Millennial Stage IV Colon Cancer Survivor Urges Earlier Screening

Millennial Stage IV Colon Cancer Survivor Urges Earlier Screening from Patient Empowerment Network on Vimeo.

 Stage IV colon cancer patient Ashley received her diagnosis at age 33. Watch as she shares her story starting with a routine physical, surgery and treatments that she endured, and lessons learned during her cancer journey.

Special thanks to our partner, Colorectal Cancer Alliance, for helping to make this vignette possible.


Transcript:

My name is Ashley, and I’m from West Virginia but currently reside in Nebraska. In February 2021, I was diagnosed with stage IV colon cancer at the age of 33.

I decided I wanted to join the Air National Guard and had to complete a physical examination. After visiting a hematologist/oncologist for dangerously low iron and hemoglobin levels, I went in for a routine physical a few months later. The physician’s assistant found a mass in my stomach area, and they sent me for a CT scan. The next morning, my husband Josh got the call that I missed. The CT scan had shown three different masses – and was likely cancer.

I was dumbfounded, shocked, and then I felt the tears rolling down my face. My doctor informed me, “You need surgery immediately, since the tumors are getting close to completely closing up your colon.” I also had a tumor on my liver.

I had surgery to remove the tumor before it closed my colon, but the surgeon couldn’t get to the tumor on my liver. After surgery, they told me the three most important things to do while there that would get me home sooner were eating with no issues, walking, and having a bowel movement.

Finally after two surgeries where my liver, gallbladder, one-quarter of my colon, part of my small intestines, appendix, two large tumors, and a lymph node that turned into a tumor was removed, as well as 12 rounds of chemo.

I received news in March 2022 that my cancer is back but will not be as aggressive as it was before. I am taking things one step at a time and one day at a time, trying to stay optimistic at each step.

When someone gets cancer – the “journey” is never over. The fear NEVER goes away. Even when you are declared to have no evidence of disease, there is a possibility cancer can come back. And if it does come back, the chance of fighting and winning again gets slimmer.

If you know someone that has cancer – be kind – just because they don’t look sick, doesn’t mean they aren’t having challenges. Just because their numbers and scans are good doesn’t mean they are in the clear for the rest of their life. Always, always – BE KIND!

Some of the things I have learned during my colon cancer journey are:

  • Get your colon cancer screenings on time. Or if you’re too young like me, listen closely to what your body tells you and get annual physicals.
  • Say yes to those who want to help by bringing food, checking in, or donating. We are amazed by the support we’ve received from friends, family, and complete strangers.
  • Fighting the cancer fight is much easier knowing how many people are on our side and how much love there is for us out there.
  • Advocate for yourself! Do research on your specific type of cancer and mutations. If you feel you are being told something that just doesn’t seem right, question it – push the bar until you can’t anymore! There are so many options out there when it comes to cancer and survival, you just need to find the right person that will take care of you!

These actions are key to staying on your path to empowerment.

Advice From a Young-Onset Colorectal Cancer Patient

Advice From a Young-Onset Colorectal Cancer Patient from Patient Empowerment Network on Vimeo.

Colorectal cancer patient Jessica was surprised but not shocked even after a diagnosis under the age of 40. Watch as she shares her journey from symptoms, diagnosis, her advice to others, and coping methods she’s found helpful for navigating her experience as a patient.

Special thanks to our partner, Colorectal Cancer Alliance, for helping to make this vignette possible.


Transcript

My name is Jessica, and I’m from Chicago, Illinois. Even though my doctors thought I was too young, I was diagnosed with colorectal cancer at age 39.

I’d been experiencing occasional rectal bleeding for about a year when I was finally referred for a colonoscopy.

While my doctors were convinced that I was too young for colorectal cancer, I was still worried because my grandmother died of the disease.

My doctor asked me to go in to get my colonoscopy results. My parents knew what that meant, so we went together. When the GI gave me the results, stage III rectal cancer, I felt so scared. I called my best friend, and I couldn’t even speak. We just cried together.

After I received my diagnosis, my doctor told me it’s very curable. I had a 2-inch mass in my rear. I had a CT scan to confirm the cancer had not spread followed by an MRI. And that’s when the whirlwind began.

I returned to a craft I hadn’t used much in recent years. To sort my thoughts, to update my friends and family, to document the most important year of my life, I started writing again. Beginning a blog was at once a coping mechanism for me and the best way I knew how to share this breathtaking news with friends and family I’d collected from across the country and over decades — and still conserve energy I would need to fight this fight.

