The Urology Foundation’s Post

We need to do so much more

‘’My name is Eoghan Gubbins-Cloney. My journey with cancer began on 3rd October 1997 when, at just sixteen months old, I was diagnosed with Medulloblastoma; a brain tumour associated with the Cerebellum (base of brain). My symptoms were not indicative of a brain tumour, my GP initially misdiagnosed me as having Cerebral Palsy, a condition which would account for the loss of control in my lower limbs but not projectile vomiting which I was also experiencing. My mom and grandmother, not completely satisfied with the Cerebral Palsy diagnosis, brought me to Cork University Hospital for a specialist second opinion. I was administered a CT scan which initially showed nothing out of the ordinary. Following this, I was given contrast before another CT scan was performed. Contrast is a dye used in CT scans to assist radiologists in distinguishing different structures in the body. With the aid of contrast, the radiologists and doctors were able to identify a golf ball-sized tumour attached to my brain stem under the Cerebellum and two metastases that had travelled to the spine. The outlook was not good. The doctors recommended that I should be taken home, made as comfortable as possible and enjoy whatever time I had left; they estimated a maximum of three weeks. A surgeon at Cork University Hospital agreed to carry out an excision and remove the tumour, however there was no guarantee I would survive the surgery. Surgery such as this was not normally carried out on anyone under the age of two and my surgeon had never before operated on anyone as young as sixteen months for this brain tumour. However, thankfully, the surgery was a success. What followed was a course of Chemotherapy, both intravenous (3 months) and oral (5 months, administered every day by my mom)''. Eoghan has kindly shared his experience of being diagnosed with cancer at just 16 months old as part of the Cork's 96fm & C103 Giving for Living Radiothon which is raising money for five Cork charities including Breakthrough Cancer Research. You can listen to Eoghan’s story on Cork's 96fm & C103 and read his full story here: https://lnkd.in/e6egYmQD #BreakthroughCancerResearch #CancerResearch #MakeMoreSurvivors #96FMRadiothon

Did you know that getting tumor tissues from patients is one of the most critical issues in rare cancers? Hear from Dr.Kevin Jones, a long-time supporter of Clear Cell Sarcoma Foundation and Division Chief of Sarcoma and Professor at Department of Orthopedics at University at Utah on how invaluable fresh(untreated) CCS tumor tissue can be in finding a cure for this ultra-rare cancer. Clear Cell Sarcoma Foundation (CCSF) is a partner of Pattern.org, a non-profit organization launched by Rare Cancer Research Foundation (RCRF) that enables cancer patients to directly donate their tumor tissue and medical data to high-impact research projects. To help us continue this partnership, please consider donating to support our cause at https://lnkd.in/epEPSwHm #ClearCellSarcoma #SarcomaAwareness #Sarcoma #HelpCureClearCellSarcoma #RareCancerAwareness

🔔 Head and Neck Cancer Patients Face the Longest Treatment Wait Times in England 🔔 An exclusive analysis by Cancer Research UK has revealed that just 54% of head and neck cancer patients are treated within the 62-day NHS target. This is unacceptable. A four-week delay to surgery can increase the risk of death by 6-8% for many cancers. With over 300,000 cancer patients at risk of missing treatment targets in the next five years, the time to act is NOW. At Oracle Head and Neck Cancer UK, we are committed to improving these outcomes through our RACE initiative: Research to find new treatments Awareness to highlight the issue Collaboration to drive change Patient Experience to ensure care is centred on those affected But we can’t do it alone. We need YOUR help. Join us in our fight by donating, fundraising, or spreading awareness. Every action makes a difference. ⏳ Every day counts in the fight against cancer. Let’s work together to make sure no patient is left waiting. #CancerTreatment #HeadAndNeckCancer #PatientAdvocacy #EndTheWait #RACEInitiative #OracleHNC https://loom.ly/rE_Mk5A

On June 29th, 2023, our family received distressing news: our 5-year-old son was diagnosed with Medulloblastoma, Brain Cancer. Logan underwent major surgery to remove the tumour, followed by 30 rounds of radiotherapy and 4 rounds of chemotherapy, completing his treatment in February this year. With no signs of metastasis and complete tumour resection, his prognosis stood at a 75% survival rate. While these may seem like favourable odds, the sobering reality remains: 1 in 4 children do not survive In March this year, Logan achieved remission with no evidence of disease. He has returned to full-time schooling, demonstrating remarkable physical resilience and only minor speech delays. While ongoing NDIS support will aid his rehabilitation, we are grateful for his overall recovery, mindful that most children with similar diagnoses face severe long-term risks and side effects. Logan's journey continues with regular scans every three months for the next two years, and subsequently every six months until the five-year mark when he may be deemed cured. Despite the passage of time, the fear of relapse remains palpable. Unfortunately, there is now also an elevated risk for him to develop secondary cancers later in life, ironically stemming from the chemotherapy and radiation treatments he underwent. For people who do experience relapse, the importance of research and clinical trials exploring alternative treatments and targeted immunotherapies cannot be overstated. It's critical to note that treatment protocols for paediatric brain cancer have seen little change over the past six decades. Therefore, every contribution to cancer research represents progress, offering hope for improved survival rates and reduced treatment-related complications in the future. Over the past year, the support from Holman and now RWC has been invaluable in navigating this challenging chapter in my family’s life. It underscores the significance of a strong support system, both at work and at home. This year, my colleagues are participating in the Cancer 200 ride—an endeavour requiring months of rigorous training. Witnessing someone close battle cancer can be incredibly difficult, often leaving us feeling helpless in how best to support. I am deeply moved by their solidarity in taking on this challenge. If you are able to support them in this cause, we would be immensely grateful. #LogansHeroes https://lnkd.in/gSwNPP_6

