Development of new SA Cancer Plan

Stories

• Breast Cancer

  by Penelope , over 3 years ago

  My story began with a GP visit (not my regular GP) I had a rash on my R Breast…’oh that’s eczema’ and was given cortisone cream, which did clear it up. No further investigations..Several months later, i went back to the GP still concerned about my Breast..’ oh well you’re due for a mammogram, so go and get that done … no examination..I waited 3 weeks for my results, having been told that if there was a concern you would get an early phone call.. no phone call, just a letter telling me to contact Breast Screen for further... Continue reading

  My story began with a GP visit (not my regular GP) I had a rash on my R Breast…’oh that’s eczema’ and was given cortisone cream, which did clear it up. No further investigations..Several months later, i went back to the GP still concerned about my Breast..’ oh well you’re due for a mammogram, so go and get that done … no examination..I waited 3 weeks for my results, having been told that if there was a concern you would get an early phone call.. no phone call, just a letter telling me to contact Breast Screen for further tests, however, Christmas was coming and clinics were closed, so no appointments available until February. Back to my regular GP who was really on the ball and arranged an ultrasound/ biopsy and Bone scan…. Christmas Eve 2018 I was diagnosed with Breast Cancer.. I don’t have Private Health Insurance , but the Public Clinics we’re closed, so I paid privately to see a Breast Surgeon for a CT scan and a plan. I was then transferred to the Public System for ongoing treatment

  Stage 2 Hormone receptive ductal carcinoma of the R Breast.. I should have a good prognosis following treatment..

  Chemotherapy/Surgery/Radiotherapy/Hormone blockers/ Zoledronic Acid infusions

  The Public System was excellent, well coordinated between departments, staff and care brilliant .. Oncology and Chem Nurses exceptional.. Drs ,Brilliant .

  I had Physio throughout my treatment.. even though I could barely walk, I felt better for it. Post treatment follow up , is good, but I’m struggling with debilitating joint and muscle pain, some depressive issues..

  Survivorship nurse is good , but probably need a little something extra in terms of psychological care and continuing Physio..

  
  

  
  

• Cancer- My Story

  by Charles Nash, over 3 years ago
  

  January 2019 I began experiencing light-headedness, fatigue, night sweats, laboured breathing and a swollen face.

  At the time I was 31 years of age, and a full time commercial painter. I put my symptoms down to being low in iron as I am vegetarian, and being overworked. I had consulted my GP for various tests regarding my swelling, assuming that I may had been allergic to something. All tests returned no answers and I had been encouraged to seek a second opinion with another doctor.

  
  

  This doctor ordered an ultra sound on my neck, and during this examination, there was... Continue reading

  January 2019 I began experiencing light-headedness, fatigue, night sweats, laboured breathing and a swollen face.

  At the time I was 31 years of age, and a full time commercial painter. I put my symptoms down to being low in iron as I am vegetarian, and being overworked. I had consulted my GP for various tests regarding my swelling, assuming that I may had been allergic to something. All tests returned no answers and I had been encouraged to seek a second opinion with another doctor.

  
  

  This doctor ordered an ultra sound on my neck, and during this examination, there was a decision to give a CT scan to my chest and investigate further.

  This is when I was told the news we never expect to be framed around ourself.

  I had developed a 10cm clot in my neck, causing blood to not flow freely from my brain resulting in swelling of my face. Being so large, the clot was not normal and was found to be caused by a 10cm mass in my chest.

  
  

  I went home, unsure of what this all meant. “Cancer, don’t you just cut it out and it’s all good?” “Cancer is what older people get” “ I’m healthy, this must just be a lump or something?”

  
  

  I returned to work the next day, numb. I told a few people at work, who didn’t really understand what I was doing at work, and encouraged me to make some phone calls to find out what was happening.

  I returned to my GP that afternoon after work to receive the official results from the scan. He then wrote me a letter explaining that I needed to be seen urgently and was directed to the emergency ward, due to trouble with breathing and fatigue.

  My loving and supportive partner, Anna, drove me to the Royal Adelaide Hospital Emergency Department where I was immediately admitted.

  After many discussions with various specialists, a biopsy was taken from my chest and confirmed that I had Hodgkins Lymphoma. I met with a coordinator who explained what the steps may be from here, options, and ensuring that my partner and I had all the support we needed.

