I typed my cancer into the Medscape search engine and found a long article that just about makes me want to throw up, or cry, or both. I can't process it enough to be able to write about it, so here are some snippets. I need to go lie down now next to my napping husband and try not to think the worst.
Soft tissue sarcomas are rare, with approximately 8,600 new cases diagnosed annually in the United States -- less than 1% of all newly diagnosed malignancies. ... The rarity of retroperitoneal sarcomas, combined with the vast array of histologic subtypes, has complicated our understanding of these tumors and impeded the development of effective therapies.
Approximately half of retroperitoneal sarcomas are high-grade tumors.
Tumor size has not been identified as a predictor of survival since virtually all retroperitoneal sarcomas are larger than 5 cm at presentation. Tumor grade has been reported as a significant factor in some studies, with the weight of evidence supporting shorter recurrence-free and overall survival for patients with high-grade tumors.
Sarcomas that arise in the retroperitoneum most commonly present as an abdominal mass, often without other symptoms. ... In most cases, retroperitoneal sarcomas smaller than 5 cm are rarely seen since they usually are not noted by the patient until they are larger in size. When symptoms are present, they relate to the mass effect of the tumor or to local invasion. Early satiety, gastrointestinal obstruction or bleeding, lower extremity swelling, or pain are among the first symptoms leading to the discovery of a retroperitoneal sarcoma.
Retroperitoneal soft tissue sarcomas present challenges that distinguish them from the more common soft tissue sarcomas of the extremities. ... While the most common site of first recurrence for patients with extremity sarcomas is a distant site, patients with retroperitoneal sarcomas are more likely to develop recurrences within the abdominal cavity. The overall survival for patients with extremity sarcomas is superior to that of patients with retroperitoneal sarcomas. ... