Fibrosarcoma

Chez said:

fibrosarcoma
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

myxofibrosarcoma
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 said:

Sounds familiar
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

Be Persistent
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 said:

Thanks Joni
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.

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

bron 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

Hello
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 .

tdpink said:

so nice to have found this group
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....

I too am glad
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

FibroSarcomaUT 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.

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

Chez said:

Fibrosarcoma Update
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.

Myxofibrosarcoma
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.

Wyndham said:

Myxofibrosarcoma
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

Myxofibrosarcoma of left arm
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

suzie sunshine said:

Myxofibrosarcoma
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.

Hi Suzie Sunshine
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

jimmyboy8946 said:

fibrosarcoma
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

fibrosarcoma
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