  I then met my Haematologist and Clinical Trials coordinator and was offered to be put on a clinical trial of chemotherapy.
  This was a hard thing to contemplate and come to terms with. Looking back now after 3 years, it all seems a blur of momentum and drastic decisions. There was a lot to weigh up. Side effects were highly probable, chances of developing secondary cancers after chemo were seven-fold, infertility was to be accepted, and the desired effectiveness of the chemo and reaching remission was not guaranteed.

  
  

  I accepted the offer to contribute to the research on the trial and after visiting the fertility clinic to freeze my last amount of frozen sperm, I began my first round of chemo. The day after Valentines Day- 14 days after diagnosis.

  
  

  Treatment was quite regimented and routine. Day 1-4 was visiting the RAH for most of the day to receive the toxic chemicals designed to kill my white blood cells, healthy and unhealthy. I could return on day 8 for my final treatment for the round and go home feeling exhausted and depressed. Many family and loved ones accompanied me to treatment- Anna, my father, my mother in law, and my sisters.

  Day 8 was significant as that was the day I would turn febrile neutropenic and admitted to Emergency once again. Like clockwork, around the same time after day 8 treatment I would be admitted to hospital where I would be administered anti-biotics and whatever else was needed to bounce back ready for my next round. Each stay was around 7 days. My time in hospital was monumental for comprehending what was happening to my body. Nurses always made sure I was looked after and many took time out to explain my blood work as I would compare to previous admissions.

  Fast forward to round 4 and I was told the great news that I was in remission.
  I did not know how to take this. I just got used to the fact that my time here is finite, and found peace in the fact that I am surrounded with people who love and support me, and appreciate the experience helping me understand what is most important in life.
  I was fortunate that my employment was covered by a health insurance policy which ensured that I was paid as usual although I had exactly 9 months off work to have treatment.

  Once remission was reached, insurance was not longer eligible, as was my previous position in the company.
  I was forced to find employment with another company and start from the bottom again. This was not hard to find, although it was not as fulfilling as my last job, and the environment was not as enjoyable.

  I worked for that company for one year before deciding to work for myself. I am currently self employed, and happier than ever making more money and working less hours with more flexibility.

  
  

  The aftermath of cancer is that it is never that. It is always there. There is always a reminder of how different life is because of cancer. Be it the multiple unsuccessful IVF procedures, isolation, the effects of not working for so long, lost connections and friendships, worry of possible relapse, the list is endless.

  One thing that I learnt from the experience is to know what is in your control, and to be easy on yourself. This is a constant lesson which I am yet to master but if is wasn’t for the experience of cancer, I wouldn’t ha e the reference point which I do today. My partner stood by me through the thick and thin and was dedicated to ensuring I was taken care of. I wasn’t to easiest person to deal with and I feel like during these times we the person closest to us cops the result of every emotion we share or withhold. The support is there for the patient, but I feel the family are dealing with more than anyone would ever understand.

  I am forever grateful of the medical system and how seamless my treatment and hospital stays were. I thank the Leukaemia Foundation for transporting me to treatment and appointments when I could not drive and support networks they provided, as well as the Cancer Council.
  All support was fortuitous in gaining clarity and understanding as well as feeling less isolated.

  
  

  Thanks for reading my story.

  Although in remission, our stories are never over.

  —

  Charles Nash

  
  

• Beating brain cancer after being diagnosed with a bleak outlook

  by Chelsea Fullers Fight , over 3 years ago

  In 2013 I was diagnosed with an inoperable primary brain tumour (oligodendroglioma Stage 2), a tumour so big I had no idea it was even in there, doctors were stunned. I was a healthy 27 year old with nowhere to turn as there were not many options other than to go home and "Live out your life"

  I had recently gotten married and started a family having two young children (1&3) other than friends and family I received no other support. This was the Hardest time of my life but so grateful that I was able to turn to the... Continue reading

  In 2013 I was diagnosed with an inoperable primary brain tumour (oligodendroglioma Stage 2), a tumour so big I had no idea it was even in there, doctors were stunned. I was a healthy 27 year old with nowhere to turn as there were not many options other than to go home and "Live out your life"

  I had recently gotten married and started a family having two young children (1&3) other than friends and family I received no other support. This was the Hardest time of my life but so grateful that I was able to turn to the ONLY man in Australia that would operate and give me a chance. Dr Charlie Teo removed the bulk of my tumour and in turn saved my life. I think it is absolutely ridiculous that this wonderful man can no longer operate in Australia in order to save the lives of those like me. My tumour grew back in 2018 and I was able to have a SA surgeon operate as it was nowhere near as large as the original and not deemed inoperable. Followed by radiation and chemotherapy I have been stable since 2020, however, if it grows back I have now exhausted my options for further treatment so a cure would be nice as Charlie cant be reached.

