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high grade spindle cell sarcoma

snapdragon
Posts: 1
Joined: Nov 2002

Hi. I'm 21 years old and was diagnosed with a rare bone cancer called spindle call sarcoma in November of 2001. I went through 5 months of chemo then they had to reconstruct my leg when the tumor was removed. The tumor was in my upper tibia and most of the bone had to come out. It was replaced with a titanium rod along with a total knee replacement. I am now curently going through follow up chemo because the tumor was only 40% destroyed when it was removed so it has a higher chance of coming back. On the positive side i had the surgery in late May of 2002 and I'm already walking again! I am looking for anyone who has been through something similar for some feed back on how they are doing and what too expect. Also some hints on controlling nausea would help because I still can't find anything that works except stuff that knocks me out.

Koosa44
Posts: 3
Joined: Feb 2004

Hi:

My brother, 49, has just been diagnosed with spindle cell sarcoma. I can't find much on it. He has done 3 days of Adriamycin, Cytoxan and vincristine. I don't think surgery is an option. Just diagnosed 2 weeks ago....any help or info will be appreciated. Thanks!

edw
Posts: 1
Joined: Apr 2003

Hi Koosa44
Spindle cell sarcomas are very rare. Usually occur in the bone or muscle. Last year March.. I was diagnosed with one in my left thigh. It grew rapidly and by May was the size of a grapefruit. I elected to have agressive radiation 5 weeks ...first to shrink it. It was removed end of May. The margins around the tumor showed maligant but they were dead from the radiation. The only medicine I was on was pain medicine which became a problem later as I became dependent on it even after the operation. Where is the tumor located? Can they radiate then remove?
What symptoms does he have? Mine was swelling, temp around 101 degrees, pain from the tumor on my nerve in my leg and really heavy night sweats that became really bad after the radiation started to shrink the tumor. Any help I can give write me at edsturr@hotmail.com

markwek's picture
markwek
Posts: 2
Joined: Jul 2010

I have gone through two weeks of chemo, 8 hours a day, five days a week, and the tumor appears to be slightly larger, though I have no pain now and almost normal mobility. Before the first round of chemo, I couldn't stand for more than a few minutes or sit for very long, so when I had appointments, I would walk. But after the chemo, it appears that the tumor has grown slightly. The doctors here (Puerto Rico) don't want to give me the authorization to go to the states and without insurance,the treatment would be incredibly expensive. I have read a lot of comments about radiation as treatment and have also heard about the pain. Is it always that painful afterwards? Is it affective? It was good to read about someone who had exactly the same type of tumor I have and who survived.

pamela55's picture
pamela55
Posts: 8
Joined: Jul 2004

I was diagnosed with retroperitoneal liposarcoma in April. Only sympton (only..ha!) was swollen legs, distended belly, I looked like I was 9 months pregnant. The local quackers put me through every test they 'felt' were necessary, all the expensive ones that is, this went on for some 5 yrs.+. Finally, this April, 2004, my daughter took me to the ER, the only reason I'm alive is that the doctor on call, was NOT on staff. He found a 'large mass' in my abdomen...too big for the locals to handle and sent me (I left in a gown to tell you how fast it went) to Mayo Clinic in Rochester, MN. They had a team of great guys in went through all the options/CT's, etc. On April 14, they told me it was a large tumor, which was remove don April 15th. Turned out it was a 20lbs tumor...how do ya miss that? I had my right kidney, right ovary and fallopian tube removed, mind you they were fine, just entangled in tumor, it's the spindle cell variety. So I lost 3 good organs, a long hospital stay, by today's standards (2 weeks). I went home, one week later, the same pain that originally took me to the ER, was back. Turns out the tumore was so large it ruptured 'stuff' and I had 'man-sized' hernias...all in a row. Back to Rochester, more surgery. I was off work for 3 months, went back (too soon I fear) and will have my first CT next month, 65% reoccurance, 50% survival rate...I have good days, and some bad. If I feel well, I naturally over do it, pay for it the next day...Chemo is out because there aren't too many organs left, as I have 1 lung, 1 kidney, etc. When it comes back, it's going to be radiation...they left two titanium clips at the site of origin...oh and hey, they had to severe nerves in groin most affected and entangled, leaving me with a boatload of numb where there should be happy thoughts and feelings. I'm so frustrated, my poor husband is 'liposarcomed-out'...I sometimes feel like it's the only thing I think/talk about. Most often, I'm positive, but then I realize I almost died (was within 2 weeks of dying in fact)...all because the locals couldn't find a 20lbs tumor...how is that possible? On the upside, which there aren't too many of...I did loose 55lbs and counting...hellish expensive diet....

