POLL: How long did it take for you to get a diagnosis?

[Mary]

Here's another poll - just click on the answer that fits. How long did it take for you to get that diagnosis? I'm not talking about the "we think it might be," or "we are pretty sure it is." How long before you KNEW what you had?


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[Janine]

It took over two years to get a diagnosis.

[Aimee]

Once they figured out what it was, it all together took about a year and 1/2. They thought it was calcificaitons and then " just a broken wrist".

[Charlene]

okay here's my story - it took 8 months from my first doc visit to receive dx of non-ossifying fibroma of my right distal femur in 3/94.  then another 2 yrs for a followup MRI, in 4/96, revealing a change in my tumor.  and yet another month before a biopsy was done.  on 5/22/96 the correct dx of high-grade osteogenic sarcoma was given and my life as a cancer survivor began.   the clincher is that in 12/05, almost 10 yrs after my correct dx I learned my tumor was never a non-ossifying fibroma but rather osteosarcoma all along.  Absolutely amazing!!!!

charlene

[Cliff]

I had chronic back pain for two years before finally being diagnosed.  In fact, I had such a bad primary care physician that I had to force him into giving me an MRI.  He was so confident that it wasn't anything that he wouldn't authorize it on his own.  I also had other symptoms that gave it away, like a sharp electric shock occasionally when I jumped for shots in sports.  When this happened (about five times during the course of the year before diagnosis) my legs would often go numb for a moment.  If that's not a direct indicator that there's something wrong I don't know what is.  Anyway - I had had two x-ray sessions before finally getting the MRI and neither showed anything.  So several words of advice:

(1) If you have a strange pain that really doesn't seem normal - check it out - especially if it won't go away or gets worse.
(2) If your doctor refuses to authorize a scan that you would consider to be vitally important - either get him/her to do it or get another doctor.

[Desiree]

Hi!

It took me more than 6 yearst to get a diagnosis!

First day of pain was in April 2000! From 2000-2005 diagnosis was "tendosynovitis", then in September 2005 diagnosis was "fibrous dysplasie" a benign bone tumor and finally in August 2006 I was diagnosed with EWS.


Hugs, Desiree

[Alan]

It depends on where you start! I have had back pain all my life - due in part to being so tall (and having a long back) and having fallen from a threshing machine when I was five years old! I visited the GP in June 2004 with hip pain and was referred to orthopaedic surgeon because my father had had three hip replacements and I believe the Mendel was right! X-rays showed nothing abnormal so I soldiered on for a while. In April 2005 I was singing in a church in Bristol and kept falling over my own feet in the procession. As no-one else was doing this I figured it was NOT the effects of incense. Having tripped over my feet twice more during the summer I revisited the GP in September. This time he thought it MIGHT be scoliosis and referred me to the same orthopaedic surgeon. He ordered up an MRI scan, which showed a large mass in my back. So was sent to the Royal National Orthopaedic Hospital (Stanmore, UK) where, after a MDT conference, a further MRI and a needle biopsy, I was told that I had Chondrosarcoma arising from the lumbar spine (L1/L2). This was on 10 November 2005 and surgery was on December 12. The tumour was 175mm x 110mm x 75mm and was totally removed, including a healthy margin.

So - all in all it took about 18 months.

[Olga1963]

If I had listened to the first doctor it would have taken months for my daughter to be diagnosed but since I am hard headed I insisted on an x-ray from the get go and her tumor was detected. A day later she had an MRI and the following day we were told the results. The oncology orthopaedist saw her within two days and we came back home two days later with a biopsy done and the port implanted. All together from beginning to end for diagnosis was a week.

[Brett]

I first went to the doctor in mid-December (2007) experiencing back pain.  I received the official diagnosis in early February (2008).  Roughly three months passed before a diagnosis was made.

[Karen_02]

I was in the Hospital to have it removed within one month.

[Kelly_Marie]

An entire year, where ortho dr. injected steroids and telling me it was stress.  Then they gave me a CT where they saw a mass in the L4/L5 spine area, told me a lot of people have benign mases in their backs.  I sure thought I was a wimp as I looked all around me at the world filled with these people who have what I have and aren't complaining.

January 1996 I found a neurosurgen who when he saw me had me immediately on his surgery table the next day...a year later finally someone took me serious.  Now it did take another 3 monthes to correctly identify the tumor tissue but by then I knew this was not just stress!

Blessings,
Kelly Marie

[Julie_95]

First symptom was like having a pop corn kernel stuck between my teeth, that was late summer,
I just happened to have a dentist appointment and mentioned it. He thought maybe it was just one of my teeth.
Then my chin had a numb feeling.  He was concerned at that stage. He sent me every type of xray that was available.
But could see nothing. Then the pain started.. just at night.. unbearable.. Then I developed a lump on my cheek.
Dentist sent me to a oral surgeon.. oral surgeon removed it and sent it away. It came back benign. With in  a few days lump  was double the size . Oral surgeon removed it again. this time in his office.. It took hours.. Sent that  away.. came back benign
Then he sent me to a oral clinic in a large city, he looked at me and said maybe its a tumour thats non cancerous.. and he sent it away to three large hospitals. He phoned me on News Years Eve and said it was bone cancer.

[Anna]

I am sitting here in amazement at how long it took some of you to get diagnosed!! That is scary to me. It sure shows you need to take charge of your own care!

I think my diagnosis was accelerated because my dad is a chiropractor with xray machines. I was 15 and had a lot of pain while dancing and playing softball, and soon I could not bend my knee anymore. So my dad took me to his office and x-rayed it, and knew immediately that it was a tumor as it was pretty big. He didnt say anything to me or my mom though, just got me in the next day to a top radiologist he knew to get an MRI. I had the biopsy and diagnosis within 5 days.

[Rene]

It took a little over a year from 1st symptoms to diagnosis. I was told I had a sprained ankle after an xray. Symptoms disappeared for 6 months then reappeared with pain and swelling in the ankle again. I saw a rheumatologist and podiatrist over the next 6 months. I was given an MRI, told I had a bone cyst and fracture of the heel, and scheduled for surgery to repair it. While in surgery they found it was cancer in my heel, most likely lymphoma. It took one month for the pathology report to come back as Ewing's. The only other symptoms I had were dizziness, which I never reported, gradual weight loss and anemia.