A passionate advocate who campaigned for change with METUPUK as a passionate advocate and worked with Secondary First secondary breast cancer charity to raise money and funds for SBC.
She leaves a husband and 3 sons.
We loved Mary who was feisty and not scared to voice her concerns.
Died 30.7.19
ER+ DX de novo with extensive liver mets April 2016 Epirubicin & cyclophosphamide Breast surgery & lymph clearance Radiotherapy Paclitaxel Gemcitabine & carboplatin Hysterectomy due to progression to ovaries Capecitabine Microwave ablation to liver Palbociclib & Fulvestrant Eribulin.
Private Treatment.
Died 23.2.20
ER+ PR+ HER2- De novo spread to many bones 3 years of letrozole (the last year addition of ibrance) Surgery to support skeleton - corpectomy and hip replacement and removal of primary in breast Current regime capecitabine for 18 months with addition of tamoxifen in the last 2 months Now have ESR1 mutation so hormone therapy may not work. Clinical Trial Fulvestrant This really concerns me as it reduces my future drug lines. NHS Treatment Progressed on clinical trial and liver failed.
Died 16.6.20
ER+ Primary breast cancer 2012 (clear scans) clinical trial, chemo, full mastectomy, RT. Stayed on Tamoxifen and given 5 years all clear March 2018. July 2018 dx with liver, bone and lung mets . Weekly paclitaxel. Scottish Health Service Treatment.
Died 29.6.20
Kadcyla which was finally approved in Wales May 20 Herceptin, cape and lapatinib (not accessible 3rd line in England) July 20 - brain mets and leptomenginal (brain lining) with lung progression to lungs and liver and vertebrae. WBRT.
Died 25.9.20
Welsh Health System Treatment
April 2006- ER Positive- 95%, PR Positive 75% and HER2 Negative. No lymph node involvement. Right breast wide local excision and sentinel node biopsy - adjuvant FEC chemo, adjuvant radiation therapy, adjuvant hormone therapy, tamoxifen 5 years plus Zoladex for 2 years. August 2016- disseminated liver metastasis with significant bone metastasis. Taxol Chemo weekly- 12 sessions September 2016- Denosumab every 12 weeks January 2017- Letrozole March 2018- Exemestane and Everolimus June 2018- Capecitabine June 2018-January 2020 progression in liver Capecitabine March 2020 Carboplatin - Palb2 mutation (now named BRACA3) May 2020 further progression to liver & new areas of brain & leptomeninges (Central Nervous System) & Given 4 months to live. June 2020 changed to Fulvestrant End June 2020 also awarded Abemaciclib compassionate grounds. August 2020: Stability of liver, bone, brain & leptomeninges. Blocked bile duct caused further complication & biliary drain inserted permanently. October 2020 Surgery to reverse the drain but even though surgery seemed to go OK there was progression of the liver.
Died 14.12.2020
NHS Treatment
ER+ PR+ HER2 – PBC Aug 2017 (aged 42) Mastectomy, full lymph node removal, chemo, RT tamoxifen exemestane, zoladex, cold capped. No symptoms but lump – initially thought haemangioma on spine dxd 2018 monitored & shrunk in response to exemestane.
ER+ PR+ HER2 + (triple positive) Bone Mets
January 2019 SBRT RT (Christie trial), then Docetaxel (x 3) Herceptin and Perjeta,
NEAD July 2019. Late-effects lymphedema (in remission). Denosumab & exemestane with zoladex;
oophorectomy Dec 2019.
ER- PR- HER2 – (TNBC)
new mass behind sternum/chest lymph nodes May 2020, chest pain, hospitalised with jugular blood clots/major vein blockage, emergency radiotherapy. Weekly paclitaxel 4-weekly denosumab
NHS Treatment
Died 18.2.21
ER + (8/8) Her2- PR- May 2017 mastectomy, lymph node removal, FEC-T Chemotherapy, Radiotherapy Dec 2017 Tamoxifen June 2018 liver Mets discovered Letrozole, Zoladex and palbociclib = failed, mets increased to over 100 Capecitabine = success, mets are either currently shrinking or stable enrolled on tumour profiling trial ‘Prospect North East’ Faults found in genes including ‘ATM’. Based on this discovery, when current treatment fails medical team will create a trial for me using ATR inhibitors May 2020 - ATR Clinical Trial to target faults in ATM gene (NHS Treatment) August 2020 discovered clinical trial failed Significant progression in the liver and mets spread to bones August 2020 Eribulin. Awaiting results of Foundation One testing to find out if mutations have changed and are actionable (NHS)
May 2021 - issues with liver, blocked and was refused access to a clinical trial to target a specific mutation due to the fact had more than 2 prior chemotherapy lines so was excluded from the trial. Delays with biopsies and blood tests. Had vinorelbine chemotherapy but it didn't work. Palliative care started.
NHS Treatment
Died 7.6.21
Died
ER+ (caused by PTEN Hamartoma Tumour Syndrome) age 33 Dx de novo with spine, bone and lung mets 1st line Letrozole, Palbo 2nd line everolimus and Exemestane chemo and RT Zolodex, denosumab.
Capecitabine.
August 2020 progression & change of treatment - denied radiotherapy to 2 small liver mets because "im not in pain"
NHS Treatment
Died
Age 37 Feb 2017 - Diagnosed primary IBC - inflammatory breast cancer er+ her2+ EC, Docetaxal, Pertuzumab, herceptin followed by surgery and radiotherapy...continued on herceptin and started letrozole and zoladex April 2018 - CT showed 2 spine lesions, bone biopsies confirmed MBC Continued with herceptin, letrozole, zoladex and added in denusomab May 2019 - cyberknife to spinal lesions August 2020 - 2 small brain lesions found and treated with SRS..treatment remains the same. NHS treatment
Died
Original DX Her2+ er/pr+
Dec 2012 denovo age 23 with liver mets.
Treatment hx
6x Docetaxel
Herceptin
Surgery (herpectomy)
Kadcyla
Clinical trials
Pipa (palbociclib and taselisib)
Tulip Trial (trial drug SYD958)
Currently on Capecitabine and compassion access to Neratinib.
Denied access to Pertuzumab as had already started herceptin few months before it was approved.
2022 Brain mets
2023 leptomeningeal brain mets
Died 2023
Grade 3 ER 8/8 PR 6/8 HER2 Neg Right modified radical mastectomy with full axilla clearance. Adjuvant FEC 75 x 4 and Docetaxel x 4 5 years on Tamoxifen. Secondary diagnosis in mammary chain. Surgery to remove collarbone lymph node. Zoladex x 5 months Radiotherapy x 25 Salpingo oophorectomy surgery. Letrozole, Anastrazole Everolimus and Exemestane Liver ablation Cyberknife to sacrum Palbociclib and Faslodex Weekly Paclitaxel Capecitabine Currently on paxclitaxol? Private Treatment
Died June 2023