Woman self diagnosis Ovarian Cancer; used Google after doctors error; Now has 2 years to live

By the time cancer was discovered, it was the size of a melon.

A young woman suffering excruciating stomach pains diagnosed herself with ovarian cancer using Google.

By the time the Sadie Rance's disease was discovered, a tumour growing on her ovary had reached the size of a melon.

Until then, the 22-year-old had been told her agonising stomach pain and constipation were caused by irritable bowel syndrome (IBS).

As her pain became unbearable Mrs Rance turned to the internet to search for answers.

She discovered her symptoms met almost all the key signs of advanced ovarian cancer.

After requesting more tests doctors diagnosed her with stage four ovarian cancer in September 2013.

In January last year doctors performed an exploratory operation but discovered they could not remove the growth, because it had attached itself to her internal organs.

The advanced cancer had spread to her small bowel, liver, diaphragm, heart and lungs.

Mrs Rance has now been told she has between one and two years to live.

Mrs Rance, from Bromley, Kent, said: 'The trouble I had was that ovarian cancer is very rare in people under 50, and the type I have is even more rare, so I don't think it was ever even something that was considered.


WHAT ARE THE SYMPTOMS OF OVARIAN CANCER?


The signs of ovarian cancer are not easy to spot and can be vague.

They can just about all be attributed to another less serious condition, particularly where the disease is less advanced.

Many women suffering the very early stages of ovarian cancer, stage one, won't have any symptoms at all.

If they do notice changes, they are most likely to suffer pain in the lower abdomen or side, and bloating, or a full feeling in the abdomen.

By the time ovarian cancer has spread outside the ovaries (stages two and three), the symptoms include:
irregular periods or vaginal bleeding after menopause
lower tummy pain
back pain
passing urine more often than normal
constipation
pain during sex
a swollen abdomen
feeling of fullness or a loss of appetite

When the cancer spreads to a distant body organ, for example the lungs, it is classed as being stage four ovarian cancer.

Symptoms in this late stage include:
loss of appetite or feeling full
feeling or being sick
constipation
tiredness
shortness of breath
noticeable swelling of the abdomen

Source: Cancer Research UK

This is heartbreaking. I had a dear friend online who passed away from Stage 4 Breast cancer. She had IBS Breast cancer. It goes misdiagnosed as an infection often and by the time they discover what it is, it's already in stage 4. They chemo alone gave her 4 heart attacks. In the end it was too much for her body to bear.

I was also the one who diagnosed my daughter's autism. It took 6 years of fighting to get her diagnosis, and a few apologies. My daughter has Agensis of the Corpus Callosum. it essentially means she was born missing the Corpus Callosum (part of the brain). Now part of the reasons doctors wouldn't diagnose her as autistic was because Autism and ACC have similar symptoms. So they would tell me I was seeing ACC symptoms, not Autism. I kept trying to convince them she has both. I was being told there's no way both can co-exist. I finally went on Google and found parents of children who have both disorders. After printing tons of medical papers, parent testimony, you name it, I got her in to see an autism specialist, the BEST in the state. Needless to say after observing her, talking with her and playing with her for about an hour, his exact words were, "Google is your best friend, she's autistic."

Just because your doctor says one thing, it doesn't always mean you have to rely on them. If you aren't sure, go with your gut. Your health, or your family's health, is more important.


(Go with your gut, AND a second medical opinion. And blame the edit on Phage! )

a reply to: Anyafaj

If you aren't sure, go with your gut.

A (medical) second opinion can't hurt either.

a reply to: Anyafaj

Not exactly sure what your point is here. Are you suggestingy that if google conflicts with what your doctor says, you should go with google? Also, just out of curiosity, how was the distinction made between Autism and ACC given that the symptoms are quite similar?

Doctors cause 1000x more deaths pear year in the US than guns.

True fact.

Btw, my doctor uses Google. I like him because he's honest. He went to med school, but as he said, it's impossible to memorize the thousands upon thousands of illnesses out there. Much quicker to Google your patients symptoms during their appointment, than try to look it up in a book.

You would be a fool if you don't think your doctor uses Google too when he leaves the room.

originally posted by: Phage
a reply to: Anyafaj

If you aren't sure, go with your gut.

A (medical) second opinion can't hurt either.

Most definitely. (I kind of meant that by the gut, but you're right, I should have been more clear. Thank you.)

originally posted by: kayej1188
a reply to: Anyafaj

Not exactly sure what your point is here. Are you suggestingy that if google conflicts with what your doctor says, you should go with google? Also, just out of curiosity, how was the distinction made between Autism and ACC given that the symptoms are quite similar?

