Fibrosarcoma
Comments
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6 monthly CT scan check up
Hi Sandysarcoma and all
I was diagnosed with myxofibrosarcoma of the left forearm in Sept 2009. Two operations and 2 months of radiation in 2009-2010. I just had another CT scan as I have to have them every 6 months for 5 years....still clear.... I include you in my prayers and hope we all are survivors. Live for each day and try to stay positive so not to release that dreaded hormone cortisol which seems to be linked to causing cancer.I have a healthy fresh food diet. I go to the gym 3 times a week and take Krill, Co Q10 and Vit D capsules to make sure that I keep my Vit D levels up as too little as well as to much seems to be a cause of cancer, also make sure I have enough Omega 3&6 and antioxidants. All the best everyone.
Chez0 -
Checking In...Chez said:6 monthly CT scan check up
Hi Sandysarcoma and all
I was diagnosed with myxofibrosarcoma of the left forearm in Sept 2009. Two operations and 2 months of radiation in 2009-2010. I just had another CT scan as I have to have them every 6 months for 5 years....still clear.... I include you in my prayers and hope we all are survivors. Live for each day and try to stay positive so not to release that dreaded hormone cortisol which seems to be linked to causing cancer.I have a healthy fresh food diet. I go to the gym 3 times a week and take Krill, Co Q10 and Vit D capsules to make sure that I keep my Vit D levels up as too little as well as to much seems to be a cause of cancer, also make sure I have enough Omega 3&6 and antioxidants. All the best everyone.
Chez
Hi All,
I was diagnosed with Fibrosarcoma in my right thigh muscle in September 2009. I am almost ready to transition to a 6 month check-in cycle. So far, so good. CT scans, MRIs, and a PET scan all show no evidence of cancer. It is hard to go in for check-ups, especially when doctors find nodules of concern. I am hopeful that things will continue to go well for me and I hope the same for all of you.
Take care!0 -
pet scanChez said:6 monthly CT scan check up
Hi Sandysarcoma and all
I was diagnosed with myxofibrosarcoma of the left forearm in Sept 2009. Two operations and 2 months of radiation in 2009-2010. I just had another CT scan as I have to have them every 6 months for 5 years....still clear.... I include you in my prayers and hope we all are survivors. Live for each day and try to stay positive so not to release that dreaded hormone cortisol which seems to be linked to causing cancer.I have a healthy fresh food diet. I go to the gym 3 times a week and take Krill, Co Q10 and Vit D capsules to make sure that I keep my Vit D levels up as too little as well as to much seems to be a cause of cancer, also make sure I have enough Omega 3&6 and antioxidants. All the best everyone.
Chez
Hi Chez,
Have they done a pet scan? I was diagnosed on my birthday Aug 16 2009. Fibrosarcoma of the nasal cavity. Was on the left side invaded the left Eye socket and was back in the brain cavity. Was about the size of my whole thumb. Was removed through the nose and went through 35 sessions of radiation. It is back behind the bridge of the nose and is pushing on both eyes and might be involved with the sack around the brain. Going to a neurosurgeon tomorrow. Looks like surgery around the 6th of March. No radiation this time. Wife and daughter really concerned. I get the idea that this is going to be the way of my life from now on until surgery not an option. I am doing well otherwise and hope for at least two more years as wife wants 50 years of marriage and would be nice to do that for her. My pet scan was of the whole body and I was clear except for the head. Think you need one just to ensure tumors are not cancer. My prayers will be for you and all those on this site.
Jerry0 -
HospitalFibroSarcomaUT said:Could you expound?
Hello RoseDodge,
I too have been trying to eat well and do things for myself in regard to diet and well being...
I am just being diagnosed as we speak with Fibrosarcoma and I believe that it is basically in my femur bone. I have done bone scans (which showed it was only in the femur and no where else...) and I have done xrays, as well as a couple of MRI's, a biopsy... However I am in the very very beginning process of this all right now. I meet with a whole team of doctors soon to talk about a course of action etc... I too feel completely "normal" as you say about yourself and do not understand this although I am a person of faith and so that is something I accept is out of my hands. I know there is purpose for everything under heaven...
