Healthcare team roundup

You’ll likely have several different healthcare professionals as part of your team. In this guide, we’ll help you understand the different specialists that may be taking care of you at different points along your cancer journey. We’ll explain what each person does and how you can access their services. So let’s get started!

Oncologist

An oncologist is a doctor who specializes in treating cancer. If you are taking chemotherapy, targeted therapies, or immunotherapy as part of your treatment plan, an oncologist will oversee that portion of the treatment. If you are diagnosed at a later stage, like stage III or IV, your oncologist will likely be the primary doctor overseeing your treatment.

Oncologists are very good at what they do, but it’s important to remember that they specialize in treating patients using drugs, like chemo, which kill cancer cells. They are not specialists in treating cancer with radiation or surgery. 

At most major cancer centers, your oncologist will participate in team meetings with other specialists to discuss complex cases. In the US, these teams are called “tumor boards.” In the UK, they are referred to as “multi-disciplinary teams” or “MDT” — and they may have different names in other countries. If you have a stage IV diagnosis, or a more complicated case, your oncologist may present your case at tumor board meetings at several points during your treatment. At these meetings, your case will be assessed by your oncologist, as well as the radiation oncology team and surgical team to see if you are a candidate for localized radiation treatments and/or surgery.

Throughout your treatment, it’s important to remember that different doctors specialize in different areas, and different doctors may have different approaches to treatment. If you disagree with the treatment plan given to you by your oncologist, it can never hurt to get a second opinion. If you want to know whether or not you are a surgical candidate, it is a good idea to get a second opinion directly from a surgeon. If you are interested in localized radiation treatments, it’s a good idea to go directly to a radiation oncologist for a second opinion.

Sometimes, patients have a primary oncologist who manages their regular treatment, while also consulting with another oncologist with particular expertise. Patients may get a second opinion from that oncologist and then meet with them and/or have their primary oncologist connect with them at significant points during care. This can be helpful especially if logistics like travel make receiving care from that second opinion oncologist challenging.  If you have a specific mutation or rare aspect to your cancer, it is important to make sure someone on your care team, either primary or secondary, has experience with rare aspects of your specific case. 

Radiation oncologist

When a doctor specializes in radiology, they can choose to focus on one of three different areas: therapeutic, interventional, or diagnostic. A therapeutic (radiation) oncologist is a radiologist who treats cancer by using radiation technology. These doctors treat cancer cells using techniques such as EBRT and SBRT. 

Radiologist

Like we said earlier, a doctor specializing in radiology can focus on one of three different areas: therapeutic, interventional, or diagnostic. If they choose to focus on diagnostic radiology, we often refer to them as just a radiologist. This doctor reads and interprets your scan results, which your team uses to help guide future treatment decisions. 

Surgical oncologist

If surgery is part of your treatment plan, you will see a surgical oncologist — a surgeon that specializes in treating cancer. They also perform certain types of biopsies to help diagnose cancer.

Depending on the type of surgery you are having, you may work wtih multiple surgeons with different specializations. For example, if you are undergoing a colon and liver resection, the entire surgery may be done with a GI surgeon and liver surgeon working together.

If your oncologist tells you that you are not a surgical candidate, it never hurts to get a second opinion directly from a surgeon. Oncologists are very good at treating cancer with chemotherapy, targeted therapies and immunotherapies, but if you want to discuss surgical options, it is usually best to request an opinion directly from a surgeon. 

Primary care physician

Your primary care physician (PCP) is your regular family doctor, who you see for check-ups and basic medical problems. It’s important to keep your PCP informed about what’s going on with your cancer treatment and involved with your care. The easiest way to do this is request that your cancer center share your medical records with your PCP. If this is not an option, you can request physical copies of your medical records and drop them off with your PCP.

You should continue to see your PCP for regular check-ups, screenings, and monitoring for any health conditions you had before being diagnosed with cancer.

Dietician

Chemotherapy, radiation and surgery (particularly bowel surgery) can affect the way your gut works. Many patients experience changes in appetite, taste and digestion. Some patients also experience weight loss or gain due to treatment. A dietician can be very helpful in navigating all these changes. They’re a great resource for tips, tricks, and new recipes to help you cope.

Newly diagnosed cancer patients are often faced with lots of well-meaning diet and lifestyle advice from family and friends. A dietician can help you weed through the immense amount of information out there about cancer and to help you figure out what’s best for your body.