• Strong Family History

  by HeatherP, over 3 years ago

  My mum had breast cancer for 5 years, and lost her battle in 1987. She was diagnosed age 40. I was determined that I would use healthcare to minimize my own risk. In collaboration with my GP I had my first screen when I was thirty, which I maintained for 2-3 years. I missed a few years, then covid, and was rescreened in June 2022 through Breastscreen SA. I am appreciate and thankful for this service, and being able to access screening early.

  My first diagnosis of early breast cancer was in June 2022. My surgeon could not feel a... Continue reading

  My mum had breast cancer for 5 years, and lost her battle in 1987. She was diagnosed age 40. I was determined that I would use healthcare to minimize my own risk. In collaboration with my GP I had my first screen when I was thirty, which I maintained for 2-3 years. I missed a few years, then covid, and was rescreened in June 2022 through Breastscreen SA. I am appreciate and thankful for this service, and being able to access screening early.

  My first diagnosis of early breast cancer was in June 2022. My surgeon could not feel a lump. I did not feel a lump. My cancer was esostrogen sensitive, and aggressive. If I had not followed through with this I could have been in all sorts of trouble. I was able to have surgery within a week to remove the cancer.

  I have gone the private system for treatment simply as I am able to access both surgery and treatment quicker, though I do understand there is a timeframe for accessing appointments in a 'timely manner' in the public system, I am not sure how this is determined. Luckily when I ended up in hospital I was able to access both specialists in hospital as well. However being place on a hospital ward of mixed physical, mental health and aged and dementing consumers was not helpful in my recovery at this point. No issues with the staff or registrars or consultants though communication in complex matters where multiple specialist departments are involved could be improved.

  As a young person undergoing cancer treatment, I am very limited in what support I can access. The nature of my treatment means I am unable to drive to or from treatment, so am dependent on friends (the first week of chemo I had an allergic reaction to the treatment I require so have additional drugs to ensure I am able to be treated). Nearly all friends work, so are unable to assist in a practical sense, and am unable to access alternative options ie red cross (for over 65).

  I am grateful that I can access genetic testing to determine further treatment and/or surgery in the future, but don't believe that the current education and health promotion is provided anywhere near enough. Knowing what information is required for this assumes there is a known medical history that goes back 4-5 generations, and this often isn't the case, particularly in lower socio-economic families and communities let alone broader cultural groups.

• Cancer is not just for the older generation!

  by The BEAT Movement , over 3 years ago

  In September 2021, I was around 30 weeks pregnant with my second son Eli when I felt a lump in my right breast. I raised the concern with my midwife and every single health care professional I came in contact with after that. Each and every one of them told me it was a blocked milk duct and to just put heat on there and massage it.

  
  

  When Eli was born, I continued to raise my concerns about the lump but was again told it was a blocked milk duct. At his 6 week check up, I raised the concern... Continue reading

  In September 2021, I was around 30 weeks pregnant with my second son Eli when I felt a lump in my right breast. I raised the concern with my midwife and every single health care professional I came in contact with after that. Each and every one of them told me it was a blocked milk duct and to just put heat on there and massage it.

  
  

  When Eli was born, I continued to raise my concerns about the lump but was again told it was a blocked milk duct. At his 6 week check up, I raised the concern with my GP who immediately recognised that it was not a blocked milk duct and she referred me to a specialist.

  
  

  Within days, I had a biopsy which came back as suspicious for malignancy. This lead to more biopsies, ultrasounds, an MRI, a CT scan, a mammogram and a bone scan.

  
  

  On the 11th of February 2022 I was officially diagnosed with Stage 2, Grade 3 Invasive Ductal Carcinoma - Breast Cancer. I have a not so common subtype (ER/PR- HER2+) which is aggressive and puts me at high risk of reoccurrence. I have had to endure 16 rounds of Chemotherapy (so far - likely 14 to go), a double Mastectomy and a range of other targeted treatments to hopefully cure this disease - all while caring for a newborn and a toddler.

