CancerCompass message board discussion started by Rarebreedz on 5/31/2005 http://www.cancercompass.com/message-board/message/all,2163,0.htm Sat, 06 Sep 2008 00:00:00 GMT Sat, 06 Sep 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Hello to all. I'm not sure if my posting is anything other than venting? Maybe somebody has advice? Shared this experience? Or just has an ear or a prayer to offer? I'm scared and confused and have always found writing a therapeutic avenue so where better to post my cancer fears then here?! Last AUG. my husband was having severe back pain, along with night sweats and fatigue (he has since added a constant cough to his list of symptoms, although he claims the coughing is just a nervous condition:(. His dr. ordered an MRI(last AUG) and diagnosed the back pain as inflammed discs. He gave him an anti-depressant for the fatigue and the sweating was never treated. After trying muscle relaxers and therapy finally the pain got so bad that he wanted to try an epidural type injection in his back to manage his agonizing, continual pain. The anesthesiologist that was to administer the epidural noticed the huge lump that lay parrallel to his backbone. We didn't fully understand his concern as we thought the swelling was an outward sign from the swollen, inflamed discs? Our regular doctor was called in to have a look. They cancelled the epidural and sent us for a battery of immediate tests(MRI, X-RAYS and an ULTRASOUND)after the tests were read we were referred to a neurologist who immediately referred us to a surgical oncologist. Imagine our surprise after a diagnosis of inflamed discs just a few months prior!? The oncologist read his previous tests and scheduled a surgical biopsy the following week. Four hours and 12 sutures later we were informed that it was a sarcoma. We have a follow up appointment in two more days but I have already been trying to get the pathologists report for an exact identification as well as the grade of tumor. (YES! I've been doing my homework in the recent days since the surgery) I've yet to read any good prognosis just based on the two facts that I know to be true. LOCATION(along the leftside of his spine in his lower back) and SIZE, according to the ultrasound (13cmLx7cmWx5cmTHICK) Could a tumor have grown this large, this fast in the 8-9 months since the first MRI? Or could the doctors have missed it back then? The coughing causes me concern that it may be in his lungs too:( Other possible symptoms are a low-grade fever off and on. He urinates much more frequently. The urinalysis detected blood in his urine but no bacteria. Obviously I am very scared, open to advice, suggestions or just someone that may want to share their own situation or fears. I've already noticed, in less than a week after diagnosis, that friends and family seem to think if you don't discuss (dwell is their words) that it isn't as bad as it sounds or maybe it will just go away? I on the otherhand have a need to know and arm myself with knowledge. I don't accept defeat lightly, especially when the threat is my husband. Any responses are welcome. I feel as if I may implode if I don't get it out. Thanks for listening, if nothing else comes from my post at least I was allowed a release. Peace and bless you all. Connie Rarebreedz Tue, 31 May 2005 00:00:00 GMT Connie, Do you know if your husband has leiomyosarcoma or another type of sarcoma? There is an online support group at www.acor.org. Look for support groups. Once you get the pathology report, I think you should go to a Sarcoma Center for a second opinion on treatment. I have a list of LMS doctors, by state, with phone numbers, at www.leiomyosarcoma.net under "FIND a Sarcoma Doctor". These 2 sites should help you find the correct treatment. I had a 3rd metastasis to my retroperitonal area and it was surgically excised. Mine was originally in the uterus, spread to my lungs. I am a long-term survivor of over 20 years. If your husband has high grade, it needs to be treated aggressively. Hope this helps. Best of luck. Foodmaven Tue, 31 May 2005 00:00:00 GMT Thank you so much for replying. We got the pathology report yesterday. It is a HIGH grade, STAGE III LEIOMYOSARCOMA. The tumor is huge, 13cmLx7cmWx5cmThick. Our mission now is getting him into MD Anderson. All prayers are appreciated and it's given me hope to hear that you have handled this demon for 20 years! Best of luck to you as well and thank you for the support. Kindest Regards, Connie Rarebreedz Fri, 03 Jun 2005 00:00:00 GMT Connie, You need to join the leiomyosarcoma acor listserve for more information and your husband will meet others like himself. http://listserv.acor.org/SCRIPTS/WA-ACOR.EXESUBED1=l-m-sarcoma&A=1 OR www.acor.org click on support lists-leiomyosarcoma. Fill out the form and join the list. There are over 600 members