#ayacsm Transcript
Healthcare social media transcript of the #ayacsm hashtag.
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See #ayacsm Influencers/Analytics.
| Profile | Tweet |
|---|---|
 | Emily K. Drake @EK_Drake Welcome to the #AYACSM tweet chat! We're so glad to have you with us this evening! Be sure to tweet along using #AYACSM |
 | Deana Ruston 🇨🇦 ♿️ @deanaruston RT @EK_Drake: Welcome to the #AYACSM tweet chat! We're so glad to have you with us this evening! Be sure to tweet along using #AYACSM |
| Emily K. Drake @EK_Drake Before we begin I just want to share with everyone that it was 5 years ago this week that the idea for #AYACSM was born! https://t.co/6WPFAspwZb |
 | Mark Lewis @marklewismd RT @EK_Drake: Welcome to the #AYACSM tweet chat! We're so glad to have you with us this evening! Be sure to tweet along using #AYACSM |
| Emily K. Drake @EK_Drake #AYACSM was co-founded by @EK_Drake (me!), @ukfann00 and @StupidCancer ! |
| Emily K. Drake @EK_Drake As a reminder, this chat is for advocates involved in the adolescent and young adult cancer societal movement #AYACSM |
| Deana Ruston 🇨🇦 ♿️ @deanaruston RT @EK_Drake: As a reminder, this chat is for advocates involved in the adolescent and young adult cancer societal movement #AYACSM |
| Emily K. Drake @EK_Drake An advocate is anyone who speaks, writes or in other ways actively supports the AYA cancer movement as a whole #ayacsm |
 | Kimberly Miller, PhD @KimMillerPhD @EK_Drake Wow! Happy birthday (anniversary?) to #AYACSM and thanks to the founders for helping bring us together #onhere and elsewhere! |
 | Billy Paymaster @ukfann00 RT @EK_Drake: #AYACSM was co-founded by @EK_Drake (me!), @ukfann00 and @StupidCancer ! |
| Deana Ruston 🇨🇦 ♿️ @deanaruston RT @EK_Drake: An advocate is anyone who speaks, writes or in other ways actively supports the AYA cancer movement as a whole #ayacsm |
| Emily K. Drake @EK_Drake All are welcome to the #AYACSM (Adolescent and Young Adult Cancer Societal Movement) tweet chat starting now! |
| Billy Paymaster @ukfann00 RT @EK_Drake: Before we begin I just want to share with everyone that it was 5 years ago this week that the idea for #AYACSM was born! https://t.co/6WPFAspwZb |
| Deana Ruston 🇨🇦 ♿️ @deanaruston RT @EK_Drake: All are welcome to the #AYACSM (Adolescent and Young Adult Cancer Societal Movement) tweet chat starting now! |
| Emily K. Drake @EK_Drake I am pleased to introduce tonight's guest moderator: @marklewismd !!!!! Take it away, Mark!! #AYACSM https://t.co/wzjgOgsdzP |
| Emily K. Drake @EK_Drake RT @KimMillerPhD: @EK_Drake Wow! Happy birthday (anniversary?) to #AYACSM and thanks to the founders for helping bring us together #onhere and elsewhere! |
| Emily K. Drake @EK_Drake @KimMillerPhD Thank you!!! It's hard to believe! #AYACSM |
 | Team Shan (Lorna Larsen) @TeamShan Hi everyone! Lorna here from Team Shan, Huntsville ON #ayacsm |
| Mark Lewis @marklewismd Thank you Emily! Tonight, we will be talking about self-advocacy Let’s start by doing introductions, giving your name, location, and affiliation with the young adult cancer advocacy. #AYACSM |
 | Anne Kirchhoff @annersck RT @EK_Drake: Tomorrow's #AYACSM tweet chat will focus on self-advocacy - If you are an #AYACancer patient, survivor, caregiver, loved one, advocate, healthcare provider or researcher then this one is for you!! Special guest @marklewismd will be moderating! https://t.co/lYUYe3maaC |
| Deana Ruston 🇨🇦 ♿️ @deanaruston Hi everyone! I'm Deana- thyroid cancer lifer in #LdnOnt!! Public health enthusiast, advocate & speaker on lived & living experience on AYA cancer, mental illness, and addiction! #AYACSM |
| Deana Ruston 🇨🇦 ♿️ @deanaruston RT @marklewismd: Thank you Emily! Tonight, we will be talking about self-advocacy Let’s start by doing introductions, giving your name, location, and affiliation with the young adult cancer advocacy. #AYACSM |
| Emily K. Drake @EK_Drake @TeamShan Welcome, Lorna!! #AYACSM |
| Emily K. Drake @EK_Drake RT @marklewismd: Thank you Emily! Tonight, we will be talking about self-advocacy Let’s start by doing introductions, giving your name, location, and affiliation with the young adult cancer advocacy. #AYACSM |
| Mark Lewis @marklewismd I am a medical oncologist @Intermountain in Utah who previously worked at @MDAndersonNews and trained @MayoClinic At the age of 30, I diagnosed myself with a hereditary tumor syndrome, MEN1. I learned to be involved in my own care while helping others to do the same. #AYACSM |
| Emily K. Drake @EK_Drake @marklewismd Emily Drake - Co-Founder of #AYACSM - #PhD in health trainee - #AYACancer researcher - #Halifax, #NovaScotia, #Canada! |
| Emily K. Drake @EK_Drake @realslimsheyla Thank you!! It is really hard to believe that we started all of this five years ago! The day after @ukfann00 and I met! #AYACSM |
| Billy Paymaster @ukfann00 Billy Paymaster COO/Director of Marketing & Communications for @Hope4YAWC & Co-Founder of #AYACSM, San Diego, CA |
| Emily K. Drake @EK_Drake @deanaruston Welcome, Deana!! #AYACSM |
| Kimberly Miller, PhD @KimMillerPhD @marklewismd @EK_Drake Hi Mark! My name is Kim Miller, from the great state of California (sorry, election night humor). I'm a health behavior/health systems scientist and my research focuses on #AYA #cancer #AYACSM |
| Deana Ruston 🇨🇦 ♿️ @deanaruston @EK_Drake Thank you!! #AYACSM |
| Emily K. Drake @EK_Drake RT @marklewismd: I am a medical oncologist @Intermountain in Utah who previously worked at @MDAndersonNews and trained @MayoClinic At the age of 30, I diagnosed myself with a hereditary tumor syndrome, MEN1. I learned to be involved in my own care while helping others to do the same. #AYACSM |
