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malignant fibrous histiocytoma

jjb2497
Posts: 8
Joined: Sep 2010

malignant fibrous histiocytoma
I have malignant fibrous histiocytoma MFH. Does anyone else have that type of Sarcoma. I was diagnosed about 7 months ago. Had 2 surgeries and 30 radiation treatments. Now I go every 3 months for an MRI and CAT scan at Seattle Cancer Care Alliance. Occurence was the upper right thigh. I have been reading alot of the stories on the Sarcoma Cancer area, but don't see other people with malignant fibrous histiocytoma. Would be interested to share stories with someone with same disease.

finney
Posts: 4
Joined: May 2010

Hi
I read your post tonight. I also was dx with MFH in the May 10 timeframe. The tumor was large (11cm) and was located in my upper right thigh area. I had two surgeries -- first one was to remove the mass and then send to pathology, second surgery was to do another recision to ensure there was no residual disease left behind. I also had 25 sessions of radiation before the 2nd surgery. I am recovering -- going to physical therapy 2x per week. Leg is sore at times, mostly swelling around the knee area. My first follow-on scan is in Dec. Would like to chat and compare notes....

jjb2497
Posts: 8
Joined: Sep 2010

I can't remember how many cm my tumor was. They said it was the size of a lemon. It was weird I went for my physical and didn't see it. Then 2 weeks later I noticed the lump on thigh. Kind of thought it was nothing so really glad I went to the doctor. she sent me for an MRI and CAT scan. Within one week I was having surgery. I had to have the 2nd surgery 1 week later because the Pathology said my margins weren't big enough. It has been stressful. I read your page. I am a Christian too. I think that is what helps me get through this. My husband is also supportive. I have been going to a Cancer Survivor Class which I really like. It is a 8 week class.

qksand
Posts: 6
Joined: Dec 2010

I had subcutaneous MFG (medium to high grade) sarcoma at the right hip area. It was thought to be a benign lump and removed. Then pathologist informed me the bad news - Malignant Fibrous Histocytoma (MFH) sarcoma - April,2007.
Had resection in May, 2007 in MD Anderson. Nov. Follow up exams had been doing well. But, Nov. 2010 CT showed new nodule growth. Will have CT again in Feb. 2011 to confirm metastasis or not. I guess it means they are waiting for it to grow large enough for biopsy.
While they are waiting, I am taking actions for alternative treatments - acupuncture & Traditional Chinese Medicine (TCM) to boost my immune system, taking 2 grams of omega-3 per day, increase my intake of fruits and vegetable of all kinds of color. Hope they do some good.
MFH sarcoma is a nasty one - not meant to scare you but it is a fact. We all should learn from each other and hopefully something positive can come out.

Best wishes,
qksand

jjb2497
Posts: 8
Joined: Sep 2010

It is reassuring news that you went from May 2007 until now before seeing anything. so you have been good for 3 years. I wish I had a different kind of Cancer where they had more studies and research. I had a CAT scan and MRI last week. I have my Oncologist appt tomorrow. I was diagnosed in Feb 25, 2010 so I am almost a year later. But I think these every 3 months scans is very scary. I am not sure what "new nodule growth" means. Does it mean that they are seeing something in that same original spot or in a new spot? when I first had the tumor I thought it might come back in a different spot but alot of people on this site seem to get it back in the same exact spot. It is wierd. You would think if it was removed and you had 30 radiation treatments that it would come back in a different spot instead of the original place. I have been doing all the nutrition things too. Having Cancer makes you look at everything you are putting in your body. I am eating really healty and taking supplements. I should look into some of the alternative treatments. We should keep in touch.

qksand
Posts: 6
Joined: Dec 2010

jjb2497, my sarcoma was at the right hip. They took out a big chunk of muscle with 3cm margin followed with 60Gy radiation in 30 sessions. Apparently the radiation did the job and I did not have recurrence at the primary site. Actually, for sarcoma, the metastasis happens typically in the lung. So, I was not surprised, but sad, to see the Nov, 2010 CT scan report of growth of new nodules in my lung. The fact that they say "growth" means that they had seen something at certain places the last CT scan (May, 2010) and this time, they grew bigger. My next scan is Feb. 23. They want to wait to see how fast the nodules growth and big enough to do biopsy to confirm the nodules would be indeed the same cancer cell as my primary. I don't like the wait but I can understand from their stand point. So, while they are waiting, I am not. I had done some Internet searching. If you are interested, please watch William Li's talk: http://www.ted.com/talks/william_li.html
It is very interesting and should be useful for us.

Hope you have good report from your scan (today?). Keep in touch,.

qksand

jmiller121
Posts: 3
Joined: Feb 2011

Hi finney, I had a 16 cm removed from my left hip. I had 35 radition treatments after surgery. I just had a 4 month scan that shows metastasis to my right lung. I am having that removed this month. They had to remove the peroneal nerve so I don't have much pain, just numb. Are you male or female? I am female. How was your first scan results? Your tumor was big like mine.

jmiller121
Posts: 3
Joined: Feb 2011

I had a 16 cm tumor removed in october. I have metastasis to my right lung after 4 months. I'm having that removed this month. Are you male or female? I am female. I've only found males so far. Mine was in my left hip. I had 35 radiation treatments. What a sucky cancer!

AshleyT's picture
AshleyT
Posts: 7
Joined: Aug 2009

Hello to all, I am a 45 year old nurse. I was diagnosed in Aug. 2009 with a 14cm, high grade MFH on my right posterior shoulder. I underwent removal of what was thought to be a cyst in Aug. 09. I subsequently was referred to MD Anderson and had 25 rad. treatments. The sarcoma team decided against chemo as it is not very responsive. On Dec. 09 had a resection of the tumor bed which removed most of my posterior shoulder muscles. Rehab was TOUGH and I ran out of insurance time before I was fully rehabbed. I kept at it on my own and can now do push ups and bench presses. I couldn't even tie my shoes the first months.I get scanned at MDA every three months and so far (13)months I am still cancer free. I don't think about it much anymore except when it is time to go to MDA. Then I get nervous. I know the stats. My husband and I try to make a nice weekend out of the trip to Houston, eat out and stay at a decent hotel but it's still a pill to have to do.

serenapal
Posts: 31
Joined: May 2009

Good for u ashley for 13 mnths ca free. I was wondering how ur sarcoma felt or look. I have a lump on my shoulder near the point towards the spine its been there at least a yr hasnt grown too much and feels like itskind of softbut solid not mushy dr tells me probly lipma had x rays nothing showed. So I was just wondering also if u had xrays or wht to. kim

tarheelmom
Posts: 4
Joined: Aug 2011

My 40 year old husband had a 9cm MFH removed from his liver successfully in October. Clear margins, surgery went great. Then he had 30 radiation treatments.

We are 4 months out and they found 2 areas of concern on his CT scan...one 1cm nodule in his lung and 1 6cm mass near his bladder. Sigh...we were so hopeful that he might be through with this cancer. They aren't saying for sure yet that it is the cancer but we feel confident that it is.

We had planned on chemo anyways and are starting it in a week, after his biopsy next week. He is having the kind where he stays in the hospital for a week. After 2 months they will scan again and the hope is that the tumors will be gone and then he might need some more surgery.

This has been awful, I feel so bad for anyone fighting this cancer. We feel like we are going to beat it!!! My husband is a fighter and is a strong person, plus we have 3 small children. He has been completely healthy up until this and had just gotten his PhD when this happened.

Big hugs to all of you fighting this!! It is considered a curable cancer!!

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