Retroperitoneal Sarcoma

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

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

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

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

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

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

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

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