The Inflammatory Breast Cancer Network UK

We are deeply concerned that Enhertu has not been approved for patients in England today on grounds of cost by NICE, this drug has prolonged many lives and is still available in Scotland. https://lnkd.in/e2DhUR7S

It’s safe to say Joe Hornsby has gone the extra mile for The Inflammatory Breast Cancer Network UK 🩷 This weekend, Joe took on the ultimate challenge, a 100-mile centurion race! He completed the race in a very impressive 22 hours, 30 minutes and 55 seconds, which was 5 and a half hours under the cut-off time and saw him place 50th of 172 finishers! 🏃♂️ This was part of Joe’s continued efforts to support the amazing work of The Inflammatory Breast Cancer Network, who provide support and guidance to those battling the disease. You can still show your support by donating to his Just Giving page here - https://lnkd.in/eiR_TxNc A huge well done Joe, what an outstanding achievement! 👏

Wes Streeting, the UK Secretary of State for Health and Social Care now knows about Inflammatory Breast Cancer after talking to our Founder Caroline and our Vice Chair Naomi 🍊 Our charity is very interested in his announcement today at the Royal College of GPs Conference regarding patients with suspected breast cancer being able to contact 111 for a referral to a breast cancer clinic and bypassing the GP, this pilot scheme has the potential for IBC patients to get a faster diagnosis which is critical! #wearitorange #inflammatorybreastcancer #IBC

Brief overview of day 1 at the conference yesterday. Hope to see lots more today, to talk about all things Inflammatory Breast Cancer. For any clinicians if you are interested about hearing anymore information about IBC click the link https://lnkd.in/ecxF8HtK Great to see Breast Cancer on the agenda at a GP conference. Love to join the conversation regarding IBC awareness with fellow breast cancer charities. It is IBC awareness day today 4th October- Hope to see many orange attires today- we will be definitely be in orange! #RCGP #RCGPAC #IBCNetworkUK #BreastCancerAwareness #BreastCancerNow

The Orange team are out in force at the Royal College of GP Annual conference today and tomorrow stand J20 in the exhibitors hall right next to the coffee station. Come and say hi. #rcgp #rcgpac #ibcnetworkuk #IBCawareness

31 Days of IBC is BACK for October! First up is our amazing Chairperson, Autumn! Get ready for a month of daily facts about Inflammatory Breast Cancer (IBC) – because knowledge is power! 💡 Every fact we share could save a life. For the full list of IBC symptoms, head to our website 👉 https://lnkd.in/ewxsbsUN Let’s make October a month of awareness and action! #31DaysOfIBC #IBCAwareness #IBCNetworkUK #HopeAlways #WearItOrange

36 hours and 100 miles later ….. journeys end for Team Dains on a very wet and windy Plymouth Hoe. Everything is soaked but we did it! I did a mere 5 miles on the last stage with them. Amazing effort with an amazing team for an amazing cause!! THANK YOU! The Inflammatory Breast Cancer Network UK Dains Cake Club Dains Accountants Hoan Nguyen Andrew Donaldson #hopealways #wearitorange

We are in awe of this team walking the Devon coast-to-coast overnight to raise funds for research into and awareness of #InflammatoryBreastCancer More power to your legs! #HopeAlways #WearItOrange 🧡

With less than 1 week to do until IBC awareness day on the 4th October 💬 Julie has kindly shared her incredible IBC journey 💬 Her story is one of both challenges and triumphs, and we're so grateful for her bravery in raising awareness. 💪❤️ Scroll down to hear her inspiring words and how she’s faced the ups and downs of IBC with courage and hope! 🙌 ‘Every women needs to know IBC symptoms. IBC doesn’t show up on mammograms well and the medical professionals aren’t as aware of it as they should be’ My main challenge was getting primary diagnosis and understanding what it meant. I was concerned about red, itchy, swollen breast’ and was told on a scan it was ‘dense breast tissue’. ‘Following this I visited my GP three times and treated for mastitis. I then had further biopsy and scan which diagnosed stage 3 IBC. I have subsequently been there 8 rounds of chemo, mastectomy and 15 session of radiotherapy’ The aggression of IBC is terrifying so early diagnosis (stage 3) is essential. IBC Network UK has been an invaluable support. To be able to connect with other women who have IBC is so important. It has been instrumental in ensuring that I was equipped with the knowledge I needed to ensure that I received the medical care required to give myself the best chance of beating IBC. I was advised lumpectomy, differing timescales and no radiotherapy as I’d had a good response to chemo) I was able to advocate for myself and insist my treatment followed international IBC protocol. ‘’Stay positive, Hope Always ‘’ Telling my children and family was the toughest part of the journey. My surgeon was wonderful He told me that “ this is going to be a bump in the road of life and you’ll be fine…positive mind, positive body” I have hung onto these words and this was the script I used to share the news of my cancer with family and friends. Be ready to advocate for your own health and treatment plan I have been spending time on recovery: Gentle exercise and strength building exercises to regain strength, stamina and muscle loss. Ensuring I eat a diet to support my recovery and maintain health. I have even taken up pottery! As soon as I’m well enough I will return to work. I’m an Assistant Head Teacher at an inner city primary school and have found it so hard being if work, I miss it so much! The whole school community have been so supportive while I have been off work, holding fundraising and IBC awareness events. My daughter has just got engaged so I am looking forward to helping her plan a wedding. ( One of my incentives during treatment was to be around for my children’s weddings and to be around long enough to be a grandparent!) Stay positive …Hope always!

Nearly there! Thanks so much Dains Accountants Dains Cake Club Hoan Nguyen Andrew Donaldson