Most cancer centers will have dieticians on staff. If you feel like talking to one would be helpful for you, it should be as simple as asking your oncologist for a referral. Many dieticians offer telehealth options — and some will even come meet with you during your chemo infusions, so you don’t have to worry about coming in for an extra appointment.

Integrative doctor

An integrative doctor is a physician that looks at the ways diet and lifestyle modifications can help improve wellbeing. Nowadays, many major cancer centers have an integrative doctor on staff. They can offer exercise recommendations, tips for improving sleep, or suggestions for how to maintain a healthy diet and weight while going through treatment.

Some integrative doctors may also recommend specific diets, vitamins or supplements.

Remember that it is important to consult with your oncologist before starting any vitamins or supplements or before making any radical changes to your diet and lifestyle.

Palliative care specialist

Palliative care specialists are doctors and nurses who work to help patients manage symptoms and side effects. Palliative care is not the same as hospice care, and may be involved at any point during your treatment. They are used to dealing with complex cases and symptoms, so they may be able to suggest medications and other remedies your oncologist or PCP may not have thought of. Many people from COLONTOWN Community have said that their palliative care teams have helped improve their quality of life immensely. If you think a palliative care specialist would benefit you, ask your oncologist for a referral.

Watch this video to learn more about palliative care.

Social worker

Most major cancer centers have a social worker on staff. Their job is to make sure that patients have all the resources they need to stay safe and have the best quality of life possible. They have a good knowledge of the resources available at your cancer center, and can also recommend resources in the local community.

If you are having trouble paying for treatments, a socal worker can help you access your cancer center’s financial assistance program and recommend local organizations that may be able to help. If you are having family problems or do not feel safe at home, your social worker can recommend services to support you. If you are struggling with your emotions, your social worker can refer you to mental health services.

Overall, if you have been diagnosed with CRC and have any non-medical issues that are affecting your quality of life, it’s a good idea to request an appointment with your cancer center’s social worker.

Mental health professional

It doesn’t need to be said that receiving a cancer diagnosis is extremely stressful, and treatments can be difficult — both mentally and physically. While some patients can get support from family and friends, many patients find it helpful to work with a mental health professional, such as a psychologist, psychiatrist, therapist or counselor.

If you are struggling to cope, do not feel shy about reaching out for help. Ask your oncologist, PCP, or social worker at your cancer center what resources are available to you. They should be able to refer you to a mental health professional at your cancer center, or point you in the direction of support groups and organizations in your local community.

If you were diagnosed with a mental health issue prior to being diagnosed with cancer — or diagnosed during your treatment — it’s important to have a mental health professional as an integral part of your care team.

Managing both a mental health and cancer diagnosis?

Join us in one of our COLONTOWN Facebook groups:

  • Our Safehaven group is for patients who have a specific mental health diagnosis and have also been diagnosed with CRC.

Want to join? Fill out the registration form here.

Genetic counselor

If your oncologist recommends germline testing, you will meet with a genetic counselor. Germline testing is a blood test that checks for heritable gene mutations present in all cells of your body — including the tumor.

This is used to determine if you have gene variations that might put you and your immediate family members at greater risk of getting cancer. Once the results are available, you will have an appointment with a genetic counselor to help you interpret the results.

These types of tests are usually recommended for patients with a family history of cancer or patients who are diagnosed under 45 years of age. If you have any questions about whether germline testing is appropriate for your situation, ask your oncologist. If you want to learn more, check out our section on germline testing.

Want to learn more? Want to hear about other people’s experiences with second opinions? Need a recommendation for a top surgeon?

Join us in Colontown, where we discuss the answers to all of these questions and more! Fill out the registration form here.

COLONTOWN University has so much more to offer, from DocTalk videos with CRC experts to easy-to-understand biomarker test breakdowns. We’re here for you! See our list of Learning Centers here.

Last updated: May 30, 2023

Welcome to CRC101!

First week survival guide

Have you just been diagnosed with colorectal cancer (CRC)? It might feel overwhelming, but remember to take things just one step at a time.

Here are some essential questions to consider — and important things to talk to your healthcare team about.

What tests have I had?

Knowing which tests you’ve had so far — and what the results show — can help you get a handle on what you’re dealing with. Sign up for your cancer center’s patient portal and get access to your medical records. Ask your oncologist (a doctor that specializes in cancer) for copies of your tests.

Who have I spoken with so far? What are their roles? Do I have their names?