Ohsweetnurse07
Posts: 2
Joined: Oct 2009

Hi pamela,

I hope all is well with you. I know your post is 5 years old. I hope you beat the same cancer that killed my mom last week. I am still in shock. I don't really have any family so I don't have much support accept from a good friend. Please keep in touch.

God bless Cara

kwatkins
Posts: 3
Joined: Oct 2009

Hi Cara, I read about your mother and i am so sorry.This Cancer is sooo scary and i hope pamela is alive and well.I have a posting on sarcomas w/ subject age 40 liposarcoma if you want to read mine. But today i was told my dr. in janesviile, wi sent my slides to clevland and they came back saying i have spindle cell sarcoma unclassified. Now im so confused cause uw madison,wi. said it was liposarcoma. now i dont know where to get a second opinion and who is good w/ sarcoma cancers?this **** is crazy. it sounds like it can crop up anywhere anytime. I am 40 and scared to death with not much support at home. God bless you and watch over your mom. take care kelly

nathanrf
Posts: 1
Joined: Dec 2009

Dr. Christopher Fletcher is a pathologist at Brigham and Women's hospital in Boston, and is one of the best in the world at identifying and diagnosing sarcomas. If there is a way for them to send the slides to him, I'm sure that he could tell you what you have, if anyone can. Stay strong.

survivor 2009
Posts: 1
Joined: Jan 2010

I was diagnosed with a high grade Spindle cell Sarcoma in 2008. Dr. Gina D'Amato at Emory Winship Cancer Center in Atlanta treated me. The clinical aspect at Emory is excellent. Give them a call. D'Amato treats only Sarcomas.

dcohen
Posts: 1
Joined: Feb 2010

I have high grade metastatic undifferentiated spindle cell sarcoma. I had a lesion next to my lower left lobe of my lung (both the lesion and lung were removed in 2008). Also I had a small section of liver removed with a metastatic lesion of spindle cell sarcoma in December of 2008. In June of 2009 a new lesion appeared next to my upper left lobe of my lung and in two places in my bones. From July to November I had 6 cycles of Adriamycin and Ifosfamide chemotherapy ending in November. My December PET and CT Scans showed no metabolic activity and the lesions had shrunk somewhat in size. My next scans are near the end of this month, February. In January I started on the Ariad Succeed Clinical Trial. Where / what was the extent of your spindle cell sarcoma and what type of treatment have you and are you undergoing at Emory?

ajay1357
Posts: 1
Joined: Feb 2010

Hi Dcohen,
I am in very similar situation. I had High grade sarcoma on my right shoulder in june 2009. By radiation my docs were able to remove those tissues. Now some 10 days back i diagnosed for High grade sarcoma in my lungs. My doctors told me that operation is not worth and they are suggesting for chemotherapy. It would be gr8 If you update me about your current scenario.

Thanks.

louiseward
Posts: 2
Joined: Mar 2010

Hi Ajay1357 and Dcohen,

I am wondering if you are able to let me know about the chemo. My Dad has just been told that no hope to operate on his lungs as it is in both. He had his arm amputated in Feb and there were 2 nodules on the lungs in the short time since the last MRI the CAT scan shows there are now 11 and so he has been told that chemo is the only option. If you could both let me know how you are going it would be so helpful, as we are in limbo at the moment and obviously devastated.

Kind regards
Louise

my3j
Posts: 3
Joined: May 2010

Hi,
I recently posted the history of my father-in-laws unexpected outcome with spindle cell sarcoma. The doctors all sounded hopeful and felt radiation was good enough after the operation. Since I am in the medical field I was very wary of the minimally agressive treatment for this type of cancer. Since you have mentioned the Ariad Succeed Clincal Trial I was wondering where that is being given and how you are doing?

my3j
Posts: 3
Joined: May 2010

Hi,
I recently posted the history of my father-in-laws unexpected outcome with spindle cell sarcoma. The doctors all sounded hopeful and felt radiation was good enough after the operation. Since I am in the medical field I was very wary of the minimally agressive treatment for this type of cancer. Since you have mentioned the Ariad Succeed Clincal Trial I was wondering where that is being given and how you are doing?

