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Fibrosarcoma

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sandysarcoma
Posts: 5
Joined: Oct 2008

Is there anyone out there with my cancer...fibrosarcoma? I have never met another person with fibrosarcoma..if you are out there, what is your story, and how are you?

JoeyMN
Posts: 2
Joined: Oct 2009

yes i have it. currently going through treatments again after being clean for one year. its in my lungs now. i dont think its going to end like i would like, but i am keeping the faith.

sdmama
Posts: 5
Joined: Nov 2009

I'm sorry that your fibrosarcoma is back, JoeyMN. I was diagnosed in September. I had surgery in October and am going to start radiation next week. What treatment are you doing?

Chez
Posts: 24
Joined: Nov 2009

Hi sdmama
Like you I had surgery on my arm last October and start Radiation therapy next week. They are having trouble trying to position me as the tumour was so close to my elbow. I have had to go to the cancer centre twice for position, CT scans and tattooing. I will be thinking of you and praying that all goes well. I live in Australia.I guess we are all ovr the world.

Chez
Posts: 24
Joined: Nov 2009

Hi sdmama
I seem to be doing the same as you. I had a fibrosarcoma removed from my arm in October. I am into my third week radiation.. How are you going?

sdmama
Posts: 5
Joined: Nov 2009

Chez,
I have just finished radiation and am now waiting for my first CT scan in the hopes that my surgery and treatment were effective. I am praying they have been. My muscle was very sore and tired during radiation, but in the last few days, it already seems to be bouncing back. My skin is very burned, but I know that will correct itself soon. Hope you are well!

Chez
Posts: 24
Joined: Nov 2009

Hi sdmama
I finish radiation today 21/10/2010. We did find a solid lesion in my thyroid but it turns out not to be a concern and so IO am finished today. I am to see my surgeon in 3 months and have CT Scans every 6 months. I managed radiation well. I am a retired nurse and was nursing for over 40 years. I was able to watch my own redness of the azrm. One thing I did was at night I caked on the sorbalene and bandaged my arm so that the skin would be able to absorb the cream and not have it on the sheets. Doctor mentioned my skin was very good considering the treatment. there was concern that my elbow would stiffen, so I went to the Gym with my husband and when they did weight lifting exercises, I just moved my arm to the same exercises without the weights and I am able to move my arm normally now. I did get tired and sleepy but Christmas activities kept me from being self absorbed and the time went fairly quickly. My skin did get somewhat very red on a couple of occasions but I just slopped on the cream every time it felt tight and definitely more than twice a day. I am doing well and hope all our other friends are too. Would love to keep in touch to see how you go in the future. My sarcoma was on my left arm very near the elbow. Do you mind telling me where yours was. So far....We're WINNERS... God Bless and keep up our prayers for all the others on this site. ..Regards
Cheryl in Australia

Chez
Posts: 24
Joined: Nov 2009

Hi JoeyMN

So sorry to hear your news. Stay peaceful and I see you're keeping the faith. Good Luck and I will add you to my list of people to prayer for.

Chez
Posts: 24
Joined: Nov 2009

Hi JoeyMN
How are you going?? My prayers and thoughts are with you. I am hoping that the medical team has come up with the treatment that will beat this for you.

FibroSarcomaUT
Posts: 2
Joined: Mar 2010

Hey JoeyMN,

How are things going for you at the moment? Where was your fibrosarcoma before it went to your lungs? Was it an advanced one or something...why did you/your dr's think it ended up getting to your lungs? I know that is one of the places it will often met. to. But just wondered if they suspected an outcome like this early on because of your prognosis in the beginning......

I hope things are going well and that you ARE keeping the faith. That is so very important I believe.

Let us know. Stay healthy in eating and mind and spirit. And keep positive influences around you. :)

Chez
Posts: 24
Joined: Nov 2009

Hi Sandysarcoma
I have it too. I believe we are the rare ones. I read on the internet that sarcomas are 1% of cancers. I guess we are special. Good luck with your journey and I hope for a full recovery for you. My story is now online

momanddaughter2009
Posts: 3
Joined: Dec 2009

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.

