CancerCompass message board discussion started by Luckyloo on 6/27/2005 http://www.cancercompass.com/message-board/message/all,2333,0.htm Mon, 01 Dec 2008 00:00:00 GMT Mon, 01 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ On Thursday, June 23rd, I found out I have cancer after a surgery to remove what drs. thought was only a cyst! Now they say I may lose my leg but won't know anything till friday, July 1st. I am so scared! I am a newly vegetarian, drink only water but man is this a lot to handle! It is a sarcoma and that is all I know! Someone please help my worries and nervousness! Thank-you Luckyloo Mon, 27 Jun 2005 00:00:00 GMT Dear Geri, First, take a deep breath through your nose...hold it...now slowly exhale through your mouth. Second, know that being scared is a perfectly normal reaction. Third, know that there are a lot of us out here to help you in any way we can. I was diagnosed with Stage II-B cervical cancer in 2003. Did the treatments (chemo, radiation and internal implants) and it came back in a lymph node in 2004. Here I went again with the treatments...I just had my first year check-up last Friday and the doctors say everything looks okay. But of course we have to wait for all the test results. When it came back all I could think of was "this crap is going to kill me". But thus far I'm still kicking. When you meet with your doctor on July 1st take a list of questions with you. The only silly question is the one you don't ask!! Be involved in your treatment plan and always ask WHY if you don't understand. But one of the most important things is attitude...try to keep a positive one as much as possible. It's okay to be scared, angry, unhappy and all those emotions but deep down this is a fight and you're in charge of this army. My thoughts, prayers and hugs are with you and your family. Please keep me posted as you progress through this trying time. Best always, Terry Terry W. Tue, 28 Jun 2005 00:00:00 GMT Dearest Terry, I was so happy to read your message and to know someone cared out there! I will do my best to think positively and I will also pray for you and your family too! Thank-you for caring and for all the good advice! Much aloha, Geri Luckyloo Tue, 28 Jun 2005 00:00:00 GMT Great advice! Did we remember to tell Geri to get copies of ALL her records wherever she goes? Every CT scan, MRI, biopsy slide, etc. This will speed up the process if she goes to a specialist. I had 6 months of records and films to get and now I'm ready, Freddie. My life will be brief but what matters to me is quality so I have decisions to make. Chemo would have to buy me quite a bit of time for me to go through it again when the odds for ME are really bad. I'm terminal and not a candidate for any more thigh surgery or effective radiation and lungs are inoperable -- too many nodules. So I'm sunk and I'm mad as hell. My particular "trap" is that I have no quality of life if I say yes or no to treatment. Chemo might buy me a little time but I'll be miserable to the end. Without it, I'll be miserable not being able to breathe. I'd sorta planned to have a better choice. Like quitting chemo if it wasn't helping since I'm terminal anyway, to live much more comfortably, I thought. Wrong! I've decided if chemo can work and give me a year, I'll do it. For 6 months I won't. Don't want to be alive and wishing I was dead. I'd rather be comfortable and have a shorter life. What a choice. I have a t-shirt that says, "Cancer Sucks" and that's how I feel. I'm not the type to go to any length to live a few months longer. If I hadn't been the captain of my health care ship, I would've been dead by now. Local Docs knew nothing about sarcoma or didn't care. Had to beg for every test and they delayed at every turn. May surgery didn't left dirty margins in thigh. I went to Barnes in St. Louis, a horrible sarcoma surgeon. I'll be going to the University of Michigan sarcoma center in July to be given the name of a chemo drug and get straight answers. Geri, a specialist is someone who sees 100+ sarcoma patients a year, okay? Good luck to you, sweetie. Listen to Terry. Judi Purple Roses Thu, 30 Jun 2005 00:00:00 GMT Hello Judi...God Bless You and where in the world did you find your T-shirt? I really really want one to wear because I agree totally Cancer does suck big time!! I'm glad you decided to go some place else for assistance. You know what they say...help is just around the corner. Let me know how U of M works out for you and keep the troops mustered for all battles to come. Lots of prayers and hugs coming your way from Texas. Hang tough and please stay in touch. Best always, Terry Terry W. Thu, 30 Jun 2005 00:00:00 GMT Geri, I just checked message board 7/5 to see your note. I am 10 year survivor