My point is, if you do not 100% agree with your doctor, you do not have to be a quiet church mouse. It IS ok to get a second opinion. This woman happened to find her answers online, as did I. That is NOT always the case. Her doctors eventually listened to her, sadly too late. Again, not always the case. I had a doctor that refused to listen to me when I told him I only slept an hour a night. His response? I don't prescribe narcotics for arthritis. I never asked for narcotics. Who the heck said that! Find out why I'm not sleeping! It's not normal! Finally I had to switch doctors. I found out I have fibromyalgia and a pineal cyst in my brain that was making sleep impossible. I wasn't getting Level 4 REM sleep. Something we would have learned had the original doctor done a sleep study. But he acted as if I were a junkie looking for a fix.


And I said that the symptoms of Autism were similar to the symptoms of ACC. Doctors ignored Autism completely because they said her problems were stemming from ACC, NOT autism. I said it was from BOTH and it was possible to have both. Because both conditions have symptoms that overlap, doctors will look at condition number 1 and say, we found the problem, stop looking! In my daughter's case, the problem was condition number 1 & 2! Not just 1. She was ineligible for certain services, including head start, early learning problem, speech therapy, etc... until we were able to get the Autism diagnosis. I knew from certain behaviors she was autistic. She didn't speak until she was almost 4. Her biggest word was Nugga Nye Nugga Nye, Nugga Nye Nye Nye. Which was apparently McDonald's. Try communicating with that. I even attempted to teach her sign language to find a way to communicate with her. But to doctors, it was not autism. As a mother, I just knew.

a reply to: Anyafaj

But you did not really address my question. I'm wondering how one would differentiate between her symptoms being a direct result of her ACC, and her symptoms being the result of something completely other than ACC. Autism is simply a collection of behaviors and personality traits--there are no clinical tests that can confirm a diagnosis of autism, just a cognitive work-up. In order for you to conclude that your daughter has autism in addition to ACC, your daughter must have specific symptoms that are unique to autism which cannot also be attributed to ACC. I'm wondering what those symptoms were. If ACC can mimic autism, what makes you sure that all of her symptoms are not a direct result of ACC?

a reply to: WP4YT

Could you please provide evidence that doctors cause 1000x more deaths each year than guns? That's more of a rhetorical question, because I know that you cannot--this statement is simply ridiculous. Also, sure, doctors use google to refresh their memory on certain things, but doctors do not type in symptoms as their primary reference to come up with diagnoses. Nearly 100% of all doctors will already have a short list of potential diagnoses by the time he's done interviewing and examining you. Next, he will order certain blood tests and imaging tests to narrow down that list, and rule-out or rule-in the diagnoses.

originally posted by: kayej1188
a reply to: Anyafaj

But you did not really address my question. I'm wondering how one would differentiate between her symptoms being a direct result of her ACC, and her symptoms being a results of something completely other than ACC. Autism is simply a collection of behaviors and personality traits--there are no clinical tests that can confirm a diagnosis of autism, just a cognitive work-up. In order for you to conclude that your daughter has autism in addition to ACC, your daughter must have specific symptoms that are unique to autism which cannot also be attributed to ACC. I'm wondering what those symptoms were. If ACC can mimic autism, what makes you sure that all of her symptoms are not a direct result of ACC?

Her ACC was diagnosed by accident, if you will. The doctor noticed she had very severe ADHD among other behavioral problems at the age of 3. Plus there was a major family history of neurological problems on both sides of the family. He asked if he could do an MRI for his own curiosity and she would be asleep the whole time. I said that was fine. He called us in 2 weeks later to tell us what he found and I about passed out from shock. I still don't know how I got on the bus that day to go home. Lt's just say autopilot was on.

I'm not going to argue the point with you. If the doctors agree her symptoms are related to autism and ACC, and I know this, why can't that be enough for you?


Feel free to read and learn I can't do it all for you, you know

ACC


(Now mind you my daughter was diagnosed in 2004, this article was published in 2014. Also remember I had to fight 6 yrs to get that diagnosis.)
A link between Autism and ACC

"We and others had noted this resemblance between AgCC and autism before," explains Lynn Paul, lead author of the study and a lecturer in psychology at Caltech. But no one had directly compared the two groups of patients. This was a challenge that the Caltech team was uniquely positioned to do, she says, since it had studied patients from both groups over the years and had tested them on the same tasks.

"When we made detailed comparisons, we found that about a third of people with AgCC would meet diagnostic criteria for an autism spectrum disorder in terms of their current symptoms," says Paul, who was the founding president of the National Organization for Disorders of the Corpus Callosum.

One important difference between the two sets of patients did emerge in the comparison. People with autism spectrum disorder showed autism-like behaviors in infancy and early childhood, but the same type of behaviors did not seem to emerge in individuals with AgCC until later in childhood or the teen years.