I wonder if you could share with me what your prognosis was since your fibrosarcoma is the closest to mine by far on this website. Everyone elses seems to be in the arm, or face, or elsewhere in the body and so I related to you; ours both being in the leg. Sounds like yours was from the knee down. Mine the knee up. I am wondering if you were a high stage/grade from the beginning...?
I am trying to get a grasp of things so I know what to expect, but also I want to ask a lot of questions when I go in to see the doctors. Just wondering if anything else contributed to your prognosis (going to the lungs and your dr's giving up on you)... there has got to be more that they can do for you! I can't believe it. Was it already far spread or large in size to begin with? Sorry, this is new to me and I may be getting to personal with you... I just really hate that they can take out an entire bone, poison with chemo (you would think those 2 things alone would do it) and then have it go to your lungs. I am so so sorry to hear all of this and sort of hoped you could share more with me.
Let me know how I can support you. Trying to be healthy and positive in the USA.
Hi FibroSarcomaUT,
If you do not want to answer this I will not be offended as I to am leery of giving to much information on the net. I noticed you have UT on your username and wonder if you are going to UT in Memphis for care as I am? My doctor is Sandeep Samant in Memphis TN and I am getting ready to go through my second surgery. First was in Aug 2009 and was in the Nasal cavity, Left Eye Socket, and Brain Cavity. This one is behind the bridge of the nose and is pushing on both of my eyes and looks like it has invaded the sack surrounding the brain. They did a PET scan and looks like it is sill local but little more serious this time. Going to Baptist Hospital in Memphis for Surgery on 6th of March and going to see neurosurgeon tomorrow. My daughter did a large search last time and they wanted to take the left eye, Left cheek and Nose but my doctor thought at my age 68 it would not improve my chances that much and that was what the daughter found on the net. I was told that there was only about 5 people out there with my problem involving the nose. Glad I found this site, think I was ignoring the problem hoping it would go away but don't think that is the case. Samant said he hoped he could get me 2 years and got a little over but doesn't seem to want to talk about the future this time so trying to get the Wife ready for me not to make it though surgery but see there is someone that did make it so have hope for 2 more years so wife will get her 50 years of marriage. I will pray for you and yours hang in there think a positive attitude really helps.
Jerry0 -
Fibrosaromamomanddaughter2009 said:Fibrosarcoma
Good Evening,
My daughter 16 years old has fibrosarcoma of the brain. We found the tumor on her 16th bday and she had it removed on the 4th (her brothers bday) and we found out it was cancer on the 15th (my mom's bday). We started radiation on June 16 and still didn't know what kind it was for sure. After two pathologists it was fibrosarcoma. It is really rare to have it in the brain and not anywhere else. We ended the treatment July 31st. We just went on the 16th of November and found out that the MRI was clear. Now we have to go back and have it again in 3 months. Her's was a grade 3. She is doing great now. She does have short memory loss and sub clinical seizures now. However, she is playing volleyball and softball and living life as normal as possible. We just pray that the reports stay this way. Don't think negative always have a positivie outlook, it really works and helps you and the people around you. If you try to get up beat so will the people around you. I hope this helps you.
Hi momandaughter,
I was diagnosed in Aug 2009 with fibrosarcoma in the left nasal cavity involving the left eye socket and the brain cavity. Doctor removed it and I went through 35 sessions of radiation. It is back behind the bridge of the nose pushing on the eyes and he thinks it has attached to the sack around the brain. Going to a neurosurgeon tomorrow to let him look at CT and going to surgery on the 6th of March. You guys give me hope as I hope all is well with you and your daughter. Last time doctor hoped to give me 2 years but does not seem as eager to give me a time this time. Figured with brain involvement I would be lucky to get out of surgery but am still hoping for 2 more years for the wife she wants 50 years of marriage I am 70 now. I am keeping a positive attitude as any other would be worthless. How is the daughter doing, hope all is well with you.