of sarcoma which was thought to be a cyst in my ankle. After surgeries for a tissue graft and 6 weeks radiation, I was back at work. 3 years ago, I had another battle.Your feelings are quite normal.Good nutrition plan is helpful, faith and prayer for me was and is vital in the war as Terry so aptly names it. Think of yourself as a cancer warrior, not a victim. You are in my thoughts and prayers. Elizabeth Elizabeth H. Wed, 06 Jul 2005 00:00:00 GMT Terry, Hang in there. I was diagnosed with liposarcoma of the right arm in 1999. I thought it was over! I was sent to the University of Iowa for surgery. He removed the tumors (I had 3) and margins. The margins came back clear. Several options were open for me--radiation, or chemo or nothing. After almost 2 months of living in terror that I would not see my children graduate, I decided on nothing. There is not enough out there about liposarcoma. It is not a common cancer. I was advised by my surgeon to go without any furter treatment. I am almost to the 6 year mark, cancer free. Hang in there!There is HOPE! Armymom Sun, 10 Jul 2005 00:00:00 GMT I was reading you message an was concerned to see how you made out after being diagnosed. Did they amputate you leg after removing what they thought was a cyst? My Best Friend is going through kind of the same thing. She was diagnosed about 4 monthss ago with sarcoma in her leg also. She has started her Chemo and I was wondering if I should share some of the information that I read on line with her. I don't want her to give up hope though. What I have read on a weekly basis may make her change her mind. Niema Wed, 21 Sep 2005 00:00:00 GMT Hello, I have since had another surgery to remove any remaining cancerous cells. My sarcoma was a low grade (thank the good Lord) so I don't have to have chemo! I am going for my 13th radiation treatment today (30 all together)! My knee is feeling stiff and it is sore. I walk with my walker and still need physical therapy but I am determined to walk again! I can't walk far with the walker so I also have a wheelchair. My cancer wasn't in my lymph nodes and the pathology showed no more cancerous cells. I spoke with a dr. at the University of Colorado Medical Center who told me that all of the above was the good news, the bad news, I will need to be monitored longer than the usual 5 years because sarcoma (at least the type I have) is a slow growing cancer. So, MRI's and CT scans every 3 months for the first 2 years. Usually it is just the first year. I have gotten so much strength from all of my friends who are praying for me and trust in the Lord for my healing! I am thinking positive and feel like I am more in control now! I will pray for you and for your friend who is probably very scared right now! Don't ever give up! Geri Luckyloo Fri, 23 Sep 2005 00:00:00 GMT DEAR JUDI, My name is Teresa. My husband has just been diagnosed with Sarcoma ( upper right tricept) in the beginning of July. weve been going to doctors and specialists and nothing has happened yet. His Oncologist forgot to send the info. to the other doctors that we are supposed to see. It is fo frustating going to the plastic surgen and asking why we are hear today because she has no clue. I am also thinking about getting ahold of someone at U of M. My husband told me to wait on consulting any one else. I am the only one that has been reasurching. I can not find anything that is promising. I am scared for him, he seems like its not bothering him. I am just tired of waiting. Tis thing is 18inches long and 23 inches around. Sincerely, Teresa H. Toothpaste Wed, 02 Aug 2006 00:00:00 GMT first of all..HUGS..your life is about to change...I too had cancer in my leg <ankle/foot> i had to have an amputation,and this may sound strange to you, but it was the best thingfor me, I realize God does bless us , even if it sounds like cancer..Thru my situation I have learned so many things about life and I show others and children that cancer isnt a death sentence..and losing a leg doesnt mean life is over..I wanted the younger people to know and understand all of it..Now when they see someone who is bald from chemo or missing a leg ..they dont stare cause they look strange they stare then go to then and ask questions ...It changes everything for the ill person...I was scared too guess I still am esp when it returned a yr later.But this is your time to grow and know you will be in my prayers lastangel4one Fri, 10 Aug 2007 00:00:00 GMT Thanks for your reply!  A lot has happend since I first wrote that letter in 2005!  I had 2 surgeries and radiation since it was a low grade sarcoma.  In July of this year I went back for tests again and so far so good, my leg has no sign of cancer.  