Jo Taylor @abcdiagnosis
Founder of After Breast Cancer Diagnosis & living with secondaryBC, #breastreconstruction, signposting, support #patientadvocate #blogger, #campaigner #activist abcdiagnosis.co.uk Manchester, England Joined October 2012-
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@KerrynSidney @abcdiagnosis @drlucyhooper Yip, seems ironic,when risk increase with age. I would consider a private mammogram once every 3 years (so you would have NHS screen and 18months later private) and repeat.
This would have been great to have available in the UK when I had a #lumpectomy during primary breast cancer @abcdiagnosis @bccww @macmillancancer @CoppaFeelPeople @ShineCancerSupp @BreastCancerNow @NHSuk @NHSEngland @NHSScotland @WelshGovernment @SeneddWales @niassembly
This would have been great to have available in the UK when I had a #lumpectomy during primary breast cancer @abcdiagnosis @bccww @macmillancancer @CoppaFeelPeople @ShineCancerSupp @BreastCancerNow @NHSuk @NHSEngland @NHSScotland @WelshGovernment @SeneddWales @niassembly
@RICKLIN4TH @abcdiagnosis @drlucyhooper So why, having had breast cancer at 39, have I gone to 3 yearly mammograms instead of previously having annual just because I’m over 50?
There also needs to be more understanding and help with better imaging for #lobular. Due to its single cell MO,(lacking e cadherin)metastis often not seen in other areas of the body. We dont even get MRI for breast follow up, even when mammo didnt spot the original cancer.
There also needs to be more understanding and help with better imaging for #lobular. Due to its single cell MO,(lacking e cadherin)metastis often not seen in other areas of the body. We dont even get MRI for breast follow up, even when mammo didnt spot the original cancer.
@abcdiagnosis @drlucyhooper I agree . The study shows that around 11% of woman with a breast cancer will get a second breast cancer over a 25 yr follow up which is a similar risk of being a BRCA 1 gene carrier.
@abcdiagnosis It would be nice if they could stratify the gene carriers (and moderate risk vs high risk carriers) and non carriers because lumping everyone together skews the results.
@clastee @abcdiagnosis I thought exactly the same! Will they put high risk screening in place? Who knows x
@abcdiagnosis Agreed. And once it’s documented it provides more tools for advocacy. I just wish it wasn’t so present in my daughter’s life.
@jenny26736481 @clastee @bccww @abcdiagnosis No like here either! Keep on keeping on xx
@abcdiagnosis Very interesting read. I had TNBC when I was 55. What will be will be. I have a good balance of life’s for living; healthy eating and exercise and life’s for living; wine, cake and sofa time.
@abcdiagnosis You know, there’s a difference in “knowing” then seeing it proven in research and having THAT kind of knowing. I’m just…well feeling sick to my stomach at the moment about what that means for my girl. 🥺
@clastee @abcdiagnosis Ughh 49 for me stage 3. All good for now.
@abcdiagnosis I find age at diag a strange one. I never know what age bracket I fit into having been diag with synchronous BC at age 50 & 4 months. I’m presuming I fit in to older category but one of my tumours was Stage 3 & over 5cms so was likely to hv been growing whilst I was in my 40s!
@bccww @clastee @abcdiagnosis Thank you. I am still here & enjoying every day.
@jenny26736481 @clastee @abcdiagnosis How rotten x didn’t want to like because truly sorry you’ve going through that.
@clastee @bccww @abcdiagnosis Breast Cancer at 29 Breast Cancer at 37 Secondary breast cancer in my 2011
@clastee @abcdiagnosis I'm a statistic! 😒 First bc 2005 ( yep, under 50) , second 2022.
@clastee @ThanksCancer @abcdiagnosis It does get better. Can’t say it won’t rear its head on occasion, you move forward.
@clastee @abcdiagnosis 3 for me so far!
@abcdiagnosis Great for why everyone with breast cancer should be offer genetic testing to reach as many people as possible. So sad to think someone may survive breast cancer to die from a preventable ovarian cancer #BRCA
Thanks Cancer! @ThanksCancer
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1K Followers 504 Following Bringing together organisations that commission & provide cancer services, enabling effective & co-ordinated partnership working to improve patient experience@RICKLIN4TH @abcdiagnosis @drlucyhooper So why, having had breast cancer at 39, have I gone to 3 yearly mammograms instead of previously having annual just because I’m over 50?
There also needs to be more understanding and help with better imaging for #lobular. Due to its single cell MO,(lacking e cadherin)metastis often not seen in other areas of the body. We dont even get MRI for breast follow up, even when mammo didnt spot the original cancer.