sufish01
Posts: 3
Joined: May 2010

just read your post from february. sounds exactly like my situation--adriamycin and Ifosfamide chemo. now looking at having a small section removed in my liver they are calling "dead" and possibly removing a tiny lesion in my lung. My PET/CT scans have shown no new metobolic activity and everything is shrinking. Trying to convince CyberKnife doc to do the couple of spots on my bones. I'm at Georgetown, btw.

can you tell me what is happening with you now? are you still in the Clinical Trial?

my3j
Posts: 3
Joined: May 2010

Hi,
My father-in-law was diagnosed with spindle cell sarcoma in between his lungs. They tried to remove most of it but some was too close to the aorta. The hospital in Florida gave him only radiation, meanwhile he was getting worse, By the time he finished the radiation he had lost another went pounds, finally took a scan and said it had spread. Today they took him to the hospice in the hospital. Does this doctor in Emory treat patients where the sarcoma has metastisized. Do you have he phone number of this doctor?

Mimi Rae
Posts: 1
Joined: Mar 2010

Hi Kwatkins,

I am reading your story and it is eerily similar to my husbands. He was diagnosed with what they thought was a low grade well differentiated liposarcoma now they are saying spindle cell, and a large resection of the 18 cm tumor in his thigh. We are going to memorial in NYC. How are you? What treatments, etc? Please contact me. I hope you are doing well.

SJMAC
Posts: 3
Joined: Apr 2010

Mimi Rae

I read your story. I was diagnosed with Spindle Cell Sarcoma in Oct 07. Had a tumor in my right upper thigh. I was diagnosed by Dr Frank Frassica at John Hopkins and later treated at Portsmouth Naval (I am Navy). I had pre op radiation and post op inpatient chemotherapy both at Portsmouth. The radiation caused the tumor to be 90% dead when removed in Jan of 08. My doctor said there might be a reoccurance in my lung or kidneys, and it did reoccur in 09 in my right lung. I had a lower lobectomy in my right lung and have been fine ever since. Vigilance is the key, educating yourself is the key. Good luck to your husband and yourself.

mrcolorado
Posts: 2
Joined: May 2010

I've read everyone's story here, and it looks like I'm in the same boat. I'm lucky in that my cancer is low grade. After being hoarse for 2 years, I went to the ENT and was diagnosed with an "unusual" polyp. When he removed it, they tested it and diagnosed it as a rare myxoid spindle cell sarcoma. It was tangled in my vocal chords.

The first surgery ended up being more of a biopsy since they didn't know what they were dealing with. I have another surgery scheduled this month that will remove a vocal chord and severely alter my voice. Then 6-7 weeks of radiation after that.

I'm going to Duke Medical Center and have the utmost respect and confidence in my doctors there. Dr. Larrier, Dr. Scher, Dr. Pepek, and the rest of the gang.

If you've been diagnosed with sarcoma, I would suggest you seek a sarcoma expert. Your local doctors do not understand how to deal with this type of cancer.

Good luck to everyone here. Hopefully I'll be around long enough to post again after my surgery. :)

Will

lovelifeforever
Posts: 11
Joined: Jun 2010

Best wishes and good luck to everyone here.

My mom was diagnosed with Spindle cell Sarcoma in the upper part of her left lung on Dec 2009 and had a surgery to remove the whloe left part on feb 2010. 3 months after her surgery she had her first CT scan and the result shows that there are new lesions appeared on her right lung and pancreas. The doc suggested for the chemo treament but he is not sure if it works. I am so worry about this agreesive treament and the side effect for my mom's body. She is 50 years old and I dont know whether her body can affort that.

I am here asking for any useful information and suggestions. I will be very greatful if anyone could give me any suggestions or helps.