| Mark Lewis @marklewismd Q1: Navigating healthcare can be a complicated, even demoralizing experience. What aspect of your care (or the care of #AYACSM patients in general) do you find the most frustrating? #AYACSM |
| Deana Ruston 🇨🇦 ♿️ @deanaruston RT @marklewismd: Q1: Q1: Navigating healthcare can be a complicated, even demoralizing experience. What aspect of your care (or the care of #AYACSM patients in general) do you find the most frustrating? #AYACSM |
| Emily K. Drake @EK_Drake @TeamShan Thanks - it is hard to believe! @heycriticalmass ' conference in Cleveland 2013! #AYACSM |
 | Sumanta K. Pal, MD, FASCO @montypal RT @marklewismd: I am a medical oncologist @Intermountain in Utah who previously worked at @MDAndersonNews and trained @MayoClinic At the age of 30, I diagnosed myself with a hereditary tumor syndrome, MEN1. I learned to be involved in my own care while helping others to do the same. #AYACSM |
| Emily K. Drake @EK_Drake RT @KimMillerPhD: @marklewismd @EK_Drake Hi Mark! My name is Kim Miller, from the great state of California (sorry, election night humor). I'm a health behavior/health systems scientist and my research focuses on #AYA #cancer #AYACSM |
| Team Shan (Lorna Larsen) @TeamShan RT @EK_Drake: @TeamShan Thanks - it is hard to believe! @heycriticalmass ' conference in Cleveland 2013! #AYACSM |
 | Chelsea Boet, MD @BoetChels I was diagnosed with stage iv colon cancer in march, at age 34, 9 weeks post partum. I’m a primary care physician and mom of 2. #AYACSM |
| Emily K. Drake @EK_Drake RT @ukfann00: Billy Paymaster COO/Director of Marketing & Communications for @Hope4YAWC & Co-Founder of #AYACSM, San Diego, CA |
| Deana Ruston 🇨🇦 ♿️ @deanaruston A1: I think the most frustrating part of care for AYAs is that we're often not recognized as a unique patient population. There's great targeted/ planned services & supports for children & youth but not AYAs. We need different care- we are different. #AYACSM |
| Emily K. Drake @EK_Drake RT @marklewismd: Q1: Q1: Navigating healthcare can be a complicated, even demoralizing experience. What aspect of your care (or the care of #AYACSM patients in general) do you find the most frustrating? #AYACSM |
| Mark Lewis @marklewismd A1. I, for one, am frustrated by the gulf between the practice of medicine and the business of healthcare. As a doctor, I was trained in one but not the other. As a patient, I essentially have to negotiate the costs of care on my own. #AYACSM |
| Emily K. Drake @EK_Drake @BoetChels Thank you so much for joining us tonight #AYACSM |
| Kimberly Miller, PhD @KimMillerPhD A1: Great question. In our research we measure health care self-efficacy which is the confidence to manage one's health care, e.g. make/get appts, deal with insurance, and navigate our crazy patchwork US system). Patients with lower levels are less likely to STAY in care. #AYACSM |
| Mark Lewis @marklewismd @realslimsheyla Yes, I think it's given me a deeper understanding of what pts go through. It is the difference between gnosis -- the knowledge we get from textbooks -- and pathos -- the feeling we get from shared experience. #AYACSM. |
| Emily K. Drake @EK_Drake RT @deanaruston: A1: A1: I think the most frustrating part of care for AYAs is that we're often not recognized as a unique patient population. There's great targeted/ planned services & supports for children & youth but not AYAs. We need different care- we are different. #AYACSM |
| Team Shan (Lorna Larsen) @TeamShan #ayacsm Lorna, President of Team Shan Breast Cancer Awareness for Young Wiomen (Team Shan) from Huntsville, Ontario, Canada |
| Emily K. Drake @EK_Drake RT @marklewismd: A1. I, for one, am frustrated by the gulf between the practice of medicine and the business of healthcare. As a doctor, I was trained in one but not the other. As a patient, I essentially have to negotiate the costs of care on my own. #AYACSM |
| Emily K. Drake @EK_Drake RT @KimMillerPhD: A1: A1: Great question. In our research we measure health care self-efficacy which is the confidence to manage one's health care, e.g. make/get appts, deal with insurance, and navigate our crazy patchwork US system). Patients with lower levels are less likely to STAY in care. #AYACSM |
| Emily K. Drake @EK_Drake A1: I'd like to also add that the knowledge to practice gap is particularly frustrating #ayacsm |
| Team Shan (Lorna Larsen) @TeamShan @marklewismd Most frustrating as a mom who lived the experience with her daughter was the lack of communication!! Sharing information that we may not have known to ask. Poor communication overall #ayacsm |
 | Stefanie Thomas, MD @StefThomasMD RT @marklewismd: A1. I, for one, am frustrated by the gulf between the practice of medicine and the business of healthcare. As a doctor, I was trained in one but not the other. As a patient, I essentially have to negotiate the costs of care on my own. #AYACSM |
| Emily K. Drake @EK_Drake RT @TeamShan: @marklewismd Most frustrating as a mom who lived the experience with her daughter was the lack of communication!! Sharing information that we may not have known to ask. Poor communication overall #ayacsm |
| Team Shan (Lorna Larsen) @TeamShan RT @EK_Drake: Before we begin I just want to share with everyone that it was 5 years ago this week that the idea for #AYACSM was born! https://t.co/6WPFAspwZb |
| Mark Lewis @marklewismd @TeamShan I am so sorry to hear that. As a corrective, there is a whole movement in medicine toward true shared decision-making. Hopefully the era of paternalism is nearing its end. #ayacsm |