My orthopedic surgeon also made me take c.t. scan of my chest, pelvis and abdomen.  They found 5 small spots on my lungs but since that first time of finding them, about 1 year ago, there is only 1 spot left!  Praise God!  They have now found a spot on my uterus and some suspicious looking dark spots on my breast, so, now I have to have more tests to rule out cancer for these!  I am doing quite well, I can walk, with the help of physical therapy, I have to wear a support sock on my leg because my lymph system was 'messed up' with all the surgeries, but other than that I am okay!  I will pray for you too!  I trust in God and believe all of his promises and we just need prayer and faith!!!!  Thank-you so much for responding to my letter!  It really does mean a lot to me!  Many blessing to you and yours! Luckyloo Sat, 11 Aug 2007 00:00:00 GMT Hello, you responded to my message in 2005 and I was wondering how you were doing?  Geri Luckyloo Sat, 11 Aug 2007 00:00:00 GMT Judi, you responded to my message in 2005 and I was wondering how you were doing?  Geri Luckyloo Sat, 11 Aug 2007 00:00:00 GMT  On 7/6/2005 Elizabeth H. wrote:Geri, I just checked message board 7/5 to see your note. I am 10 year survivor of sarcoma which was thought to be a cyst in my ankle. After surgeries for a tissue graft and 6 weeks radiation, I was back at work. 3 years ago, I had another battle.Your feelings are quite normal.Good nutrition plan is helpful, faith and prayer for me was and is vital in the war as Terry so aptly names it. Think of yourself as a cancer warrior, not a victim. You are in my thoughts and prayers. ElizabethElizabeth, you responded to my message in 2005 and I was just wondering how you were doing?  Geri Luckyloo Sat, 11 Aug 2007 00:00:00 GMT  On 9/21/2005 Niema wrote:I was reading you message an was concerned to see how you made out after being diagnosed. Did they amputate you leg after removing what they thought was a cyst? My Best Friend is going through kind of the same thing. She was diagnosed about 4 monthss ago with sarcoma in her leg also. She has started her Chemo and I was wondering if I should share some of the information that I read on line with her. I don't want her to give up hope though. What I have read on a weekly basis may make her change her mind.Hi, I was wondering since your friend had her cancer in 2005, how is she doing?  Geri Luckyloo Sat, 11 Aug 2007 00:00:00 GMT  On 8/2/2006 Toothpaste wrote:DEAR JUDI, My name is Teresa. My husband has just been diagnosed with Sarcoma ( upper right tricept) in the beginning of July. weve been going to doctors and specialists and nothing has happened yet. His Oncologist forgot to send the info. to the other doctors that we are supposed to see. It is fo frustating going to the plastic surgen and asking why we are hear today because she has no clue. I am also thinking about getting ahold of someone at U of M. My husband told me to wait on consulting any one else. I am the only one that has been reasurching. I can not find anything that is promising. I am scared for him, he seems like its not bothering him. I am just tired of waiting. Tis thing is 18inches long and 23 inches around. Sincerely, Teresa H.Hello, I was wondering how you and your husband are doing since this posting?  Geri Luckyloo Sat, 11 Aug 2007 00:00:00 GMT 6  yrs ago I had a Dermatofibro Sarcoma Protruberans in my left thigh.  I first went to a dermotoligst who did a biopys.  When the results came back he said is wasnt cancerous.  Sent me to a plastic surgeon to remove this tumor.  Nor did i know at the time what stage it was in. Or given any treatment after surgey.  Now i find out that it was cancerous.I wished i would of known then what i know now about sarcomas.   Because now i have been dianosed again with a soft tissue sarcoma in my right lung.  I was told that according to the biopys that it is a recurance of what i had in my thigh.  I had my slides from my thigh and lung biopsy sent to sloan kettering. They believe that is what caused the lung cancer.  Where i will be going for a consalitation  on the 7th of september. To see what kind of treatment can be done. I will find out what stage im at etc. I happen to go to my obgyn for a full check up and the dr does every thing when it comes to a check up.  Im so upset over this.  First of all the dermotoligst should of sent me to a cancer specilist not a plastic surgeon. Second Im a single parent with teenage kids and no place to leave them  If i happen to find out im terminal not to mention my social life took a nose dive. You tell someone you have cancer and right away they have you on your death bed.  Its bad enough i have another thing to deal with that i didnt want.  