Jerry0 -
fibrosarcomabron said:fibrosarcoma
hi to everyone going through this terrible time, I was diagnosed with fibrosarcoma in2000, it was in my jaw and cheek. After radical surgery I am now clear of the horrible disease, you can beat this -- all the best. bron in Aus
Hi Bron,
Don't know if you can beat this, but you can be around for awhile. Diagnosed in Aug 2009. It is back and going to surgery on 6th of March. Keep your spirits up remember positive attitude is best defense and I wish you all the best.
Jerry0 -
I'm still hereoldschief said:pet scan
Hi Chez,
Have they done a pet scan? I was diagnosed on my birthday Aug 16 2009. Fibrosarcoma of the nasal cavity. Was on the left side invaded the left Eye socket and was back in the brain cavity. Was about the size of my whole thumb. Was removed through the nose and went through 35 sessions of radiation. It is back behind the bridge of the nose and is pushing on both eyes and might be involved with the sack around the brain. Going to a neurosurgeon tomorrow. Looks like surgery around the 6th of March. No radiation this time. Wife and daughter really concerned. I get the idea that this is going to be the way of my life from now on until surgery not an option. I am doing well otherwise and hope for at least two more years as wife wants 50 years of marriage and would be nice to do that for her. My pet scan was of the whole body and I was clear except for the head. Think you need one just to ensure tumors are not cancer. My prayers will be for you and all those on this site.
Jerry
Hi everyone. It was Sept 2009 that I was diagnosed. It is now Easter 2012. My last full tests were done last January. I had to have endoscopies due to having has a precancerous polyps removed several years ago as well as the scans for the myxofibrosarcoma that I was diagnosed with a couple of year ago. I am happy to report that all is still okay. The can's report showed that there was no progression or recurrence of the cancer...Next scan due in July. God bless and best wishes.0 -
I'm still hereoldschief said:pet scan
Hi Chez,
Have they done a pet scan? I was diagnosed on my birthday Aug 16 2009. Fibrosarcoma of the nasal cavity. Was on the left side invaded the left Eye socket and was back in the brain cavity. Was about the size of my whole thumb. Was removed through the nose and went through 35 sessions of radiation. It is back behind the bridge of the nose and is pushing on both eyes and might be involved with the sack around the brain. Going to a neurosurgeon tomorrow. Looks like surgery around the 6th of March. No radiation this time. Wife and daughter really concerned. I get the idea that this is going to be the way of my life from now on until surgery not an option. I am doing well otherwise and hope for at least two more years as wife wants 50 years of marriage and would be nice to do that for her. My pet scan was of the whole body and I was clear except for the head. Think you need one just to ensure tumors are not cancer. My prayers will be for you and all those on this site.
Jerry
Hi everyone. It was Sept 2009 that I was diagnosed. It is now Easter 2012. My last full tests were done last January. I had to have endoscopies due to having has a precancerous polyps removed several years ago as well as the scans for the myxofibrosarcoma that I was diagnosed with a couple of year ago. I am happy to report that all is still okay. The can's report showed that there was no progression or recurrence of the cancer...Next scan due in July. God bless and best wishes. I also had a MRI of my head for another concern I had not in relation to my cancer but to put my mind at rest as I was getting some pain in my eye and nasal problems. Again all clear.0 -
fibrosarcoma near tibiaTiana IA said:Wanted to Share
It has been awhile since you posted on this forum. I noticed you mentioned fibrosarcoma in the upper leg. I also had fibrosarcoma in the soft tissue of my left quadriceps. I am curious how you are doing? I would love to hear more and share my story with you if you would like. 8 years cancer Free Today!!!
