In 2005, Christine Niemi, was diagnosed at age 28 with stage IV colorectal cancer that had spread to the liver. Eighteen months later, she joined C3: Colorectal Cancer Coalition at its Call-on Congress grassroots training and lobby day and became an active and tenacious advocate with the organization. Last week, she attended the Stand Up to Cancer broadcast as a representative of C3. We asked her to share her experience with others in the cancer fight.
Last Friday, September 5, I had the amazing opportunity to represent C3 at the Stand Up to Cancer live broadcast in Los Angeles, CA. I was joined by C3 board member Andy Giusti and advocates Florence Kurttila and Sean Twersky (Sean’s mom, Lisa Dubow, was one of C3’s founders and is the namesake of the organization’s Lisa Fund, which raises money for late stage colorectal cancer research). Participating in the event was the experience of a lifetime.
Early in the afternoon we attended a luncheon for the advocates representing 75 different cancer advocacy organizations from across the United States. There was a great sense of excitement – and the camaraderie between the groups was inspirational. It was exciting for me to meet other young adult cancer survivors. Speeches were made to acknowledge the people who worked so hard to organize the event as well as to illustrate how far we’ve come in the war against cancer and how much more there is to do.
After lunch, we were escorted to the Kodak Theater, where the broadcast would be taking place (for movie buffs out there, you know the Kodak Theater as the site of the annual Academy Awards). We immediately began celebrity spotting. I even watched colorectal cancer survivor Sharon Osborne get her make-up done. If I had better aim, I would have tossed her a C3 awareness pin!
All of the C3 advocates were wearing Cover Your Butt t-shirts – and they were a big hit. I was even stopped after the show by an oncologist at the University of California, Los Angeles whose research focuses on colorectal cancer, wanting to know which group we represented.
As those of you who watched the broadcast know, it was educational, touching and funny (and if you missed it, the video podcast can be downloaded free from iTunes). The musical performances were incredible. I was in awe listening to Josh Grobin and Michelle Mancini sing “Imagine.” I cried watching the rehearsal, the live taping, and the recorded broadcast at home. The performance of “Just Stand Up” which was broadcast from New York inspired me so much that I went home and bought the single.
We all had a great time. I was happy to see that the C3 advocates were visible during the broadcast. Our Cover Your Butt shirts really stood out. It was a very memorable day and I am so grateful that I had the opportunity to participate.
September 08, 2008 at 5:53 pm, Nancy said:
I loved seeing you guys there, and am glad you had a good time. I felt pretty old – didn’t know who most of the performers were, except for James Taylor!
September 08, 2008 at 11:37 pm, Pam Gravlin said:
Thank you Christine, for ably representing C3!
WAY TO GO ANDY! GLAD TO HEAR YOU ARE OUT AND ABOUT!
September 09, 2008 at 7:01 pm, Suzanne Lindley said:
Christine,
Great blog and it was so fun to watch for the CYB shirts in the audience!
You guys ROCK! I, too, am glad to see Andy out and about. Hope you can post some pictures soon.
Suzanne
September 11, 2008 at 10:13 am, Felicia Cash said:
In November 2005 I also have colorectal cancer stage IV beat the colorectal cancer now it spread to both of my lungs and to my lymphnodes and now a spot to my liver. Had surgeries, radiation, chemo, extense chemo, and clinical trials been fighting for awhile nothing is working so i’m working on finding some alternative. Iknow I can survive this!!!
September 11, 2008 at 10:02 pm, Lisa said:
My dad was diagnosed with colon cancer at the end of March this year and had surgery to remove the cancer. They found cancer in the lymphnods after the surgery and did one bout of chemo over the 48 hours. The chemo caused (or so they told us) blood clots in my dads lungs so they stopped the treatment and said he would probably be fine but they were not going to do any of the follow up testing because they would not treat him anyways so there was no point in looking for something that they would not treat. We found out at what point my dad should get the scans and demanded that our GP order the tests, which he did. At about the same time my dad started having stomach problems again and was admitted to the hospital and as it turns out he now has stage IV colon cancer, which has spread to the liver, stomach and lungs. They tried to do surgery again but the stomach cancer has spread too much. No one will tell us how much time he has left but he seem to be failing very fast (we just found out about the spreading last Tuesday Sept 2). We have been told it can be anywhere from 2 weeks to 6 months but with chemo possibly 9-12 months. We have an appointment Sept 22 to see if chemo is even an option. We feel so left in the dark and angry and we feel like we are lying to our dad because the doctors told him he could last a year, they said he didn’t need to know the truth). Has anyone else been this far advanced and had any success with chemo? Please, if there is anyone out there with any answers we would really appreciate it.