Chez
Posts: 24
Joined: Nov 2009

Hi
My prayers are with you. I adore teenagers and so sorry that your daughter has had to face this monster in her early life. I am so glad she is doing as well as she is. I agree with your staying positive. My grandchildren call me the Party Animal and we have as much fun as we can often with family and friends. Laughter really helps the healing process. I called myself Feral Cheryl at the Cancer Centre. I joked with everyone around (as well as listened quietly to the other patients when we were able to talk one on one), and the Radiation Therapist said that I was the happiest patient they have ever had and not to change. After all, these lovely young angels are doing their best to help us.I always dressed up to go for treatment and one therapist had to ask me if I dressed liked this at home or did I do it for them. I laughed and said I was a slob at home. Nursing taught me to be a great actress and I like to keep everyone's spirits up as I notice you do too. God bless you and keep up the good work with your daughter.

oldschief
Posts: 4
Joined: Feb 2012

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.

Jerry

Finnishgirl
Posts: 1
Joined: Aug 2013

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.

 

 

 

momanddaughter2009
Posts: 3
Joined: Dec 2009

Hi, I am in the boat as you. My daughter has brain fibrosarcoma and she is 16 years old. Normally it will metatize to the brain, but her's didn't. There is not cancer anywhere else. I too would like to find more people so I know what our future might hold.
What kind of fibrosarcoma do you have?

momanddaughter2009
Posts: 3
Joined: Dec 2009

Hi, I am in the boat as you. My daughter has brain fibrosarcoma and she is 16 years old. Normally it will metatize to the brain, but her's didn't. There is not cancer anywhere else. I too would like to find more people so I know what our future might hold.
What kind of fibrosarcoma do you have?

Chez
Posts: 24
Joined: Nov 2009

Hi sandysarcoma
I see not further comments from you. How are you managing this cancer?? Hope you are well.

bron
Posts: 1
Joined: Feb 2010

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

Overcomer09
Posts: 10
Joined: Jan 2009

I to have a swollen left cheek bone .
It is almost two times the size of my right .
CT Scan showed nothing .
No one seems to think it is serious but ,
since I'm recovering from lipo sacrcoma on my left thigh, brnign tumor left elbo and now a brain tumor right pons , not sure what it is yet , I am so concerned and fustrated about not getting it taken care of to .
Praying all goes well for you .

oldschief
Posts: 4
Joined: Feb 2012

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.

Jerry

RoseDodge
Posts: 5
Joined: Feb 2010

Diagnosed 2008 Malignant Fibrous Sarcoma in my leg bone. Had surgery took out bone and replaced with endo prosthesis (prosthesis within my leg), from knee down to ankle. Had very strong chemo for 11mths. Cancer came back in lungs within 6mths. March 2009 was given 6mths to live, Drs could do nothing more for me. Now March 2010 and still well, not 100% but I dont miss out on much. To look at me you would think I was normal, I look really well and most of the time feel well.

I put my well being down to diet, small things like NO sugar and lots of antioxidant foods.
Australia

FibroSarcomaUT
Posts: 2
Joined: Mar 2010

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.

Tiana IA
Posts: 2
Joined: Sep 2010

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

Reba2
Posts: 3
Joined: May 2012

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 much

oldschief
Posts: 4
Joined: Feb 2012

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.

Jerry

Freiteez
Posts: 1
Joined: Mar 2010

In the 5th grade I developed a lump under my right shoulder. The doctor said we had to take it out and we found out it was fibrosarcoma. I went to childrens hospital and they did another surgery to take out cells in the area and a bone marrow test. For years they dis MRI tests, cat scans, blood tests and bone scans. My church all prayed for me and the people at childrens hospital told us that they found no more signs of the cancer. I have been doing great ever since. It was a big part of my life that I will never forget. I might have been the youngest with fibrosarcoma and survived it...but I know this was a miracle and I don't take this for granted. I just wanted to share my story. I summarized it as best I can. Sounds like something simple but going to the doctors and everything was about 4-5 years of my life

