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Anyone else with Dermatofibrosarcoma Protuberans on the neck
Hi Everyone I am newly diagnosed and just had WLE. First of all, it is sad that the doctors misdiagnose this as just cysts. I hear all the frustrations we all have had with this. Secondly, I too have been treated like it is "no big deal". It is a big deal and these are our bodies and our lives. My story is very similar to…
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soft tissue sarcoma looking for someone to talk to
my cancer has spread to my lungs and i have been battling this for over two years . I have lost my left arm , had multiple surgery and alot of different types of chemo im looking for someone to talk to who has went through or is going through something similar thank for reading this Chris
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Spindle cell sarcoma
I am posting because I am truly clueless about my diagnosis of Spindle Cell Sarcoma in my leg. Trying hear from anyone that has any experience or knowlege as I am not seeing a lot. Maybe I am not looking in the right places. My prospects feel very grim an not sure whether to fight or enjoy my current days. May be…
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Pleomorphic Liposarcoma-anyone else??
I am a 36 yr old who was just diagnosed w/ a high grade pleomorphic liposarcoma. It was removed two weeks ago and I had my first oncology appt. I was referred to a specialist in seattle due to how rare of cancer I have. Is there anyone else out there w/ this same type of sarcoma? I have not begun treatment but will start…
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Undiff pleomorphic sarcoma (armpit)
My husband is 37 and was diagnosed with a high grade undifferentiated pleomorphic sarcoma last month. They say stage 3. He had surgery to remove it and it was 6cm. Docs say we can do chemo but there is no data to support if it works or not. But radiation for sure. We are trying to go for a second opinion to MD Anderson.…
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Inheritance of Synovial Sarcoma
I want to know if the Synovial Sarcoma or Endometrial Cancer is inherited from one generation to next? I had my Grandmother suffering from Cervical or Endometrial Cancer and my Father suffered Synovial Sarcoma. What is chance for me getting either or both of these diseases?
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MPNST - Malignant Peripheral Nerve Sheath Tumor
My husband was diagnosed with Maligant Peripheral Nerve Sheath Tumor approx. 3 years ago. The tumor arose from his sciatic nerve. He had surgery in which he was originally told it was a begign nerve sheath tumor and a month after we found out he has high grade MPNST. He has had clean check ups every 3 months for the last…
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Undifferentiated Pleomorphic sarcoma
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Myxoid liposarcoma in right thigh
Hello, My husband was diagnosed with myxoid liposarcoma on September 10, 2004. He travels alot, and found a lump on his thigh (size of a small lemon) when he was in indonesia on July 4th. Upon returning, he showed it to me, and I made an appointment the following day for him to see the doctor. The doctor refered him to a…
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high grade, stage 4 sarcoma
My sister (59 yrs. old) had emergency surgery about 4mos ago for a tumor on her intestines. She had a cholostomy and they thought they got it all. Original dx as GIST. Six weeks ago she had another emergency surgery. They found and took out another tumor around the original site and found another mass on the pelvic floor…
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Uterine Sarcoma
Back in August of 2018, I was admitted to the hospital for Colitus. During the examination the doctor found a mass in my uterus and recommended I have it looked at by my gynecologist. They did a sonogram and the mass was quite large almost 13 cm. My gynecologist had the mass biopsied and it came back benign so we talked…
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Retroperitoneal Liposarcoma survivor stories needed to encourage me
Hi. I'm 5 months post surgery after having had a 5lb Liposarcoma removed from my abdomen. I was fortunate that I did not lose any organs during surgery and was deemed to have had a 'surgeons dream' of an operation due to the unusual lack of complexity. No treatment afterwards, follow up surveillance once a year. I should…
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Myxofibrosarcoma
Hi, Would like to have conversation with somebody that has been diagnosed with myxofibrosarcoma.
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Ewing's sarcoma
Hello, I was curious if anyone is aware of the clinical trial for TK216 for Ewing's Sarcoma. If there is anyone who is involved or has any information. I have a stepson wwho has been battling for a year and half.I would appreciate any information.
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Lung Ca met suspected but tests say Sarcoma instead
Hello All, I am a newbie here, and hope I'm posting this in the correct location. My hubby was diagnosed with lung cancer in 2016 when a very small 2.2 tumor was found by accident in the lower lobe of his right lung. We attempted to have it sugically removed but the surgeon once he got in there said that there was too much…
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Uterine Leiomyosarcoma ???? Do I have it or not.