Blessings,
Tiana
Hi Tiana, I was just diagnosed with it and had two surgeries to remove the tumor ( the first time did not have clean margin) now I am waiting to hear about my treatment options. can you please share with me some of your experiences? where was your excatly? the garde and stage of it and course of treatment. thank you so much0 -
sarcomasuzie sunshine said:Hi Tara,
So sorry that the medical community doesn't seem to be helping you. In answer to your question about diagnosing my lump, neither my primary care physician or general surgeon thought it was anything but a harmless lipoma. Neither one ordered a cat scan or MRI. I convinced the surgeon to remove it because it was growing. After it was removed, the pathology report diagnosed it as sarcoma. I then had to have a second operation where they tried to get clean margins. I also had 32 radiaton treatments, and a visit to my oncologist last week indicated that I just have to wait and pray. I understand your frustration, because for 8 months I kept telling my primary care physician that this growth was not normal for me. She kept insisting that it was a harmless lipoma. Where are you located? I'm from Massachusetts.
Joni
Hi suzie
My story is excactly like yours. I had a small bump on my left tibia that no one took seriously. Finally few weeks ago I went to a dr and after MRI and few tests ered to an oncologist surgeon , he was so sure that it is benign that did the operation and pathology came back as high grade sarcoma. I did pet and ct scan of lungs which came back clean .So yesterday I had an other surgery to get clean margin and now waiting for treatment options.Can you please share your experience with me ? thanks.0 -
Survivor of myxofibrosarcoma diagnosed in 2009Chez said:I'm still here
Hi everyone. It was Sept 2009 that I was diagnosed. It is now Easter 2012. My last full tests were done last January. I had to have endoscopies due to having has a precancerous polyps removed several years ago as well as the scans for the myxofibrosarcoma that I was diagnosed with a couple of year ago. I am happy to report that all is still okay. The can's report showed that there was no progression or recurrence of the cancer...Next scan due in July. God bless and best wishes. I also had a MRI of my head for another concern I had not in relation to my cancer but to put my mind at rest as I was getting some pain in my eye and nasal problems. Again all clear.
Hi guys just clocking on the say my last CT scan done July 2012 shows no evidence of spread. I'm still here. Next scan due January. I have been watching my diet and trying to get my weight down. We know obesity is a problem. I am now 75kgs and want to go to 70kgs eventually but I am in no rush. I first noticed my lump having been on a meal replacement diet which I will never do again. I am eating a sensible diet full of antioxidants and omega 3s. I avoid processed foods and buy fresh food products every few days. I have increases green vegetables and salads and have included legumes nuts and seeds into my diet. I read a book called "Cancer to Wellness" which made a lot of sense. It was written by a cancer survivor and you can get it online. I have joined a free website program called "Weigh It Up". They have diet challenges frequently and provide healthy recipes to follow. Comments in the forums have been that some people have noticed since starting this program that their immunity seems to have improved as they haven't had a cold this season. I do take supplements of Krill oil, CoQ10 and Vit D. I was found to be deficient in Vit D which is linked to cancer too. The other supplements increase my antioxidants and omega 3. I go to the gym 3 times a week. I have to push myself there as I would be lazy with exercise otherwise, but my husband and I make it a social gathering with other retirees.We do need to take care of ourselves mentally physically, emotionally and spiritually so I have a healthy diet, exercise, try to make everyday a happy one so not to alert that hormone cortisol also linked to obesity and cancer, I outreach to others as when you care for others you care for yourself too and not focus on your own sadness and I go to church. I look after today and let tomorrow worry about itself.0 -
Hei!momanddaughter2009 said:Fibrosarcoma
Good Evening,
My daughter 16 years old has fibrosarcoma of the brain. We found the tumor on her 16th bday and she had it removed on the 4th (her brothers bday) and we found out it was cancer on the 15th (my mom's bday). We started radiation on June 16 and still didn't know what kind it was for sure. After two pathologists it was fibrosarcoma. It is really rare to have it in the brain and not anywhere else. We ended the treatment July 31st. We just went on the 16th of November and found out that the MRI was clear. Now we have to go back and have it again in 3 months. Her's was a grade 3. She is doing great now. She does have short memory loss and sub clinical seizures now. However, she is playing volleyball and softball and living life as normal as possible. We just pray that the reports stay this way. Don't think negative always have a positivie outlook, it really works and helps you and the people around you. If you try to get up beat so will the people around you. I hope this helps you.First, sorry my so bad English writing. I hope, that you understand something. I was looking internet and searching something information about fibrosarkoma of the brain, because my husband is that. It found 2009 and now it's 4 brainsurgery last week and I'm so worry and scared. He was get radiation t
two times and couple other medicines. This time, he's left side don't work. Doctors said 2009, that it was so rare. He was living its last four years happy life but now doctors said, that he doesn't live anymore so long, because it was coming four times four years and it was more and more agressive. I hope and pray that your daughter don't get it anymore.