Get to know your healthcare team. You’ll likely be spending a lot of time with them, and they are there to support you. Other than your oncologist, your team can include a surgeon and a radiation oncologist. At specialized cancer centers your team may include a dietitian, genetic counselor, integrative doctor, counselor/therapist, social worker, palliative care expert and more! Some team members work on creating treatment plans, others help you manage side effects. Knowing who to go to when you have questions can be very helpful.

Take a look at our Healthcare Team Roundup section here.

What has my doctor said about treatment? How soon might it be scheduled?

Depending on how extensive your cancer is, treatment will look different for everyone. Treatment can include surgery, radiation, chemotherapy, or other medications. Speak to your healthcare team to find out what your treatment timeline looks like — and how quickly treatments might be coming up.

How do I put together a care team that works for me?

Not all oncologists specialize in colorectal cancer — and it’s possible that your oncologist is an expert in another cancer. Ask your oncologist how many of their patients are CRC patients, and what they do to keep up with new CRC research. Feel free to research online to find an oncologist that works for you. Ask for recommendations from people you know. Getting a new oncologist is as easy as calling and making an appointment. If they don’t have space, keep looking.

Do I want to know the prognosis — and if so, what does my doctor say about it?

For some people, knowing the outlook of their disease helps put things in perspective. For others, it can be too stressful. Communicate with your doctor about what you’d like to know about your cancer — and be clear about what you’d rather not discuss. 

Want to learn more about how to communicate with your healthcare team?

Check out this guide from the National Cancer Institute.

If you do want to know your prognosis, remember that they are often based on statistics. These statistics can tell you how someone with disease characteristics similar to yours may behave, but it’s good to remember that no two cases are identical. So while statistics give you some broad information about outcomes, their applicability may vary case-by-case. If you want to hear stories of hope — and talk with people going through the same things — come join us in COLONTOWN.

Have I gotten a second opinion?

Getting a second opinion can give you a new perspective on your disease, or catch things that your healthcare team didn’t spot. Although there are standardized guidelines for cancer care, your oncologist’s approach to treatment can vary depending on where they studied and the type of institution they work at (community clinic vs academic institution vs specialized cancer center). It’s a good idea to get a second opinion from an NCI-designated cancer center (cancer centers that are recognized as leaders in laboratory and clinical research) to make sure the treatment course that has been suggested is best suited to you. 

Looking for an NCI designated cancer center?

Click here to find one near you.

How do I get a hold of my doctor after hours? Who should I call?

Even after you leave the cancer center, your care team is there for you. Ask your doctor how to reach them after hours.

In what circumstances should I call my doctor? What’s an important enough issue?

Speak to your doctor about what kind of treatment side effects are common, and what might be concerning. Ask them when you should call them. If you’re feeling short of breath, dizzy and/or disoriented, please seek out emergency care immediately. If you’re unsure, visit the emergency room.

Do I need help with day-to-day tasks?

Your daily responsibilities might seem overwhelming right now. Reach out to your support group — your family, friends and loved ones. Do you need help cooking dinner? Do you need help with childcare while getting treatment? Do you have a ride to your appointments? Those around you likely want to help out, don’t be afraid to lean on them.

How can I handle these new emotions?

You’re likely feeling a lot of different emotions, and that’s okay. Many people tell cancer patients to “stay positive,” but cancer is something that is hard to stay positive about! Don’t keep everything inside. Reach out to your family and friends. Inquire about emotional support groups your hospital or cancer center has available. Reach out to nonprofit organizations that offer help. Speak to a medical professional like a psychologist or psychiatrist with experience helping cancer patients. Connect with COLONTOWN, where there are over 120 Facebook groups filled with people just like you.

How do I deal with all this new attention? How do I let people know how to help me?

You might be unsure how to tell people about this new change in your life. Some people want to keep the news quite private, only sharing with their immediate family. Others want to share with everyone on social media, so they don’t have to keep answering the same questions over and over. Other people take a middle of the road path, sending an email out to only the people who need to know. 

Do what feels best for you. Don’t feel obligated to reply to everyone that reaches out. Know that they are doing their best to support you, even if it is frustrating to hear “I’m sorry” a hundred times. Offering concrete ways to help (gift cards for food delivery, specific chores you need help with, or even just a simple afternoon cup of tea to catch up) will take some of the pressure off their shoulders — and help you avoid having a dozen lasagnas in the fridge!

How do I tell my kids?