tdpink
Posts: 1
Joined: Sep 2010

Hi everyone! It is so wonderful to have found this group - I have felt so alone with this cancer since so few people have it or even know about it. I ended up at NIH when I was 13 because 5 doctors couldn't figure out what the large lump was below my collar bone. I had surgery and radiation. It was very difficult (12 hour surgery) since the tumor was encased by a major nerve in my brachial plexus. I have a lot of swelling and nerve damage but I kept my arm! It returned in the same location when I was 20 and it had spread to my right lung. I had another surgery and was followed until 2006 with MRI's, CT scans, etc. Now, 4 years later, it has returned. I have a 2 1/2 year old son and 7 month old daughter so things are much scarier for me this time :( I am scheduled for surgery next week. They have always seen numerous nodules in my lungs (they couldn't take everything when I had the surgery at age 20) but they never changed. Now there is a 4.5 cm tumor in my left lung and two others are growing in my right. They are only going to operate on the left for now. Thank God for NIH - a very prestigious hospital wouldn't even operate on me.

I just wanted to share my story since I have found people who truly understand :) Could you pray for me as I will for all of you? Thank you so much....

24242
Posts: 1417
Joined: Mar 2001

It is important to be among people who are like us and truly understand when the whole world says they do but can't really. Wow you too have been through enough alread but that does seem to be how life goes. I am 14 year breast cancer survivor with new lumps on my bicept tricept area and one growing yet no one thinks it is anything to worry about yet they cannot agree on what it is. MRI's and ST scans are inconclusive and that isn't good enough for me though it might be fine for them.
I have had other lumps since my stage 3 with 11 out of 21 nodes were positive but came back benign but didn't stop me from removing second breast. They thought I should keep though I had 4 different lumps biopsied and that was enough for me.
Unfortunately these lumps feel very much like the cancerous tumors I had before and the pain and physical problems with arm shoulder and had much the same as well. Yes it is scary but we must face our fears and move on in this thing we found LIFE...
I am not working since do physical labour and now having to consider another career something I thought I was done doing and allot more sleepless nights.
Know I will keep you close at heart and my prayers are with you.
Take good care of yourself,
Tara

Tiana IA
Posts: 2
Joined: Sep 2010

I was browsing fibrosarcoma and cancer survivors online this evening as today is my 8 year anniversary of being diagnosed and having limb sparing surgery on my left leg. I searched for something like this at the time, I felt very alone and isolated as fibrosarcomas are not as common as most. I am so pleased to see a wonderful support group such as this. I hope that if anyone needs to talk, you will message me. I will keep you and the rest of those on this forum in my prayers. Never loose sight of HOPE! Many Blessings, Tiana

Chez
Posts: 24
Joined: Nov 2009

Last year I was diagnosed with a HIgh Grade Myxofibrosarcoma of my left forearm. I first noticed it in March 2009. I went to 2 doctors in March who told me it was a sebacceous cyst and not to worry about it. In May I went to another doctor who told me it was a lipoma and not to worry about it as I could live with it. I might add I had been a nurse for over 40 years and I didn't like this lump and so I continued to watch it grow and finally I went to another doctor in September 2009 and told him my concern that the lump may be a soft tissue sarcoma. I was sent for diagnostic tests and then 2 operations on my arm, 2 months of radiation over Dec/Jan. As the likely spread is to the lungs, I was told to have CT scans every 6 months for 5 years. The first CT scan showed a granuloma in my lung. I notified the Cancer centre and although I was aware this is benign and scar tissue, they advised me to have a CT scan in 3 months time. This was done a week ago. There is no change and there are no metastesis. I thought I would update you with the good news so far. Thinking of you all and I do add you to my prayers. Keep fighting as we now know there can be some wins.
Hopefully yours
Chez

suzie sunshine
Posts: 15
Joined: Mar 2010

So glad to hear about your recent good news. I also had two operations for Myxofibrosarcoma on my outer upper thigh, earlier this year. My primary care physician also kept telling me that it was a harmless lipoma in 2009. I also had 32 radiation treatments. My next appointment with my oncologist is mid-August. Hope I also get a good report.
Suzie Sunshine

