I thought I would put this out there to get an idea of how many of us YAC spent to much time being misdiagnosed, you know we are way to young to have cancer it must be something else... So I'll start with my story... In about 2000 I started getting sick alot, you know sleeping all day, slurring speech, putting on weight. The 2 weeks later I woudl have anxiety, have lots heaps of weight and be light headed all the time. I was told after lots of sugar tests I was borderline hypoglycemic, so I was put on a GI diet and told to eat 2 hourly and that would fix it. So on and off for another 6 months I battled you know to give the GI diet time to work and my doctor decided to send me to an endocrinologist, after tests told me I suffered from "hypochondria" (a***ole). My doctor then told me sometimes these things happen and we can't explain why...mmmm so I spent another 4 years back and forth. Sleepy weeks, anxious weeks until in 2005 I felt really ill. I went to the local doctor and she worked out my thyroid levels were out and sent me to another endocrinologist. He told me they were in normal range and its nothing...so back to the doctor I went. Turns out I was pregnant with my first baby and I just thought it was that; until I had my first midwife appointment in which I was told my levels made my pregnancy high risk and I would have to be under the hospital endocrinologist. Well he felt my neck, looked at my bloods and instantly sent me for an ultrasound saying it sounded like multi-nodular goiter. Sure enough I was sent straight back after the ultra sound and I was told that I would need a needle biopsy after the birth of my baby and that I possibly had cancer....WTF!!!!!!!! The rest is history really, obviously I did have cancer and I had spent going on 6 years un-diagnosed. Luckily thyroid cancers are slow growing or I would not be here. I would like to hear how many other people have had ridiculous misdiagnosis and had to push doctors to help them on their quest for answers.
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Thanks so much for sharing your story Amanda - and with such good humour considering the circumstances! It will be interesting to hear other people's experiences. Em
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Well you know my story Amanda, but I'm posting it anyway. In about June 07 I was told by my GP "you're really sick" after receiving almost no blood results that were within normal range (I failed 39 of the 45 tests he'd run apparently). I'd gone to him because I'd been feeling really sick, so in some ways it was reassuring that it wasn't in my head, but really we both knew something was up. I'd been getting night sweats and nausea, etc. but that didn't seem to raise much interest with the GP or the specialist he referred me to. As my red blood cells were low they decided I was losing blood from somewhere and it must have been from within my intestinal system. So I had every sort of blood test and *oscopy available, including the highly expensive capsule edoscopy (swallowing a pill sized video camera). By Decemebr they hadn't found anything and my GP wouldn't look at me because he'd referred me to a gastroenterologist, while the gastro was 'waiting for more symptoms to develop' (i.e. giving up). So I went to Amanda's GP (at her insistance - he worked at the same practice at mine) and he gave me a standard on-the-spot urine test. He found blood in my urine and referred me immediately for a CT scan. The CT found a 10cm+ tumour in my pelvis which was squashing my kidneys agaist my back and making them bleed. My bladder had about 10% of its normal capacity and I had a partial bowel obstruction which was threatening to become a full obstruction. The GP couldn't believe I wasn't in excruciating pain. I had a fast growing and agressive cancer and it was questionable wether the tumour could be removed or not by surgery. Luckily I had a very reputable and skilled surgeon remove it about a week later and the rest is another tale, had it been left any longer things might have been a different...
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In June 2007 I went to my doctor at the first sign of something different with my urination. I undertook a simple urine test which showed nothing obvious. I was given antibiotics for a urinary tract infection. A week later with no improvement I returned to the doctors. (In the pre-diagnosis time I saw three doctors all up, at the same clinic.) In the next few months, more visits to the doctors and more urgency and frequently of urination and slow voiding. I was told it was menopausal syptoms and I was given estrogen in the form of vaginal creme. I was then told to retrain my bladder to be able to hold more urine. I also mentioned that I thought there was a little blood in my urine, although no further urine tests were given. During this time two referrals were sent to a womens clinic in a city hospital. Both were apparently lost in the system. By December 2007, there was lots of blood in my urine, so I took a jar of bloody urine into the doctors and asked for another referral to be sent. When finally seen at the womens clinic, the doctor there had alarm bells ringing and ordered a series of tests. By January 2008, the diagnosis of bladder cancer was on its way. Too late to save my bladder but hopefully not too late to save my life.
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Hey Julie, We were going through our illness at the same time! Its amazing how much difference a simple urine test made for both of us. Steve
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Isn't it amazing how simple the test we require are yet they are overlooked. It makes me so mad when I think about how much the medical system have let us down...these are people we have to trust they are experts! I am glad to hera your doing well though 🙂
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Hi Amanda, I had forgotten how much I had to go through until you mentioned it. This is the first time 20 years ago, in the mid to late 80's I went from being a super fit very energeneic person, to feeling tired and sleeping all the time, I went to see many doctors as many as 25 in one year at my mothers insistants I had all sorts of comments from you are just lazy to there is nothing wrong with you, I had a stand up fight, verbal only, with one doctor who after seeing me for one minuet no tests to be told there was noting wrong with me, you see the whole time I was sick I always looked well, never looked sick. After that I just gave up and stayed in bed my family were really worried, a friend of the time spoke to there doctor and told him all about me and how I was really sick and they didn't know what to do. So I went to see him, he was very good ran lotts of test, also by then my neck was very swollen the thyroid had grown it was huge. I was sent to see a specialist who said I would need to have the left side of my thyroid out, I think this must have been before biopsys ,because they opened me up then closed me up, I woke up with everone around me looking like I was aready dead,I had staples in my neck I looked like frankenstiens bride. The doctor said it was cancerious and I would have to have another operation at another hospital to remove it all I needed a radical thyoidectomy, they were so worried I would bleed to death, and also it was wrapped around my vocal cords they also said that I may not have a voice afterwards, luck for me I was fine, I just wanted to add I remember going to a specialist afterwards for something, I went with mum, he called out my name and looked at my mum and I stood up and he couldn't belive it he kept looking from my history to me,I have a giggle about that. Now if I say there is something wrong they listen to me. The sad part I think with todays doctors is you need to know what is wrong with you before you go and we are not doctors!
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In the beginning of March 2008, my then 35 year old husband Andy suffered from on-going nausea and vomitting and was admitted to hospital with a gall bladder infection. The gall bladder diagnosis was made via CT scan. The hospital surgeon also mentioned he found a large 10 cm mass on Andy's liver. He felt that it wasn't anything 'nasty' because Andy had no other symptoms, he was young, not a big drinker and didn't suffer from Hep C.He believed it was possibly something called a Haemangeanoma (a harmless birth mark). I asked if we could get another test to confirm that it wasn't 'nasty'. Andy had a blood test to look for tumour markers. It took days for results to come through and I had to chase them up. There were no tumour markers. It seemed that the hospital staff were all very casual about the mass. 6 weeks later, Andy went for his hospital follow up. They were pleased about the infection clearing-thanks to the anti-biotics. I asked about the mass and asked for a follow up scan. They agreed to organise one. Results showed the mass had grown. The surgeon said he wanted another scan done to be sure it wasn't nasty. Again, the mass not only grew, but a new one sprouted on the other side of liver. My husband had more scans, waited for the surgeon to get a second opinion from another specialist, then we waited for a radio frequency ablasion machine to come from melbourne, then waited for another liver surgeon to arrive from a trip overseas. A friend who is a GP must of realised that this was really serious(we had no idea) and was confused about the delay in surgery, so she organised a second opinion with another liver surgeon at another well respected hospital. The surgeon looked at the scans, then yelled "why the hell have you had so many scans?! It's obvious it's an aggressive cancer, what more are they looking for?" He told Andy that he needed to be operated on immediately, and if our Dr's delayed it further, he would do it himself. We went home that afetrnoon, asked our friends to take our children and we layed in bed and cried and cried all night long, realising for the first time that Andy's life was at risk. Later that week on June 6, 2008 Andy was finally operated on...well thats what was supposed to have happened, but when they opened they realised that more tumours had sprouted- deeming him inoperable. So, on that horror morning, i was told that my husband had secondary liver cancer, primary unknown and that it was incurable. That morning, my world came crashing down, never to be the same again. Less than a year later, as my kids are asleep, I sit here alone, trying to connect with someone in the cyber world because my husband is gone.
