“This is all so new to us,” a family member shared with me. “What should we be doing? Should we get a second opinion?”
There is a big uptick in colon cancer in the US right now, with rates rising especially quickly among younger adults ages 50-54.
I recently was approached for advocacy by two relatively young patients with metastatic colon cancer. In both cases, the symptoms crept up insidiously and by the time help was sought, both diagnosis and treatment were delayed and the disease was advanced—metastatic, stage IV colon cancer.
Both patients and their families were desperate for emotional support and for help understanding what medical options were available.
“We just want our old life back–the one we had before we went into the hospital,” the families said.
My heart went out to them. I didn’t have the power to do that–so much had changed for them, some of it irrevocably. But I could gather resources to help them face and understand the next steps in the journey–and advocate for them through that process. I could restore some sense of equanimity.
My hope is that others may benefit from the following resources and ideas that they found so helpful:
1/ Sources of emotional support;
2/ Ideas around improving nutrition;
3/ What treatment options are there? What side effects might you expect from the commonly prescribed chemo regimens; what might a doctor do if diagnosed with metastatic colon cancer; and might what the second opinion process look like–and where should you to start to look for that?
4/ Palliative care--always ask for this! Many of the patients I have advocated for who are now in complete remission benefited from this SO much when they needed extra support. Better to sign up sooner than later. We get so little support from our medical systems, and this one is built in. Your doctor will not necessarily be the first to suggest this–so you or a family member may need to bring it up–because you need a referral for this service.
OK–adding more detail on each of those areas:
1/ Emotional Support:
Spiritual support and guidance: these may be helpful to include in your treatment going forward: mindfulness, massage, biofeedback, yoga.
Support groups and individual support:
The Colorectal Cancer Alliance Buddy Program matches a patient with colorectal cancer with volunteers who have had a similar diagnosis. Call 877-422-2030 or register online for a “Buddy”: www.ccalliance.org/patient-family-support/buddy-program.
CancerCare offers online support groups using a password-protected message board format and are led by professional oncology social workers who offer support and guidance. Groups are held for 15 weeks at a time, and group members must register to join. After completing the registration process members can participate by posting in the groups 24 hours a day, 7 days a week. Register to join at cancercare.org/support_groups
Imerman Angels offers free one-on-one cancer support. Through their unique matching process, Imerman Angels partners individuals seeking cancer support with a “Mentor Angel” so that no one has to face cancer alone. Call 1-866 – IMERMAN (463-7626). To request support go to their website: imermanangels.org.
Younger patient resources:
Stupid Cancer offers a lifeline to the adolescent and young adult cancer community by connecting you to age-appropriate resources and peers who get it. Digital meet-ups are offered regularly to connect you to your local community and peers who understand what you’re going through. Meet-ups are for all those affected by adolescent and young adult cancer, including patients, survivors, and caregivers. Call 1-877-735-4673 or visit stupidcancer.org.
Elephants and Tea – “Cancer is the elephant in the room and tea is the relief conversation provides.” Provides adolescent and young adults with digital resources, hangouts, other information to keep you informed, and online support groups. Visit their website: elephantsandtea.com.
Families and caregivers have unique needs for support in order to effectively cope with the stresses and challenges of caring for their loved ones with colon cancer. The following groups offer support to patients and caregivers and families in the form of peer support:
Cancer Hope Network provides free one-on-one confidential emotional peer support to patients, family, or friends impacted by cancer, from diagnosis through survivorship. Support is provided by trained volunteers who faced similar experiences and are matched to those needing emotional support services. Cancer Hope Network currently has over 400 active volunteers who speak 15 languages and range in age from 24-94. Support is offered Monday – Friday 8:30am – 5:30pm. Call 877-467-3638 to speak to a trained volunteer, or register online at cancerhopenetwork.org/get-support/get-matched/with-a-cancer-survivor.html
Cancer Support Community offers free support and counseling for cancer patients or their loved ones by phone and online. They believe that community is stronger than cancer and are a relentless ally for anyone who strives to manage the realities of this disruptive disease so that no one faces cancer alone. Their Cancer Support Helpline is available Monday – Friday 9am-9pm and Saturday-Sunday 9am-5pm at 1-888-793-9355. Visit their website for more details: cancersupportcommunity.org
Cactus Cancer Society is a nonprofit organization providing online wellness support programs and resources, lifestyle encouragement, and a peer support community for young adult cancer patients, survivors, and caregivers. Programs at Lacuna Loft are specifically designed for young adult cancer patients, survivors, and caregivers. Their programs are specific to ages 18-45. For upcoming programs visit cactuscancersociety.org
2/ Nutrition
Surgery for metastatic colon cancer can sometimes include extensive removal of parts of the gastrointestinal tract, which has important implications for adequate nutrition and absorption of essential vitamins. Ask your doctor for a referral to a nutritionist to make sure you are getting the right food and supplements.