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mpnst
hello sandy i also have one .how are doing with it?can you tell me more
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mpnst
hello sandy i also have one .how are doing with it?can you tell me more
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fibrosarcoma..
I just got diagnosed with fibrosarcoma about a week ago...I went to a cancer specialist and he was very optimistic..He said I don't have to do chemo or radiation but I will have to have surgery to remove the rest of the cancer. He said its unlikely to spread and it hasn't spread to my lymph nodes.. I am going to for a chest x-ray and ultrasound tomorrow...
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fibrosarcomachrisryan2580 said:fibrosarcoma..
I just got diagnosed with fibrosarcoma about a week ago...I went to a cancer specialist and he was very optimistic..He said I don't have to do chemo or radiation but I will have to have surgery to remove the rest of the cancer. He said its unlikely to spread and it hasn't spread to my lymph nodes.. I am going to for a chest x-ray and ultrasound tomorrow...
Hi chrisryan. I had surgery for fibrosarcoma on my forearm. They didn't get a good margin the first time and pathology results showed it to be high grade. After operation 2's healing, I was followed up with 32 sessions of radiation...no chemo..thought not necessary. Lymph glands were not a problem either. I thought I read somewhere that this form of cancer doesn't seem to go the the lymph glands first. My lump had turned bluish and had a blood flow of its own. See what the path results say and check again about radiation.
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fibrosarcomaChez said:fibrosarcoma
Hi chrisryan. I had surgery for fibrosarcoma on my forearm. They didn't get a good margin the first time and pathology results showed it to be high grade. After operation 2's healing, I was followed up with 32 sessions of radiation...no chemo..thought not necessary. Lymph glands were not a problem either. I thought I read somewhere that this form of cancer doesn't seem to go the the lymph glands first. My lump had turned bluish and had a blood flow of its own. See what the path results say and check again about radiation.
hello, I have a younger sister who was diagnosed with fibrosarcoma 3 years ago. It has recurred 4 times. She has endured three surgeries and awaiting a forth. She has received three separate rounds of chemo and will most likely do it again. I am trying to ask people who have dealt with this type of cancer what/where they received treatment. Just trying to find more info on where to go. If you have any suggestions it would be sincerely appreciated. It has been difficult searhing online for doctors who have the MOST experience with this type. Thank you!
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hey everyone, just diagnosed
hey everyone, just diagnosed in august with fibrosarcoma in the pelvic region, having a ct scan tomorrow then we go from there to surgery schedule, anyone else have it in the pelvic area, im not finding others with it in that area. just wanting to know what experiences you have had.
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Infantile fibrosarcoma
Hi All,
My sister's new born son in india was diagnosed with fibrosarcoma just after birth. right leg with big tumor growing fast. just wanted to see if you/your loved ones have been diagnosed with infantile fibrosarcoma. while <1 yr prognosis is very positive. I would love to talk to someone who has been through this.
Medical system in india has its own differences with US Medical system but, still would like to know what typical treatment was done.
Please let me know.
Thanks.
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