now. Also another website with much information is: http://www.leiomyosarcoma.info/ I have been reclassified as having endometrial stromal sarcoma as of 5 years ago, but it is treated the same as LMS(short for leiomyo) when it is high grade. I have been lucky not to have had any radiation or chemo with my 3 recurrences and a total of 16 LMS/ESS tumors. I have been on aromatase inhibitors for my type of uterine sarcoma. Unfortunately, it is a breast cancer drug that works on uterine cancer and it won't help your husband. I am glad the list of sarcoma doctors was able to help you decide to get a second opinion. Best of luck. Slay the dragon! Foodmaven Fri, 03 Jun 2005 00:00:00 GMT I have joined the recommended list, thank-you. The information is overwhelming but very interesting. I am sure as I become more familiar the language, abbreviations, etc won't sound like a foreign language. DAVE had a CT/PET scan yesterday to see if it had spread. We hear the results tomorrow and I am very scared and anxious. The first diagnosis was brutal enough, I'm not sure how I'll cope if it's any other locations? After our results tomorrow all tests, reports etc.. will be FE-EX to MDA. Hopefully our apt. will follow shortly? His tumor appears to be growing 1 1/2 cm a month and we are rapidly wasting precious time, as I see it. He's constantly fatigued. Battling the pain simply wears him out. He goes to bed right after he gets home at night, between 6-7:30. Tonight he didn't even have dinner:( Has diet effected you at all? Are you eating known cancer fighting foods? Have you heard about apricot kernals and grapes having a very positive effect at beating or preventing cancer? Shitake mushrooms having a tumor reducing effect? Etc..Any opinions would be appreciated. Thank you for the correspondence. It makes me feel a little less isolated. Kindest Regards, Connie Rarebreedz Tue, 07 Jun 2005 00:00:00 GMT Connie & Dave, By now I hope that you are at MD Anderson and undergoing treatment. Let me give you some good news. I found out that I had a large mass in my abdominal area. The mass was as large as a soccer ball. It had grown and now occupied most of my right side area. The MRI and CT scans indicated that it might had also invaded the liver, spleem and bowel ducks. The biopsy revealed stage III & IV cells throughout the tumor. It had completely engulfed my right kidney. After radiation at a local hospital (coordinated with MD Anderson) I went to Houston for surgery on July 1, 2002. My doctor (Dr. Barry Feig) removed an 11-lb mass and my right kidney. This was a shock to us because I am not that large (5'10" & 175 lbs) The operation took over 9 hours. I was truly blessed during all of this. However due to the tumor being around the vina cava, some tissue had to be left. I have now just passed my third year. The hospital experience was better than I could have ever expected. For the first 2 years I returned to Houston ever 90 days and this last year moved to every 6 months. This is a very good sign. I tell you all of this to give you hope. As I mentioned above, God has blessed me by giving the doctors at MD Anderson the knowledge and experience in treating this rare cancer. My wife and I will keep you in our prayers. PLease let me know if I can answer any questions that you might have about my experience thus far. My God pour out His blessing upon you both and give you the strength to face this each and everyday. J. Allen John a Tue, 05 Jul 2005 00:00:00 GMT John, Thank-you for the reply. May god continually bless you. I'm afraid that "THE BIG GUY" may have alternative plans for my husband? The sarcoma is an aggressive, high grade, stage IV that was only diagnosed on 5/25/05. Since then the sarcoma has literally erupted thru the weakened incision site where the biopsy had been performed, so not only is the cancer rapidly engulfing my husband internally, it also is growing externally out of a golfball sized hole in his back. The only treatment now is just to control pain and keep him as comfortable as possible. A guestimate of maybe 3-6 months was given today:( My heart is simply shattering, this has all happened so rapidly. The anxiety is unexplainable. Six weeks is not a very long time to try to process such devastation. My continued prayers for you and all others suffering with this horrific disease. Peace and god bless. Connie Rarebreedz Wed, 06 Jul 2005 00:00:00 GMT Were you able to get to MD Anderson?? Did they attempt any radiation to either stop or reduce the size of the tumor? My wife and I feel your pain as we were facing the same outlook. However with God's help we started to manage our own treatment and would not settle for the wait and see approach. We will keep you and your husband in our prayers....JAS & SCS John a Fri, 08 Jul 2005 00:00:00 GMT I'm afraid the only help