main strength. Always demand evidence and be skeptical of any claim that can’t be backed up with sufficient evidence.

No treatment is good for everything. If something is touted as good for anything that ails you, like they used to say about snake oil in the days of the old traveling medicine shows, then that’s probably what it is. Just about the only two things that have ever been shown to be good for almost everything is sleep and exercise.

You’re going to need help sorting through all of it. We can help you do that. Ask questions about what you’re reading or hearing, and don’t be shy about asking questions if you run across conflicting information.

An advance directive is simply an instruction or set of instructions about how you want to be cared for. It’s intended to represent you and your wishes in the event you become unable to speak for yourself.

It describes a patient’s level of functioning in terms of their ability to care for themselves, daily activity, and physical ability (walking, working, etc.).

A person who has had a cancer diagnosis is oftentimes called a “cancer survivor.”

When people talk about “survivorship,” they are usually referring to navigating their life experiences and challenges resulting from their cancer diagnosis.

The phrase cancer survivor can mean different things to different people. It is often used as a general term describing someone who has had a diagnosis of cancer. This means that cancer survivorship starts at the time of diagnosis.

Not everyone who has or has had cancer uses the word survivor. For some people, this term doesn’t feel right. They may feel more comfortable defining themselves as a “person who has had cancer”, “a person living with cancer,” or another way.

Depending on several factors, certain supplements may be recommended. This will be determined by your provider and/or dietitian. Don’t hesitate to ask if you have questions regarding supplements you are interested in taking.  

The most basic advance directive everyone over age eighteen needs is a Healthcare Power of Attorney. This legally designates who you want to make medical decisions on your behalf if you become unable to do so. Despite the name, you don’t need an attorney to complete one. Without a Healthcare Power of Attorney, if you become incapacitated some states require you to go through a long, expensive legal guardianship procedure before any medical decisions can be made on your behalf – even if you’re married or have a loving family.

The next most common type of advance directive is a Do Not Resuscitate (DNR) order, which simply states that in the event of cardiac or respiratory arrest you wish no effort would be made to revive you.

Other forms of advance directives provide general guidance about the kinds of care or interventions you would (or wouldn’t) want, and under which circumstances. These can be as simple as a set of instructions you write up yourself, or as complicated as a long document you develop with the assistance of an attorney.

One easy-to-use and inexpensive form is the Five Wishes document, which walks you through a series of simple questions that clarify your healthcare wishes in certain circumstances. The Five Wishes document is available online for a small fee.

You can also have your healthcare wishes formalized as binding medical orders that take effect when the stated circumstances occur (e.g. if I suffer a massive stroke and go into multi-organ failure, I do not want to receive dialysis). These conditional orders can be created by you and your physician and are called Physician Orders for Life-Sustaining Treatment (POLST).

All patients with incurable cancer eventually reach the point where cancer treatments no longer have anything to offer. This may be because they’re no longer strong enough to tolerate the treatment, or because they no longer wish to continue them, or because we’ve simply run out of treatments to try. When we reach that point, beginning hospice care immediately can be very beneficial to patients and their loved ones.

Hospice care is a proactive form of preventative and supportive care that helps you adapt to your changing needs and symptoms. It’s usually provided at home. A specialized team of nurses, social workers, and volunteers will make regular visits to check on you. They’ll assess your symptoms, modify your medications if needed, and may even help you and your family modify your home environment to accommodate you. They’re also available at night or on the weekend if you’re having a problem.

For patients with incurable cancer, hospice care should begin immediately when cancer therapy is discontinued or opted against. Hospice care works by being proactive, so that means it can only be effective if it starts before you think you need it. It’s like auto insurance – you must have it in place before the accident occurs.

Formal eligibility requirements state that patients should have an approximate life expectancy of six months or less. These estimates sometimes pose a psychological barrier to patients and physicians, who either don’t want to restrict their hopes or worry if they outlive the estimate that they’ll get in trouble. But neither of these things are of real concern. There’s nothing about having a limited life expectancy that prevents you from being pleasantly surprised by living longer. And hospice agencies have a system in place for re-certifying eligibility at the end of six months if you’re still doing well.

Don’t let the average life expectancy requirements prevent you from getting the help you need or limit your hopes of being above average. Because we’ll be right in there hoping with you.

It usually takes two to three months to know for sure, though in some cases (particularly if the tumor or tumors can be felt easily) we may be able to tell after one month.

For some blood cancers (especially acute leukemia) we may be able to tell after only a few weeks.

You can bring loved ones with you to your appointments.

If they are feeling unwell, we recommend they stay home to minimize exposure for all our other patients.

Children under the age of twelve are not permitted in the infusion treatment area.

Medical providers directly involved in a patient’s care have access to patient specific medial information. The only other people who can view a patient’s medical information are those expressly granted permission in writing by the patient.