Lisa
September 13, 2008 at 12:37 pm, Kate Murphy said:
Lisa, it is very hard for anyone to give an accurate prediction of how long someone with advanced colon cancer will live. Doctors can tell you the time that most people live after diagnosis and what time chemotherapy will add — but these are estimates and not firm predictions for a particular individual.
Chemotherapy does add time for most, but not all, people. If older people are in good health other than their cancer, they can benefit as much from chemotherapy as younger patients.
However, I am more concerned that your father’s doctor would not want him to have the most accurate information possible. Even if he is very frail or very old, he should know the truth.
You also shouldn’t feel it is necessary to lie to him. Sometimes these talks are very painful and they are never easy for families, but it is important for you to be able to be honest.
At the same time you can focus on helping your dad to live as completely and fully as possible during whatever time he has left. Make sure that he is comfortable and that his symptoms are treated. Talk about good memories. Do the things he enjoys as much as possible.
If you feel that your father’s doctor isn’t giving you all the answers you need, consider getting a second opinion. A large cancer center may offer more options. However, they probably can’t be more specific about exactly how much time your father has left. It’s just too difficult to do that.
October 16, 2008 at 9:23 am, Scott Drumheller said:
Can you provide information on the best colorectal pysicians? There is a big desparity on knowledge levels from ONC to ONC and surgeon to surgeon. We need to have the bet in our corner. My wife is DX stage four 30 years old and mother of three. There is liver and suspect lung involvement. Need help!
October 16, 2008 at 12:17 pm, Kate Murphy said:
Scott,
C3 doesn’t make recommendations for specific doctors.
However, we do urge people to consider a second opinion or treatment at an NCI-designated Cancer Center. These centers are doing research and are also most likely to offer you a multidisciplinary team that includes surgeons, oncologists, and radiologists. Team recommendations are critical for advanced colon cancer like your wife’s case.
You can find a center by state in the NCI Cancer Centers Program.
Because your wife is so young, also ask the doctors about genetic counseling and testing. It may help her and also is important for her family and your children.
October 27, 2008 at 8:44 pm, janet harris said:
my son was diagnosed with stage 4 colon cancer in november of 2007. we were told that he had a few spots on his liver and not to worry about the small spots on his liver right now. my son was in a clinical trial. he has stopped his chemotherapy treatment a couple of times because he became sick of it. i personally feel from the research that i’ve done he should have the surgery to remove the tumor from his colon and a liver resection. his dr says not yet and started him back on the chemotherapy. i’m afraid this dr is going to let this spread. what should we do?
October 28, 2008 at 8:42 am, Kate Murphy said:
Jan,
It is wise to seek a second opinion, especially in cases where doctors might take a different approach to treating advanced colorectal cancer.
A team of doctors — oncologists, surgeons, radiologists — can look at all the information about your son’s case and recommend the best approach.
You can find these multidisciplinary teams in large cancer centers including those that are NCI-designated. Search for an NCI-designated center by state or ask your doctor to refer your son to one.
When tumors are limited to the liver, surgery can be an effective treatment sometimes leading to cure. The right time for surgery should be determined by the team of doctors.
Encourage your son to talk to a larger team.
July 30, 2009 at 1:35 am, Thao said:
My dad was diagnosed with colon cancer stage II last month in June of 09. I am just very thankful that he has a wonderful team of surgeon, oncologist, and radiologist to help him through everything. He had surgery to remove a large part of the cancer and now he’s going through 6 months of chemo. The chemo is giving him diarrhea and excessive vomiting. I just hope he will survive through everything! My advice to others is just to seek the best possible medical team and if you think the physician is not doing all they can for your loved ones, seek others! Get a second opinion like most of you have said before. I can’t stress how important it is. Believe me, there are doctors out there who neglect to order further testing and provide important follow ups. My friend’s dad had surgery that’s gone wrong because his surgeon wasn’t aware that he had a bad liver and he died 25 days after the surgery. Again, anything can happen in surgeries but most things can be prevented if the surgeon did their homework.