that could be offered my husband was in the form of radiation. The radiation would've simply been performed in hopes of possible shrinkage for pain control:( We have declined the radiation for a couple of reasons 1)when you're living on borrowed time he wants to make every second worthwhile with his family and friends, not hospital visits that are 35 miles away for five days out of the week when there is no hope for the treatment to save or prolong his life and a minimal chance at it assisting in pain control. Our second reason is that, as I mentioned, DAVES sarcoma is literally growing outside his body as well as inside. It is a huge, raw, horrific mess that grows so fast and aggressively that it ruptured the freshly healed but still weakened 7" incision from the biopsy. The sarcoma is now visible growing out the gaping hole in his back. I try to remain optimistic and hope that if we are forced to clean and dress this awful sight that at least let it offer some pain relief by releasing some pressure. Now that you have a clearer picture of the actual wound/sarcoma itself and the weakened tissue that surrounds it, just imagine the burning side-effects of radiation and what they could do to DAVE considering his already bizarre condition? Chemo could be as bad or worse if he were to get nausea:( A mere trip to the restroom can cause uncontrollable bleeding. I had him spend the night at the hospital this past w/e. I was/am terrified that he is/was bleeding to death. They said his WBC count is out of this world and gave him some IV antibiotics and a shot of VIT. K to help coagulate his blood. I have accepted that they are limited in what can be done to help him. The erupting sarcoma is almost more than I can handle. I have to make sure there are no mirrors for my husband to read my facial expressions when cleaning and dressing it. It would scare me to death to see a sight like that normally, however when it's your best-friend, lover, husband etc... you can learn to do things that normally would've caused a person to just pass out. All of this has happened in a very short time (since 05/25/05) I am muttling thru minute by minute, hour by hour and day by day. I have no way begun to absorb a 3-6 month prognosis, let alone CANCER! My husbands background was high blood pressure and while we tediously selected and sacrificed to keep him healthy, who'd have guessed this viscious monster was digging in to write him a death sentence?:( I suppose it'll take years to even comprehend but right now I'll utilize my remaining minutes, hours and days reiterating the facts that I couldn't be more happy or love him anymore:( We have known each other our whole lives and been together the past five years. In all that time, I am 40 and he is 46, we have NEVER yet had an argument even tho anyone would tell you we are both spunky by nature. It's a love that is predicted to only last a shorttime but something so special that I'm sure many people go thru life having never been lucky enough to experience. I am so thankful and grateful for what we have and had but my selfish side that wants him here in the flesh, with me, is getting closer to a nervous breakdown as the days pass by. I truly appreciate you replying, praying, understanding but mainly listening. Sometimes it's somewhat therapeutic just to let it out. Peace to you and thanks again. May god continue to bless you and yours. Kindest Regards, Connie Rarebreedz Fri, 08 Jul 2005 00:00:00 GMT Dear John: My husband was diagnosed with a sacroma in his abdomen last May. After undergoing 4 round of chemo, 2 of ifosomide/mesna and 2 of cystplantinum/adriamycin (forgive my spellings) they performed surgery to remove the tumor. It had shrunk by about 20%. The surgery last more than 11 hours and when they removed the tumor, in order to get good margins not because of spread, they resected his vena cava, his aorta, his colon and they removed a kidney. After he recovered from surgery they repeated the same rounds of chemo followed by 6 weeks of radiation. His scan in July of this year showed recurrance, mets in his lungs and liver and they now have him on Tarceva. He's broken out in a terrible rash and is generally feeling pretty lousy. In addition, he's had cervical disc problems and has just started acupuncture (after trying everything else) and it is working. My question is a blunt one--how have you managed to stay well and what are you doing to maintain your health. My husband is only 52 years old and as you can imagine we are all devasted. In the meantime, I don't want him to suffer anymore than he already has. Do you have any information about Tarceva and sarcoma. By the way, his tumor was described as a high grade schwanoma or as a malignant peripheral nerve sheath. Any help you can give would be appreciated. Thank you. Whatavoice Thu, 08 Sep 2005 00:00:00 GMT Dear Connie, I am surfing so much - not sure which web site I found you. My sister is 41 and was diagnosed almost 1 yr ago with leiomyosarcoma. Originally was thought to be uterine fibroids. Had mets to the lungs by the time she was diagnosed. She has gone thru the Gemzar and Taxotere chemo. Has had thoracic surgery and is now getting ready for adryomyocin (sp?). I do not have 100 percent confidence in her docotors. should I ?