Five years later, and I’m thriving.

I want to raise awareness about the rising incidence of colorectal cancer in the under-40 crowd because I was symptomatic and ignored before I was diagnosed. I know that not everyone is as lucky as me, especially young people who are often diagnosed at an even more advanced stage.

Some of the things I have learned during my colorectal cancer journey are:

  • Watch out for signs your body gives you
  • Don’t take “no” for an answer even if doctors think you’re too young for colorectal cancer.
  • Cases of young-onset colorectal cancer are increasing, and that’s why funding colorectal cancer research is so important.
  • Find something to do to help you cope. If you’re unsure whether it’s a healthy activity, ask your doctor or care team member who you trust.

These actions are key to staying on your path to empowerment.

Colon Cancer Patient First Office Visit Planner

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Is the COVID-19 Vaccine Safe and Effective for People With Colon Cancer?

Is the COVID-19 Vaccine Safe and Effective for People With Colon Cancer? from Patient Empowerment Network on Vimeo.

Dr. Smitha Krishnamurthi, a colon cancer specialist at Cleveland Clinic, provides vaccine safety information and discusses the effective immune response after COVID-19 vaccination in patients with colon cancer.

Dr. Smitha Krishnamurthi is a gastrointestinal medical oncologist at the Cleveland Clinic. Learn more about Dr. Krishnamurthi here.

See More From The Pro-Active Colon Cancer Patient Toolkit


Related Resources:

Should Your Family Members Be Screened for Colon Cancer?


Transcript:

Katherine Banwell:

Is the COVID vaccine safe and effective for people with colon cancer?

Dr. Krishnamurthi:

Yes. The COVID vaccine is safe. We have no data that patients with colorectal cancer or patients who are undergoing chemotherapy are at any increased risk of any side effects from the vaccine. People should be able to make a good immune response. Patients who are not able to make a good immune response are those who are getting very high-dose chemotherapy, like a bone marrow transplant or an organ transplant. But chemotherapy for colorectal cancer should not be problem. We basically advise – I ask all my patients to get the vaccine. They should just get it whenever they can. They don’t have to worry about timing in regards to their chemotherapy.

Katherine Banwell:

Okay. Dr. Krishnamurthi, thank you so much for joining us today.

Dr. Krishnamurthi:

Katherine, thank you so much for having me. It’s been such a pleasure.

Colon Cancer Treatment and Research News

Colon Cancer Treatment and Research News from Patient Empowerment Network on Vimeo.

What’s the latest colon cancer treatment and research news from the American Society of Clinical Oncology (ASCO) meeting? Dr. Smitha Krishnamurthi shares updates about research findings that were presented at the meeting along with exciting ongoing research in colon cancer.

Dr. Smitha Krishnamurthi is a gastrointestinal medical oncologist at the Cleveland Clinic. Learn more about Dr. Krishnamurthi here.

See More From The Pro-Active Colon Cancer Patient Toolkit


Related Resources:

Should Your Family Members Be Screened for Colon Cancer?


Transcript:

Should Your Family Members Be Screened for Colon Cancer?

Should Your Family Members Be Screened for Colon Cancer? from Patient Empowerment Network on Vimeo.

When should members of your family get colon cancer screening? Dr. Smitha Krishnamurthi from Cleveland Clinic shares screening guidelines for family members and discusses the necessity of genetic counseling.

Dr. Smitha Krishnamurthi is a gastrointestinal medical oncologist at the Cleveland Clinic. Learn more about Dr. Krishnamurthi here.

See More From The Pro-Active Colon Cancer Patient Toolkit


Related Resources:

How Is Colon Cancer Treated?


Transcript:

Katherine Banwell:

If you’ve been diagnosed with colon cancer, what is the guidance for screening family members, such as children and siblings?

Dr. Krishnamurthi:

Yes, this is an excellent question. We tell all our patients who have been diagnosed with colorectal cancer that their first-degree relatives should start screening by age 40, but also 10 years younger than the youngest affected member of the family. So, whichever is younger.

If my patient is 45, definitely that person needs to have genetic counseling because they’re young for colorectal cancer. Then we’d recommend at least start by age 35 for their children or siblings, even if no inherited cause is found.

Katherine Banwell:

Okay, all right.