This is no shock, this has been known for years. The younger you are the more risk there is especially if you live a long time after a primary cancer ... #notrocketscience now here comes the long paid research piece that they did... #breastcancer cam.ac.uk/research/news/…
@abcdiagnosis @drlucyhooper I agree . The study shows that around 11% of woman with a breast cancer will get a second breast cancer over a 25 yr follow up which is a similar risk of being a BRCA 1 gene carrier.
@abcdiagnosis You know, there’s a difference in “knowing” then seeing it proven in research and having THAT kind of knowing. I’m just…well feeling sick to my stomach at the moment about what that means for my girl. 🥺
This is no shock, this has been known for years. The younger you are the more risk there is especially if you live a long time after a primary cancer ... #notrocketscience now here comes the long paid research piece that they did... #breastcancer cam.ac.uk/research/news/…
@abcdiagnosis @hopefulgirlxxx That's encouraging. Thanks xx
@shushitssusan Wow! @abcdiagnosis Jo had a brain met and she's doing incredible xx
This is an ENDEMIC problem & discrimination needs to stop. Patients not being taken seriously or ignored is unacceptable. Huge inequalities for ethic minorities within a system that already had huge inequalities for everyone. @NHSEngland don’t even mandate different coloured…
theguardian.com/inequality/202… More news about discrepancies with cancer diagnosis & ethnic minorities @abcdiagnosis @bccww @METUPUKorg @Make2ndsCount @BreastCancerNow @macmillancancer @CancerBlackCare @CRUKresearch @BritAsianCancer @SBInterCentre @ARC_S_L @RMresearch_ @appg_reie
Hopefully this will help with brain mets as well @abcdiagnosis @bccww @METUPUKorg @Make2ndsCount @macmillancancer @CoppaFeelPeople @ShineCancerSupp @SeneddWales @WelshGovernment bbc.co.uk/news/articles/…
Happy Sunday!!!!! ☺️
Happy Sunday & FUCK trump 🖕🏽
Sheila @swaggsheila1 had the best smile. She was a woman of deep, deep faith. She was a veteran, a mom, a clinical trial champion, and she challenged the clinical trial machine to do better. She was a friend and I will miss her. #bcsm
This week we lost @swaggsheila1, a fierce advocate for the entire metastatic community. To know her was to love her: her smile lit up the room, and her positivity was felt throughout. Sheila was a GRASP mentor since our first in-person at SABCS2019, and her loss is felt deeply.
@abcdiagnosis @annmcbrien_ @swaggsheila1 @myESMO @fumikochino @PTarantinoMD @stage4kelly @itsnot_pink @GRASPtweets @nicancertrials @ASCOPost @SABCSSanAntonio @AACR There are simply no words, we’ve lost one of the best, a bright light in our MBC community. 💔
@EOE_cancer @HWEICB How do we make this happen? A pop up on the GP system or similar?
@Debbie_abrahams @DawnButlerBrent @NorwichChloe @Novartis @mandfhealth I created the infographics for awareness & empowering #breastcancer patients to know what to look for after they’ve had breast cancer. The NHS & GPs cannot keep ignoring this as people are dying through the…
⬇️ so sorry to hear that @swaggsheila1 has died 💔. Completely echo the reflections from fellow patient advocates & clinicians praising her tireless work to improve MBC outcomes. So glad I got to meet her at @myESMO BREAST last year. @fumikochino @PTarantinoMD
🖤 Heartbroken that @swaggsheila1's incredible voice is gone. Her joy, strength, and humor uplifted so many. Her guiding light shines on all of us to continue working to improve cancer care. The status quo isn't good enough. We need more. We need better. #stageIVneedsmore
@abcdiagnosis @Debbie_abrahams @DawnButlerBrent @NorwichChloe @Novartis @mandfhealth Absoloutely. I was failed and dismissed for two years despite repeatedly asking for a scan and help. What could have been stopped as local recurrence became extensive metastatic disease. Despite my knowledge I was forced to witness myself being literally nailed into my coffin.
@abcdiagnosis @GatewayC_ @NHSEngland I had all the classic signs of SMBC tail end of 2017. Took 4 months before GP sent me for MRI which picked up met on spine. Luckily I’m still here 6 years on. Earlier dx wouldn’t have changed anything but I’d have started treatment sooner. It’s just not good enough. 😡😡
@abcdiagnosis @GatewayC_ @NHSEngland I had even gone to my GP saying I’m concerned this might be MBC 🤷🏻♀️
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