Here is an excerpt from a helpful resource on nutrition: Eating Well: Beyond Conventional Cancer therapies:
“A small study of colorectal cancer patients reports that most–more than ⅔–received no information about nutrition from their care team.
If your team doesn’t provide guidance, ask for a nutritionist who specializes in counseling cancer patients who can offer specific guidance about what to eat to improve chemo side effects and to improve nutrition, which may be compromised due to surgeries or chemo.”
3/ Treatment options; chemo side effects; and the second opinion process
Treatment options
General facts about chemo/immunotherapy for metastatic colon cancer:
An oncologist colleague shared with me, “This is the mainstay of therapy. It will get everything you can see and everything you can’t. The choices are usually: FOLFOX or FOLFIRI. Some doctors prefer to use Folfox, to start slowly and build up (what doctors choose really depends on where they trained and what they have experience with). They will likely administer either 3 drug (aggressive) or 2 drug (less aggressive) regimen every other week for 2-3 months. Then they will get scans and re-evaluate.
They will know whether or not the tumor is responding by your symptoms and how you are feeling. They usually give this therapy over 6 months–12 cycles is generally the most they would do. If you get a great response at 4 months, they sometimes hold back and then use that regimen later.
If surgery is not an option, the plan is to keep on treating indefinitely as long as you are doing OK and you are tolerating it. They may start with 3 drugs, then cut back to 2, then cut back to one.
You can plan to always be on something going forward. Otherwise the cancer just comes back. But you can take a week or two off (if you have a trip or wedding to go to). The doctors will do scans periodically to see if the therapy is working; and they will check in frequently to see if you are tolerating the regimen.”
Chemotherapy side effects:
Another oncologist shared with me, “Chemo isn’t designed to drag you down but it often does.
If you get chemo today: you would feel fine today and tomorrow; but you will feel crappy in three days. When the infusion stops–you will feel bad. You will feel like sleeping and doing nothing. And then you would start to feel better. People describe it as their “chemo week and non chemo week.”
You can expect 4-5 days of cruddy– then you will get back up again. What does “back up” look like? Back up means pretty much back to normal. But over time, you will get worn out. For example: if you are used to heavy gardening from 8-5, you will work in the garden more like 8-10 and 1-3.”
What does Stage mean: really just means where the cancer started and where is it now. So if it spreads outside of where it started–if outside of colon– that is stage 4.
What is the meaning of stages? Some doctors think this is the more important question: what does the patient look like and what can we do.They don’t focus on stage all that much. There are just so many important variables.
It will be important to get molecular profiling; depending on results — clinical trials can be considered at some point along the therapeutic path.
Second opinions
Most major medical centers offer second opinions (on the east coast, that could include Dana Farber, Johns Hopkins, and many others); typically, those centers will require the pathology report (and often the original slides), any scans, and your doctor’s clinical notes, which you will need to pull together and send to the medical center you choose to seek a second opinion at.
Here are a couple of options for east coasters but there are many more:
In person: Johns Hopkins: request an appointment: phone 410.955.8964
Dana Farber in Boston (and other centers, too, no doubt) also offers a virtual second opinion. Adults: 877-442-3324; Pediatric: 888-733-4662.
