Much of the information a physician uses to make a diagnosis comes from clinical laboratory tests and tissue biopsies. These tests are usually overseen or interpreted by a pathologist & sarcoma is usully missed. My story: 11/2009 UPDATE: I HAVE SARCOMA IN BOTH LUNGS, PELVIC, SACRUM AND WHOLE SPINAL BONES. OXYGEN DROPS WHEN I AM UP DOING THINGS. I HAVE HOME OXYGEN FOR WHEN I AM UP OR SHOWERING, AND AS NEEDED. I HAD RADIATION IN SEPT OF THE UPPER SPINE. THE CANCER HAS GOTTEN WORSE, AS WHEN I BREATHE THE TUMORS HIT MY PLEURAL LINING IN THE LUNGS AND SOME RIBS. I AM ON A GENTLER CHEMO TO GET ME THROUGH THE HOLIDAYS. AFTER THAT, I MAY TRY THE DOXIL AGAIN TO SEE IF IT WILL KEEP ME STABLE. THE DTIC DID NOT WORK FOR ME. I ALSO MIGHT TRY THE IFOSAMIDE, ALTHOUGH THAT REALLY BEATS YOU UP. I FEEL PRETTY GOOD, ACHEY AT TIMES, TIRED AND SHORTWINDED AT TIMES. IT IS HARD TO ACCEPT THAT THIS SARCOMA IS GOING TO TAKE ME OVER AND WIN EVENTUALLY. I WAS TOLD I WILL NOT BE HERE NEXT CHRISTMAS. WHEN I THINK ABOUT IT I GET SO DEPRESSED AND AFRAID INSIDE. I WORRY SO MUCH ABOUT HOW MY KIDS WILL TAKE IT AND HOW THEY WILL BE. MY SON IS SOOOOO CLOSE TO ME. I DON'T KNOW HOW HE WILL HANDLE IT. I WORRY THAT THEY WILL BE OKAY. I JUST WANT THEM TO KNOW HOW MUCH I LOVE THEM.UPDATE 9/2009: I started radiation for the 3rd time. This time for the upper spine, to help relieve pain and stabalize the tumors. The onc. doesn't want them to grow and impinge the spinal cord. I am still in chemo at the same time, although I am on DTIC because I can continue radiation with that chemo. I have been doing good keeping the tumors all stable. I guess I am still here because mentally I am a good fighter and love my kids too much to go anywhere! Oct. 9th new scans and will see where I stand. UPDATE 8/2009: I have been on Doxil chemo since March 6th. The lung mets have been growing slightly. The pelvic, sacrum and groin seem to be stabilized. I think the radiation to the area helped stabilize them and relieve some of the pain in that area. There are mets in the upper spine also. As far as 8/18/2009, it will be a big day of several scans and the oncologist is going to decide on a different treatment or clinical trial. I have been a nervous wreck because of the poor outcomes with Sarcoma. Although, I am hoping the ocologist finds something to keep me stabilized much longer than the statistics. Perhaps even shrink them!!! I hate to see the worry in my kids and parents. UPDATE 2/2009: I RECENTLY HAD SCANS FOR MY F/U AFTER SURGERY, WHICH WAS LAST MAY 28, 2008. THE SCANS SHOWED NUMEROUS METS IN BOTH LUNGS. I HAD A PET SCAN THAT SHOWED THE SARCOMA CANCER IS ALSO IN MY SACRUM AND PELVIC BONES. THIS MEANS IT IS IN MY BLOOD, AS THAT IS HOW IT TRAVELED. I WENT BACK TO DF IN BOSTON TO SEE MY OPTIONS. AS IT STANDS NOW, I HAVE TO DO CHEMO WITH THE "HOPE" THAT THEY WILL REMAIN STABLE. ALTHOUGH, POSSIBLY, I CAN BE LUCKY AND THEY WILL SHRINK. THERE IS A TEATMENT TO LASER THEM OFF THE LUNGS IN GERMANY. ALTHOUGH, IT CAN NOT BE ELSEWHERE TO GET THIS TREATMENT. IT IS NOT OFFERED IN THE US. MY FAMILY AND FRIENDS ARE DOING A FUNDRAISER TO TRY TO HELP WITH TREATMENTS AND SEND ME TO GERMANY, IF DR. ROLLE CAN HELP ME. I AM HOPING HE WILL RESPOND THAT HE CAN HELP ME. YOU CAN CHECK HIM OUT BY A GOOGLE SEARCH, "DR. ROLLE IN GERMANY." Hi, 5 years ago (2001) I had a lump in my left scapula that was removed at a local hospital. I was told it was benign. Then 6 months later I had 2 lumps in the same area. I was told by the dr. that the pathologist said they were benign and to leave them. I then decided to go back and have them out since the first time was easy. When the dr. went in she found a big mess all under my muscles, etc. After taking 9 out (2002) she closed me up and said I would have to come back. Then my pathology was sent to Sharon Weiss in GA. After it was reviewed there, I was notified that I had Soft Tissue Sacrcoma. I then went to a Sarcoma Surgeon at a different hospital and had a wide margin surgery. I also had to have most of two muscles removed. I was diagnosed with a Low grade, myofibroblastic, well differentiated STS. After, that I went often for chest x-rays or CT scans for follow-ups. I would of been 5 years cancer free (2007), when a mass showed up near my rib. Then I happened to show the dr. that my neck had been swollen near my collar bone for some time. The dr. ordered an MRI and held off on my surgery. Another nodule showed up behind my shoulder. I also had an MRI of the pelvic area which showed a nodule. I then went for a PET scan and there was activity in the mass near the rib and the nodule behind the shoulder. So I went back in for surgery on December 20, 2007. I came home Christmas Eve. I had to go to the dr. weekly for about 8 weeks to have fluid drained. I had my stitches removed 3 weeks after surgery. Anyhow, to get to the point, I was told that both tumors are "high grade" STS. Although, a differentiation score can not be determined or a sub-name for my type. My surgeon is familiar with STS, however I went to Dana Faber in Boston, MA for another opinion and to see if their