I spent the past few days in Baltimore for the Colon
Cancer Alliance's National Conference, and I admit, it was
perfect timing for me. I've been feeling lost and depressed and lonely
and unguided, and this conference inspired me in ways I can't even begin to
tell you.
Last year, I was asked to provide my input on a potential agenda around discussing the 50-and-under crowd, especially as it related to us being diagnosed more, and how it affects us. Talk about preaching to the choir! I took part in a stakeholder study, and was excited to potentially be a part of something like this. Honestly, once it was done and I got the results of the overall study, I put it aside and didn't think much about it.
Earlier this year, I remember getting the information about the conference, and being excited that the conference would focus on 50-and-under. Then, my cancer came back and this became that much more important.
With the financial assistance from CCA and our local chapter (and as a result of the fundraising and scholarships these groups do), our chapter was able to have 7 members go to this conference. Many survivors and caregivers, most (all?) who were affected by colon cancer under the age of 50. We had long-term survivors there (9 years and counting), and people (Terri and me) in treatment. It was quite a diverse group.
I flew out to Baltimore on Thursday morning, and was just amazed from the get-go. We got to the hotel in Baltimore's Inner Harbor, and kept running into people with the conference. In spite of the torrential downpour, a few of the chapter members and I went out to dinner (very pricey, not very good....bummer) then walked over to a place that is apparently world-renowned for their Italian pastries. Um, after the 30-minute wait, we saw why. Delish! Absolutely amazing, and it was tucked away in this little area of Baltimore City called Little Italy. Good lord, seeing areas like that make me miss the East Coast....
Anyways, back to the hotel we trekked to work off the sugar we were going to eat, and Terri (my stage-4 roomie) and I headed back up to the hotel room to try to rest up for the next day.
Friday morning, we hit breakfast, then went to the registration area for the conference. We got our name badges and some swag, then had a chance to talk with some of the CCA folks I've only ever met through email (so nice to be able to put faces with names). I started to get emotional about being there (grateful that I got this amazing opportunity, sad that I have to be there in the first place, and so damn proud....), and then I turned around. CTCA was there, and had a table. Oh yes, the tears started. It seemed to appropriate, for me, that they were there. I calmed myself down, introduced myself to the CTCA rep, and made sure I told her how amazing I thought CTCA was. :)
After that, Terri and I headed to the mall in the hotel (yes, a mall in the hotel) for some retail therapy (for her). The CCA conference didn't start until noon-ish, so we had some time.
Friday's conference focus was on the 50-an-under crowd. There were three survivors that stood up on stage to tell their stories (again, I cried....I think everyone did), and at one point, someone asked all of the stage 4 survivors to stand up. Yes, tears again. I couldn't help it. It was amazing to know I wasn't alone (of the people there, about a quarter stood up as stage 4, and about 80-90% of those were under 50....). And, again, it was hard to stand up and publicly declare (and admit) that I was stage 4. I'm not in any way ashamed - just hate that I'm now stage 4.
Anyways, Friday's panel discussion was titled "Diagnosed Under 50: Why and What Can Be Done". Dr, You (from UT MD Anderson) went through a *lot* of data-driven slides, showing that all of her data indicates a statistical increase in diagnoses under the age of 50 for crc (colorectal cancer). The thing that came out of her study is that the data isn't up-to-date (as with most stats, the data is at least 5-10 years old), and that much more research needs to be done to more accurately reflect what's happening, especially because the medical community tends to react more to numbers than anecdotal data. Dr. Brooks (from the American Cancer Society) spoke about lowering the screening age for crc, and in no uncertain terms, indicated that the ACS will not be lowering the screening age for crc. (Obviously, this did not go over well with the conference attendees.) The one thing that he did indicate (that I think it ridiculously important and so misunderstood) is that screening is solely for asymptomatic patients. This means that the screening age is for people who do not have any indications , risk factors, etc., for a particular disease. So, if you are 40 years old, have no family history, and have no presentation of symptoms (bleeding, change in bowel habits, etc.) that would provide valid reason for testing, you shouldn't be screened. However, he did indicate that, if you present with risk factors and/or symptoms, you should be diagnostically tested, regardless of age.
