`Recently Diagnosed with a Sarcoma - anyone else in the same boat?
I have recently been diagnosed with a Sarcoma in my Iliac bone (pelvis). I am currently the only person attending the hospital with this kind of cancer.
It started with a pain in my back like sciatica, first doctor diagnosed sciatica and sent me home, second doctor sent me for a CT scan and it showed up on that.
I went from a pain in my back to not being able to walk or touch my right foot within a week.
I have had 5 rounds of chemo and I have 4 more days left of Radiation therapy! I have a scan on the 4th of Feb and my results on the 11th of Feb 2013.
I am just wondering is there anyone else out there with the same or similar cancer. So far after round 3 of chemo it had shrunk by 50% my next scan is Feb 4th. My husband was told if it didnt shrink that I had 2 years.
I could not walk for 3months I am getting around quite well on crutches. I was on every drug that they could give me to stop the pain including: Pregablin, Oxycontin, Oxynorm, Methadone, Morphine Patches and Ketemein (horse tranquiliser) and that is just the ones I can remmeber. It took the palative care team 3 weeks to get my pain under control.
I`d like to compare notes with anyone who has gone or is going through something similar.
Re: `Recently Diagnosed with a Sarcoma - anyone else in the ...
I'm 24 and I too was diagnosed with a type of sarcoma (Ewing's) in my shoulder and spine. I was diagnosed almost 2 years, and it came from nowhere. What started as pain at the edge of my shoulder blade transformed into tingling in my lower limbs. I went to a hospital one night to get stronger medication to deal with the pain, but whilst in the waiting area the pain dissipated and the tingling began along with weakness in my legs whilst walking. I had an X-Ray, but was sent home with stronger pain medication despite the tingling and weakness.
The morning after this tingling sensation started, I woke up with no feeling or movement below my ribs. I was taken to emergency where an MRI picked up the tumour, and I had surgery that day to remove the half of the tumour which was in the spine. I then underwent 12 cycles of chemotherapy and 6 weeks of radiotherapy.
With the tumour initially being in my spine, it caused damage to my spinal cord, meaning I had to do the whole learning to walk again thing. This meant I was in a wheelchair for a few months, then a walking frame, then crutches for a further 8 months.
Because of this, I was in hospital for the first 3 months of my treatment as I couldn't properly care for myself. I was back and forth between a rehab centre and peter mac cancer centre during this time whilst I got good enough walking around with a walking frame.
I am now cancer free, with my 12 months post-treatment scans coming back a few days ago as all clear!
In terms of the pain you're dealing with, I was lucky in that as soon as the tingling began, my pain went away. I still get "shadowy" pain at the edge of my shoulder, and probably will for the rest of my life, which is a common thing, but adds as a constant reminder of my cancer.
Good luck for your upcoming scans and I wish you all the best for a good result!
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