| Kimberly Miller, PhD @KimMillerPhD A1) And just basic care coordination! I'm switching insurers this January. I don't even know what'll happen with my EMR! If you've had cancer, this is a HUGE issue because your dx and treatment history needs to travel with you. It's a patient burden issue and system fail. #AYACSM |
| Mark Lewis @marklewismd Q2: Do you ever feel like your concerns (or the concerns of #AYACSM patients) are not being taken seriously by healthcare providers? If so, which ones? #AYACSM |
| Emily K. Drake @EK_Drake RT @marklewismd: @TeamShan I am so sorry to hear that. As a corrective, there is a whole movement in medicine toward true shared decision-making. Hopefully the era of paternalism is nearing its end. #ayacsm |
| Deana Ruston 🇨🇦 ♿️ @deanaruston RT @marklewismd: Q2: Q2: Do you ever feel like your concerns (or the concerns of #AYACSM patients) are not being taken seriously by healthcare providers? If so, which ones? #AYACSM |
| Emily K. Drake @EK_Drake RT @KimMillerPhD: A1) And just basic care coordination! I'm switching insurers this January. I don't even know what'll happen with my EMR! If you've had cancer, this is a HUGE issue because your dx and treatment history needs to travel with you. It's a patient burden issue and system fail. #AYACSM |
| Emily K. Drake @EK_Drake RT @marklewismd: Q2: Q2: Do you ever feel like your concerns (or the concerns of #AYACSM patients) are not being taken seriously by healthcare providers? If so, which ones? #AYACSM |
| Kimberly Miller, PhD @KimMillerPhD @EK_Drake Bingo. #AYACSM |
| Billy Paymaster @ukfann00 A1: The demoralizing reality of the situation in the U.S. is based on one's financial situation combined with their location & diagnosis, there are those who are having to fight an upward climb that is almost insurmountable from the start. This is me being pc about it. #ayacsm |
| Team Shan (Lorna Larsen) @TeamShan RT @marklewismd: @TeamShan I am so sorry to hear that. As a corrective, there is a whole movement in medicine toward true shared decision-making. Hopefully the era of paternalism is nearing its end. #ayacsm |
| Mark Lewis @marklewismd A schema for shared decision-making (taken from this paper: https://t.co/oGT4APQb5w) #AYACSM https://t.co/7Xbl9i8Nob |
| Emily K. Drake @EK_Drake @marklewismd A2: I feel that sometimes decisions are made for patients without their consent (e.g. re: #oncofertility - we can't approach them with this subject because it's "too much" for them right now) #AYACSM |
| Stefanie Thomas, MD @StefThomasMD @EK_Drake @marklewismd Yes! Actively trying to fight this culture from the inside. #AYACSM |
| Deana Ruston 🇨🇦 ♿️ @deanaruston A2: It's difficult as an AYA once again-you're in, in-between phase between child/ youth care & adult care. You don't need/ want to be treated like a child but you also aren't ready to transition to adult system. It's a balance- & as providers & system- it needs work. #AYACSM |
| Kimberly Miller, PhD @KimMillerPhD A2: I'm launching a pilot study with #AYA #colorectal #cancer patients and survivors. In discussions I keep hearing the same thing: my PCP told me it was IBS, no tests were ordered. #AYACSM |
| Emily K. Drake @EK_Drake RT @ukfann00: A1: A1: The demoralizing reality of the situation in the U.S. is based on one's financial situation combined with their location & diagnosis, there are those who are having to fight an upward climb that is almost insurmountable from the start. This is me being pc about it. #ayacsm |
| Emily K. Drake @EK_Drake RT @marklewismd: A schema for shared decision-making (taken from this paper: A schema for shared decision-making (taken from this paper: https://t.co/oGT4APQb5w) #AYACSM https://t.co/7Xbl9i8Nob |
| Mark Lewis @marklewismd @EK_Drake This is, sadly, true. We sometimes assume the "tinnitus of terror" after diagnosis. But the patient can't hear what was never said. Our good intentions to protect patients have sometimes undermined their full informed consent. Knowledge = power #AYACSM |
| Emily K. Drake @EK_Drake RT @StefThomasMD: @EK_Drake @marklewismd Yes! Actively trying to fight this culture from the inside. #AYACSM |
| Emily K. Drake @EK_Drake RT @deanaruston: A2: A2: It's difficult as an AYA once again-you're in, in-between phase between child/ youth care & adult care. You don't need/ want to be treated like a child but you also aren't ready to transition to adult system. It's a balance- & as providers & system- it needs work. #AYACSM |
 | Stephanie Fischer @RarePOV RT @EK_Drake: @marklewismd A2: I feel that sometimes decisions are made for patients without their consent (e.g. re: @marklewismd A2: I feel that sometimes decisions are made for patients without their consent (e.g. re: #oncofertility - we can't approach them with this subject because it's "too much" for them right now) #AYACSM |
| Emily K. Drake @EK_Drake RT @KimMillerPhD: A2: A2: I'm launching a pilot study with #AYA #colorectal #cancer patients and survivors. In discussions I keep hearing the same thing: my PCP told me it was IBS, no tests were ordered. #AYACSM |
| Mark Lewis @marklewismd A2. I frequently see somatic complaints in young patients (myself included) written off as psychological or at least less physically threatening. For instance, abdominal pain is assumed to be IBS rather than investigated as a more serious problem, e.g. colorectal cancer. #AYACSM |
| Kimberly Miller, PhD @KimMillerPhD @deanaruston Definitely. This seems to be true across health care systems too, transition issues. No one is nailing this! #AYACSM |
| Mark Lewis @marklewismd A2. When I was in the process of figuring out my own tumor syndrome, I was very nearly written off as a hypochondriac. When my case was written up as a medical mystery in the New York Times it was titled "Nerves or Something Worse?" #AYACSM |
| Team Shan (Lorna Larsen) @TeamShan Absolutely #ayacsm |
| Emily K. Drake @EK_Drake @marklewismd Agreed and now we know that #oncofertility issues are some of the most distressing ones patients deal with - particularly when they find out after decisions have been made for them re: their own fertility. @ANZoncofert is legendary for this work #AYACSM |
| Stefanie Thomas, MD @StefThomasMD @marklewismd @EK_Drake The good intentions are often coupled with feelings of helplessness. In the same conversation about getting taxi vouchers so patients don’t need to take the bus to appointments, you are telling them they will probably be infertile unless they have thousands of dollars. #AYACSM |
| Deana Ruston 🇨🇦 ♿️ @deanaruston Yes, definitely not just AYA cancer specific. Applies to the whole system with children and youth with chronic conditions- diabetes, kidney disease even mental illness etc. Transitions and Transitional Age Youth is a key topic at the moment! #AYACSM |
| Mark Lewis @marklewismd A2. Unfortunately, as we all know far too well, youth is not an inoculum against serious, even life-threatening illness. Cancer has no respect for age and thus doctors should remain vigilant when patients voice significant & persistent concerns. #AYACSM |
| Kimberly Miller, PhD @KimMillerPhD @marklewismd Yep! This is what I continually hear. And not to lay it on the PCPs, but clearly there needs to be better education & more targeted guidelines so it's not so subjective. Colorectal seems to be the poster child here. #AYACSM |
| Emily K. Drake @EK_Drake @KimMillerPhD @deanaruston Locally our #CysticFibrosis clinic does a fantastic job at transitioning patients from peds to adult care. There's a lot to learn sometimes from other #AYA chronic illness populations #AYACSM |
| Deana Ruston 🇨🇦 ♿️ @deanaruston RT @marklewismd: A2. Unfortunately, as we all know far too well, youth is not an inoculum against serious, even life-threatening illness. Cancer has no respect for age and thus doctors should remain vigilant when patients voice significant & persistent concerns. #AYACSM |
| Mark Lewis @marklewismd @KimMillerPhD 1 in 7 patients in my GI oncology practice is under the age of 50. Bright red blood per rectum in a young person is not necessarily hemorrhoidal. #crcsm #ayacsm |
| Kimberly Miller, PhD @KimMillerPhD @EK_Drake @deanaruston Yes! I've seen a lot of improvement and innovation recently in transition of care with #sicklecell patients. A lot to learn! #AYACSM |
| Emily K. Drake @EK_Drake @marklewismd @StefThomasMD I agree there are a number of barriers. However, I feel ethically that someone's SES is not a reason to not inform them. Also, we see this in areas where fertility preservation is covered too! #AYACSM |
| Team Shan (Lorna Larsen) @TeamShan @marklewismd I have advocated strongly for both awareness and education messaging for the well AYA and for improved end of life care for AYA patients. Despite the evidence, movement forward to address their concerns is extremely slow and gaps continue to exist :( #ayacsm |
| Emily K. Drake @EK_Drake RT @marklewismd: A2. Unfortunately, as we all know far too well, youth is not an inoculum against serious, even life-threatening illness. Cancer has no respect for age and thus doctors should remain vigilant when patients voice significant & persistent concerns. #AYACSM |
| Team Shan (Lorna Larsen) @TeamShan RT @marklewismd: A2. Unfortunately, as we all know far too well, youth is not an inoculum against serious, even life-threatening illness. Cancer has no respect for age and thus doctors should remain vigilant when patients voice significant & persistent concerns. #AYACSM |
| Mark Lewis @marklewismd A2. I promise the pendulum is swinging from paternalism to autonomy but, just like the arc of history bends slowly towards justice, it is a gradual process that requires continuous learning and adaptation by docs #ayacsm |
| Kimberly Miller, PhD @KimMillerPhD @marklewismd Yes, and rates are on the rise under 50. So, maybe there needs to be more peer to peer education and focused efforts on raising awareness in primary care. #CRCSM #AYACSM |
| Emily K. Drake @EK_Drake RT @TeamShan: @marklewismd I have advocated strongly for both awareness and education messaging for the well AYA and for improved end of life care for AYA patients. Despite the evidence, movement forward to address their concerns is extremely slow and gaps continue to exist :( #ayacsm |
| Stefanie Thomas, MD @StefThomasMD @EK_Drake @marklewismd 100% agree. The conversation has to happen. Just like other long term effects of treatment: heart failure, pulmonary fibrosis, secondary cancers, premature aging... The right time to start talking about survivorship is at diagnosis. #AYACSM |
| Mark Lewis @marklewismd A2. Fittingly enough, I see the Internet as the great (near-)equalizer. Information that was once only accessible to physicians is now available to everyone (paywalled journals remain an unfortunate exception) #ayacsm |
| Team Shan (Lorna Larsen) @TeamShan RT @marklewismd: @EK_Drake This is, sadly, true. We sometimes assume the "tinnitus of terror" after diagnosis. But the patient can't hear what was never said. Our good intentions to protect patients have sometimes undermined their full informed consent. Knowledge = power #AYACSM |
| Mark Lewis @marklewismd Q3: How do you make your voice heard as a patient/caregiver/advocate within the medical system? #AYACSM |
| Emily K. Drake @EK_Drake RT @StefThomasMD: @EK_Drake @marklewismd 100% agree. The conversation has to happen. Just like other long term effects of treatment: @EK_Drake @marklewismd 100% agree. The conversation has to happen. Just like other long term effects of treatment: heart failure, pulmonary fibrosis, secondary cancers, premature aging... The right time to start talking about survivorship is at diagnosis. #AYACSM |
| Team Shan (Lorna Larsen) @TeamShan RT @EK_Drake: @marklewismd @StefThomasMD I agree there are a number of barriers. However, I feel ethically that someone's SES is not a reason to not inform them. Also, we see this in areas where fertility preservation is covered too! #AYACSM |
| Deana Ruston 🇨🇦 ♿️ @deanaruston RT @marklewismd: Q3: Q3: How do you make your voice heard as a patient/caregiver/advocate within the medical system? #AYACSM |
| Emily K. Drake @EK_Drake RT @marklewismd: A2. Fittingly enough, I see the Internet as the great (near-)equalizer. Information that was once only accessible to physicians is now available to everyone (paywalled journals remain an unfortunate exception) #ayacsm |
| Stefanie Thomas, MD @StefThomasMD @EK_Drake @marklewismd I do empathize with both sides- as a family member of a AYA cancer patient and an AYA oncologist. Acknowledgment that it’s hard and providing training/resources to medical team members is needed. #AYACSM |
| Emily K. Drake @EK_Drake RT @marklewismd: Q3: Q3: How do you make your voice heard as a patient/caregiver/advocate within the medical system? #AYACSM |
| Team Shan (Lorna Larsen) @TeamShan RT @marklewismd: A2. Fittingly enough, I see the Internet as the great (near-)equalizer. Information that was once only accessible to physicians is now available to everyone (paywalled journals remain an unfortunate exception) #ayacsm |
| Emily K. Drake @EK_Drake RT @StefThomasMD: @EK_Drake @marklewismd I do empathize with both sides- as a family member of a AYA cancer patient and an AYA oncologist. Acknowledgment that it’s hard and providing training/resources to medical team members is needed. #AYACSM |
| Deana Ruston 🇨🇦 ♿️ @deanaruston A3: I'm a Patient & Family Advisor with one of our regional teaching hospitals here- both in the youth & adults spheres! #AYACSM |
| Mark Lewis @marklewismd @deanaruston Oh boy, yes. The key is in curating your own info stream to find reliable sources. I actually really like Twitter, which allows the hivemind to surface the best references for my reading & edification. #AYACSM |
| Kimberly Miller, PhD @KimMillerPhD @realslimsheyla I'm sure your voice is powerful--patients' testimony on these issues can save lives. #AYACSM |
| Emily K. Drake @EK_Drake @StefThomasMD @marklewismd I agree with this!! And it has to be training/resources that are properly implemented - with buy in from the team. Everyone is in this together #AYACSM |
| Mark Lewis @marklewismd A3. Stalin, sadly, said it best: a single death is a tragedy, a million deaths is a statistic. It's hard to wrap our minds around the 70000+ new AYA diagnoses (just in the US) annually. Personal narratives are incredibly powerful and should be shared ... #AYACSM |
| Team Shan (Lorna Larsen) @TeamShan @marklewismd It is difficult. The medical system holds your child's life (or your life) in their hands to have your voice heard is a delicate balance #ayacsm |
| Mark Lewis @marklewismd A3. ... assuming, of course, that patients are willing to relinquish some of their confidentiality to publicize their disease & its personal ramifications. Here, again, broader protection of healthcare coverage despite illness would be liberating. #AYACSM |
| Emily K. Drake @EK_Drake RT @TeamShan: @marklewismd It is difficult. The medical system holds your child's life (or your life) in their hands to have your voice heard is a delicate balance #ayacsm |
| Mark Lewis @marklewismd A3. Not to be political but on an election night in the States when one of the many issues under discussion is coverage of pre-existing conditions, it is surely of paramount importance to AYAs to have lifelong access to care. #AYACSM |
| Kimberly Miller, PhD @KimMillerPhD A3) As a researcher I often feel my advocacy is somewhat limited, but I can choose to listen to #AYA patients and work on issues of high relevance & importance to the community. I see that as my real job. #AYACSM |
| Emily K. Drake @EK_Drake RT @marklewismd: A3. Not to be political but on an election night in the States when one of the many issues under discussion is coverage of pre-existing conditions, it is surely of paramount importance to AYAs to have lifelong access to care. #AYACSM |
| Emily K. Drake @EK_Drake RT @KimMillerPhD: A3) As a researcher I often feel my advocacy is somewhat limited, but I can choose to listen to #AYA patients and work on issues of high relevance & importance to the community. I see that as my real job. #AYACSM |
| Stefanie Thomas, MD @StefThomasMD RT @marklewismd: A3. Not to be political but on an election night in the States when one of the many issues under discussion is coverage of pre-existing conditions, it is surely of paramount importance to AYAs to have lifelong access to care. #AYACSM |
| Mark Lewis @marklewismd @BoetChels I'm proud of you!!! I feel like some of the stigma of a cancer diagnosis has ebbed over time but there are miles to go before we sleep and it is only through your testimony that the public awareness can be raised #AYACSM |
| Kimberly Miller, PhD @KimMillerPhD @marklewismd YES YES YES. I'm a #HealthCareVoter for many reasons, but for #AYAs with #cancer access to lifelong affordable care is critical. What you said! #AYACSM |
| Mark Lewis @marklewismd @KimMillerPhD I carry a germline mutation that will make me prone to tumors the rest of my days. The thought of having coverage rescinded through a bad draw in the genetic lottery seems doubly unfair. #AYACSM |
| Emily K. Drake @EK_Drake As an #ayacsm advocate I've learned to speak up. To remember my colleagues who have died and what they were advocating for. To have difficult conversations. To fight to change people's minds and educate them about the needs of adolescents and young adults with cancer. |
| Mark Lewis @marklewismd Q4: What makes you feel the most empowered as a patient & advocate? #AYACSM |
| Deana Ruston 🇨🇦 ♿️ @deanaruston RT @marklewismd: Q4: Q4: What makes you feel the most empowered as a patient & advocate? #AYACSM |
| Stefanie Thomas, MD @StefThomasMD RT @marklewismd: @KimMillerPhD I carry a germline mutation that will make me prone to tumors the rest of my days. The thought of having coverage rescinded through a bad draw in the genetic lottery seems doubly unfair. #AYACSM |
| Mark Lewis @marklewismd @EK_Drake This. #AYACSM https://t.co/bOpOBsrRAN |
| Team Shan (Lorna Larsen) @TeamShan @marklewismd @BoetChels I share Shan's story in communities, high schools, college and university campuses. The impact has been positive & earlier diagnosis a wonderful outcome for young women, but unfortunately, there is decreased funding for these efforts & a lack of support for the well AYA #ayacsm |
| Emily K. Drake @EK_Drake RT @marklewismd: @EK_Drake This. #AYACSM https://t.co/bOpOBsrRAN |
| Kimberly Miller, PhD @KimMillerPhD @realslimsheyla Thank you for saying that. Since I don't directly work with patients (I'm not an MD) I sometimes feel remote. BUT, people are generous with their stories and their time AND their willingness to take our annoying surveys! So, we need to focus on what MATTERS. #AYACSM |
| Deana Ruston 🇨🇦 ♿️ @deanaruston A4: I LOVE sharing my story whether that be as an AYA thyroid cancer lifer, or my lived and living experience with mental illnesses and addiction! Connecting with others letting them know what's possible & being a peer supporter! #AYACSM |
| Chelsea Boet, MD @BoetChels @marklewismd A4. Having an informed discussion with my oncologist and surgical oncologist. Feeling heard, and getting excellent, non hurried explanations. #ayacsm |
| Emily K. Drake @EK_Drake RT @TeamShan: @marklewismd @BoetChels I share Shan's story in communities, high schools, college and university campuses. The impact has been positive & earlier diagnosis a wonderful outcome for young women, but unfortunately, there is decreased funding for these efforts & a lack of support for the well AYA #ayacsm |
| Mark Lewis @marklewismd A4. Lifelong learning. I'm not naive; I suspect there will always be a power imbalance between docs and patients. But to read & educate oneself about new advances in care is incredibly important and can influence conversations in clinic ... #ayacsm |
| Emily K. Drake @EK_Drake RT @KimMillerPhD: @realslimsheyla Thank you for saying that. Since I don't directly work with patients (I'm not an MD) I sometimes feel remote. BUT, people are generous with their stories and their time AND their willingness to take our annoying surveys! So, we need to focus on what MATTERS. #AYACSM |
| Emily K. Drake @EK_Drake RT @deanaruston: A4: A4: I LOVE sharing my story whether that be as an AYA thyroid cancer lifer, or my lived and living experience with mental illnesses and addiction! Connecting with others letting them know what's possible & being a peer supporter! #AYACSM |
| Kimberly Miller, PhD @KimMillerPhD @marklewismd I hear you. I'm from a BRCA 2 affected family. It's completely unfair that the gains we've made in health care access is continuously threatened. #AYACSM |
| Mark Lewis @marklewismd A4 ... as an oncologist I am thrilled when patients bring in materials they've acquired online (either an article or a https://t.co/NwCGCpxrvC search string) and want to discuss them. There is such value in that dialogue ... #AYACSM |
| Emily K. Drake @EK_Drake RT @BoetChels: @marklewismd A4. Having an informed discussion with my oncologist and surgical oncologist. Feeling heard, and getting excellent, non hurried explanations. #ayacsm |
| Emily K. Drake @EK_Drake RT @marklewismd: A4. Lifelong learning. I'm not naive; I suspect there will always be a power imbalance between docs and patients. But to read & educate oneself about new advances in care is incredibly important and can influence conversations in clinic ... #ayacsm |
| Kimberly Miller, PhD @KimMillerPhD #HealthCareVoter #AYACSM |
| Kimberly Miller, PhD @KimMillerPhD @StefThomasMD @realslimsheyla Ok, good to hear. I mean, all surveys are a little annoying. :) #AYACSM |
| Mark Lewis @marklewismd A4 ... there needs to be recognition that patients inhabit their bodies 24/7. That brings a level of self-knowledge will never be accessible to even the most perceptive clinician. If they don't ask, tell. #AYACSM |
| Kimberly Miller, PhD @KimMillerPhD RT @deanaruston: A4: A4: I LOVE sharing my story whether that be as an AYA thyroid cancer lifer, or my lived and living experience with mental illnesses and addiction! Connecting with others letting them know what's possible & being a peer supporter! #AYACSM |
| Chelsea Boet, MD @BoetChels @marklewismd A colon cancer pt education group called colontown focuses on educating and empowering patients to have those conversations and seek out their own trials. It’s amazing. #ayacsm #colontown |
| Stefanie Thomas, MD @StefThomasMD @marklewismd A4. Information. Sitting down and having a conversation about why the recommendation is what it is. Though, I recognize that I come from a privileged place of having access to medical literature, and training in how to interpret it. #AYACSM |
| Stefanie Thomas, MD @StefThomasMD RT @marklewismd: A4 ... there needs to be recognition that patients inhabit their bodies 24/7. That brings a level of self-knowledge will never be accessible to even the most perceptive clinician. If they don't ask, tell. #AYACSM |
| Mark Lewis @marklewismd @BoetChels cc: @KatecBowler who has bravely & eloquently shared her own experience, including with clinical trials: https://t.co/bDRrGKG2ct #CRCSM #AYACSM |
| Kimberly Miller, PhD @KimMillerPhD @deanaruston I know you must know this, but the power and impact of sharing your story to others is enormous. Thank you! #AYACSM |
| Deana Ruston 🇨🇦 ♿️ @deanaruston RT @KimMillerPhD: @deanaruston I know you must know this, but the power and impact of sharing your story to others is enormous. Thank you! #AYACSM |
| Emily K. Drake @EK_Drake @realslimsheyla @KimMillerPhD Thank you. It's been an honour to have had patients share their stories with me. #AYACSM |
 | Amanda Crowell Itliong @MIShouldTalk @marklewismd A4: Being included in the conversation as the “expert” I am. Sometimes I get invited to the table as a patient because of my education and professional experience but really it’s my 10 years of cancer that they need to hear from. #AYACSM |
| Kimberly Miller, PhD @KimMillerPhD @marklewismd Connecting with the community like tonight! #AYACSM |
| Emily K. Drake @EK_Drake RT @marklewismd: A4 ... there needs to be recognition that patients inhabit their bodies 24/7. That brings a level of self-knowledge will never be accessible to even the most perceptive clinician. If they don't ask, tell. #AYACSM |
| Emily K. Drake @EK_Drake RT @BoetChels: @marklewismd A colon cancer pt education group called colontown focuses on educating and empowering patients to have those conversations and seek out their own trials. It’s amazing. #ayacsm #colontown |
| Emily K. Drake @EK_Drake @BoetChels @marklewismd I also want to add that my dear friend @tamikafelder is doing amazing work empowering women with @IamCervivor #AYACSM |
| Emily K. Drake @EK_Drake RT @StefThomasMD: @marklewismd A4. Information. Sitting down and having a conversation about why the recommendation is what it is. Though, I recognize that I come from a privileged place of having access to medical literature, and training in how to interpret it. #AYACSM |
| Mark Lewis @marklewismd @EK_Drake @BoetChels @tamikafelder @IamCervivor I like to think we will see cervical cancer nearly eradicated in our lifetimes if we can get widespread acceptance of the HPV vaccine. Thank you for your good work!!! #AYACSM |
| Emily K. Drake @EK_Drake RT @MIShouldTalk: @marklewismd A4: @marklewismd A4: Being included in the conversation as the “expert” I am. Sometimes I get invited to the table as a patient because of my education and professional experience but really it’s my 10 years of cancer that they need to hear from. #AYACSM |
| Amanda Crowell Itliong @MIShouldTalk @marklewismd A4: Late to #AYACSM because I’ve been at an oncologists MI quality meeting. Was one of 2 patients there talking about end of life and it was scary to think what they might have decided without hearing our voices. |
| Kimberly Miller, PhD @KimMillerPhD RT @marklewismd: @EK_Drake @BoetChels @tamikafelder @IamCervivor I like to think we will see cervical cancer nearly eradicated in our lifetimes if we can get widespread acceptance of the HPV vaccine. Thank you for your good work!!! #AYACSM |
| Deana Ruston 🇨🇦 ♿️ @deanaruston Thank you @KimMillerPhD!! Sharing my story is healing to me in many ways- knowing I'm helping others know that they aren't alone, connecting with peers who may beginning their journey. It helps me just as it helps them! It fuels me to keep going. #AYACSM https://t.co/ofL56HEuBU |
| Emily K. Drake @EK_Drake @realslimsheyla #AYACSM https://t.co/wXE3CarZpN |
| Kimberly Miller, PhD @KimMillerPhD @EK_Drake @BoetChels @marklewismd @tamikafelder @IamCervivor @tamikafelder is an incredible inspiration! #AYACSM |
| Kimberly Miller, PhD @KimMillerPhD @realslimsheyla I go way back with Irreplaceable on repeat to feel like a badass! #AYACSM |
| Stefanie Thomas, MD @StefThomasMD @marklewismd @EK_Drake @BoetChels @tamikafelder @IamCervivor Yes! Australia is definitely moving that way! https://t.co/lyrQK8pLnC #AYACSM |
| Mark Lewis @marklewismd @BoetChels @EK_Drake @tamikafelder @IamCervivor This was one of my favorite @US_FDA decisions in recent memory: https://t.co/olfA9MqbMY #ayacsm |
| Team Shan (Lorna Larsen) @TeamShan RT @marklewismd: A4 ... there needs to be recognition that patients inhabit their bodies 24/7. That brings a level of self-knowledge will never be accessible to even the most perceptive clinician. If they don't ask, tell. #AYACSM |
| Kimberly Miller, PhD @KimMillerPhD @realslimsheyla @StefThomasMD GOOD TO KNOW! We give all that stuff to offset the annoying.#AYACSM |
| Team Shan (Lorna Larsen) @TeamShan RT @marklewismd: A3. Stalin, sadly, said it best: A3. Stalin, sadly, said it best: a single death is a tragedy, a million deaths is a statistic. It's hard to wrap our minds around the 70000+ new AYA diagnoses (just in the US) annually. Personal narratives are incredibly powerful and should be shared ... #AYACSM |
| Kimberly Miller, PhD @KimMillerPhD @deanaruston And that's the win-win! But it's important work. :) #AYACSM |