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Sallyz my heart goes out to you, I cried as I read your story it is so sad that you had to go through all that, it is so very hard to get anyone to listen to you when you are young, they say you are too young to have cancer.
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Sally your husbands journey is an incredibley sad and avoidable one. I have to say I feel guilty b***hing about my misdiagnosis given my outcome was good, it really is such a big problem for YAC often doctors think it has to be something else. Big hugs to you and your children.
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Hi Sallyz, i just read your story and my heart cried for you and your kids. I was lucky and had an "on the ball" doctor at the emergency ward where I took myself. They took a couple of days to locate the tumour in my bowel, but it was done in time and operated on quickly before the perforation happened. My 20 year old son has just had 2 friends diagnosed with testicular cancer so he begged me to take him to be checked out. They were a little sore so the doctor ordered an ultra sound and urine test. It should all be fine and we get all the results tomorrow, but after my own experience we are all extra cautious. I hope that you and your kids find comfort with each other and that you talk about your husband often and keep his memory alive. Samex
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Thank you Samex. It's comforting receiving your messages. I'm so grateful I stumbled upon this site. It's given me extra drive to make it through the sadness. I'll be thinking of you and your son tomorrow. Sending you my best wishes. Love, Sally xxx
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HI Sally and everyone else .. i have just read this forum with tears in my eyes also. I too have been under the "misdiagnosed" umbrella for about 7 months and i went through a stage where i was really angry with the 6 GPs that i saw over that perdiod of time. A long story really but suffice to say i should have been referred on to a specialist a lot earlier than i was and a big lesson for me to be more assertive. Julie
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Hi This time around hubby's diagnosis was done almost immediately. However, in 2001 things were oh so different. A week before his birthday he had a seizure (his first) at home. I called for an ambulance and after being grilled for what seemed like a long time they finally agreed to send one. The ambulance officers who arrived treated hubby as if he was a drunk. He was very disorientated after the seizure and although by the time they arrived he was able to get up, he had no recollection of what had happened and had wet himself. Anyway, he gets taken to the emergency department and they run the whole gamut of tests. At one point there are 4 doctors looking over his scans and one is consulting a book ( I begin to get worried then). They ask if he has had previous injury to his brain and he mentions a fall he had when he was 10 when he hurt his head. The next morning they deem him well enough to go home. However, as he has had a seizure, he is told that a neurologist will have to clear him to drive. There was no way hubby was going to stay off the roads for a long time so he immediately made an appointment to see a neurologist in the city (we lived in the country at the time so had to wait a month for an appointment). The neurologist took one look at his scnas and referred him immediately to a neurosurgeon. After the tumour was removed we were told that if it had gone on undiagnosed, by the end of that year it would have been inoperable (because of location) and he would probably have died. I am very thankful we bought ourselves another 8 years all because of his stubborn streak. Now we face a different battle (its gone up a grade) and I am counting on that stubborn streak to get us past the line again!