24242
Posts: 1417
Joined: Mar 2001

I am 14 year breast cancer surivor of stage 3 IDC with 11 out of 21 positive nodes. No one is taking the two lumps I have now in my arm and one continues to grow. I had biopsy of the very small lump but no one cares about the big one. It hurts and makes it difficult to do my heavy labour job. I have heard the lympoma diagnosis, fat cyst and the sebaacceous cyst from all different doctors. I had a hard time getting my diagnosis for breast cancer because just too healthy and now get the feeling doctors just think I am cured and that is all there is too it.
Did your mass show up on an altrasound?? Ortho surgeon believes it would cause great problems for me to have lump removed even though they think it is nothing to worry about.
Did your mass show up on MRI? Only one doctor out of 4 even thinks that this should be watched and keep their eye on it. I want it removed because I heard the same bull for the cysts I had found prior to last diagnosis. How do you have a faith in a system that continuallly lets you down because you are not sick enough in their minds though I know my body and I find these lumps because they hurt me.
Any Advice??
Thanks
Tara

suzie sunshine
Posts: 15
Joined: Mar 2010

Hi Tara,

My lump wasn't diagnosed as Sarcoma until it was revealed on the Pathology report.

Be persistent and find out why there hasn't been a biopsy done on the larger lump. Maybe removal or radiation will be recommended. Also, make sure they know that the lumps are painful.

Joni (Suzie Sunshine)

24242
Posts: 1417
Joined: Mar 2001

I have now seen different pain specialist actually two different from my usual doctor I have been seeing at my cancer clinic. I guess I am totally out of sorts because much like the lump that I did have that did grow in lymphnodes it grew inside didn't show outside of skin and it hurts though my ortho surgeon doesn't see how it can. Then again I do know male doctors that think having your breasts removed doesn't hurt either.
I was glad that one doctor felt the need to keep an eye on me. Maybe she doesn't feel the same way the other doctors do about the CURE. That did make me feel better knowing I am not being unreasonable and they should keep a close eye on this. Saw another Pain specialist yesterday and she read MRI and agrees they see something but she too said that it is inconclusive as to what it is. Why am I and why is my mother only ones who seemed concerned since Haveing the stage 3 11 out of 21 positive nodes and very aggressive form of breast cancer. My mother was a palliative care nurse for much of her nursing career working for VON home care. Thanks God for mothers because she really has been there for me when I feel the medical community isn't. I am well built and always look healthier than I am and I guess that is hard to over look. This doesn't feel right when it is still growing and quite frankly seems I know my body and seem to know in my soul something is wrong. I saved my life the last time begging for help though I had a fibrous cyst and then 6 months later I am so sick I cannot work since do very physical work. I had to beg someone to help me then and trying again to be heard. I want it out because it is growing and causing me pain and problems with the arm I need to work. I sit home trying decide what I am going to do with the rest of my life if I cannot do my third career now that my painting and mudding/taping days look quite limited. Everyone thinks I must be good at and use to change and overcoming my obsticles yet I do not see what they do and seems I have to fight the whole way.
Did they see your lumps when did scan or MRI?? The see my mine as I said.

suzie sunshine
Posts: 15
Joined: Mar 2010

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

24242
Posts: 1417
Joined: Mar 2001

I just read someone's post about a lump on bicept like mine and the symptoms her sister had are so much like my own. Numbness not just tingles and pain had with carpo tunnel most of us have if did repitition in our work. My whole hand goes numb and that is really unnerving. They see the lump on my MRI but is inconclusive as to what it truly is and that just isn't good enough for me since having played this stupid game before with my diagnosis for my Breast Cancer 14 years ago.
Thanks for posting back I find peoples stories sometimes more helpful than the doctors positive takes. I guess they never want to scare us but having a lump growing inside much like that last time around is very difficult to get over, actually keeps it all too consuming since hurting and causing me problems. I feel like I am just too healthy for them and they truly believe that I can't get another cancer too. What they did to me almost killed me since 11 out of 21 nodes were positive and lump grew in arm pit. I guess they just believe so strongly and sometimes that is just the obsticle in getting properly diagnosed.
All these years later our health system is becoming a joke so grateful that I am still able to get help through my cancer clinic making a diagnosis even that much faster. This Orthopedic surgeon I am seeing doesn't want to remove it and that scares the hell out of me. He thinks I could have more problems and so having another MRI Sept which they will also include the shoulder this time. He thinks could be the shoulder now. I have been fortunate in a way because I have seen so many different doctors at the Cancer Clinic and not all feel the same way so that has helped me in realizing maybe I will find out soon enough. One lump benign but that wasn't the big mass and they did not biopsy it which I found most interesting. I have friends that just have areas that doctors don't like and have biopsies of just to see what it is and why this I will never quite understand.
I can hardly cut the grass or use it because of the pain it causes and all in the lump and shoulder upper area. Interesting is all I can say these days.