How Speaking Up Can Positively Impact Your Colon Cancer Care

How Speaking Up Can Positively Impact Your Colon Cancer Care from Patient Empowerment Network on Vimeo.

Why should you advocate for the best care for you? Dr. Smitha Krishnamurthi, a colon cancer specialist from Cleveland Clinic, provides key advice to access better care, including the value of second opinions, and why you should feel empowered to speak up.

Dr. Smitha Krishnamurthi is a gastrointestinal medical oncologist at the Cleveland Clinic. Learn more about Dr. Krishnamurthi here.

See More From The Pro-Active Colon Cancer Patient Toolkit


Related Resources:

Should Your Family Members Be Screened for Colon Cancer?


Transcript:

Katherine Banwell:

What is your advice to patients who may feel like they’re hurting feelings by seeking a specialist or even a second opinion?

Dr. Krishnamurthi:

I would advise patients to not worry about that at all. I think that any one of us diagnosed with colorectal cancer would want a second opinion, would want to make sure that we’re getting an opinion from a high-volume cancer. Working here are Cleveland Clinic, I have the luxury of focusing on treatment of gastrointestinal cancers, whereas my colleagues who are in the community are treating patients with all different types of cancers. They have to be knowledgeable in all different types of cancers.

I think that’s actually much harder. I think that if your oncologist is not a specialist, the oncologist may actually appreciate having an opinion from a specialist, which helps them as well.

I think that if the doctor is going to be offended, then that’s probably not the right doctor to see. I think it’s important to just advocate for oneself and go for it.

Katherine Banwell:

That leads to my next question. What advice do you have about self-advocacy, about speaking up for yourself as a patient?

Dr. Krishnamurthi:

I think that’s very important to feel comfortable with your treatment team, with the doctor, nurse, nurse practitioner. If you have the luxury where you have choices where you live, seek out somebody who you can really connect with. I think it’s very important for the treating team to know what the patient is going through.

We have to know how the treatment is going so that we’re dosing properly, making adjustments. We want to know what our patient’s goals are so that we’re providing the best quality care.

I think it’s helpful to bring somebody to appointments. Or if you can’t bring somebody, you’ll call them on the phone. We’re doing that a lot now. People are joining by video call or even speaker phone. Many offices will have a speakerphone. You can ask to have somebody called on your behalf. Especially with COVID and the restricted visitation. Let’s get people on the phone. Somebody else to listen for you. For the patient, I mean, and to take notes. That really helps

Newly Diagnosed With Colon Cancer? Key Advice From an Expert

Newly Diagnosed With Colon Cancer? Key Advice From an Expert from Patient Empowerment Network on Vimeo.

Dr. Smitha Krishnamurthi, a colon cancer specialist from Cleveland Clinic, shares steps to take following diagnosis to ensure patients are receiving optimal care.

Dr. Smitha Krishnamurthi is a gastrointestinal medical oncologist at the Cleveland Clinic. Learn more about Dr. Krishnamurthi here.

See More From The Pro-Active Colon Cancer Patient Toolkit


Related Resources:

Your Colon Cancer Care Colon Cancer Toolkit: Office Visit Planner


Transcript:

Katherine Banwell:

What three key pieces of advice would you have for a patient who has just been diagnosed with colon cancer?

Dr. Krishnamurthi:

Okay. Yes, when somebody received a diagnosis of colon cancer, of course it’s a very serious diagnosis. I would always encourage patients to seek out expert care. Meaning see a person who specializes in treatment of colorectal cancer. So, a colorectal surgeon and a colorectal medical oncologist. I am a medical oncologist who specializes in treatment of patients with gastrointestinal cancer.

These sorts of specialists are typically found at high-volume cancer centers. Look for National Cancer Institute-designated comprehensive cancer centers. That designation implies very high quality of care and that there’s a lot of basic science research, clinical research, and what we call translational research. Like trying to bring lab discoveries to the bedside. I would encourage that for everybody. Of course, not everyone lives near such a center, but what we’ve learned through the pandemic is that we can use telemedicine far more than we ever did before.

We do a lot of virtual visits with patients who may live many hours away. I think it’s important, even if you have one visit for a second opinion, a treatment plan, that you could then receive that treatment with the local oncologist. I think that’s very helpful, and I would encourage everyone to seek out an expert opinion.

