Bladder Cancer Survivor & Patient Advocate, Speaker, Author "Gratitude in the Storm"

Austin, TX
Joined January 2011
Exciting news for BCG-unresponsive #NMIBC patients, and now for those with high-grade papillary-only disease, not just CIS. FDA used existing evidence rather than requiring a new trial. For patients, that’s time we don’t have to lose. #BladderCancer
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Only you could make a confidence interval funny (“wide enough to drive a cystoscope through” 😄). From the patient side: “recurrence 33–75%” isn’t a statistic when you’re the one deciding. It’s the next few years of your life. Honest data like this matters.
In 2006 we reported 44 patients with non-muscle-invasive micropapillary bladder cancer treated at MD Anderson. 27 got BCG. At a median 30 months, only 5 of them were disease-free with their bladder in place. Twenty years on, we went back to the literature to ask whether that picture still holds. New meta-analysis in @EurUrolOncol 🧵1/ @SagarRPatelMD @AmandaMyersMD @UrogerliMD @JoshMeeks @Agarwal_CaB @SWilliams_MD @AndreaNecchi @LAUrology_NL @paolo_gontero @nnavai @JosephBBlack #OncSurgery #ESMO2026
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When a patient hears “complete response,” we hear “it’s gone.” That gap matters. Grateful to @shilpaonc for asking what response means to us, and to work alongside Rick Bangs again. @IBCG_BladderCA #BladderCancer #IBCG2026 @urotoday
What does “response” really mean to patients with #BladderCancer? Is it CR? Cure? Or maintaining a great QoL with cancer, even without a CR? Loved this insightful conversation with patient advocates #RickBangs & @MargoWickersham at #IBCG2026 @IBCG_BladderCA In the current therapeutic era, we need to rethink the terms we use & redefine success beyond scans; to include living well, QOL & what matters most to patients to work towards helping them achieve their overall goals. Because the goal is not just surviving with cancer, but thriving. @UroDocAsh @spsutkaMD @UrogerliMD @BladderCancerUS @WorldBladderCan @montypal @PGrivasMDPhD @crisbergerot @ASCO @AmerUrological @Uroweb @DrYukselUrun @CleClinicMD @Uromigos @OncBrothers @fumikochino @minasedrakmd Full discussion here 🎥 bit.ly/4hKmcfH
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Sources: 1Shu TD, et al. Cancer Causes & Control. 2023;34:521–531. doi:10.1007/s10552-023-01679-x 2"Unveiling the Female Factor." Cancers. 2026;18(2):308. doi:10.3390/cancers18020308
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Sources: 1Shu TD, et al. Cancer Causes & Control. 2023;34:521–531. doi:10.1007/s10552-023-01679-x 2"Unveiling the Female Factor." Cancers. 2026;18(2):308. doi:10.3390/cancers18020308
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Happy #ostomyawareness day! How do I keep my #ostomy dry walking in the rain? #ostomylife #ostomate @UOAA #grateful
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Richly deserved! I especially love hearing that you plan to continue achieving:) We still need you!
Deeply honored to receive the IBCN Lifetime Achievement Award. This one is particularly special. IBCN has been a big part of my life for many years, and many colleagues have become close friends along the way. And receiving it from @pcvblack made it even better. I used to evaluate him. Now apparently he gets to evaluate my lifetime! (His AI skills, however, remain a work in progress). Thank you to everyone who has been part of the journey. Although, as I said tonight, I certainly hope the “achievement” part isn’t over yet! 😊 #BladderCancer #IBCN @IBCN1997 @mouwlab @LDyrskjot @WesKassouf #OncSurgery @IBCG_BladderCA @UTMDAnderson
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Margo R. Wickersham retweeted
Deeply honored to receive the IBCN Lifetime Achievement Award. This one is particularly special. IBCN has been a big part of my life for many years, and many colleagues have become close friends along the way. And receiving it from @pcvblack made it even better. I used to evaluate him. Now apparently he gets to evaluate my lifetime! (His AI skills, however, remain a work in progress). Thank you to everyone who has been part of the journey. Although, as I said tonight, I certainly hope the “achievement” part isn’t over yet! 😊 #BladderCancer #IBCN @IBCN1997 @mouwlab @LDyrskjot @WesKassouf #OncSurgery @IBCG_BladderCA @UTMDAnderson
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It’s so encouraging to see more conversations about women with bladder cancer! Increasing awareness drives earlier detection and saves lives.
🚺 Addressing gaps in support for women with bladder cancer, closing #BladderCancerForum26 1 in 4 people diagnosed with bladder cancer is a woman. Our survey found 69% were diagnosed with another condition first, and 39% of those were told it was a UTI. Christine La Rose moderated Angela Pelletier, Hilda Kwok and Dr Makarand Khochikar. 💬 The myth that bladder cancer is more aggressive in women? The biology is the same. What differs is how long the diagnosis takes. Learn more here: worldbladdercancer.org/news_… #BladderCancer #WomensHealth #PatientAdvocacy
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Bladder Cancer patients sharing their stories spreads awareness and hope!