Hospice services provided in the home are completely covered by Medicare.

Tumor markers (like PSA, CA 125, CA 15-3, and CA 19-9) aren’t as reliable as most people think, and they can sometimes fluctuate widely for no apparent reason. Used inappropriately (either too often or for the wrong types of cancer situation) and tumor markers can create a lot of confusion, unnecessary testing, and unhelpful stress – while not improving your odds.

They can be useful periodically during treatment to assess how well treatment is working (though it usually requires other tests besides a tumor marker to be sure). And tumor markers are sometimes useful in prostate and ovarian cancer during surveillance (when treatment is complete, and people are monitored for possible relapse).

With chemotherapy, there is no room for error. The pharmacy personnel must be 100% correct and accuracy takes time. Your chemotherapy must be germ free and prepared in a biological safety cabinet using sterile supplies and special techniques to keep it sterile.

Your doctor needs to examine you and look at your lab values before the chemotherapy is ordered. Based on this examination, your doctor decides if you should receive a different dose of the same drug, a different drug or perhaps receive no treatment at all. Therefore, chemotherapy cannot be made until your doctor sees you.

Please remember, “timely” does not mean fast. Timely means no more time than is required to make sure that your chemotherapy is carefully made – that it is accurate, sterile and safe for you and the team.

Increasingly, it may.

Women with BRCA (breast cancer gene mutations) for years have used this information in surgical decision making (removing both breasts or removing one breast or part of one breast).

Very recently, genetic mutations now may alter medical decision-making for several cancers as there are now specific treatments for cancer that are directed at or targeted at a gene mutation(s). This includes but is not limited to BRCA (PARP inhibitor drugs) in breast, ovarian, pancreatic, and prostate cancers; as well as immunotherapy for microsatellite unstable gastrointestinal cancers with or without a genetic syndrome called lynch syndrome.

It’s the other way around–multiple studies have shown that early hospice enrollment helps patients live longer and better than those who waited. 

Cancer treatment often causes some degree of fatigue. Cancer can cause fatigue as well. The pattern and intensity depend on the type and schedule of your treatment.

CANCER FATIGUE: Sometimes the cancer itself can cause fatigue, depending on the type and extent of disease. If you have curable, early-stage cancer you may only notice fatigue during treatment. If you have a more advanced cancer, you may have moderate or even severe fatigue from the cancer itself. In that case, treatment for your cancer may improve fatigue considerably.

CHEMOTHERAPY: If you’re receiving a limited course of intensive chemotherapy, you may have a few days of mild-moderate fatigue after each dose, and it’ll usually improve (but not completely resolve) before the next dose. Since you’re not recovering completely after each dose, the fatigue usually gets more noticeable the longer treatment goes on. But you should recover your energy completely within several weeks or a few months after chemotherapy is finished.

In the first phase of treatment, you may even feel worse before you start to feel better. There are no safe or effective medications that can boost your energy during treatment. But some simple things you can do to maximize your stamina include:

• Drinking plenty of fluids
• Getting at least eight hours of sleep every night (and you may need more)
• Maintaining sufficient calorie intake, with good quality macronutrients in proper balance
• Exercising regularly, even if light activity is all you can manage

RADIATION: If you’re receiving a limited course of radiation treatment every day for weeks, you’ll probably notice progressive fatigue that starts a week or two into treatment, with fatigue peaking a week or two after treatment ends. You’ll probably regain your normal energy level several weeks or a few months after radiation ends.

TARGETED THERAPY: If you’re receiving ongoing treatment with lower-intensity agents (such as targeted molecular therapies or immune checkpoint inhibitors) you may have little to no fatigue. But sometimes fatigue appears later and builds steadily, so if you notice your energy level changing the longer the treatment goes on – talk to your provider.

You’re going to be operating with less energy than before, at least for a while. And you’re going to have to budget that energy accordingly. This may mean giving up certain activities or chores you no longer have the energy for.

Before proceeding with any treatment, we explain what side effects may occur. There will also be a plan in place to reduce the likelihood or degree of symptoms and we will manage any symptoms if they develop.

The single most common misconception of cancer treatments is the assumption cancer treatment equals nausea and vomiting. Fortunately, nausea and vomiting during cancer treatment are, for the most part, a thing of the past. Most cancer treatments don’t cause nausea anymore. But for the ones that do, we can almost always prevent nausea or vomiting with nausea-preventing medications. If you experience nausea at all during treatment, it will most likely be mild (like a minor hangover or morning sickness) and it will usually only last for a day or two after treatment.

Some forms of intensive chemotherapy can cause hair loss. We’ll tell you if this is something you should expect.

Most forms of radiation therapy don’t cause hair loss. Whole or partial brain radiation is an exception and may result in hair loss.

When you are referred for genetic counseling, the team in that department can help determine your insurance coverage for any needed testing.