- or should I be fighting this with every fiber of my being to get her in to MSKCC or somewhere like that. Please reply - I am feeling helpless. Thanks Karen Kratsy2 Tue, 18 Oct 2005 00:00:00 GMT Karen, You need not feel helpless with so many other that have LMS on the www.acor.org list for LMS. If you do not have confidence in her doctors, by all means, go to a sarcoma center like MSKCC. I am a patient there for almost 13 years, stage IV. I have had many surgeries but I am still here and I am a longterm survivor. Go to www.mskcc.org, pick a doctor under sarcoma. Good luck, there is much to be done. Foodmaven Tue, 18 Oct 2005 00:00:00 GMT I am not really sure how I found this message board but Im thinking Im glad I did. My mom just found out she has Retroperitoneal sarcoma. Do any readers have and info re this type sarcoma as side from the fact that it is a rare type. My mom is really scared as anyone would be when they get that kind of news. I have been searching the net for info on this and stumbled here. Thought it would be worth asking for all or any of your help. One thing that really sucks is, My mom lives in FL and I in NY. Any help anyone can offer will be appreicated. Cheryl Cheryl r Wed, 26 Oct 2005 00:00:00 GMT Connie, There are many types of sarcomas. You have to find out by getting the pathology report. If you haven't found a support group online, there are a few sarcoma groups on www.acor.org Yes, it is possible for a tumor to grow large in a short time. Low grade and high grade are treated differently. You should look for a sarcoma specialist at a sarcoma center. Here is a list of them in the US: http://tinyurl.com/7yh3w Best of luck, 24 year survivor of low grade myxoid LMS/ESS, stage IV for 12 3/4 years. There is always hope. Foodmaven Wed, 26 Oct 2005 00:00:00 GMT Apparently you overlooked my post regarding the pathology report? DAVE was diagnosed with an aggressive, high grade, stage IV LEIOMYOSARCOMA. The biopsy was 5/25/05, we were told that day it was a sarcoma. We rec.'d the pathology report the following week, on 06/02/05, when it was identified as LMS. Next came a couple more doctors and MDA ANDERSON in late JUNE/early JULY. The prognosis was given as 3-6 months. DAVE passed away, at home on 09/01/05. It's ironic that you posted today because it is just now that I have gotten a little mental strength and decided to get online and read a little. I am so happy that you have been able to control this monster. I would like to hear your specifics and will keep you in my prayers for continued success and health. We were simply blindsided with this devastating illness. DAVE was 46 when diagnosed. He only lived 3 1/2 more months and I swear he aged 10 years (at least) every month:( I miss him dearly and still have yet to process the cancer diagnosis, let alone absorb the fact that he is gone. The leaves are changing and temperatures dropping, however emotionally I am still back in MAY, when my world simply stopped. I have no words of advice or wisdom for anyone. I can only verify that life is short and nobody knows what tomorrow brings? My goal now is to try and process the past few months and possibly learn to experience some sort of living again. Right now, that seems a mere distant dream. Any suggestions to get me jumpstarted out of this fog is welcomed and appreciated. It's comparative to one of those dreams typical of running thru quicksand in slow motion:( Peace, prayers and best wishes, Connie Rarebreedz Wed, 26 Oct 2005 00:00:00 GMT Dear Connie, I am sorry I didn't read the previous messages when notified a reply came in. I am sorry for your loss. It is very hard on a caregiver. High grade is very treacherous compared to low grade LMS. I was the same age as your husband when I was diagnosed. It was uterine LMS and I had 4 recurrences and 15 tumors. I know that I have put much stress on my husband so I know how you are suffering. The pain and suffering affect both of you. Please join a bereavement support group in your area. I hear they are wonderful in getting you out of your slump. I think it would do you a lot of good. Maybe they have one on www.acor.org I think they do. Much sympathy, Ro Foodmaven Wed, 26 Oct 2005 00:00:00 GMT Dear Connie, I am sorry I didn't read the previous messages when notified a reply came in. I am sorry for your loss. It is very hard on a caregiver. High grade is