  
  

  Now, I don't blame my health care professionals for dismissing my lump as a blocked milk duct - if they had never seen a pregnant woman with breast cancer before it is an easy oversight. However, with 1 in 1000 pregnancies being afflicted by cancer (a third of those being breast cancer) and pregnant and lactating women being at an increased risk of breast cancer for at least 5 years after childbirth, it is something that should have a standard operating procedure around and education during gaining their qualifications. I believe that all it will take is for each and every health care professional to meet someone like me and hear my story for them to have that imprinted in their mind so that next time their patient mentions a lump in their breast or breast changes, they click into gear and start a monitoring and referral process. Early detection saves lives. On the young women's breast cancer pages, the most common point mentioned is that they were dismissed for similar reasons to what I was - many of them now have advanced cancers which could have been identified and treated much earlier.

  
  Through my treatment I have also managed to get a blood clot in my lung, a lung haemorrhage and heart failure. It’s been freakin’ tough.

  I am on a mission to create a training and awareness program to be rolled out to every midwife and Dr dealing with young women in the hope that no young woman is every dismissed again. I believe this will save lives. I also want to remind young women everywhere that they are never too young for this disease and it is crucial to monitor any changes in their breasts. If you do not feel heard by your health care professional, seek a second opinion and keep seeking until you get an answer. I’ve created The BEAT Movement to help young women and health care professionals navigate this.
  There is so much room for improvement for young people experiencing cancer symptoms!

  
  

• Stage 3 bowel cancer diagnosis at 33 years of age

  by ReneeJ, over 3 years ago

  At the age of 33 I was diagnosed with Stage 3 bowel cancer, a diagnosis that literally never crossed my mind. Bowel cancer will effect 15,000 people per year in Australia, including ~1000 people under the age of 50. Due to my age, gender and pre-conceived ideas about bowel cancer patients, my diagnosis was not a simple process and required multiple GP/hospital visits where I presented with severe abdominal pain, uncontrollable vomiting and weigh-loss. I was asked by one particular ER Dr "are you sure it's not just period pain?", "You COULD stay for tests, but its going to be... Continue reading

  At the age of 33 I was diagnosed with Stage 3 bowel cancer, a diagnosis that literally never crossed my mind. Bowel cancer will effect 15,000 people per year in Australia, including ~1000 people under the age of 50. Due to my age, gender and pre-conceived ideas about bowel cancer patients, my diagnosis was not a simple process and required multiple GP/hospital visits where I presented with severe abdominal pain, uncontrollable vomiting and weigh-loss. I was asked by one particular ER Dr "are you sure it's not just period pain?", "You COULD stay for tests, but its going to be a very long and boring day and you'd be much more comfortable at home" and told "let me tell you why it's not gut related". I was sent home multiple times with no answers and labelled by the same ER Dr. as "depressed" and "has google". I very quickly realised I had to become my own strongest advocate and fought for follow up tests, which included a CT, a laparoscopy and finally a colonoscopy that didn't come with an 8-10 week waitlist.

  
  

  Finally after weeks in and out of hospital my worst fears were realised. The colonoscopy and subsequent right hemicolectomy confirmed a tumour that was almost blocking my large intestine and had metastasized to the surrounding lymph nodes. I recovered from surgery, celebrated Christmas with my family, and then returned to start 3 months of chemotherapy. I later found out a simple blood test, taken after my diagnosis, would have given me my diagnosis without the need for all the trauma I faced within a hospital system that labelled me from the very beginning.

  
  

  My story had a relatively positive outcome and I am now in surveillance-mode, however there are countless stories of more and more young people being diagnosed with late stage colorectal cancer who were not so lucky. The system needs improved, non-invasive interventions and diagnostic tools, such as blood-tests upon first admission, so that people like myself don't get "lost in the system" where preconceived ideas and long wait lists block patient care.

• Phil, You are cancer free... 5 weeks later my Dad was gone

  by Nataliegriffiths, over 3 years ago

  My father was diagnosed with an incredibly small cancer 3mm in his top left lung. We were told by specialist that he didn't have any other cancer in his entire body and with surgery/removal on the 4th June, he would be able to live his life- cancer free. Surgery removal took place, blood test and we were told he was "cancer free" to go home and live his life.

  3 weeks later he was still in incredible amount of pain, we took him to the hospital for tests. Doctors assured us it was an infection and that he would be... Continue reading

  My father was diagnosed with an incredibly small cancer 3mm in his top left lung. We were told by specialist that he didn't have any other cancer in his entire body and with surgery/removal on the 4th June, he would be able to live his life- cancer free. Surgery removal took place, blood test and we were told he was "cancer free" to go home and live his life.