💬 Capturing lived experience with bladder cancer, at #BladderCancerForum26 🗣 Amit Rele, diagnosed at 45 with no symptoms, three years on from bladder removal and back to golf, the gym and the sea. 🗣 Junichiro Sano, vice-president of Japanese Bladder Cancer Patient Organisation, could not find another bladder cancer survivor in Japan, so he built the group that did not exist. 🗣 Amy Samuel, who refused to wait 45 days for a biopsy result in Senegal, and has since put bladder cancer on national media across West Africa. 👉 Learn more here: worldbladdercancer.org/news_… #BladderCancer #PatientAdvocacy
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This. Each of us, regardless of the work we do, seek to feel heard and accepted. The people who provide this to us can be found across all walks of life:)
This resonates. One lesson I’ve learned over the years: build your own support network, both inside and outside the work environment. It matters more than you think. @PGrivasMDPhD @nnavai @shilpaonc @montypal @UrogerliMD @SpiessPhilippe @siadaneshmand @HenryKuerer
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Austin 4/2 Home Available for @aclfestival Oct.1 - 13. Pool, hot tub, fire pit, grill, sleeps 9, gorgeous chef's kitchen. Away from the crowds and a uber ride to ACL music festival. Check rates and availability vrbo.com/5440265? DM me if interested in saving on fees! #austin #shorttermrental
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Are you or anyone you know planning to come to Austin, TX for @aclfestival ? Brand new to the short term rental market is our 4 bd/2ba home with Pool/Hot tub, Fire Pit, Grill 20 min. ride to ACL vrbo.com/5440265
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Margo R. Wickersham retweeted
Keanu Reeves a fêté ses 62 ans le 2 septembre 2026. Sandra Bullock, sa partenaire dans le film Speed, dit de lui : « Son père l’a abandonné lorsqu’il avait trois ans, sa fille est morte à l’âge de huit mois, sa compagne est décédée dans un accident de voiture, son meilleur ami a succombé à une overdose… Et malgré tout cela, il n’a jamais perdu sa lumière, son monde ne s’est jamais effondré. Lors du tournage de The Lake House, il a surpris une conversation entre deux assistants : une femme en pleurs expliquait qu’elle risquait de perdre sa maison si elle ne payait pas 20 000 dollars. Keanu a aussitôt transféré l’argent sur son compte. Avec les gains de la trilogie Matrix, il a offert plusieurs millions de dollars à l’équipe des effets spéciaux, qu’il considérait comme les véritables héros du film. Refusant de recourir aux cascadeurs sauf pour les scènes les plus dangereuses, il a remercié chacun de ces “héros” en leur offrant une moto Harley-Davidson. Aujourd’hui encore, il se déplace en métro ou en bus quand c’est plus pratique, sans jamais éprouver de honte. De nombreux hôpitaux affirment avoir reçu des dizaines de millions de dollars de sa part. Pour certains films, il a accepté de renoncer à 90 % de son salaire afin de permettre à la production d’embaucher d’autres acteurs. En 1997, un paparazzi l’a surpris assis dans la rue à côté d’un sans-abri, partageant son petit-déjeuner et écoutant son histoire. Tout ce que nous savons de Keanu Reeves, ce n’est pas lui qui nous l’a dit, mais les personnes qui ont bénéficié de son aide et de sa générosité. Il n’a jamais cherché à en parler. Malgré toutes les épreuves qu’il a traversées, il aurait pu adopter une vision sombre et désespérée de la vie. Mais non : il a choisi de rester un homme bon, dans un monde qui ne l’est pas toujours. » Plus qu’un acteur talentueux, Keanu Reeves est un véritable modèle d’humilité et de générosité ❤️🙏
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I’m so honored to share my experience and perspectives with this outstanding bladder cancer community!
I haven’t posted much during #IBCG26, as wonderfully busy as it’s been, but I have to post this. IMHO, the most important part of our meeting: the Patient Perspective panel. A reminder of why we are all here. @IBCG_BladderCA @spsutkaMD @LAUrology_NL @BladderCancerUS @WorldBladderCan
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An example of the impactful work that @IBCG_BladderCA does to improve diagnosis and treatment guidelines that directly help bladder cancer patients get the care they need.
Important change in the 2026 @AmerUrological NMIBC Guidelines: all high-grade Ta tumors are now classified as high-risk. This reduces a long-standing source of heterogeneity in the intermediate-risk group and should improve risk-appropriate treatment for patients, while creating cleaner, more meaningful populations for clinical trials. Great to see the evidence translate into practice. @IBCG_BladderCA @UrogerliMD @pjhensley11 @AmirHorowitz @mouwlab @spsutkaMD @shilpaonc @AndreaNecchi @LAUrology_NL @karima_oualla @PGrivasMDPhD @marigfern @SpiessPhilippe @UroCancerMD
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What happens when urologist oncologists, members of industry and patient advocates get together? #IBCG26 Creative ideas for how to improve the patient experience and create global standards for treatment and care of bladder cancer patients - and a lot of fun! internationalbladdercancergroup #bladdercancer @IBCG_BladderCA @BladderCancerUS @WorldBladderCan @BCAN_Research @urotoday @UroDocAsh
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This has been an enlightening and fun! 🙏I have so much #gratitude for our #bladdercancer community.
Could not be more honored to have shared the stage with this amazing group of patient advocates. Thanks @UroDocAsh and @IBCG_BladderCA for giving us a voice. @MargoWickersham @michellecolero @WorldBladderCan @spsutkaMD @LAUrology_NL @BladderCancerUS
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I’m so grateful to join the discussions about patient experience with urology oncology clinicians from around the world at my first @IBCG_BladderCA Retreat. #patientadvocacy #bladdercancer #IBCG26
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