Make sure to find out beforehand whether or not the second opinion is covered by your insurance.
What would a doctor do if diagnosed with metastatic colon cancer?
This is excerpted from an interview with a colon cancer specialist at Emory University with Dr. George Lundberg (no relation):
Emory’s Dr. Christina Wu shares: “Colorectal cancer is the third most common cancer in the U.S., and one of the leading causes of cancer deaths. However, every patient with metastatic colon cancer to the liver is treated individually because there are various systemic and liver-directed treatment options. If I were diagnosed with colon cancer and liver metastasis, I would want a multi-pronged approach to include the following:
- Next-generation sequencing.
- Multi-disciplinary tumor board: I would want high-quality imaging and experts from medical oncology, surgical oncology, radiation oncology, gastroenterology, radiology, and interventional radiology reviewing my case in a tumor board. It would be meaningful to know upfront whether the liver metastasis was surgically resectable, because I may opt to receive systemic chemotherapy followed by surgical resection. If I required conversion therapy, I would consider triplet chemotherapy (FOLFOXIRI) to get more of a response so that I could get to surgery. However, if I had clearly unresectable disease, I would choose doublet chemotherapy such as FOLFOX or FOLFIRI with a biologic agent to improve my quality of life. With unresectable disease, I could also consider radiation, Y90 treatment, or ablation to the liver tumors, should I have good control or surgical resection of the extrahepatic disease.
- Genetic counseling: There are hereditary syndromes that lead to colon cancer development, including Lynch syndrome, familial adenomatous polyposis, Peutz-Jeghers syndrome, and juvenile polyposis. All patients with a new diagnosis of colorectal cancer are recommended to have universal screening for Lynch syndrome, and identifying a hereditary syndrome may help family members with early detection.
- Palliative care: This is such an important team that treats the symptoms patients have from their cancer as well their cancer treatment. They also provide great support to patients and their caregivers in navigating their way through their cancer diagnosis.
- Clinical trials: I personally would want to be part of clinical trials that could help move new drugs forward for colorectal cancer patients, and thus I would consider this an essential team in my cancer care.
Final thoughts: As I reflect on all the teamwork and different moving pieces that have to come together for one cancer patient, I am certainly grateful for all the multi-disciplinary clinical staff and physicians who are caring for cancer patients.”
Dr. Wu can be reached at Christina.wu@emoryhealthcare.org.
4/ Palliative Care is such a fantastic resource for patients. It offers so many sources of support: help with adequately addressing pain, nutrition, psychiatric issues, caregiver and family issues. It’s a resource that many families don’t think of but value so much. If you are treated at a cancer center, there will be a palliative care group associated with it. Again–your doctor will not necessarily be the first to suggest this–so you or a family member may need to bring it up–because you need a referral for this service.
More resources–information for for patients and cancer networks
- UpToDate (a medical encyclopedia of sorts for patients and physicians) has a good summary on metastatic colon cancer; it is written for patients–very thorough, though! But includes a lot on chemo side effects, and clearly lays out options for treatment: Patient education: Colorectal cancer treatment; metastatic cancer (Beyond the Basics).
- Other resources: National Comprehensive Cancer Network can identify the evidenced based clinical guidelines for specific types of cancer:
- Clinicaltrials.gov
- Cancer connect is good; they can do a free panel review of your case by a panel of doctors;
- Beyond Conventional Cancer Care Therapies at Commonweal . Tons of info here. But I think–like UpToDate–a little TMI 🙂
Not helpful: I have heard oncologists say that they do NOT recommend Facebook–too much re-education all the time and information that isn’t applicable to your case.
In sum: This is the kind of information I would want if faced with such a diagnosis–information that I found challenging to find it all in one place. If you found this helpful, or if you have a question, please let me know.
Medical Disclaimer: The suggestions given here are not intended as a substitute for the medical advice of your physician. The reader should regularly consult a physician in matters relating to his/her health and particularly with respect to any symptoms that may require diagnosis or medical attention.
Photo credit: Anders Jildén, unsplash.com