very treacherous compared to low grade LMS. I was the same age as your husband when I was diagnosed. It was uterine LMS and I had 4 recurrences and 15 tumors. I know that I have put much stress on my husband so I know how you are suffering. The pain and suffering affect both of you. Please join a bereavement support group in your area. I hear they are wonderful in getting you out of your slump. I think it would do you a lot of good. Maybe they have one on www.acor.org I think they do. Much sympathy, Ro Foodmaven Wed, 26 Oct 2005 00:00:00 GMT There is no apology needed. I just felt inclined to update. I am thankful to hear anytime that someone is able to keep this horrific disease in check. My angel and I never had a fighting chance, even if it had been diagnosed sooner it was very aggressive and in a terrible location. Do you go to a sarcoma specialist? Where were your reoccurrences and did you have your tumors all removed? My dr also suggested a bereavement councelor but I have a difficult time opening up face to face with someone that hasn't earned my trust. I talk alot w/my family and friends, also occasionally on this msg. board. How is your husband coping? You are correct. The spouse feels responsible to "fix" their mates problem. You vow to take care of each other and then something like this simply ties your hands and you can only sit back and watch your partener be attacked. You feel so helpless. I even felt like I was betraying DAVE because I couldn't make it go away. I even stopped eating when DAVE did. I have lived on ENSURE or yogurt protein drinks since AUG. I simply felt guilty if I ate and he couldn't. The mind is a complex thing. I know all of the correct answers but I guess only time will help me to get turned back around. During his illness my mind and hands were kept busy caring for him, then poof it was over leaving my hands and mind idle all of a sudden. That is when the depression truly started setting in. I did get an anti-depressant(CYMBALTA) I would probably notice it IS working if I quit taking it? I still have raging, crying S**TFITS but they aren't several times a day anymore. I sometimes can make it a couple of days but just like the food, I feel guilty if I have a good day even tho I know that all of DAVES are good now:) It's just my selfish side that misses seeing/touching him:( Hopefully soon I'll learn how to handle life w/o his physical presence?Peace, love and prayers, Connie Rarebreedz Fri, 28 Oct 2005 00:00:00 GMT Connie, I think we as patients do not realize how any illness affects our spouse. We are in so much pain and suffering, we forget our mate is suffering emotionally because they feel helpless to help us. My husband handled it very well but it has taken it's toll on him as well healthwise. He walked every step of the way with me. It sounds like you did too. You have no reason to feel guilty, your husband would not want you to be feeling this way. You are grieving right now. There is no length of time for grieving. Take all the time you need to get into the swing of things again. There should be no time limit. In time, you will come around again. You will be looking for your friends, neighbors, relatives and making new acquaintances. Some people are more outgoing than others and find peace in being solitary, others seek company. It is up to you to decide how to end your emotional prison that you are in right now. When the time is right, you will know. >>>>Do you go to a sarcoma specialist? Where were your reoccurrences and did you have your tumors all removed? <<< I went to a sarcoma center, the biggest cancer center in NYC, MSKCC. I do not have a sarcoma specialist, I have someone I think knows all about what I have and has treated me with knowledge and respect. He is doing the best he can for me and does research on how to treat me. So far, it has worked. I had 3 recurrences of 4 to 5 tumors between both lungs. I had a retroperitoneal tumor(pelvic) recurrence. I had only surgery, no chemo, no radiation. I still have 4-5 tumors between both lungs and they are not growing since I took Femara even though I am off it a year and a half. I am a walking miracle as far as I am concerned. I can't explain why I am still here but whatever this drug was, it helped me along with having surgery to remove my other recurrences. I have had 15 LMS/ESS tumors to date. I guess my doctor has found a way for now for not promoting growth. If I have to, I will go back on the drug again. I have been lucky and I am grateful for all the years I have been given are a bonus for me as I have had the opportunity to grow old gracefully. I pray that there will be a cure or a proper protocol for sarcomas in the near future. Rosalie Foodmaven Sat, 29 Oct 2005 00:00:00 GMT Hi Connie, I stumbled upon your log tonight, as I am about to return home for