Hi, I don't know if I have ULMS or not, but I am so upset I can barely breathe. I have spent months researching only to find old and dismal research. I have read every radiology and medical journal I can get my hands on. There is nothing left on google I haven't seen and I've spent hours in Sloan Kettering's library…
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Liposarcoma on the left thigh
I was diagnosed with liposarcoma on the left thigh when I was 30 years old(1992). My tumor was due to my negligence at the time, left to grow to massive proportions(17cmX12cmX5cm). It was surgically removed at the time by wide local excision and followed by 3 rounds of local chemo and 1 round of general chemo. I remained…
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dedifferentiated liposarcoma in the groin area
Hello all I was diagnosed with this cancer after having a hernia operation. I felt a lump in my groin area at the beginning of the year and call my sister who is a nurse and jokingly said I think I have a tumor. She said is was more likely a hernia. So, I made the appt to see my Dr, and he confirmed it was a hernia, but…
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Spindle cell or Epithelioid sarcoma?
I found out two months ago that I had a tumour in the third toe of my left foot, and that there is some damage to the other toes (except the big toe). I have had surgery on the foot where the middle toe and the third metatarsal bone has been removed and I am currently recovering from the operation. Once the wound is healed…
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Complications following limb salvage surgery
I wanted to post and see if others have the same problems that I experience and also to see if anyone has any advice to provide. I had limb salvage surgery almost a year ago now. The surgeon removed a large part of one of my quad muscles in the right thigh. The surgery was done after radiation treatments, and also after a…
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Core Biopsy
So my problem is, I am a breast cancer survivor,for 3 years. as you guys know once youve had cancer life is just never the same. I had a CT scan that showed a retroperitinium mass. MRI confirmed. suspicious of sarcoma. I have this horribe insurance BAY CARE CIGNA through my employer. My oncologist is againt a biopsy as he…
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Dermatofibrosarcoma protuberance (DFSP) Recurrence
6 years after having DFSP removed surgically with wide excission, my dermotologist biopsied a spot on my scar and found it had returned. I went to the same surgeon and asked about Mohs. He said since the tumor was on my body (upper chest/shoulder) it wasn't necessary. He said Mohs is for areas where there isn't as much…
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Delaying my 6th round of chemo by 2 weeks...advice or unsight please!
I informed my doctor this morning that i would be out of town visiting my family some of whom i havent seen in over 4 years with them being stationed in japan. But the dates i will be out of town would force me to delay one round of my treatment by 2 weeks. We butted heads for a while and then she told me that she…
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Need Help Reading PET Scan
I received my mothers PET Scan results and I need it explained in terms that a non-doctor can understand...My mother had a 7lb sarcoma tumor taken out of her intensinal area on April 1, 2018 and it burst in her system...They did not take any procaution after the surgery just in case it came back. She was not feeling well a…
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Not a limpoma
my husband was diagnosed with a limpoma a couple weeks ago. It is right on his tricep. to be safe and because it is on the larger side (9.5cm x 1.5 x 6) his doctor suggested an ultrasound. the ultrasound told us it is not a limpoma, the tumor has some doppler red indicating blood supply And it is in his muscle. we also…
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Ewing Sarcoma Survivor. Need Advice.
Hello everyone. I have been an Ewing Sarcoma survivor for about 13 years now. It was definitely one of the better highlights of my life, beating cancer and all. It's something you can never really get over, and all these little scares sometimes pop up to make you think it will come back again. I had my Ewing Sarcoma on my…
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Leiomyosarcoma
Happy Fourth of July! I have recently been diagnosed with stage four leiomyosarcoma. I have been to two doctors. Both want to start me on chemo. It has been recommended that I seek out therapy at MD Anderson because they have sarcoma specialists. Trying to get into MD Anderson has been similar to trying to jump through…
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Request information on Mohs for DFSP
Hi All, My 12 year old daughter has been diagnosed with DFSP. She has been advised surgery and from what we have come to know Mohs micrographic surgery is the best option to reduce the risk of recurrence. We stay in Singapore. Can someone please give me some information on whether Mohs for DFSP isperformed anywhere in…
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Lartruvo
Does anyone have any positive and hopeful lartruvo experiences. I have rhabdomyosarcoma, spindle cell variant (either that or PUS/UPS...the doctors really can't wrap their head around it). I did three cycles of VAC. When I started I was a stage IIIc, between my dx in August and now, I've developed lung mets...too many too…
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Chemo for rhabdomyosarcoma
I am 26 yrs old and I was diagnosed with Spindle cell/sclerosing rhabdomyosarcoma. The tumor was in my lower left leg and I was amputated after two rounds of chemo. The chemo wasn't effective and the tumor size increased during chemo. My oncologist suggested 4 rounds of post-operative chemo but the effectiveness is…