| Emily K. Drake @EK_Drake The @tamikafelder is a legend and a true world hero (not just American) #AYACSM |
| Stephanie Fischer @RarePOV RT @EK_Drake: As an #ayacsm advocate I've learned to speak up. To remember my colleagues who have died and what they were advocating for. To have difficult conversations. To fight to change people's minds and educate them about the needs of adolescents and young adults with cancer. |
| Emily K. Drake @EK_Drake RT @MIShouldTalk: @marklewismd A4: @marklewismd A4: Late to #AYACSM because I’ve been at an oncologists MI quality meeting. Was one of 2 patients there talking about end of life and it was scary to think what they might have decided without hearing our voices. |
| Kimberly Miller, PhD @KimMillerPhD @marklewismd @realslimsheyla I'll watch that all night. #Midterm2018 #AYACSM |
| Stefanie Thomas, MD @StefThomasMD @marklewismd @EK_Drake @BoetChels @tamikafelder @IamCervivor Yes! Super bummed I can’t make it this year! Looks like a great program! @EK_Drake you have to keep us updated while you are there! #AYACSM |
 | Clarissa Schilstra, PhD @CESchilstra RT @EK_Drake: As an #ayacsm advocate I've learned to speak up. To remember my colleagues who have died and what they were advocating for. To have difficult conversations. To fight to change people's minds and educate them about the needs of adolescents and young adults with cancer. |
| Kimberly Miller, PhD @KimMillerPhD @realslimsheyla @StefThomasMD hahahaha will do! We are as generous as the NIH and our IRB lets us be! #AYACSM |
| Emily K. Drake @EK_Drake I also want to add to this that @TeamShan has done incredible work in early detection and palliative care for young women and #BreastCancer #BCSM #ayacsm |
| Emily K. Drake @EK_Drake I was enjoying our chat so much I forgot to end it!!!!! Thank you @marklewismd for guest moderating tonight! #ayacsm |
| Stefanie Thomas, MD @StefThomasMD RT @KimMillerPhD: A3) As a researcher I often feel my advocacy is somewhat limited, but I can choose to listen to #AYA patients and work on issues of high relevance & importance to the community. I see that as my real job. #AYACSM |
| Kimberly Miller, PhD @KimMillerPhD @realslimsheyla @marklewismd I followed you so you I can hit you up with surveys in exchange for caffeine! :) #AYACSM |
| Team Shan (Lorna Larsen) @TeamShan RT @EK_Drake: I also want to add to this that @TeamShan has done incredible work in early detection and palliative care for young women and #BreastCancer #BCSM #ayacsm |
| Stefanie Thomas, MD @StefThomasMD RT @BoetChels: @marklewismd A4. Having an informed discussion with my oncologist and surgical oncologist. Feeling heard, and getting excellent, non hurried explanations. #ayacsm |
| Team Shan (Lorna Larsen) @TeamShan @EK_Drake Thank you!! #ayacsm |
| Mark Lewis @marklewismd @EK_Drake All good things ... Thank you so much for having me. For all in the world that is disheartening, there is nothing that lifts my mood quite like kindred spirits. Good night everyone and I wish you all the best of health! #AYACSM |
| Emily K. Drake @EK_Drake The next tweet chat will be December 4th at 8pm ET!! That day I will be in #Australia talking about #ayacsm at #AYAcancercongress In our 5 years we have never presented on this community. So, it's exciting to share with an academic audience!! https://t.co/iYqZ4WswdX |
| Deana Ruston 🇨🇦 ♿️ @deanaruston RT @EK_Drake: The next tweet chat will be December 4th at 8pm ET!! That day I will be in #Australia talking about #ayacsm at #AYAcancercongress In our 5 years we have never presented on this community. So, it's exciting to share with an academic audience!! https://t.co/iYqZ4WswdX |
| Kimberly Miller, PhD @KimMillerPhD @marklewismd @EK_Drake Mark, thank you for leading this fantastic tweet chat. It's been a nice respite during a tense political day. Good night and thank you again for the inspiration! #AYACSM |
| Stefanie Thomas, MD @StefThomasMD A good election night distraction. #AYACSM |
| Kimberly Miller, PhD @KimMillerPhD Yep. #AYACSM |
| Kimberly Miller, PhD @KimMillerPhD @StefThomasMD SERIOUSLY! And now back to our phones. #AYACSM |
| Emily K. Drake @EK_Drake RT @marklewismd: @EK_Drake All good things ... Thank you so much for having me. For all in the world that is disheartening, there is nothing that lifts my mood quite like kindred spirits. Good night everyone and I wish you all the best of health! #AYACSM |
| Amanda Crowell Itliong @MIShouldTalk @marklewismd @EK_Drake Always love learning from @marklewismd and @EK_Drake and the #AYACSM community! I got really riled up at this meeting about some stuff that once I organize my thoughts I want to hear what all y’all think. In the meantime, to those who are also freaking out tonight, sending love! |
 | Shaalan Beg MD MBA FASCO @ShaalanBeg RT @marklewismd: A3. Not to be political but on an election night in the States when one of the many issues under discussion is coverage of pre-existing conditions, it is surely of paramount importance to AYAs to have lifelong access to care. #AYACSM |
| Emily K. Drake @EK_Drake @MIShouldTalk @marklewismd I would love to hear. The focus of my dissertation is around the psychosocial experiences of young adults with metastatic/advanced cancer. You are the expert - would love to know your thoughts! #AYACSM |
 | Mike Thompson, MD, PhD, FASCO @mtmdphd RT @marklewismd: A3. Not to be political but on an election night in the States when one of the many issues under discussion is coverage of pre-existing conditions, it is surely of paramount importance to AYAs to have lifelong access to care. #AYACSM |
#ayacsm content from Twitter.