"Around ages 9 through 12, a normally formed corpus callosum goes through a developmental 'growth spurt' which contributes to rapid advances in social skills and abstract thinking during those years," notes Paul. "Because they don't have a corpus callosum, teens with AgCC become more socially awkward at the age when social skills are most important."

ACC Linked to Autism

The corpus callosum is a wide bundle of over 200 million axons which link the right and left hemispheres of the brain. During development, this important bridge is not always formed correctly and can either be malformed or partially or completely absent. This condition is referred to as Agenesis of Corpus Callosum (AgCC). A group of researchers have established a link between AgCC and autism. The announcement comes from the lab of Ralph Adolphs of Caltech, and the paper published in the journal Brain.

Though severing the corpus callosum can alleviate seizures in those with severe epilepsy, a rare defect which first presents during the first trimester of pregnancy leaves some without that structure, or with one that was not completely or correctly formed. AgCC typically isn’t fatal, but those with the condition may have delayed developmental milestones, social difficulties, memory issues, and/or cognitive impairments. These are also many of the same symptoms of autism.

Rare birth defect may yield insights to Autism

A rare birth defect may offer a unique perspective on the connectivity theory of autism, which holds that the brains of people with autism have defective long-range connections.

Up to one-third of those missing all or part of the corpus callosum, a thick tract of nerve fibers connecting the left and right brain hemispheres, meet the diagnostic criteria for autism, several recent studies suggest.

“One of the most consistent findings in autism is diminishment of size of the corpus callosum,” says Elliott Sherr, associate professor of neurology at the University of California, San Francisco, School of Medicine.

About 1 in every 4,000 people lack part or all of the corpus callosum. The condition, increasingly diagnosed before birth, is formally known as agenesis of the corpus callosum (AgCC).

“When we’re talking about autism these days, we’re often talking about it as a disorder of long-range connectivity — and AgCC is the ultimate disconnection model,” says Elysa Marco, assistant professor of clinical neurology at the University of California, San Francisco, School of Medicine.

It’s often not clear what causes the abnormality, which strikes early in brain development. But a growing number of brain imaging studies are shedding new light on the extent and details of the condition. Some people are missing the entire corpus callosum; in others, a fragment of the structure remains. Structural damage can be limited to the corpus callosum (dubbed ‘isolated’ AgCC) or spread across the brain.

As in autism, symptoms of AgCC can vary widely. Some people with the defect may have severe epilepsy, cerebral palsy or developmental delay. Others, primarily those with isolated AgCC, are able to attend college, hold down a job and raise a family.

In fact, they do so well that “some people think that callosal agenesis has no impact on functioning,” says Lynn Paul, senior research scientist at the Caltech Emotion and Social Cognition Laboratory in Pasadena, California. But Paul and others say that even those who are most successful usually have subtle language and social impairments.

The findings are broadly similar to those reported last year by another group of researchers2. In that study, researchers administered the Autism Spectrum Quotient, a screening instrument, to 106 people with AgCC or, in the case of children under age 16, their parents. The researchers found that 45 percent of children, 35 percent of adolescents and 18 percent of adults with AgCC reach the threshold for an autism diagnosis.

Am I done being YOUR Wikipedia now or have you learned how to use the interweb yet?

a reply to: Anyafaj

Clearly you're misinterpreting the crux of my question. I'd like to mention that I am a doctor myself. I know what autism is, and I know what ACC is--thus I am aware of the similarity between the symptoms of ACC and those of the Autism Spectrum Disorders. I will not push this topic any further, as I am afraid I may be coming off as insensitive, which was not my hope.

originally posted by: kayej1188
a reply to: Anyafaj

Clearly you're misinterpreting the crux of my question. I'd like to mention that I am a doctor myself. I know what autism is, and I know what ACC is--thus I am aware of the similarity between the symptoms of ACC and those of the Autism Spectrum Disorders. I will not push this topic any further, as I am afraid I may be coming off as insensitive, which was not my hope.

Then please explain your question in a better way for me to better help me to understand. Honest I would like to. I will chalk yesterday up to a bad day. As you can see this is a sore subject for me because my ex-spouse refused to learn about our daughter's condition and continued to refer to her as a "retard" or "manipulative brat". Start fresh?

originally posted by: Phage
a reply to: Anyafaj

If you aren't sure, go with your gut.

A (medical) second opinion can't hurt either.

Sometimes that second opinion is hard to get. In Canada there's a doctor shortage, hard to find a first opinion. That, along with high triglycerides from my last blood work, has me trying to get a handle on sugar addiction. The doc didn't even suggest anything other than statins.
Docs want to take the easy way out. I think we need to tackle causes of illness before the symptoms. If possible.
Google can be a real help but there's also a lot of bad info out there. We do need to be careful.
And eat vegetables. Can't go wrong with vegetables.