Thanks
Tara

Reba2
Posts: 3
Joined: May 2012

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.

Chez
Posts: 24
Joined: Nov 2009

Hi all
Here we are in March 2011. My update is that I am having 6 monthly CT scans of Chest, Abdo & Pelvis. Some nodules were found on my thyroid at least 4 scans ago, but there was no mention on the scan reports to have them investigated. I did ask for a referral to have these checked out in 2010 when I was having radiation as I wanted everything checked at the time. The pathology report to the biopsy showed that they were colloid nodules which are benign. Strangely the recent report to the CT scans done a few weeks ago suggested that the nodules on my thyroid be investigated. My doctor agreed with me that this was done previously so this investigation has been covered. I hope we are right. That means so far so good and I remain clear. Good luck all. Prayers do go up for you all.

suzie sunshine
Posts: 15
Joined: Mar 2010

Hi Chez

Thanks for the update. Not many of us have this type of Sarcoma. I too am under the 6-month CT watch. Mine is acheduled sometime in September.

I wish you all the best.

Chez
Posts: 24
Joined: Nov 2009

Hi Suzie
I will be interested to know that you are keeping well. Keep the faith and no stres. Bring out your sunshine and make the most of every day...:)
Chez

Chez
Posts: 24
Joined: Nov 2009

Hi Suzie
I will be interested to know that you are keeping well. Keep the faith and no stres. Bring out your sunshine and make the most of every day...:)
Chez

Wyndham
Posts: 2
Joined: Apr 2011

I've only just discovered this web site and couldn't believe I found people actually comparing experiences with this type of cancer as it has often felt like you're the only person on the planet with this disease. I had a lump present itself on my left fore arm and had an ultra sound in Feb 2009, was told it was a lipoma. A second lump, close to the first was ultra sound Oct 2010 and again told it was a lipoma. I ask to have this one removed as it was in an annoying position so it was agreed to take them both out. The first one was a low grade Myxofibrosarcoma and the second was high grade approx 5 cm. So the journey began. I'll cut this storey short.... 5 surgeries in 9 weeks, the first November 2010 the last was end on Jan 2011. The largest op, being the large resection overing the area of both sarcomas, failed to achieve the clear zone so the last op a whole muscle was removed. We were told at this time that if a clear zone wasn't achieved we were facing a full amputation. We did thankfully get the clear zone after waiting 18 days for results as everything had to be sent to the RPA Pathology board (sydney) who specialise in rare tumors. If there is any local reccurrence we will still loose the arm. After 6 weeks of radiation you wonder how anything could possibly still remain. Here's hoping. We now go to Sydney (i'm in country NSW) for 3 mthly MRI's and CT's as there are four nodules in my right lung, and 6mthly PET scans. Despite all the surgeries and radiation theropy, I think the hardest part is the waiting...waiting for surgery, waiting for pathology or scan results, waiting for the next scan. I really try not the dwell but it is always there. Three great kids keep me busy and well grounded. Thanks for listening. Best to all. :) Wagga Wagga, NSW Australia

