CancerCompass message board discussion started by Qksand on 4/6/2007 http://www.cancercompass.com/message-board/message/all,11062,0.htm Tue, 07 Oct 2008 00:00:00 GMT Tue, 07 Oct 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ I was recently dx high grade myxofibrosarcoma after surgery to remove a lump, at the right hip, thought to be benign. I found the lump only about 8 months ago and my gp based on MRI thought it was most likely benign and no biopsy was taken. Well, we should have approached it with the potential high risk in mind. Now, we have to seek expert help. Any suggestions and experience in potential spreading of this soft tissue sarcoma? I read that chemo is not particularly effective.    Qksand Fri, 06 Apr 2007 00:00:00 GMT You need to be seen by an orthopedic oncologist.  What kind of surgery was done?  If it was complete with 3 to 6 cm margins or a "compartmental" resection then maybe no additional surgical treatment is necessary.  Most people would then get wide field Radiation to prevent local recurrence which could be 30 to 50 percent without.  Local contro is 90 percent with limb preservation.  The biggest failure is in the lung.  Chemo in adult soft tissur sarcoma's have not had good results although with a high grade tumor most get chemo after local treatment in the hopes it improves results (but no real evidence).You should have CT scand done and a repeat MRI of the area to see if there is residual disease or "satellite" lesions.  A bone scan and PET may be helpful. Witchdoctor Fri, 06 Apr 2007 00:00:00 GMT Thanks for the info. I am in the process of getting 2nd opinion by oncologists. So far, their approaches look similar. Unfortunately, there does not seem to be effective treatment to slow or prevent spreading. Any clinical trials aiming for that in the making? Alternative medicines to boost body immunity?  Knowing that I have this nasty cancer gave me a different outlook to life. It's sort of like two sides of a coin - before, I had the thinking that I may live for a long time that I tend to put things off or had my hands in too many things; now that I know my life is most likely of very limited time span, that clarity in a way is very helpful in sorting out priorities.    Qksand Sun, 08 Apr 2007 00:00:00 GMT Make sure by oncologists you mean ; Surgical Oncologist, Medical Oncologist and Radiation Oncologist.  You will need all three most likely.Depending on the size of the tumor and the Workup (staging) you could have a good chance of cure, so don't throw in the towel or be too pessimistic.  What you have IS treatable. Witchdoctor Sun, 08 Apr 2007 00:00:00 GMT Got an appointment with MD Anderson Sarcoma Center. I am just picking up the pieces and gathering my means to get on with the most promising treatment. Thanks for the encouraging msg.  Qksand Tue, 10 Apr 2007 00:00:00 GMT It looks like I am going to get a resection which will remove sufficiently the tissues surrounding the primary tumor so as to have certain amount of negative margin. There will be real time pathology on frozen tissues to verify  negative margin is achieved. However, it will be only gross. Detailed pathology will happen later in 2-3 days. This means that cancer cells still might be found but should be minuscule  Later, radiation will be applied to kill off the minuscule ones. In reading the literatures on STS in extremities, there seems to be a consensus that resection with radiation only minimize local recurrences and has no correlation with metastasis and survival rate. High grade malignancy of primary tumor indicates the propensity of metastasizing. This means to me that resection and radiation has NO CURE EFFECT. This raises my questions: what is the significance of primary tumor ? Does it mean the primary tumor is not really the source of metastasis? Or, before removal of the primary tumor the metastasis already could have occurred? Or, the metastasis could be merely a manifestation of local cell mutation turning into MFH?I now found out that there is another complication: There was ecchymosis (spread of blood) from my initial surgery. "one must assume cancer cells have been transported along". That means I should have radiation treatment over a wide area where ecchymosis occur. I was taking photographs of the recovery of my initial surgery and the bruises showed up well on the photos. Well, time to move on. qksand   Qksand Mon, 16 Apr 2007 00:00:00 GMT I do not know what you have read, but, the fact that resection and irradiation does not cure people is "hogwash".  However, even assuming it does not , the combination allows for "limb sparing" and better long term function.  Is the literature suggesting leaving the tumor in place??  Witchdoctor Mon, 16 Apr 2007 00:00:00 GMT Sorry, if I did not make myself clear.My primary tumor was already removed. The resection is to remove additional surrounding material and create a negative margin. I got information from NIH, Sloan-Kettering, .... It is well documented that resection has no correlation with metastasis and survival. I would like very much to know otherwise, it would be more encouraging to me. Can you help directing me to the source of info? Thanks.qksand Qksand Mon, 16 Apr 2007 00:00:00 GMT http://www.nccn.org/professionals/physician_gls/PDF/sarcoma. Witchdoctor Tue, 17 Apr 2007 00:00:00 GMT I think you are mixing up the "extent" of resection with resection in general.  However, think common sensically if the tumor has not spread and is removed then mets will not develope.  If you leave it there IT WILL eventually spread. Witchdoctor Tue, 17 Apr 2007 00:00:00 GMT Wow, many thanks for the NCCN webpage. It looks very informative.  I'll be spending time reading it today. Your support is greatly appreciated. qksand  Qksand Tue, 17 Apr 2007 00:00:00 GMT Completed the pre-operative exams and interviews. I will go into resection plus reconstructive plastic surgery next Tuesday. A chunk of my hip (approximately 9cmX13cm oblong shape and 2-3cm deep) will be cut out. That will probably take 1-2 hrs. I will have an immediate weight loss of 1+ pound. How about that! The plastic reconstruction turns out to be complicated and interesting to learn. Basically it is a cut and paste followed by sew operations. It will take 3-4 hrs. I will stay in the hospital for 5-7 days. For the first few days, I will be given pain killer thru PCA (patient controlled analghsia). I think I will choose epidural PCA. I believe the risk will be very low at this large national cancer center with experienced anesthesiologists and good facilities.  The side effect does worry me is the urine retention because I already have that problem with my BPH. Hopefullly, it will be minimum. Assuming I heal sufficiently from the surgical wound in 4-6 weeks, I will start on a 5-6 weeks long Radiation Treatment (RT). The radiation oncologist said that for my sarcoma there is a 90% cure rate. Witchdoctor told me about the possibility of cure and now from this oncologist. This gives me a big uplift. Hope it happens. However, there are other doctors having different opinions. So, I just cross my fingers, take whatever happens and hope for the best.      Qksand Sat, 05 May 2007 00:00:00 GMT Good luck...I too had my doubts when I was diagnosed April '96 with MFH Sarcoma.  I was given radiation for 5 weeks and then after the site healed I had surgery to remove the tumor and resection the muscle in my upper thigh.  I go fo chest x-rays every 3 months and am happy to report that at this writing I am still in remission.  It is really difficult to find information on sarcoma, it's such a rare cancer that there just isn't as much info as with more common cancers.  Sometimes being unique is not all it's cracked up to be, is it?  Good luck with your surgery and I pray that your outcome will be as positive as mine.  On 5/5/2007 Qksand wrote:Completed the pre-operative exams and interviews. I will go into resection plus reconstructive plastic surgery next Tuesday. A chunk of my hip (approximately 9cmX13cm oblong shape and 2-3cm deep) will be cut out. That will probably take 1-2 hrs. I will have an immediate weight loss of 1+ pound. How about that! The plastic reconstruction turns out to be complicated and interesting to learn. Basically it is a cut and paste followed by sew operations. It will take 3-4 hrs. I will stay in the hospital for 5-7 days. For the first few days, I will be given pain killer thru PCA (patient controlled analghsia). I think I will choose epidural PCA. I believe the risk will be very low at this large national cancer center with experienced anesthesiologists and good facilities.  