Tracie Titus (@notaspare_kcadv) 's Twitter Profile
Tracie Titus

@notaspare_kcadv

Healthcare / Life Sciences Technology Leader. Kidney Cancer Patient Advocate and Caregiver; interest area = bilateral, multifocal RCC

ID: 1636525459868401665

calendar_today17-03-2023 00:31:00

41 Tweet

93 Followers

289 Following

Dena Battle (@rccadvocate) 's Twitter Profile Photo

The big news for #kidneycancer doctors at #ASCO2023 may have been updates from combination trials including CONTACT-03, KEYNOTE426, and CLEAR. But I would say the big news for #kidneycancer patients was this call to action from David Braun. Aim for a Cure.

The big news for #kidneycancer doctors at #ASCO2023 may have been updates from combination trials including CONTACT-03, KEYNOTE426, and CLEAR. But I would say the big news for #kidneycancer patients was this call to action from <a href="/BraunMDPhD/">David Braun</a>. Aim for a Cure.
Mark Lewis, MD, FASCO (@marklewismd) 's Twitter Profile Photo

I had a medical student shadow me all day in oncology clinic and, when I asked them at the end what surprised them the most, they paused to reflect & then said “the hope”

Tracie Titus (@notaspare_kcadv) 's Twitter Profile Photo

Context is everything with bilateral, multifocal #papillary #rcc and the post-surgery update from the amazing Mark Ball, MD, FACS: “We removed 7 tumors this time from this kidney.” “Wow! Just 7?” “Yeah, I know. Only 7… well, plus a bunch of baby tumors.” Not this time, baby tumors!

KCCure (@kccure) 's Twitter Profile Photo

Two major health conditions, four different specialists, three health portals, and ONE major decision. Tracie Titus knocks it out of the park illustrating the navigational burden #kidneycancer pts face. #AUA2024

Two major health conditions, four different specialists, three health portals, and ONE major decision. <a href="/notaspare_kcadv/">Tracie Titus</a> knocks it out of the park illustrating the navigational burden #kidneycancer pts face. #AUA2024
KCCure (@kccure) 's Twitter Profile Photo

Today! Come by #AUA2024 Patient perspectives at 3:15 to be inspired by #kidneycancer patient Carie Gort and learn how she’s managing treatment related diarrhea through dietary changes.

Today! Come by #AUA2024 Patient perspectives at 3:15 to be inspired by #kidneycancer patient Carie Gort and learn how she’s managing treatment related diarrhea through dietary changes.
Tracie Titus (@notaspare_kcadv) 's Twitter Profile Photo

“Maybe I wasn’t weak; maybe cancer was just hard.” Thanks Katie Coleman for sharing your inspiring story during Patient Perspectives at #AUA24.

“Maybe I wasn’t weak; maybe cancer was just hard.”

Thanks <a href="/kaydaustin/">Katie Coleman</a> for sharing your inspiring story during Patient Perspectives at #AUA24.
KCCure (@kccure) 's Twitter Profile Photo

How did pts. with rare RCCs answer this poll? Posted in KCCure non-clear cell pt grps (1641 total pts.) 5/25-5/27. 180 pts. voted. (44% chRCC, 38% pRCC, 7% NOS, 4% tRCC). Results: 59% maintain non-clear cell, 24% other/neither, 17% rename rare variant. #evidencebased pt advocacy

How did pts. with rare RCCs answer this poll? Posted in KCCure non-clear cell pt grps (1641 total pts.) 5/25-5/27. 180 pts. voted. (44% chRCC, 38% pRCC, 7% NOS, 4% tRCC). Results: 59% maintain non-clear cell, 24% other/neither, 17% rename rare variant. #evidencebased pt advocacy
KCCure (@kccure) 's Twitter Profile Photo

Want to help improve care for #kidneycancer? Join the 400 patients who have already shared their voice! Our latest survey is focused on measuring disease burden and assessing pt views on what it means to be cured. surveymonkey.com/r/KCCure24

Chuck Stravin (@cjstrav3) 's Twitter Profile Photo

Want to see what making a difference looks like? Thank you KidneyCAN for mobilizing these amazing people in the fight against Kidney Cancer. What an amazing day it was today!! Coming together to ACCELERATE CURES! $0 to $285m in 7 years. We NEED more. Let's GO! Toni Choueiri, MD

Want to see what making a difference looks like? Thank you <a href="/kidneycan/">KidneyCAN</a> for mobilizing these amazing people in the fight against Kidney Cancer.  What an amazing day it was today!!  Coming together to ACCELERATE CURES!  $0 to $285m in 7 years. We NEED more.  Let's GO! <a href="/DrChoueiri/">Toni Choueiri, MD</a>
Dena Battle (@rccadvocate) 's Twitter Profile Photo

#kidneycancer Patients want to be cured. They will accept treatments that increase survival - but they want cure. Thanks David Braun for continuing to repeat this mantra and for your efforts to make it a reality. shorturl.at/OIVjE

KCCure (@kccure) 's Twitter Profile Photo

#GU35 44% of #kidneycancer pts spend HOURS thinking about cancer. In last 90 days, 36% have gone to ER. >1/3 of patients say that cancer always/often impacts their ability to eat, sleep and engage with family and friends. Surviving is not the same as living. #diseaseburdenzero

#GU35 44% of #kidneycancer pts spend HOURS thinking about cancer. In last 90 days, 36% have gone to ER. &gt;1/3 of patients say that cancer always/often impacts their ability to eat, sleep and engage with family and friends. Surviving is not the same as living. #diseaseburdenzero
Tracie Titus (@notaspare_kcadv) 's Twitter Profile Photo

Thrilled to be presenting at #AUA25 about using patient stories to shift the narrative around living with active surveillance for kidney cancer. On our way! #kccure

Thrilled to be presenting at #AUA25 about using patient stories to shift the narrative around living with active surveillance for kidney cancer. On our way! #kccure
Laura Esfeller (@lauraesfeller) 's Twitter Profile Photo

“We have to shift the narrative on small renal masses from fear-based to fact-based.” -the phenomenal Tracie Titus on #activesurveillance #kidneycancer #AUA2025

“We have to shift the narrative on small renal masses from fear-based to fact-based.” -the phenomenal <a href="/notaspare_kcadv/">Tracie Titus</a> on #activesurveillance #kidneycancer #AUA2025
Tracie Titus (@notaspare_kcadv) 's Twitter Profile Photo

Thank you to the Amer. Urol. Assn. for highlighting the Patient Perspective at #AUA25! And thank you to the kidney cancer patients and caregivers who share their stories so we can continue advancing patient-centered care. KCCure