Chez
Posts: 24
Joined: Nov 2009

Hi Wyndham
Sorry to read your news. I also had a high grade myxofibrosarcoma removed from my left forearm. I had 2 operations and 32 sessions of radiation. I went to 3 doctors from March to September 2009, about my lump and all told me not to worry about it. One had mentioned having a ultrasound but didn't refer me. Having read your story I wonder whether having the ultrasound earlier would have assisted with my diagnosis. Like you I wanted it removed. Finally I went to one more doctor as the lump had turned blue and grown 3 little lumps on the top of it. I was then referred to have an ultrasound followed by a biopsy. I am grateful to the radiologist who took 2 more biopsies than normally and told me no matter whether the report of the biopsy was inconclusive or not (He was having trouble getting cells as he was drawing up much blood which he said was the tumour had its own blood supply), that I must get the lump removed. I finally felt someone was on my side and yes all hell broke out. At completion of treatment I was told to follow up with 6 monthly CT scans. No MRI..I have nodules on my thyroid which the last CT report stated I should have investigated but I did have them (if they are the same ones) biopsied 12 months ago, so will be interested to see what next CT scan says. Also I have a granuloma (benign) in my lung, so I shall keep an eye on that as well. I would be very interested to see how you are going and I would love to get updated research on this if you know of any. I believe RPA is a specialised unit in this. I was treated at Nepean Cancer Centre and seem to be now on my own with the GP. My GP found that I was deficient in vit D which they are now linking to Cancer. I read an article by Dr Watson who was one of the researchers who discovered DNA. He has cancer too. He believes in Vit D supplements and is taking it himself. He also argues that late stage cancer may be easier to cure than early stage so not to think that late stage cancer is hopeless, which I found interesting. He says that they don't understand the mechanism of Vit D and that those with high Vit D levels will be cancer free for longer.He doesn't know what is controlled by it. Please stay optimistic as we don't want to release that stress hormone cortisol. I live in the Blue Mountains. I am keeping myself fit by going to the gym and eating healthily following the CSIRO Total Wellbeing Diet. I also take Krill tablet and CoQ10 supplements to get in antioxidants and Omega 3&6. It just might help. I will add you to my prayers and be thinking of you as I do our other friends on this site
Chez

eve15
Posts: 1
Joined: Jun 2011

Glad I found this page too and your experience. I have not been diagnosed. I had a stroke caused by stress and severe migraine in 2009. In 2010 I was admitted again because I felt numbness in my left hand and my legs often swell. I often have severe leg cramps even when I was sleeping and it usually drags right up to my thigh. Both my knees have arthritis. I also have a cracked right knee. It was during the scan for arthritis that the specialist found a growth on my right thigh bone.It could only be visible via MRI and CT Scan. They wanted to take a scraping of it to see if that's anything to worry about but before they do that, they wanted my knees to be better and wanted me to go for physiotherapy to strengthen my thigh muscles. They said if I do not go for the test, it might spread up to my backbone but until today, I never went back. I can't bear the thought of my thigh being cut or a knife going through it. They said, if the growth is not rapid, it might take years before it spread further up so I thought, by then it would be the right time to go and I don't have to bother finding out what it is. Right now its only about 3 inches long. Do any of you have the same symptom? Should I go for the test? Should I worry? Already I am under a lot of stress from my abusive husband, I do not want more stress knowing what I have. I am also asthmatic and have stomach and colon ulcers.
Eve15

jimmyboy8946
Posts: 1
Joined: Jun 2011

Sandy,
I had a 14.5 centimeter fibrosarcoma removed from my left,lower belly and pelvic region this past month (may 16,2011). I am still recovering from the surgery as they had to make two fairly large incisions in order to remove the tumor. I start with my Oncologist on this coming tuesday (june 14th).I don't know what to expect but am hopeful. Hope you are doing better !
Jimmy

Mickster47
Posts: 2
Joined: Jun 2011

I was diagnosed on May 5th with fibrosarcoma. I had a cyst removed April 8th from my right hip, the cyat made to 4 different labs before it was confirmed that I have the sarcoma. I took my original surgens appointmet with a cancer center in Baltimore, but I also knew enough to not go with the 1st doctor. I went on line and and then contacted Sloan Kettering in NY, Hopkins in Balt. and was referred to the Helen Graham Cancer Center in Newark DE. I went to all three hospitals, interviewed all the doctors like I was interviewing a baby sitter, and decided on the Helen Graham Cancer Center.

I have a surgery to creat negative margins in June 21, 2011, and I hate waiting. After surgery I will have a better idea of what I'm going to face post-op. Currently I am using a technique that I was taught in a hypnosis that may be helpful for others... I envision scooping the cancer out, putting it on little boats, then watch as the boats sail away. I also pray my butt off. If you don't have a belief in God or a higher power I suggest getting one. It has helped me.
Michael

Chez
Posts: 24
Joined: Nov 2009

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

sdmama
Posts: 5
Joined: Nov 2009

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!

oldschief
Posts: 4
Joined: Feb 2012

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

Chez
Posts: 24
Joined: Nov 2009

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.

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