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Telangiectatic Osteosarcoma Misdiagnosed

BaffledPortrait
Posts: 4
Joined: Dec 2009

Hi everyone,

i just discovered on Wednesday that I have telangiectatic osteosarcoma and am still in a bit of shock. I'm 23 years old, have a 2 year old daughter, and am about to start graduate school. I was misdiagnosed for a year.

I have suffered from "benign" bone tumors for about a year now. I began having pain in my left upper tibia in November 2009, my doctor finally sent me for an x-ray and then for a CT, MRI and so on. I was then referred to an orthopedic oncologist. I had my first biopsy and surgery in January 2009 and the pathology report came back as being an aneurysmal bone cyst. I was fine for 7 months. I began having pain and swelling again in July and discovered my lesion had come back and spread into the surrounding muscle. I had it removed August 18, 2009 and had severe drop foot following my surgery. I went through PT for my foot and regained most of the use. Come November, I had pain and swelling again. I was sent for a MRI and lo and behold, it came back again and was in both muscle and bone. I had surgery December 2, 2009. This time my orthopedic oncologist who was also my surgeon sent the entire tumor to the Mayo Clinic in Rochester. They came back with the diagnosis of telangiectatic osteosarcoma. I go in for a PET scan and a CT scan of my lungs on Wednesday.

I'm devastated. How in the world could they miss this twice? What in the world are the chances that it hasn't spread already? My oncologist believes that I may lose my leg since the tumor had already invaded the muscle.

I won't know much until I found out if it has spread. Has anyone else been through anything like this?

rmaitral's picture
rmaitral
Posts: 24
Joined: Dec 2009

Yes, I have. In 2002, I was diagnosed plasmacytoma in my back. The tumor destroyed vertebrae t7 & t8. My back was rebuild in 2003 and cancer free. If plasmacytoma re-occurs it normally becomes Multiple Myeloma. I was down to checkup every six month which included a blood test, full body x-ray and bone scan. In June I started to have pain in my side, it felt like i had been hit with a bat. The pain increased and extent to my back. My doctor did my normal tests plus MRI’s from my back to my head, with and without contrast and everything reported normal. New symptoms were neuropathy in both legs and arms. I was sent to a specialist and more tests that revealed that thing was normal. The specialist wanted a MRI in the lumbar area and a small hole in my right hip appeared. I was sent back to my Oncologist for a CT scan and a biopsy if needed but I was told that it was very unlikely to be cancer with all the tests as normal. Wrong, they did take a biopsy and oops it is positive, a” re-occurring plasmacytoma in a different location”.
I was devastated also. Why didn’t they know, and then Thursday I was told that there are only 13 now 14 cases reported with re-occurring plasmacytoma in a different location. There is so little information on my type of bone cancer. Does everyone fall into the same box if you have the right symptoms? Both you and I would like that to be true but it is not.

I’m 7 days into my 18 days of radiation and hoping that destroying the tumor will stop the neuropathy and pain.

My thoughts and prayers will be with you on Wednesday.
Roger

BaffledPortrait
Posts: 4
Joined: Dec 2009

Hi Roger,

Goodness you have been through a lot. It's very frustrating that doctors miss things that are so very important. I know that this isn't typical of all doctors but between you and I, the experience of accidentally missing huge things that have an adverse effect on our health. Are you feeling any better or is the radiation really wearing you down? I hope you can at least enjoy the holidays approaching.

I had to reschedule my PET/CT scan because of problems with my insurance. They are doing a "clinical review" of my case to determine whether or not I need the scan, which is ludicrous. Of course, it all boils down to money. I'm afraid I may have to pay out of pocket for this test, which certainly isn't cheap.

I hope you have a Merry Christmas!

Jamie

ara
Posts: 1
Joined: Oct 2012

I started having trouble in Feb. 2010 I had a bad head cold that turned in to a severe cough. I felt a sharp pain in my back(T5) which is right between my shoulder blades. Could not hardly move. Made appointment with my primary doctor which said sounds like a pinched nerve in my back. Was refered to theapy for four months. Changed several theapist. Finally I was in so much pain, my husband took me to the ER. Dr. there said I had pneumonia, sent me home with antibotics. The meds made me very sick which caused me to go back to ER. After CT's and blood test,the doctor at the ER came in after 4 hrs and told me and my husband I had Cancer. Plasmacytoma, that was June 16th 2010. The tumor shattered my t5 vertebra. I then went through weeks of radiation, and lots of different kinds of meds. They said the tumor was gone. In September 27th I had the proceedure to replace the vertebra. December 10th I was put in ICU because the proceedure caused infection to the T6 and T7 vertebra. I was there for 7 days not knowing if I was going to make it. I had so many shots, pills, and test.One day I could not hold back the tears. I was misable. I am on my way to recovery now, I go in once a month to my Oncologist,and get a 2 hr infusion of Pamidronate (which is a med that forces the calicum in my blood to the bone.) Dr. said I would be on it a year, then down to once every 2 or 3 months, for the rest of my life. Also have to go in for blood test every month.
I have went back to work, a half day and trying to life one day at a time with lots of pray and hope.

ivasativa
Posts: 1
Joined: Mar 2010

Hi,

As I start writing this, I have to admit to you, I sort of feel a lump in my throat. I hate hearing that you are 23 and have a daughter, and have been struck with this...shortly called TOS.

Im 28 now, and was diagnosed with the same type a year and a half ago. You shouldnt be surprised that they missed it. Its not easy to diagnose especially this type of cancer, that is so rare. TOS is very rare. Im being treated now at MD Anderson in Houston, and the chair of the osteosarcoma committee here, who has 30 years of experience with sarcomas, has only seen 5 of them in his career. It took about 6 months for mine to be definitely diagnosed.

I feel for you and Im saddened by the existence of these things. This will not be an easy time for you and your family. Please brace yourself. Try to focus on being strong. Standing firm. Focusing on the little things that make up your day.

I have heard of people dying from cancer within 6 months of their diagnosis. Well its been a year and a half now since mine, and I am still alive. I guess I was lucky that way. My TOS was 'extrasceletal' meaning it wasnt attached to any bone, it was in my pelvis. I lost all my pelvic organs, bladder, rectum, uterus and vagina. No tumor has reoccurred in the primary tumor area, but I do have mets. I hope you don't.

If you want to talk about anything with me some more, just write.

With love,

Eva

shawnmcc
Posts: 21
Joined: Nov 2011

Yep this kind of misdiagnoses is very common place. One hospital diagnoses one kind of cancer and the other a entirely another. Like with me mayo osteoma sarcoma the other Ewing.

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