The take-away? Doctors should not be using the "screening age guidelines" as a reason to not test someone presenting with symptoms. I think this is so misunderstood, by society at large and specifically by the medical community. So many of us at the conference took this to heart, and will be making sure that every single person (layperson, medical person, etc.) understands this better. In addition to that, you can bet your ass that we made sure to let Dr. Brooks (the ACS rep) know that this is a significant failure on the part of ACS to not clarify this point.
OK - taking a deep breath. This point took did not go over well with the conference attendees, and Dr. Brooks was questioned by many of us (including me) on his lack of accurate, up-to-date data.
The thing that bothered me was that Dr. Brooks used out-of-date data to (try to) prove his point - that there isn't a reason to start screening earlier. *sigh* I called him out on this, and asked him this: if Dr. Brooks and Dr. You can't get their statistics to reflect the same information (i.e., Dr. You said there is an increase, it's a 50/50 gender split, and there's an increase in risk based on race; Dr. Brooks said that being a woman, non-white, or young definitively did not raise your risk, nor was there evidence in an increase in the under-50 diagnoses), how the heck can the medical community do the right thing? He didn't have an answer for this, and appeared to be slightly miffed at me. Dr. You, however, caught me later and thanked me for speaking up. Interesting.
After that discussion concluded and a short break, there was another panel called "Challenges and Issues Associated with Diagnosis Under 50." There was some really good discussion around being diagnosed under 50 (and the differences between the age groups as it relates to treatment, side effects, long-term management, etc.), offering support to survivors, genetic links, and advocating for insurance reimbursement. There was some really good information provided, and I think it helped give many of us hope about what we are going through.
The day wrapped up, and that evening, there was a "Blue Party,", which was a networking reception - in blue! An amazing opportunity to meet up with more people (apparently, me speaking up during the panel sessions put me on the map, and I had a ton of people pull me aside and thank me for speaking up). It was an awesome opportunity, and so much fun! I didn't get in until really late that night....but, it was so worth it!
Saturday's session was more generalized, but still had a secondary focus on the under-50 crowd. It started out with breakfast (yummy) and then an absolutely hysterical presentation from Brenda Alsagher, who herself is a crc survivor and is a comedienne. She gave us permission to laugh, and gave us reason to laugh. Super important thing to remember, and I think we tend to forget it. It was nice to laugh for 45 minutes straight!
The next panel discussion was titled "What Everyone Needs to Know About CRC" and included a very informative presentation from Dr. Ocean. She told us about some of the treatment advances that are coming down the line, and discussed the pros and cons of treatment protocols. There as also a presentation from Ms. Dunton about the new healthcare law, and I can tell you that, regardless of your political affiliation, you would be in support of at least portions of the law if you saw her presentation and the reaction to it. It was really good to hear, and to be able to better understand what's coming.
The next panel discussion was titled "What Everyone Needs to Know: Your Guide to an Integrated Wellness Plan" and focused on the importance of nutrition, exercise, mind/body wellness, and a discussion on supplements. Very interesting and informative.
CTCA hosted the "CCA's Sapphire Awards" luncheon on Saturday. This was particularly emotional....there were some amazing people up on stage, including Teri Grieg, who is the only person to complete an Ironman while undergoing bi-monthly chemotherapy (are you KIDDING me???). And, our local Central AZ Chapter won the "Best Undy 5000 Management" Sapphire Award. We knew ahead of time that we'd been given this distinct and amazing honor, and I think we all thought we were prepared. Then, they showed the video that was made at the 2010 Undy (which I chaired), and showed our Rebekah, our spokesperson who lost her battle back in February of this year. It was so emotional - we all cried. For me, seeing the event I worked so damn hard on and was so ridiculously proud of (remember, I trained to run in that event as well as chaired it), and seeing Rebekah alive, vibrant, beautiful - well, it was everything I could do to keep my composure enough to make it up on stage. I couldn't be more proud to be part of such an amazing group of people, and to stand on stage as a survivor. It was just spectacular.
Saturday's panel discussions included an "Ask the Expert" session as well as several breakout sessions. The conference concluded, and it was bittersweet - good to know that I was heading home, but sad to see it end. I enjoyed this event so much, and came away with a much better understanding of who I am as a survivor, how I fit within the realm of this world, and how I can help others (in some small way) as we continue to move forward.