  3 weeks later he was still in incredible amount of pain, we took him to the hospital for tests. Doctors assured us it was an infection and that he would be better in a few days - 3 weeks later he was still in hospital and we had no further information! 3 weeks of pain with no answers, no tests. nothing!

  22nd July we were told that he had cancer in 3 places and would have 2 years to live. - remembering only his lung showed up with cancer before and after surgery - was the machine/test wrong? did the doctor get it wrong.

  5 weeks later my father lost is battle with cancer. 5 weeks after we were told he was cancer free after having a small 3mm tumour cut from his lung, he was gone!

  
  

  during that 5 weeks, he became unresponsive to his first and only chemo session. unresponsive right in front of me. ended up in ICU and was never the same. 1000's of people have chemo daily. yet he became unresponsive?- we still never got an answer.

  
  

  Palliative care losing paperwork and not registering him, me having to chase up with medication and care daily, 3 weeks of hospital stays with no answers, being told he had cancer in 1 spot - removed, cancer free and 5 weeks later died with cancer in multiple places.

  
  

  the trauma and non answers that I endured as his daughter is something that I will never understand or recover from, the rollercoaster of "having cancer, its only small, we can remove it, removal, you are cancer free go and live your life, pain for 3 weeks, oh dont worry its just an infection, 3 weeks in hospital with a lot of pain, to oh you have cancer in 3 places, you have 2 years to live, 5 weeks later he was gone.

  
  

  Cancer research and cancer in care in South Australia needs a huge overhaul, not only for the people suffering but as family who sit and watch on. I would love to be apart of trying to make a difference so another family doesn't have to deal with what I went through 2 years ago

  
  

• My stomach cancer

  by Tony Eyles, over 3 years ago
  Late in 2021 both my wife and I were diagnosed with cancers, only days apart.

  My wife with Lung cancer and myself with inoperable stomach cancer.

  My wife had one lung lobe removed and is now in remission.

  For myself an Endoscopy and Laparoscopy investigation revealed secondary cancer on the stomach lining specifically the diaphragm. I was put onto chemotherapy and Imnothearaphy immediately after a port was installed in December. For myself 2 successive CT scans show the cancer does not appear to have spread further and some areas have shrunk.

  I'm only 65.

  Late in 2021 both my wife and I were diagnosed with cancers, only days apart.

  My wife with Lung cancer and myself with inoperable stomach cancer.

  My wife had one lung lobe removed and is now in remission.

  For myself an Endoscopy and Laparoscopy investigation revealed secondary cancer on the stomach lining specifically the diaphragm. I was put onto chemotherapy and Imnothearaphy immediately after a port was installed in December. For myself 2 successive CT scans show the cancer does not appear to have spread further and some areas have shrunk.

  I'm only 65.

• 8 years and counting

  by Cecilia, over 3 years ago

  I was first diagnosed with a brain tumour (oligodendroglioma grade 2) in September 2014. I had surgery and innumerable MRIs following. In April 2020 I was diagnosed with a more malignant tumour (anaplastic astrocytoma grade 3) and then had a year of surgery, radiotherapy and chemotherapy. Throughout my illness I have learned so much about cancer research, treatment and the hope for a 'cure', though I realise that the proportion of the human race with any brain tumour is a very small number. I understand this means that the key to research, funding and a 'cure' - money - is... Continue reading

  I was first diagnosed with a brain tumour (oligodendroglioma grade 2) in September 2014. I had surgery and innumerable MRIs following. In April 2020 I was diagnosed with a more malignant tumour (anaplastic astrocytoma grade 3) and then had a year of surgery, radiotherapy and chemotherapy. Throughout my illness I have learned so much about cancer research, treatment and the hope for a 'cure', though I realise that the proportion of the human race with any brain tumour is a very small number. I understand this means that the key to research, funding and a 'cure' - money - is often directed towards cancers that affect more people. I have no problem with this, except that I learned that the prognosis for anyone with inoperable or grades 3 or 4 brain tumours has not changed in the last 20 years. For example, anyone diagnosed with a glioblastoma grade 4 is, on average, likely to only see the next 18 months before they pass away. I believe that clinical research is key to finding better and faster ways to diagnose, treat and extend the life of these people (despite the small number of sufferers). The Neurosurgical Research Foundation has introduced me to a few researchers working on these issues, and I think funding for the technology, research, clinical trials and people power they need is essential. This probably applies to all cancer, but I think this particular kind of cancer (gliomas) is in more need.