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Hi, This is my biggest beef with medicine here. I'm sorry if this offends anyone, but my father was turned away TWICE from two doctors saying that blood in the urine was something that occassionally old people have, they didn't refer him to a specialist, he had to FORCE it by demanding he be referred to one. This was precious time lost and by this stage his prostate cancer had already encroached upon the base of the bladder. I'm so sorry this happened to you, and this is something I would like to address too. At the risk of sounding possibly American, which I'm not, even though I've lived there, this is something that is terribly avoided as doctors are sued for this type of thing. And for fear of this Doctor's ensure they a)investigate and b) do all available testing to ensure the results either way. So they are accountable for their actions. I feel here that doctors are a protected species here because of the public health system, for instance, a building site manager can be prosectued if he doesn't ensure OH&S legislation isn't met and a fatality occurs, the same should apply to doctors. Just my two cents worth. The system here needs to change
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Hey PS, You are so so right, our medical system is not at the level it should be. My aunt was 36 when she had an abnormality on her pap smear, she was told not to worry about it. 6 months later she was rushed to hosital for emergency surgery for her cervical cancer...then 1 year after that passed away. Something I will never forget I was only 13 at the time. her time was cut way to short and it was not her own doing, she trusted her doctors. I obviously worte the beginning thread was 6 years misdiagnosed. My husbnad spent 6 months being misdiagnosed and although we kept pushing Drs kept just avoiding tests ect. Luckily someone ordered a full body scan and found his pelvic tumour which needed extraction immediately. He almost lots his life because of Drs not doing their job. Our system does need an overhaul, our Drs need to listen. I believe Drs bedside manor these days is atrocious, they are so busy saying "i don't know, its porbbaly nothing" or "lets investigate futher" they palm off the issue and put us all at risk of not getting the treatment we require in time. Infact your suggestion of our medical system overhaul I think deserves its own blog, I would love to see everyones opinions on the current system. Thanks for bringing it up PS, as you can see its a big bear of mine. Amanda
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Hey Amanda, You are absolutely right. I am interested and hope there are others who out there want to push for things to be improved, for doctors to become accountable for their actions, its just not good enough to say oops sorry I've goofed or even worse to try and hide it or not acknowledge their errors with regards to diagnosis and treatments provided. Some oncologists even stunned me with not being up to scratch about new treatments or medications available either. I understand the system is underfunded and there is a lack of staff, but we can't continue to allow things done in a rush because of patient demands and not enough professional oncologists, doctors etc. Legislation needs to be changed which allows doctors, nurses and hospitals private or public to be more accountable for treatments and diagnosis, errors like this will be far less and just like in any position, you aren't protected from legal action because you have shown incompetence in your field of practice. Another beef of mine is Private health insurance. What on earth is happening here? My late father had the top of the line insurance with MBF and it really wasn't worth what we were paying for month for him. My hubby and I have it too and we basically get nothing out of it except for choosing a private hospital and getting a bloody newspaper each day. If insurers are going to offer private coverage then they need to do more than what they are doing now, ie providing better dental coverage, covering most costs relating to cancer medications and treatments instead of a paltry percentage. Considering that the PBS covers quite a few treatments as does Medicare, MBF and the rest are practically covering nothing. They should provide the services we are paying them for each month and maybe more would join. Its ridiculous, for instance my father was on Gabepentin for pain, but the PBS only covered it if you suffered from epilepsy and not for cancer. I don't need aromatherapy or physio coverage, but I need other things which are far more important and you always end up paying out of pocket for what medicare and private insurance provides. Another beef whilst I'm bitching away is the fact that there aren't specialist cancer diagnosis and treatment centres. That you have to share facilities with those that are either elderly or pregnant women in wards. There is nothing like the Peter MacCallum Centre in Sydney. Even though the late Professor at RPA started a specialist cancer centre. This is so many years so late, compared to the centres in the USA. Why can't we as Australians have a top notch cancer facility that appears in the top 10 lists in the world for exclusive and excellent cancer facilities? It seems here that healthcare is centered around the young and healthy, and if you are terminally ill or old you aren't given as much attention. One or two voices won't make a difference, but I am interested and I'm hoping others are here too of starting a group thats going to be a strong voice to try and get things moving and done for the interests of cancer and other terminally ill patients in Australia. Amanda a blog is a great start. It's a thorn in my side too Amanda, I went through 5 years with my own father and its a subject very close to my heart, the fact is healthcare is NOT what it should be in this country considering the taxes etc we pay. Yes I will say there are some fine doctors here but these are exceptions to the rule I'm sorry to say. We need more awareness, more funds dedicated to the terminally ill and most of all the mentality of professionals treating cancer and other terminal illnesses needs to change, in the long run being proactive and trying to prevent the onset of these illnesses as well as early detection will save the taxpayer and govt millions of dollars, Why is it always that they work to fix it once its happened instead of trying to test and prevent the onset if possible of full blown disease? C'mon people. I don't believe that everyone is fully satisfied with the treatment and attitudes here of the medical profession towards cancer and other terminal illnesses. Lets all speak up and try and get things changed here.