This was just an amazing opportunity - I met long-term stage 4 survivors, which is exactly what I needed. I learned about some of the new treatment options on the horizon, and heard many medical professionals talk about the changes that they see coming in the next 5-10 years. It gave me hope for the future of my fellow survivors, and for me. If there are 10+ year survivors with the technology and medicines we have now, what's going to happen when we get ever more ammunition in our arsenal? The one thing that worries me (and was recognized as a very important issue) is that, as we live longer, we are going to experience more long-term side effects and issues. Recognizing these, and learning to treat them, is a great challenge, for the survivors and for the medical community.
I will do my best to post more pictures soon - I'm trying to get this entry posted ASAP (have had many people ask about it already), and I have plans for the day - well, sort of. Lunch for the kids, then off to the gym. So, yeah. Plans! :)
I can say that meeting my fellow survivors, spending time with my local chapter, and getting more information about this disease has completely reinvigorated me and renewed my energy and my passion. For this cause, for my fellow survivors, and most importantly, for my life.
If you are interested in listening in on a recap of the conference, CCA is hosting a chat tonight at 8pm EST. You can log in here. There will also be a white paper written and distributed - if you are interested in that, please let me know and I'll make sure to post the information once it's released.
We are on the brink of amazing things in the crc world. I really feel like there is a paradigm shift occurring, and it feels so good to be a part of it. To know that what I'm going through isn't for naught. To know that the efforts I put into this cause will (and they will...) someday, help someone through their own journey.
Last year, I was asked to provide my input on a potential agenda around discussing the 50-and-under crowd, especially as it related to us being diagnosed more, and how it affects us. Talk about preaching to the choir! I took part in a stakeholder study, and was excited to potentially be a part of something like this. Honestly, once it was done and I got the results of the overall study, I put it aside and didn't think much about it.
Earlier this year, I remember getting the information about the conference, and being excited that the conference would focus on 50-and-under. Then, my cancer came back and this became that much more important.
With the financial assistance from CCA and our local chapter (and as a result of the fundraising and scholarships these groups do), our chapter was able to have 7 members go to this conference. Many survivors and caregivers, most (all?) who were affected by colon cancer under the age of 50. We had long-term survivors there (9 years and counting), and people (Terri and me) in treatment. It was quite a diverse group.
I flew out to Baltimore on Thursday morning, and was just amazed from the get-go. We got to the hotel in Baltimore's Inner Harbor, and kept running into people with the conference. In spite of the torrential downpour, a few of the chapter members and I went out to dinner (very pricey, not very good....bummer) then walked over to a place that is apparently world-renowned for their Italian pastries. Um, after the 30-minute wait, we saw why. Delish! Absolutely amazing, and it was tucked away in this little area of Baltimore City called Little Italy. Good lord, seeing areas like that make me miss the East Coast....
Anyways, back to the hotel we trekked to work off the sugar we were going to eat, and Terri (my stage-4 roomie) and I headed back up to the hotel room to try to rest up for the next day.
Friday morning, we hit breakfast, then went to the registration area for the conference. We got our name badges and some swag, then had a chance to talk with some of the CCA folks I've only ever met through email (so nice to be able to put faces with names). I started to get emotional about being there (grateful that I got this amazing opportunity, sad that I have to be there in the first place, and so damn proud....), and then I turned around. CTCA was there, and had a table. Oh yes, the tears started. It seemed to appropriate, for me, that they were there. I calmed myself down, introduced myself to the CTCA rep, and made sure I told her how amazing I thought CTCA was. :)
After that, Terri and I headed to the mall in the hotel (yes, a mall in the hotel) for some retail therapy (for her). The CCA conference didn't start until noon-ish, so we had some time.
Friday's conference focus was on the 50-an-under crowd. There were three survivors that stood up on stage to tell their stories (again, I cried....I think everyone did), and at one point, someone asked all of the stage 4 survivors to stand up. Yes, tears again. I couldn't help it. It was amazing to know I wasn't alone (of the people there, about a quarter stood up as stage 4, and about 80-90% of those were under 50....). And, again, it was hard to stand up and publicly declare (and admit) that I was stage 4. I'm not in any way ashamed - just hate that I'm now stage 4.