The side effect does worry me is the urine retention because I already have that problem with my BPH. Hopefullly, it will be minimum. Assuming I heal sufficiently from the surgical wound in 4-6 weeks, I will start on a 5-6 weeks long Radiation Treatment (RT). The radiation oncologist said that for my sarcoma there is a 90% cure rate. Witchdoctor told me about the possibility of cure and now from this oncologist. This gives me a big uplift. Hope it happens. However, there are other doctors having different opinions. So, I just cross my fingers, take whatever happens and hope for the best.        Chris54 Fri, 25 May 2007 00:00:00 GMT Hi Chris54,My mother has been dx a myxofibrosarcoma.After the first operation it seems they do not have much clue how to cure it. I am looking for an hospital specialized in the cure of such form of cancer. Please can you advise me.Thanks a lotBest Regards,Riccardo   Riccardo Mon, 11 Jun 2007 00:00:00 GMT Dear Sir/Madam, My mother is experiencing the same as you. Myxofibrosarcoma. after resection doctors seem not having has clue on cure. I need to find an hospital with specific competence on this form of cancer. Can you help me?ThanksBest Regards,Riccardo Riccardo Mon, 11 Jun 2007 00:00:00 GMT I saw Dr. Jeffrey Kneisl in Charlotte, N.C.  Chris54 Mon, 11 Jun 2007 00:00:00 GMT Dear Chris54Thanks a lot. My best wishes to you.Riccardo On 6/11/2007 Chris54 wrote:I saw Dr. Jeffrey Kneisl in Charlotte, N.C.   Riccardo Mon, 11 Jun 2007 00:00:00 GMT Adult soft tissue sarcomas are primarily treated with Surgery and Radiation.  With gross total resection (limb sparing) and radiation a 90 percent local control can be obtained.  The cure rate is less though and depends on variables the most important being Tumor Grade.Chemo has been a mixed bag, meaning incosistent results ,but it is usually added in Grade 3 tumors in the hope of reducing distant mets and in people who have systemic disease.  Children with sarcomas respond better to chemo for some reason.Soft tissue sarcoma is also one of the tumors where if the tumor comes back after a couple or more years in the liver or lung with a solitary nodule then aggressive treatment (resection +- radiation) can result in prolonged survival and even cure. Witchdoctor Mon, 11 Jun 2007 00:00:00 GMT  On 6/11/2007 Riccardo wrote:Dear Sir/Madam, My mother is experiencing the same as you. Myxofibrosarcoma. after resection doctors seem not having has clue on cure. I need to find an hospital with specific competence on this form of cancer. Can you help me?ThanksBest Regards,Riccardo I am sorry to hear about your mother's situation.I had my resection and is now ready for radiation treatment which will last for 6 weeks. After that they will monitor me with MRI, CT, blood samples, X-ray ... periodically. There is no other treatment planned.There are several very reputable cancer centers for sarcoma, such as  Sloan-Kettering in NY, MD Anderson in TX, ...... I chose MD Anderson because I live in TX. My understanding of sarcoma is that chemo therapy effectiveness is controversial and I don't think is accepted as standard proceducre. Of course it is still being researched by many medical teams.  In the meantime, I am pursuing traditional Chinese medicine and acupuncture hope to find some leads there.I hope this is of some help to you.Best wishes,qksand      Qksand Thu, 14 Jun 2007 00:00:00 GMT Chris54, thanks for your message. It felt so good to hear successes. I keep my finger crossed and hope to post similar message like yours in 10 more years.Best wishes,qksand  Qksand Thu, 14 Jun 2007 00:00:00 GMT In 10 years we will have a party!!!! Chris54 Thu, 14 Jun 2007 00:00:00 GMT I started my radiation treatment 4 days ago. It was painless and I have not felt any side effects either. I asked the therapist what the radiation beam is. She said it is photon. I was surprised to hear that. Can photon beam penetrate deep without burning the tissues along its way??? I am going to ask the radiation oncologist next week when I see him. qksand  Qksand Fri, 22 Jun 2007 00:00:00 GMT I also started taking traditional Chinese medicine (TCM) which supposedly balances my ying-yang and improves my immunity. The only concern I have is the source of the herbs and do they have heavy meta contamination. I wonder