Also, I think it’s very important to seek out as much support, because this is a major diagnosis and a lot to go through. There is a lot of support out there that people may not be aware of besides, of course, family and friends. There are excellent patient advocacy groups and groups like your organization, trying to bring information to patients. Patients can ask their doctor or nurse about what’s local in terms of support groups, but there are also large internet presences by patient advocacy organizations. They are giving people high-quality, evidenced-based recommendations, advice.

People get to learn from other peers who have gone through treatment. I can’t name them all, but just for example, like the Colon Town and Colorectal Cancer Alliance. I believe just launching today is My Bluem, B-L-U-E-M.org.

I happen to be executive board member of that, so full disclosure. But it’s an organization created by colorectal cancer survivors for patients to come to one website to access information about all of these different organizations. There is a huge community out there for people who are diagnosed with colorectal cancer. The third piece of advice, I would just say when you’re looking for information, make sure it’s from a reliable source like these patient advocacy organizations. I tend to look myself for websites that end in .org, .gov, .edu, and also .net.

Our American Society of Clinical Oncologists organization is ASCO.net, where you can get great advice about cancers. Cancer.gov, cancer.org. Because the internet is full of suggestions which may not be based in good science.

It’s important to have a good source.

Katherine Banwell:

Good advice. Thank you for that.

What Should Be Considered When Choosing a Colon Cancer Treatment Approach?

What Should Be Considered When Choosing a Colon Cancer Treatment Approach? from Patient Empowerment Network on Vimeo.

Dr. Smitha Krishnamurthi, a colon cancer specialist from Cleveland Clinic, reviews considerations when choosing therapy, including staging and test results, as well as how clinical trials fit into treatment planning.

Dr. Smitha Krishnamurthi is a gastrointestinal medical oncologist at the Cleveland Clinic. Learn more about Dr. Krishnamurthi here.

See More From The Pro-Active Colon Cancer Patient Toolkit


Related Resources:

 

Newly Diagnosed With Colon Cancer? Key Advice From an Expert

Your Colon Cancer Care Colon Cancer Toolkit: Office Visit Planner

How Speaking Up Can Positively Impact Your Colon Cancer Care

Transcript:

Katherine Banwell:

What are the main factors you take into consideration before a treatment approach is decided on?

Dr. Krishnamurthi:

For treatment of anyone with colorectal cancer, most important, of course, is the stage because stage determines whether it’s surgery alone or do we need to use chemotherapy or radiation? Or if it’s metastatic, is it systemic treatment only? We also look at the biologic features of the cancer, which we’re learning more and more are very important.

For example, we want every patient to know their DNA mismatch repair status. This is basically, is the cancer missing a gene that repairs damage to DNA? Then if that’s true, then we say they are DNA mismatch repair deficient. Or another term is “high microsatellite instability.” Mismatch repair deficient or microsatellite instability high, or you might hear MSI high.

That’s very important that we test that on all patients with colorectal cancer because in the early stage setting, it’s important because this is a way to identify patients who may have Lynch syndrome, the most common type of inherited colorectal cancer.

And also it impairs their prognosis. We know these patients tend to have a better prognosis. For example, for stage 2, we wouldn’t even have a conversation about chemotherapy if we know the patient has abnormal DNA mismatch repair or is MSI high. Then for patients of metastatic disease, it’s very important to know this upfront because those patients do better with immunotherapy as their first treatment.

So, we want to see those results for each patient. Then for our patients with metastatic cancer, we also need to see some other genetic mutations such as RAS, KRAS and NRAS gene mutations, because that affects what treatments we use.

Also, BRAF gene mutations are very important because of the particular regiment we use for treatment of that type of cancer.

We’re looking at the extent of the disease, what are the molecular features, and then also, of very importantly, what can the patient tolerate? What are the patient’s goals? We have a discussion about side effects and help them make the best choice for themselves.

Katherine Banwell:

Where do clinical trials fit in?

Dr. Krishnamurthi:

That’s an excellent question because clinical trials actually could be appropriate at any step along this pathway.

There are clinical trials that may be looking at tests to diagnose cancer better or detect it earlier.

There are treatment trials where they may be looking at standard treatment versus something investigational or standard plus investigational. Those sorts of treatment trials may be very interesting as the initial treatment or they could be used when a person has gone through all the standard treatments. Then there’s nothing left to do but try investigational. There are also studies that are looking at supportive care – a new treatment for nausea, for example. There are studies that are looking at the biologic factors of the cancer. Maybe asking a person to donate blood or give permission to use their tumor sample. By participation in these studies, people who volunteer for that are being so generous with their time and their lives.