Anyways, Friday's panel discussion was titled "Diagnosed Under 50: Why and What Can Be Done". Dr, You (from UT MD Anderson) went through a *lot* of data-driven slides, showing that all of her data indicates a statistical increase in diagnoses under the age of 50 for crc (colorectal cancer). The thing that came out of her study is that the data isn't up-to-date (as with most stats, the data is at least 5-10 years old), and that much more research needs to be done to more accurately reflect what's happening, especially because the medical community tends to react more to numbers than anecdotal data. Dr. Brooks (from the American Cancer Society) spoke about lowering the screening age for crc, and in no uncertain terms, indicated that the ACS will not be lowering the screening age for crc. (Obviously, this did not go over well with the conference attendees.) The one thing that he did indicate (that I think it ridiculously important and so misunderstood) is that screening is solely for asymptomatic patients. This means that the screening age is for people who do not have any indications , risk factors, etc., for a particular disease. So, if you are 40 years old, have no family history, and have no presentation of symptoms (bleeding, change in bowel habits, etc.) that would provide valid reason for testing, you shouldn't be screened. However, he did indicate that, if you present with risk factors and/or symptoms, you should be diagnostically tested, regardless of age.
The take-away? Doctors should not be using the "screening age guidelines" as a reason to not test someone presenting with symptoms. I think this is so misunderstood, by society at large and specifically by the medical community. So many of us at the conference took this to heart, and will be making sure that every single person (layperson, medical person, etc.) understands this better. In addition to that, you can bet your ass that we made sure to let Dr. Brooks (the ACS rep) know that this is a significant failure on the part of ACS to not clarify this point.
OK - taking a deep breath. This point took did not go over well with the conference attendees, and Dr. Brooks was questioned by many of us (including me) on his lack of accurate, up-to-date data.
The thing that bothered me was that Dr. Brooks used out-of-date data to (try to) prove his point - that there isn't a reason to start screening earlier. *sigh* I called him out on this, and asked him this: if Dr. Brooks and Dr. You can't get their statistics to reflect the same information (i.e., Dr. You said there is an increase, it's a 50/50 gender split, and there's an increase in risk based on race; Dr. Brooks said that being a woman, non-white, or young definitively did not raise your risk, nor was there evidence in an increase in the under-50 diagnoses), how the heck can the medical community do the right thing? He didn't have an answer for this, and appeared to be slightly miffed at me. Dr. You, however, caught me later and thanked me for speaking up. Interesting.
After that discussion concluded and a short break, there was another panel called "Challenges and Issues Associated with Diagnosis Under 50." There was some really good discussion around being diagnosed under 50 (and the differences between the age groups as it relates to treatment, side effects, long-term management, etc.), offering support to survivors, genetic links, and advocating for insurance reimbursement. There was some really good information provided, and I think it helped give many of us hope about what we are going through.
The day wrapped up, and that evening, there was a "Blue Party,", which was a networking reception - in blue! An amazing opportunity to meet up with more people (apparently, me speaking up during the panel sessions put me on the map, and I had a ton of people pull me aside and thank me for speaking up). It was an awesome opportunity, and so much fun! I didn't get in until really late that night....but, it was so worth it!
Saturday's session was more generalized, but still had a secondary focus on the under-50 crowd. It started out with breakfast (yummy) and then an absolutely hysterical presentation from Brenda Alsagher, who herself is a crc survivor and is a comedienne. She gave us permission to laugh, and gave us reason to laugh. Super important thing to remember, and I think we tend to forget it. It was nice to laugh for 45 minutes straight!
The next panel discussion was titled "What Everyone Needs to Know About CRC" and included a very informative presentation from Dr. Ocean. She told us about some of the treatment advances that are coming down the line, and discussed the pros and cons of treatment protocols. There as also a presentation from Ms. Dunton about the new healthcare law, and I can tell you that, regardless of your political affiliation, you would be in support of at least portions of the law if you saw her presentation and the reaction to it. It was really good to hear, and to be able to better understand what's coming.
The next panel discussion was titled "What Everyone Needs to Know: Your Guide to an Integrated Wellness Plan" and focused on the importance of nutrition, exercise, mind/body wellness, and a discussion on supplements. Very interesting and informative.