winter break from my senior year at college. This is my first time responding to a forum, but after reading your story I wanted to share my family's with you, because your story is so similar to what we went through this summer - you are not alone in confronting this confusing, shocking, unexpecting and horrific disease. My father passed away from liposarcoma this past July 4th. It had been only three weeks since his diagnosis. I had no idea that it was possible for a seemingly healthy person to become so weak so fast. I was shocked to see so many similarities between your husband's disease and that of my fathers. (The doctors said that his condition was very rare) He too went into the hospital for back pain (he had been doing yardwork so this seemed not unordinary) and later the doctors thought it might be gall stones. They came to move me out of school for the summer a week later(June 12th), and when we returned his pain was so severe that he checked in the ER. We found out that the gall stones were actually a tumor located in the retroperenial area. After an emergency surgery to remove intestinal blockage that the tumor was causing, he was unable to recover as the cancer had already spread (to the liver, kidneys, colon, lymph nodes) and, like your husbands, was high grade and in a late stage. Like you, I am in shock - I can't believe he's gone and it's been now five months. Sometimes I feel like I should be over that "unbelieving" stage, but after reading your message I realize that maybe this is a result of how fast this disease attacks. We're all moving day by day, and it is still a struggle. (I have two brothers ages 16 and 19, I am 21) He was such a wonderful father and friend and I miss him every day. Please know that my prayers are with you. Rita612 Sat, 10 Dec 2005 00:00:00 GMT Connie, I am so sorry to hear about your husband. My husband was just diagnosed with the same cancer in January 06 and just had surgery to remove the tumor that extended from the top of his kidney into his groin and into his leg. 69 staples later and losing most of his ability to walk with his right leg the Dr. says he got it all. I am still new to this and am very scared. We just got the diagnoses tonight that it is Advanced retroperitoneal sarcoma cancer centered in the groin region primarily. He is a mess. Can you please give us some advise on what to do next? We are luckily going to one of the best oncology surgeons in the United States but we feel like the rug was pulled out beneath us. He went in last Sept 05 for back pain and the neurosurgeon was hinting that he was faking the symptoms because where they supposedly found a herniated disk would not have created the weakness in his legs. They did a disketomy in Nov 05 and his symptoms got worse afterwards. It was only because a repeat MRI of the back that we found the tumor in his stomach. Should I feel secure because the dr. said he got all of it? We will be starting Chemo and Radiation therapy soon. Like you I am trying to take care of him and praying every second. I have taken an extended leave from work and my primary goal right now is taking care of him and my kids. Since the surgery he has become bed ridden because of the inability to walk but each day we work and work and he seems to be getting a little better but this totally blew him away tonight to get this diagnosis and I can say it blindsided me. Can anybody please give me some information on this type of cancer? Thank You and God Bless, Lori Luvoffenton Fri, 24 Feb 2006 00:00:00 GMT LORI, It's late but I have to reply. I promise I'll be more alert tomorrow. I have a few questions for you first, if that's o.k.? Is your husbands a "LEIOMYOSARCOMA"? Are you seeing a sarcoma specialist? Where are you located? How old is your husband? And most important what was the tumors size? Grade? And have they done CT/PET or bone scans to check for mets? Did they say where it originated? Is it a soft tissue sarcoma? I was hoping all of my sarcoma studies would NEVER need be applied again. I am VERY sorry but please at least know that I will give you every bit of knowledge that I crammed into my little pee brain whilst WE were dying. Quite frankly, we were beat before we ever got a diagnosis but we still tried anything and everything. Hopefully we can get our heads together and at least help you and your family? My heart is breaking for you sister:( Start with praying and I'll check for your answers first thing tomorrow. Try and stay positive. Peace and health to your family, Connie Rarebreedz Sat, 25 Feb 2006 00:00:00 GMT Connie, We go to the Doctors on the 7th to find out all this information. I am going to request that I be given a copy of the pathology report. Since his incision was so long (70 staples in both incision sites) they are keeping in his staples longer than