A little hello, an update and a big thank you from me to you. Here’s a little video update from day 1 post surgery yesterday (to be honest I had the benefit of a lot of anaesthetic still in me yesterday!). I still need more treatments, procedures and another op but here’s a little update & insight. Meanwhile it’s now day 2 and I feel more like I’ve been run over by a truck. There’s a lot of healing & recovery to be done so I’ll do more of an update in a few weeks when I’m more “with it” :) Why am I sharing here on LinkedIn? 1. To update you all and to give a very big deep thanks to you for all your amazing support. All the messages, support, donations & good vibes has got me to here and is helping tremendously & is very literally life saving. For a multitude of reasons cancer is extremely difficult & harrowing to deal with, and with facing it a second time I need all the support and help possible! 2. Sharing some insights of my “journey” with breast cancer & it’s recurrence (round 2) in case it’s helpful to anyone else going through it who may read this or to a loved one or friend or colleague who you may know who is also dealing with it. (Absolutely no-one should feel alone, we’re all stronger together). 3. With the shocking cancer stats of 50% of us in our lifetimes for cancer in general and 1 in 7 women for breast cancer a couple of people have mentioned they would not know how to best support a colleague or even one of their employees dealing with it. So I’m chipping in with some visible and hopefully helpful, informative & useful insights. Cancer is a beast but unfortunately it’s one we can’t stick our heads in the sand from, but we can support each other as colleagues, friends, employees/employers & businesses. Writing this has worn me out a little so I’m off for a little post surgery snooze and to follow surgeons instructions of total rest for a while :) My deepest of thanks for all the ongoing support x #breastcancer #breastcancerawareness #cancerjourney #breastcancerrecurrence #precisionmedicine #genomicmedicine #oncology #breastcancerround2

July is Sarcoma Awareness Month! Every July, we honor, celebrate, and amplify the Sarcoma community in support of this rare cancer. As we begin Sarcoma Awareness Month, here are some statistics about the disease, per the Sarcoma Foundation of America: In recent year, sarcoma has comprised 1% of adult cancers diagnosed in the United States while also comprising 15 to 20% of childhood cancers. Latest estimates show that 17,560 people in the United States will be diagnosed with sarcoma and ~220,000 patients and families are living with sarcoma in a given year. There are so many ways to learn and get involved with this inspiring community! We can't wait to share more. #sarcoma #sarcomaawarenessmonth #orthopediconcology #oncology #musculoskeletaloncology #bonecancer #cancerawareness #rarecancer

Living with a Chronic Illness - Coping Strategies and Mental Well-being. From an episode of "A Day in the Life," Jason Hendler and Chad Billmyer, a patient and care partner married couple, share their journey of Jason's multiple myeloma diagnosis. #cancer #bloodcancer #cancerresearch #myelomaresearch #mmsm #oncology #hematology #myeloma #multiplemyeloma #InternationalMyelomaFoundation #hemeonc #cancersupport #nonprofit

July is #SarcomaAwarenessMonth 📅 Both #RANZCR and Radiation Oncology: Targeting Cancer are committed to informing the public about this rare group of cancers. #Sarcoma can affect bone or soft tissues and occurs at all ages, including in children and young adults. Read Ben's story on how he overcame #Sarcoma with the help of #RadiationTherapy and has since raised thousands of dollars for cancer research ⬇️ https://ow.ly/8xg650Sv6l5 #RadiationOncloogy

Did you know? One in eight women in the United States will be diagnosed with breast cancer in her lifetime. In 2024, an estimated 310,720 women and 2,800 men will be diagnosed with invasive breast cancer. Chances are, you know at least one person who has been personally affected by breast cancer. 68% of patients undergo a mastectomy. Mastectomy is the partial or complete removal of the breast tissue including the nipple. In honor of National Breast Reconstruction Awareness (BRA) Day, we would like to honor the heroic donors who graciously provide tissue grafts to help breast cancer survivors who have undergone mastectomies and are in the process of seeking reconstructive surgeries. Inspired? Register to be a hero: https://hubs.li/Q02TJvwL0 . . . . #DonateLife #BreastCancerAwarenessMonth #SaveLives #BeAHero #TissueDonation