pathologist and "sarcoma team" could determine what sub-type I had. I wanted to confirm that I was receiving the proper treatment and get their suggestions for future follow-up. After going to Dana Farber, their Sarcoma Team told me they see these sarcoma's all the time and in the scapula area. The doctor's at DF sent me for several more tests as they wanted to see what had been removed and what was left. The MRI of my back showed a suspicious tumor and some residual cells left near the nodule behind the top of my shoulder area. The operative report from December read that a wide resection was done when the tumor was removed near the lower rib, but the nodule near the upper rib was removed only, with very close margins. The MRI at DF did confirmed that was true. The doctor's at Dana Farber said that there is a very good chance that a cell or two could grow. They suggested another surgery, doing a wide resection up top removing half of my shoulder blade, most all of the muscles, tissues and even the skin, requiring a skin graft. The sarcoma team said not to wait until it returns again for the wide resection because if it goes to my lungs that would mean it entered my blood stream which then the treatment would be much worse. The sarcoma team at Dana Farber also wanted me to do the radiation before the surgery so they would not have to radiate such a large area after their surgery. After deep thought and research I have decided to go with the Dana Farber sarcoma team doctor's plan. I had to have a drain put in due to I kept filling up with fluid. They said that the fluid would just move cells around and the radiation would not be accurate. The drain fell out a week later and I was back up at Dana Farber to have them check it. I finished 6 weeks of daily high doses of radiation and the ending was horrible. There were so many times I did not even want to go. After, I was done, it continued to take strong effects on me. My back had blistered, peeled, under the arm had peeled raw, it was extremely itchy and drove me nuts. The raw spots were painful and they no sooner start to heal, when it starts splitting in another area. I hated it, as I was so uncomfortable. I just wanted it to get better. UPDATE: My surgery was May 29, 2008 and I was on the operating table for 8 1/2 hrs. They removed everything like they said, which basically was everything to the chest wall on my left side. My Sarcoma surgeon is excellent at DF. Due to previous surgeries, the plastic surgeon didn't have a lot to work with. He moved part of the trapezius muscle down and the part of the litisimus muscle that was left on the right side he moved over. The plastic surgeon took 4 large pieces of skin from my thigh and buttocks area. I was on a breathing machine for 20 hrs., in ICU for 2 days, and in the hospital for 9 days. After I was released from the hospital with 4 drains in me I was sent to a rehab. center in Boston. At first I had trouble standing and walking due to the donor area for the skin graft. The donor area was very sore. Although, within 2 weeks the donor area felt better. At the center they took care of changing the dressings, med./pain control, helping me get up and moving. I was told I could not have any weight bearing or range of motion with "either" arm. This was difficult. I came home on June 28th. I can use the right arm with limited range of motion, extension or weight bearing. I can use my left arm now from the elbow down pretty good. Although, from the elbow up to the shoulder still is not moving. My left arm will not go out or up yet. The surgeon and plastic surgeon both said this is one of the largest surgeries they have performed. I am told the skin graft and surgery area is healing great. Although, I will not look at it. I am to afraid to as I feel I will be freaked out. My back is very uncomfortable to lie down on. I am done with the visiting nurse. Although, I will be going to PT soon. I am not in a lot of pain anymore and am moving around much better. I have had two other specialist's run tests for safety measures and thank God they were fine. I think I have been through enough and hope to be cancer free now forever. My kids have worried about me and have had to be shuffled all around to different sitters while I was in the hospital. My mother has been a huge help. She stayed with me in Boston for 10 days. Then she went home and helped take care of my kids. When I came home, my mom was a huge help with me, my home and kids. I don't know what I would of done without her! After going through all that I have been through, it is weird because you tend to have all kinds of mixed emotions in your head, with hopes that it is finally over!!! I HAVE BEEN MOVING AROUND BETTER SINCE NOV., ALTHOUGH I STILL HAVE LIMITATIONS WITH THE LEFT ARM. I AM USE TO NOT BEING ABLE TO LIFT IT UP OR OUT NOW. I AM REALLY LOOKING FORWARD TO A MUCH BETTER YEAR FOR 2009 AND MOST OF ALL REMAINING CANCER FREE!!! SARCOMA SUCKS AND IS SO SCARY!!!
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This is a great group. Penni is one of the sweetest people I have ever met!!!