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Your comments have brought tears to my eyes but for a different reason. You see, you can knock the system but I find it quite sad to knock the doctors, they can only work with what they have!! You say there are only a few 'good ones' sorry but not in my experience. The fact is that in a young healthy person, cancer is usually the last thing a GP looks for, one reason why we all advocate for better awareness for young people diagnosed with cancer. Every single Doctor I have met or been treated by has been nothing short of amazing, wonderfully supportive, highly skilled, highly trained, very special people. If the system fails them in some ways & there is room for improvement, then how can the doctors be held accountable for that? I would say that most if not all, go into medicine to help people, not because they want to spend 12 years studying, and nights and weekends away from their loved ones. You speak of the late Professor O'Brien, he was an amazing man & a wonderful Doctor. His arguement was for the lack of holistic & physiological care for cancer patients, not the medical care. I also have the experience of losing a family member 6 months ago to cancer, he was not young. Palliative care was amazing, these people deserve a medal for what they do. They are angels, and deserve as much praise as can be given. Happy patient.
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Hi Vanessa, You are incredibly fortunate to have encountered such good doctors and medical professionals in your journey but many others haven't been as fortunate. The system is a problem and that is obvious in many ways not only for those suffering from cancer or other terminal illnesses, but unlike your good fortune, there are others who have not had positive experiences or who have succumbed to their illnesses earlier than they should have and thats due to complacency or misdiagnosis and that must be acknowledged and those who are guilty of either should be made accountable was my point. My comments werent' specifically directed at doctors but the entire system, and doctors are part of that system and seem happy to spend the 12 years studying to maintain the status quo which is unacceptable to most. I am grateful that you shared your positive experiences, but I could tell you many that have been horrifying and that is inclusive of Palliative Care where I have personally witnessed patients left soiled, not fed, and who are basically left to die in their bed in a morbid ward with as little maintenance as possible, including not having enough staff to be able to lift a man to the toilet and telling him they were too busy to assist him. Not acceptable. I experienced this. Not all Palliative care people are amazing and some should not be working in that field. Another point is that the level of services aren't consistent from facility to facility. But my main point was that our healthcare system in this country is NOT what it should be and I find it hard to believe that anyone can dispute this! Interestingly, above my post is another poster who suffers from cancer and who created the misdiagnosis thread who has experienced it herself, so clearly I am not alone in wantinng higher standards. Anyhow thank you for the response, but I politely agree to disagree with you.
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While I have previously commented on this blog , I can't help but agree with Vanessa. My care was wonderful and my ongoing care has been exceptional from both my oncologist and my surgeon, let alone the oncology nurses in the cancer clinic at my local public hospital where I had chemo for 6 months. I genuinely feel for those of you who had awful experiences but in response to your experiences with palliative care, I have had 2 friends die in the past 4 years in different parts of NSW. While we do not have the wonderful facility that is in Melbourne, Calvary Hospital in Sydney and its pain management staff went above and beyond the call of duty for my friend. Perhaps what we should be advocating for is improvements in facilities as a matter of course that would be of benefit to all in our society. Just a thought. Samex
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Hi Amanda, I must admit, This is one thing that i was very lucky with, I was only 30 when i started showing signs of severe tiredness and being lethargic, I was a extremely fit and slim young person who before i got diaganoised was on the go practically 20 hours a day as you can imagine having 7 young kids, something always needs to be done. I was at my doctors with my baby who was 5 months old for a checkup and my doctor had noticed i wasnt looking so good, it was actually him who organised everything {tests, etc } and told me something needed to be done early to find out what was happening with me. I got my referal to my surgeon as she was fantastic. For me i cant knock any of my doctors or surgeons as both of my surgeons and my doctor have been outstanding. They have got me and my family through my 3 operations and my other medical probs and have always been there when i need it, happy to answer any questions or suggest any new things. I am sorry to hear others have had problems but my advice is look around till you are happy and find someone you can trust.....
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