CTCA hosted the "CCA's Sapphire Awards" luncheon on Saturday. This was particularly emotional....there were some amazing people up on stage, including Teri Grieg, who is the only person to complete an Ironman while undergoing bi-monthly chemotherapy (are you KIDDING me???). And, our local Central AZ Chapter won the "Best Undy 5000 Management" Sapphire Award. We knew ahead of time that we'd been given this distinct and amazing honor, and I think we all thought we were prepared. Then, they showed the video that was made at the 2010 Undy (which I chaired), and showed our Rebekah, our spokesperson who lost her battle back in February of this year. It was so emotional - we all cried. For me, seeing the event I worked so damn hard on and was so ridiculously proud of (remember, I trained to run in that event as well as chaired it), and seeing Rebekah alive, vibrant, beautiful - well, it was everything I could do to keep my composure enough to make it up on stage. I couldn't be more proud to be part of such an amazing group of people, and to stand on stage as a survivor. It was just spectacular.
Saturday's panel discussions included an "Ask the Expert" session as well as several breakout sessions. The conference concluded, and it was bittersweet - good to know that I was heading home, but sad to see it end. I enjoyed this event so much, and came away with a much better understanding of who I am as a survivor, how I fit within the realm of this world, and how I can help others (in some small way) as we continue to move forward.
This was just an amazing opportunity - I met long-term stage 4 survivors, which is exactly what I needed. I learned about some of the new treatment options on the horizon, and heard many medical professionals talk about the changes that they see coming in the next 5-10 years. It gave me hope for the future of my fellow survivors, and for me. If there are 10+ year survivors with the technology and medicines we have now, what's going to happen when we get ever more ammunition in our arsenal? The one thing that worries me (and was recognized as a very important issue) is that, as we live longer, we are going to experience more long-term side effects and issues. Recognizing these, and learning to treat them, is a great challenge, for the survivors and for the medical community.
I will do my best to post more pictures soon - I'm trying to get this entry posted ASAP (have had many people ask about it already), and I have plans for the day - well, sort of. Lunch for the kids, then off to the gym. So, yeah. Plans! :)
I can say that meeting my fellow survivors, spending time with my local chapter, and getting more information about this disease has completely reinvigorated me and renewed my energy and my passion. For this cause, for my fellow survivors, and most importantly, for my life.
If you are interested in listening in on a recap of the conference, CCA is hosting a chat tonight at 8pm EST. You can log in here. There will also be a white paper written and distributed - if you are interested in that, please let me know and I'll make sure to post the information once it's released.
We are on the brink of amazing things in the crc world. I really feel like there is a paradigm shift occurring, and it feels so good to be a part of it. To know that what I'm going through isn't for naught. To know that the efforts I put into this cause will (and they will...) someday, help someone through their own journey.
Comments:
Carol
Pack Urban said...
This
is exactly why I continue to donate $$ to CCA and not ACS! I think ACS is too
overwhelmed by so many cancers that they can't focus. I'd rather put my $$ into
research to help colon cancer survivors.
July
24, 2012 at 1:36 PM
Bear
with me as I'm having a "brain fart" moment. So if there is a family
Hx, screening IS recommended. I ask because my family doc brushed me off when I
said I wanted a colonoscopy telling me I was too young and had no symptoms. But
my grandma was Dx at 75, my Mom's cancer started at 55 - 20 years earlier. I'm
35 which is exactly 20 years before my Mom's cancer manifested itself. See
where I'm going with this. I have an appt for a physical in September and would
love to arm myself with some recent literature to sway her to allow me the
scope.
All that aside...holy smokes...it sounds like that conference was filled with good info *and* good times! So happy you had the opportunity to attend!
All that aside...holy smokes...it sounds like that conference was filled with good info *and* good times! So happy you had the opportunity to attend!
July
24, 2012 at 3:46 PM
Thanks
for such a detailed recap, Michelle! I'm so glad you were so inspired and yes,
you made us very very proud! Wish I could be there, hopefully next year :)
My question is regarding the treatment options - you wrote that the doctors said there are drugs in the works, but did they name any specific drugs yet? Did they bring up that long r*** something drug?
Oh, and regarding the long term side effects - what were some of the issues that you remember them naming specifically?
My question is regarding the treatment options - you wrote that the doctors said there are drugs in the works, but did they name any specific drugs yet? Did they bring up that long r*** something drug?
Oh, and regarding the long term side effects - what were some of the issues that you remember them naming specifically?
July
24, 2012 at 8:20 PM
I
would love all the information you received in paper form, or some sort of
internet form (email).
I'm 39 with stage 4 colon cancer.
Any info I get really helps.
I'm 39 with stage 4 colon cancer.
Any info I get really helps.
August
10, 2012 at 4:41 PM
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