Retroperitoneal Sarcoma

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

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.

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

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-sarco
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!

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

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,
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

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

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

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.