Retroperitoneal Sarcoma

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

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.

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

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.

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

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

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

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

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

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.