usual. His doctor is supposedly the best liver cancer and abnormal mass specialist in the United States, Dr. Mark Roh. He did reassure us that he got all of it but on the 7th he is taking Steve down from his office to start his first doses of radiontherapy and chemotherapy. Should I request a PET scan now or after the first course of therapy? We are flying blind here because there is not that much information on these types of mass or cancer. I do know that the doctor told us on the phone that even though the mass went from the top of the right kidney into the groin and down to the knee the cancer was centered primarily in the mass part that was around the groin. That did not make me feel any better after I researched testicular and penial cancer. Thank god, in a small way, that he is not able to get to the computer right now and research this, I think his spirits would plummet. Please let me know of any questions I should be asking the doctor on this important visit. And thank you for all your help. Lori Luvoffenton Wed, 01 Mar 2006 00:00:00 GMT It is early morning forgive me. He is 47. It originated on the kidney and extended over and threw his bladder, intestines, kidneys, liver, colon, urethra(they had to do extensive work on that), both intestines, the sciatic nerve, the testicals, and grew into the femeral nerve (why he can't walk now). An extensive mass. The doctor told us by the kidney was a round mass but that instead of the usual cancer traits of having branches it had what appeared to be like a snake growing from it that wrapped itself around everything in its path. I do not know the rest until his upcoming visit Tuesday. On top of all that I just lost my job because I am not able to leave him home right now by himself but as I told him right now my place is at home by his side and realistically we are going to be traveling an hour and a half each way 5 days a week for our cancer treatment and he needs me more then work does. That was a real blow on top of everything else. Again thank you for your concern and any information will gladly help. God Bless, Lori Luvoffenton Wed, 01 Mar 2006 00:00:00 GMT I am so sorry about your job but honestly, you know WHERE you belong now. Where is your doctor located? DEFINATELY request the pathology report. It gave me alot more info then the drs. It is hard for the brain to absorb everything during an office visit. The report will help you map out your questions. I don't know if it's acceptable or not but my e-mail is --- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ---- You can always reach me there if needed? I feel like I am in deja vu My husband was diagnosed early last spring at the age of 47. How long has your husband been ill, before the diagnosis? It certainly sounds aggressive:( I could literally watch DAVEs tumor grow so let's cross our fingers and pray that they truly DID get it all? "IF" it is LMS, from the research that I have done, it is prone to reoccurrence so NEVER let your guard down no matter how much he improves. I'm going to re-read your post. My mind still doesn't absorb things like it used to. Hopefully you are still online? Much peace and healing, Connie Rarebreedz Wed, 01 Mar 2006 00:00:00 GMT I would DEFINATELY want a PET or CT scan to compare progress with. Did he have one before surgery? I would want to compare pre-op, with post-op and during and after treatments. You could SEE the progress then and pose any concerns about questionable areas. LMS, for my husband, was like an out of control fire. Honestly I don't even know for sure, where all it had spread? It just happened soooo fast:( From mere behavior, I would guess it was getting to his throat, lungs and brain. From the last scan it had definately reached his adrenal gland and lungs. All of this from a mere backache that began a few months prior. How are the sutures healing? Is his mental health o.k.? Please keep me abreast. Your plight just feels VERY personal. I would LOVE to share in a victory against this beast:( Again, all my best, Connie Rarebreedz Wed, 01 Mar 2006 00:00:00 GMT My husband have liposarcoma we just found out in March of 2006 what are we fighting against please help because I can't find to muuch information on this type of cancer can you help Sheshe Sun, 23 Jul 2006 00:00:00 GMT My best friend is battling this rare cancer. The two chemos that she has received have had no effect, the cancer is still growing. I am researching alternative and integrative therapies. Does anyone have any infomation or experiences in this area. She is a patient of MD Anderson so she is in a great center for sarcomas. She is a 46 yr old and up until this time a very healthy and active person. If anyone knows some form of treatment for this cancer that has worked please let me know. Thanks, Page Page1 Sun, 05 Nov 2006 00:00:00 GMT