But that’s how the field advances, especially for treatment trials. This is a way to access cutting edge treatments because the study is being done because the drug looks promising.

I think it’s very important to ask about clinical trials from the beginning and every time there’s a decision point made in the treatment.

How Is Colon Cancer Treated?

How Is Colon Cancer Treated? from Patient Empowerment Network on Vimeo.

Dr. Smitha Krishnamurthi, a colon cancer specialist from Cleveland Clinic, shares an overview of colon cancer treatment and which approaches are used for each stage for optimal patient outcomes.

Dr. Smitha Krishnamurthi is a gastrointestinal medical oncologist at the Cleveland Clinic. Learn more about Dr. Krishnamurthi here.

See More From The Pro-Active Colon Cancer Patient Toolkit


Related Resources:


Transcript:

Katherine Banwell:

Can you provide us with an overview of how colon cancer is treated?

Dr. Krishnamurthi:

Yes. Colon cancer is treated based on the stage. It’s a disease that, for the vast majority of patients, is only cured with surgery.

If it can be surgically resected, that’s how this disease is cured. So, it’s very important that we do all we can to maximize early detection because it’s a highly curable cancer when it’s caught early. For early-stage colon cancer, patients are treated with surgery. So, stages 1, 2, and 3.

If it’s rectal cancer, we do some treatment before surgery. We give some chemotherapy and radiation for stages 2 and 3 beforehand to maximally shrink down the tumor to enable the surgeon to take the tumor out of the pelvis with normal tissue all around, like negative margins. Rectal cancer tends to be more complicated surgery because of its location in the pelvis.

So, it’s a little bit different from colon cancer in that we do that chemo radiation and chemotherapy up front. Whereas, for colon cancer, patients who have early-stage disease have surgery. And then, if it’s just stage 1, and this is true for rectal also, they’re done.

Excellent prognosis and go on to surveillance.

But if it’s a stage 2, then in colon cancer we have a discussion about chemotherapy afterwards because that could increase the cure rate for some patients. But for stage 3, we absolutely want to offer chemotherapy to our patients with colon cancer because of this very long, proven track record that chemotherapy can increase the cure rate for stage 3 patients, so when it’s gone to lymph nodes. Then if the disease is metastatic, meaning it’s spread to other distant organs like liver or lung, chemotherapy is the mainstay of treatment, generally speaking.

But there are subsets of patients who benefit from surgery. So, if the cancer is metastasized to just the liver or the lung or both organs, but in limited fashion, there is a track record for patients being cured with surgery.

We always are considering that when we have patients with metastatic disease. My first thought is, is this cancer potentially curable? Then we go from there. In some cases, it’s clear that it’s not curable; it’s widely metastatic. Then there’s no point in subjecting a person to surgery and we know that chemotherapy or drug therapy would be the mainstay of treatment.

What Are the Stages of Colon Cancer

What Are the Stages of Colon Cancer from Patient Empowerment Network on Vimeo.

Colon cancer specialist, Dr. Smitha Krishnamurthi of Cleveland Clinic, provides an overview of the stages of colon cancer and how these stages are determined.

Dr. Smitha Krishnamurthi is a gastrointestinal medical oncologist at the Cleveland Clinic. Learn more about Dr. Krishnamurthi here.

See More From The Pro-Active Colon Cancer Patient Toolkit


Related Resources:

How Is Colon Cancer Treated?


Transcript:

Katherine Banwell:

Let’s start with a basic question. What are the stages of colon cancer?

Dr. Krishnamurthi:

Colon cancer is categorized in four stages – stage 1, 2, 3, 4. This takes into account the tumor itself, how thick it is. These tumors start on the inside of the colon, like as a polyp. Then they can grow through the colon wall. The tumor thickness and has it spread to any of the lymph nodes? and has it spread further to a distant organ like liver or lungs?

That’s a tumor node metastasis. Considerations that go into the staging. Stage 1 colon cancer or colorectal cancer would be a very shallow tumor, maybe just in a polyp and hasn’t spread to any nodes or anywhere else. Stage 2 is when the tumor is thicker. It may be involving the full thickness of the colon or rectum but has not spread to any nearby lymph nodes. Stage 3 is when the cancer has spread to regional or nearby lymph nodes. Stage 4 is when it’s metastatic or it’s spread to another organ.

Katherine:

Okay. Thank you.