Cancer Survivors Network

Fred is what we named the abdominal "cyst" I was diagnosed with 5/8/09.

Oh boy what a journey. January started out with a slight back pain. March was prescribed anti-inflamitory's even after describing a different pain other than back pain.

4/13/09 I had black stool and was admitted to the hospital. After an endoscopy, and no problem seen, other than poor kidney function was released from the hospital . Still with the back pain. Two weeks later went in for a recheck, more "back pain" then x-rays. 5/8 I wet back with severe back pain and an indescribable burning in my groin "WOW".

That is when Fred was discovered. diagnosed as a cyst. CT scan, and sonogram. Had to wait 9 days and was referred to Johns Hopkins. THANK GOD. That is when the first mention of the "C" word came about. Told my Dr. that I had a negative biopsy. He informed me that at Hopkins they did no waste the time or money on the biopsy. It needed to be removed. And was matter of fact that cancer was a possibility. But to put it in his hands.

At that time I had a CT scan with dye, still no real success with prognosis. Surgery scheduled. Then the day before had to cancel because of elevated stress hormones. Imagine that. Had to do a 24 hour urine test, then wait another week for surgery.

Finally 6/9/09 Fred was removed. Thank God my wife of 31 years is a saint.

Yes it was a Sarcoma. 13 3/4" in length, and the diameter of a soccer ball. Good margins though. No Radiation, no Chemo.

I go for my first cat-scan Monday. Wish me luck. I am on edge.

Thanks for taking the time to hear my story.

I had an unbelievable surgery and doing fantastic for my fibromyxoid sarcoma....under my right arm. Would love to chat off forum as I forget to check. cyndihase@yahoo.com

I am wondering how your are doing and what your treatment has been since your last post. Hope all is going well and you found a great doctor team!!

I was also diagnosed with Fibromyxoid Sarcoma in my thigh. I was 23 years old when I was diagnosed in 2008. In 2008 there was hardly any information compared to what I can find now on the internet. I find this very interesting.

I was diagnosed with a large tumor on me shoulder and down my bicep. I am a 57 year old male and in the physical prime of my life{ or was any way} They did the MAID form of chemo on me for a 4 day stay in the hospital, then daily radiation for 14 days. Then the chemo, then radiation for 3 times in total. They then took the tumor and I was blessed with great margins. This all happened last year with my surgery in November, 2010. after the surgery, I then did another chemo and radiation x 3 again to make sure it was not floating around in there. I have just received my 2nd three month check and thy found a suspicious area they wanted to biopsy. I am having a very hard time keeping it in today and not getting depressed. Functioning in a normal capacity is difficult. Can't seem to get out of my own head !!

Hi constantiak,
I Read your post & just recently joined CSN, I just read your story and hopefully am able to provide w/ some insight w/ my experience. I initially had a CT Chest Scan due to some chest / neck arm pain I was having, related to tendonitis in my right arm, causing me some discomfort. The Doc was concerned that I had pain in the Pectoral muscle related to this & had a scan ordered, JUST to rule out a possible embolism or blockage (based on age & family history of heart disease. We did the scan with Iodine & had follow on stress & blood tests all showing I was perfectly healthy. The CT Scan did show that I had Tumor Behind the right lung which measured 3Cm x 4Cm x 7Cm. It was causing me some pain in that area, but only thought it was a muscle knot related to work outs & this tendonitis thing I was seeking physical therapy for. The Dr. initially thought this was benign, due to it's distinct borders & shape which would suggest it's benign. I had a follow on PET/CT Scan, which also showed that there was very little to no activity within the Tumor itself. Follow on discussions with a Cardio-Thorasic Surgeon (Excellent Surgeon by the way) suggested a conservative approach, let's remove it & see. A second opinion from a Major Boston Hospital said we can remove it but they were also ok w/ a wait & see. My dad died in 2009 from an aggressive form of GI Carcinoma Cancer, so I was not thrilled w/ the idea of "leaving it in" and a wait & see approach! Had it removed in Dec. 2010 expecting the results to show it was benign schwannoma type tumor & the pathologist at the hospital I had the operation called it that but my Surgeon saw things on the slide sections that didnt make sense so it was sent into boston for follow on analysis. Wouldnt you know, it was a Fibromyoxid Sarcoma! This is a very rare cancer but even rarer where it happened to be located in my intercostal lining. Because the original thought was that this was benign, it was removed with absolutely no margins. The Surgeon also indicated that it was perfectly in tact and simply popped out on its own & was pulled thru the chest wall in a sac. In Literature related to this & many other cancers, Doctors prefer a 2cm Circumfrential margin of removal if possible. In my case there were no margins, it would have to involve lung, chest wall & rib removal. The initial Radiologist Recommendation was to perform High dose targeted radiation (similar to this cyber knife thing they talk about on TV) to deal with the margin Issue but there are risks associated with this as well. I was then referred to a New State of the art Sarcoma Treatment Center here in Boston at the Dana Farber Cancer Insititute. All (3) Doctors there who reviewed my case said hold off & let's wait & see. Because this is such a low grade / slow growing cancer & follow on surgery would involve rib & chest removal, it would be better to see where the cancer will re-occur (if it ever does), then determine the coure of treatment to defeat the cancer in those localized re-occurences with either Surgery, targeted radition or new treatments that are under research & trials. I feel very lucky to now be working with DFCI on this. They are performing both research on Sarcoma Cancers & providing the latest approved treatments for this cancer. Since my operation, I have had (3) CT scans with no re-occurence & the surgical areas are healing up nicely. Right now I am being scanned every 90 daye (very aggressive) to look for re-occurence. After September this year it may be cut back to every 4 months & eventually 6 months, then 1 year. For me, this was the best approach considering the alternatives. I am very nervous this thing may have metastitised & headed for the lungs or liver but with the monitoring, this will be detected if it did, I have my fingers & toes crossed! Pls. contact me if you want more information about DFCI, you may want to consider seeking second opinions on this cancer before going under the knife again or considering the high dose raditaion. It's bad enough were being exposed to all the radiation from body level CT Scans! I wish MRIs could be used instead!