They dont need to make it any worse by running the other way. Nippatina Mon, 03 Sep 2007 00:00:00 GMT  On 9/3/2007 Nippatina wrote:6  yrs ago I had a Dermatofibro Sarcoma Protruberans in my left thigh.  I first went to a dermotoligst who did a biopys.  When the results came back he said is wasnt cancerous.  Sent me to a plastic surgeon to remove this tumor.  Nor did i know at the time what stage it was in. Or given any treatment after surgey.  Now i find out that it was cancerous.I wished i would of known then what i know now about sarcomas.   Because now i have been dianosed again with a soft tissue sarcoma in my right lung.  I was told that according to the biopys that it is a recurance of what i had in my thigh.  I had my slides from my thigh and lung biopsy sent to sloan kettering. They believe that is what caused the lung cancer.  Where i will be going for a consalitation  on the 7th of september. To see what kind of treatment can be done. I will find out what stage im at etc. I happen to go to my obgyn for a full check up and the dr does every thing when it comes to a check up.  Im so upset over this.  First of all the dermotoligst should of sent me to a cancer specilist not a plastic surgeon. Second Im a single parent with teenage kids and no place to leave them  If i happen to find out im terminal not to mention my social life took a nose dive. You tell someone you have cancer and right away they have you on your death bed.  Its bad enough i have another thing to deal with that i didnt want.  They dont need to make it any worse by running the other way. Hi!  Your scenario sounds just like mine.  5 years ago, I had a small hard spot removed from my back.  Last year, I visited the same surgeon and he said I had a mass back there that I couldn't detect.  All we could see was a funny-looking area where the first surgery had been.  It hurt when I leaned back on it.   They said it wasn't Cancer.  I had a total excision surgery for this Aug. 2006.  They took wide margins clear down to the muscle.  I had a wound vac for two months and a second attempt at a skin graft. (The first one failed -- which I still say was stupid to try with a huge wound like that!)  So I have had to endure two skin graft donor sites and let me tell you, I would not wish that on my worst enemy!  But that's another part of the story.4 months later, Spring, 2007, I felt two lumps in my left armpit.  Guess what?  Same type of cells.  Surgeons removed them and I was pronounced clear!  4 months later, again, I have multiple lumps in the same armpit and NOW I decide to get to an Oncologist and have been to University of Chicago to see their Oncology Specialist.  A treatment plan is being devised as soon as they finally decide what the lumps are (I have already had biopsies and a PET scan).  This Dr. says it is Sarcoma and that Dermatofibroma Protruberans is a form of Cancer.  So we need to treat it that way!  So I can totally relate!  I should have been referred to the Specialist to begin with.     sewinggrannie Thu, 04 Oct 2007 00:00:00 GMT Hi- I just found out today that my pap smear came back and said I have cancer.  They don't know where exactly yet as the full results have not came back.  I am so scared.  I have been in menopause for around 5 years, and all of a sudden I started bleeding five days ago.  I am still bleeding some still.  I have no insurance, and I don't know what to do.  I see an ob/gyn this coming Monday.  I don't want to die. heyjude4900 Fri, 10 Oct 2008 00:00:00 GMT Your message sounds a lot like mine in 2005 when I was first diagnosed with sarcoma.  Cancer doesn't have to be a death sentence!  I believe, no matter what the drs. say, that natural medicine, like herbs and even vitamins, work!  If you decide to have chemo (remember it is your decision and not the drs., you are paying them, they work for you, you decide) take antioxidants, they will enhance the chemo and do things like not losing your hair, help keep your appetite.  Look up vitamin D3, not D2, milk has d2.  Don't eat any sugar!  Cancer loves sugar!  No white sugar, flour, rice, no sugar!  check out spirulina and chlorella on the web, very good for cancer and getting rid of toxins!  Check out AHCC, COq10,tumeric, ginger, don't drink sugar substitutes!  No diet stuff!  If researching your type of cancer is scary, then don't do it!  I always got more nervous hearing about my 'chances for survival' like the websites all say!  Drs. don't even know and they just guess!  Be very positive!  Every time a negative thought comes your way, say no and reverse it with a positive one!  Being spiritual is a Biggie!  I could not have made it without God!  He is in control!  I will pray for you and I sure hope this helps!  You are in control!  Remember, NO SUGAR!much aloha, Geri Luckyloo Fri, 10 Oct 2008 00:00:00 GMT