if there is chemical analysis labs around that can analyze the soup from the herbs that I drink ??A  friend of mine who is an acupuncturist. He recommends that I try acupuncture to boost my immunity as well. It would have no side effects. Anyone has had experience to share??qksand   Qksand Fri, 22 Jun 2007 00:00:00 GMT  On 4/6/2007 Qksand wrote:I was recently dx high grade myxofibrosarcoma after surgery to remove a lump, at the right hip, thought to be benign. I found the lump only about 8 months ago and my gp based on MRI thought it was most likely benign and no biopsy was taken. Well, we should have approached it with the potential high risk in mind. Now, we have to seek expert help. Any suggestions and experience in potential spreading of this soft tissue sarcoma? I read that chemo is not particularly effective.    Hello.  I was diagnosed a year ago with myxofibrosarcoma in my left buttock.  I was lucky enough to have insurance that allowed me to self refer to an oncologist, which is what I did when I felt that lump below my left hip.  I found an oncologist that had a name that sounded american, so I could be sure to understand everything she had to say, and I also looked for someone close to home.  I found Dr. Marsha Fink, Pacific Coast Hematology and Oncology and spent the last year in treatment.  First was a biopsy (the night of my first visit), followed by a major resection, followed by three sessions of Chemo, (AIM...Adriamycin, Ifosfamide and Mensa), then six weeks of radiation then another three sessions of chemo.  This chemo is specific to Fibrosarcoma, it isn't a quick little visit to the oncologist, sit in a chair and leave...it is hard core week-long hospitalizations for each session.  I spent a total of 132 days in the hospital last year, but I am here today, back at work, still in pain, but in remission.  If you have any questions, you can write me and we can exchange phone numbers...I am so sorry to hear about your diagnosis, but I can give you moral support, a friend who knows what you are going through and tons of support groups...like chemo angels, who are god-sends!  Hope to hear from you...I wish you well!  Sandy jstsandy Tue, 12 Feb 2008 00:00:00 GMT I have been absent from this message board for 6 months. During that period, I have had two follow up examinations and both are negative - no recurrence nor spreading. So far so good. Each examination involves x-ray, CT of the chest and MRI of my right hip, ultrasound of the lymph nodes at the right groin.  As a by-product of the multiple image studies, they found nodules in my thyroid which turned out to be benign and "severe calcification" at LAD coronary artery which turned out to be moderate and am going thru Lipitor+baby aspirin treatment. The resection surgery removed a large chunk of muscle at the right hip. I have recovered, my doctors said, well. However, the hip joint felt stiff after sitting for an extended time. I do treadmill walking 3-5 days a week. When the weather warms up, I'll try swimming which should be easier on the joint.A friend of my friend was dx with a large lump of sarcoma at her abdomen. She is going through with chem and I heard she wanted to stop after the4th session with 2 more sessions to go. Must be painful.Thanks, Sandy, for your support. Hope all is well with you. qksand     Qksand Tue, 08 Apr 2008 00:00:00 GMT Sandy, thanks for your msg. It sounded like we had sarcoma at very similar location. I felt the lump just off the right hip joint. It was about 2.5cm large when first imaged with MRI. 5 months later it was still 2.5cm. When it was surgically removed, it was about 4cm long. A resection was done and it was about the size of my palm.I was told by my sarcoma team that there is no effective chemo. So, right or wrong, I was spared with chemo and only treated only with radiation. Hope it works for me.Glad to know you are in remission. Keep up the spirit. The world is a nice place to be in.qksand  Qksand Tue, 08 Apr 2008 00:00:00 GMT I had my anniversary examination and all results were negative (good).They will dropped the CT and MRI scans for the next exam. That's good news.The hip joint is still very stiff and I have stretch it often. Neverthless, I can walk and move about with only a hint of problem.    Qksand Mon, 04 Aug 2008 00:00:00 GMT