Knowing how or when to tell your children can be a difficult decision. You know them best. Think about age appropriate metaphors, and do your best to keep the conversation in the present. Explain how these changes will affect them. If you have treatment on Tuesdays, and can’t take your kids to dance class anymore, let them know. Even if it’s difficult, try to answer their questions honestly. The social worker at your cancer center may be able to provide some guidance. 

Want to learn more about discussing cancer with children?

This guide from Cancer Research UK has some good tips for talking with kids.

Is my cancer heritable? 

The great majority (around 95%) of colorectal cancers are linked to spontaneous mutations. A small percentage (around 5%) of CRC stems from inherited germline (heritable) mutations. Genetic testing can determine if you have a heritable mutation. If your doctor suspects your cancer may be heritable, they will order testing for you. If you were diagnosed before age 45, and your doctor hasn’t ordered germline testing, it’s a good idea to ask for it.  

If you want to learn more, check out our section on cancer and your genes.

How can I pay for all this?

Make sure that you understand what your insurance covers, and what your deductible is. Call your insurance company to discuss exactly what they can pay for. Reach out to your cancer center. Many centers have a social worker who can help you navigate the financial cost. If your doctor orders a test that is not covered by your insurance, many testing companies have financial assistance programs as well. Nonprofit organizations — such as COLONTOWN’s Second Opinion Project — can help you with unexpected costs related to your treatment.

How do I manage both work and cancer treatment?

You are not required to disclose your cancer diagnosis to your workplace, but if you feel comfortable, you can speak to your HR department. It’s possible that your workplace offers short-term or long-term disability options. It might even be possible to work part-time while you’re in treatment.

Under the United States Equal Employment Opportunities Commission (EEOC), cancer is not always considered a disability. However, depending on the ways your cancer has affected your everyday life, the Americans with Disabilities Act (ADA) can help protect you. Examples of reasonable accommodations include changing work schedules and making the workplace easier to access if you have mobility issues.

How can I be my own advocate?

Your disease is your own, and you should manage it as you feel is best for you. Sign up for your cancer center’s medical online portal, and get access to your records. Get copies of every scan and blood test you get; this will make it easier to keep track of your disease and get a second opinion. If you’re confused about something, speak up and ask questions. If you disagree with something, let your healthcare team know. You are in charge.

It may feel daunting at first, and you might not know where to begin. Join support communities like COLONTOWN to see how others are advocating for themselves. Over time, you may feel more comfortable with taking an active role in your treatment.

COLONTOWN University has so much more to offer, from DocTalk videos with CRC experts to easy-to-understand biomarker test breakdowns. We’re here for you! See our list of Learning Centers here.

Last updated: May 18, 2022

What do I really need to know?

There’s a ton of info that you could learn about your tumor — but not all of this information is relevant when it comes to figuring out which treatments are right for you. 

So let’s just focus on things that affect your treatment plan. We’ll try to stay away from the really sciency stuff for now, but if you’re interested, we’ll go into the nitty gritty details later on. If you want to know what a term means, check out the glossary!

What do we mean when we talk about treatment?

After you are diagnosed with colorectal cancer (CRC), your doctor will want to discuss how to treat it. This can include surgery, radiation, chemotherapy drugs, or other types of medication. 

Depending on the type of CRC you have, treatments you get may vary. In the United States, oncologists make treatment decisions based on their experience and knowledge, as well as the National Comprehensive Cancer Network (NCCN) guidelines. If you want to know more, the NCCN patient guidelines for colon cancer can be found here, and the NCCN patient guidelines for rectal cancer can be found here. Don’t feel like you need to read or understand these documents right now!

For people with early stage colon cancer (stages I, II & III), treatment frequently includes resection (removing the tumor surgically) followed by a minimum of 3 months of chemotherapy (if the tumor has characteristics that indicate that chemotherapy is necessary to get to a cure). Early stage rectal cancer treatment frequently includes radiation too. The information in this section is especially important for those just diagnosed with stage IV cancer, as treatment plans may be less straightforward.

You might have the opportunity to participate in a clinical trial. In clinical trials, researchers can use experimental medications to try and treat your cancer. Some clinical trials test a class of drugs called targeted therapies — meaning people with tumors that have specific mutations may benefit from these treatments. Knowing whether you are in one of these groups can affect your treatment plan. 

The very first type of treatment regimen you will undergo is called a “first-line treatment.” There may be very promising first-line clinical trials available for newly diagnosed patients who haven’t yet started chemotherapy. So it’s always good for patients to find out if they qualify for these clinical trials early on.

That’s why it’s so important to know if you fall into one of the groups we’re going to talk about next!

So let's discuss treatment

If you’ve just been diagnosed, there are some things you need to consider. It’s possible to be tested for many different cancer mutations, but not all of them are actionable. Here’s what you need to know.

Just a note, we’ll be going through this super quickly, so you get the essential info you need! Don’t worry if you don’t know what all the words mean, remember that everything will be explained in detail later on.

Is my tumor MSS or MSI-H?

According to the NCCN guidelines, all newly diagnosed CRC patients should get their tumors tested for MSS/MSI-H status. 

Patients with tumors that have mutations in any of the four mismatch repair proteins (MLH1, MSH2, PMS2, or MSH6) are said to have MSI-H colorectal cancer. They may be eligible to receive immunotherapy. If your tumor is MSI-H, then it is recommended that you get tested for an inherited cancer condition called Lynch Syndrome.

There are first-line clinical trials available for patients with MSI-H tumors. Speak to your healthcare team about first-line clinical trials that you may qualify for. 

If you want to learn more about MSS/MSI-H status, click here.

How do I get my tumor tested for MSS/MSI-H status?

Mismatch repair status testing to know if the tumor is MSS (micro satellite stable) or MSI (microsatellite instable) is usually done by immunohistochemistry (IHC). This can also be determined by tests such as polymerase chain reaction (PCR) or next-generation sequencing (NGS) tests. Your oncologist will order one of these tests on your tumor or biopsy tissue to find out if it is MSS or MSI-H.

What is the RAS status of my tumor?

All patients with metastatic colorectal cancer (colorectal cancer that has spread from the original tumor site) should have their tumor tested for RAS mutations. Patients with any known KRAS or NRAS mutation should not receive epidermal growth factor receptor (EGFR) inhibitors, such as cetuximab (Erbitux) or panitumumab (Vectibix). In those cases, patients are commonly offered Avastin (bevacizumab), which is an angiogenesis inhibitor. 

There are also clinical trials available for patients with RAS mutations. Speak to your healthcare team about clinical trials that you may qualify for. 

How do I get my tumor tested for RAS mutations?

RAS testing can be done on tumor tissue using a next-generation sequencing (NGS) panel or by a polymerase chain reaction (PCR) test. Your oncologist may order RAS testing when you are diagnosed.

 

What is the BRAF status of my tumor?

According to NCCN guidelines, all patients with metastatic colorectal cancer should have their tumor tested for BRAF mutations. The most common BRAF mutation is V600E. Patients who have tumors with this mutation should not receive epidermal growth factor (EGFR) inhibitors, such as cetuximab (Erbitux) or panitumumab (Vectibix), unless given with a BRAF inhibitor.

There are clinical trials in the first-line setting available for patients whose tumors have a BRAF mutation. It is very important that you speak to your healthcare team about first-line clinical trials you may qualify for.

Ask your oncologist about their experience with treating these mutations, as they are rare and it is important to have someone on your team who has experience treating them. You can work with your oncologist to bring specific expertise into your care. Some suggestions on this can be found in the Healthcare Team Roundup.  

How do I get my tumor tested for BRAF mutations?

Your tumor can be tested for BRAF mutations through a next-generation sequencing (NGS) panel, or an immunohistochemistry (IHC) test. Your oncologist may order BRAF testing when you are diagnosed.

What is the HER2/ERBB2 status of my tumor?

According to NCCN guidelines, all patients with metastatic colorectal cancer should be tested for HER2/ERBB2 mutations and amplifications. 

If your tumor has an HER2/ERBB2 amplification, there may be first-line clinical trials available. Speak to your healthcare team about clinical trials you may qualify for.

Ask your oncologist about their experience with treating these mutations, as they are rare and it is important to have someone on your team who has experience treating them. You can work with your oncologist to bring specific expertise into your care. Some suggestions on this can be found in the Healthcare Team Roundup.  

How do I get my tumor tested for HER2/ERBB2 amplification?

HER2/ERBB2 testing of your tumor can be done through a next-generation sequencing (NGS) panel, immunohistochemistry (IHC), or fluorescence in situ hybridization (FISH). Your oncologist may order HER2/ERBB2 testing for your tumor when you are diagnosed, if not, it’s good to ask about.

Ready to learn more?

Now we’ve gone over the key details that can affect your first-line treatment, let’s start from the very beginning.

Learning Center: CRC101

Last updated: May 30, 2023