Thank you again.

jpcolorado626
Posts: 1
Joined: Oct 2010

My 17 yr old son was diagnosed with high grade, stage 4 spindle cell sarcoma (synovial maybe?) 5 days ago at Denver Children's Hospital. He has a 8mm x 5 mm x 5mm tumor in right chest that has spread to both lungs internally and lung walls also. They have still not positively identified it as synovial and need one more day (slow). I requested 2nd opinion and they are sending to Dr Christopher Fletcher in Boston (noted above). My sister (MD) also wanted to send to Mayo, but they said no need. Advice? I am starting to doubt Denver as the pathologist said in 25 yrs never seen this type and other unknowns that make me uncomfortable. Are they any good at Sarcoma (I've been told HAVE TO HAVE Sarcoma expert treating). I will move with my son anywhere to the best Sarcoma treatment expert if needed to improve his chances. Who and where are they PLEASE! Is Denver good enough? Do they know Sarcoma and Spindle Cell? He's my only son and he is so wonderful! I can't lose him and will do anything to improve his chances (Denver says 30-40%, true? Better or worse?) Obviously, we are so scared. Please advise to all. Thank you!

Nitoalsh
Posts: 2
Joined: Sep 2010

Dr. Fletcher also diagnosed my sarcoma. Good move. Mayo in Minn. does have a good sarcoma center as does MD Anderson in Houston.

I am being treated at the University of Nebraska Medical Center in Omaha.

Don't settle for anything less than expert.

mrcolorado
Posts: 2
Joined: May 2010

I can tell you the folks at Duke are experts with Sarcoma. They have a Sarcoma center.

But any well respected cancer center that specializes in Sarcoma will do - Mayo Clinic, Duke, UNC, Wake Forest, etc.

My surgery went well and I have a lot more of my voice back than they thought I'd have. Radiation was fairly easy (I ate at Outback Steakhouse my last week) hahaha.

Good look to you!

Will

ez4ted
Posts: 2
Joined: Jan 2011

I had another post here. I don't know much about other cancer treatment centers but, I recommend MD Anderson in Houston. My surgeon was Dr. Patrick Lin and I can not say enough about him and his staff. The Sarcoma Dept. and MD Anderson, as a whole, are just amazing. I never met an MD Anderson employee that was anything but pleasant and a joy to be around. It was a very uplifting experience.

obie1203
Posts: 8
Joined: Mar 2011

It is my first time on this website and my 17 year old son was also just diagnosed with primary synovial sarcoma of his right lung. We are all devastated by this news but they feel they have gotten all of the lesion out and it was less than 1cm. We have taken him to Memorial Sloan Kettering in NYC to see Doctor Wexlor, and I have also taken him to Doctor Maki at Mt. Sinai in NYC who came from Sloan. These doctors have also been in touch with St. Judes regading my son (Doctor Sheri Spunt).

As a mother, I feel the pain and desperation in your post (I am desperate myself and find it hard to get through each day not knowing what the future holds for my son). I truly hope your son is OK and wish your family peace and strength to get through this.

sarcomakid
Posts: 2
Joined: Jan 2014

Hi my name is David. my 10 yr old son has a large undifferentiated spindle cell sarcoma it is between the ribs and lung it has collapsed nearly all of his lung. It is high grade 3/3 I'm in Australia at a children's hospital called westmead in sydney they have a large cancer dept. My boy had 3 ct scans 12th Dec 2nd Jan and 15th Jan and has had 2 pet scans. He has had 2 rounds of chemo which has stopped the growth which is some good news but the docs now don't think it will shrink. What is really important that I wanted to tell you is that from the 12th to the 2nd it grew alot approx 15% so I think it's important you act fast. Initially they told us that surgery would be terrible and we need to shrink it with chemo for 6 rounds but (today) now they are planning on fast tracking the surgery I think they saw something on the PET scan they did yesterday I'm still awaiting the report. Good luck x if you find any thing that you think I should look at please help. Especially any way to shrink it...

ez4ted
Posts: 2
Joined: Jan 2011

I know Houston is a long way from Wisconsin but, they are unbelievable. I had my tumor removed at a local hospital (Orange,TX). The doctor thought it was a fatty tumor and said the odds of it being malignant were about 1 in 2 billion. In the recovery room, he said it looked odd and was sending it off for biopsy. Six days later he called to tell me it was malignant and he was referring me to MD Anderson. It was classified as a spindle cell sarcoma. My oncologist cleared the margins around where the tumor was on 7/13/2010. I did not receive chemotherapy or radiation treatments. My leg is returning to normal, still a little numbness. I know how very fortunate I am but, I think MD Anderson is THE place to go. I pray you get the help you need and enjoy a long and healthy life!

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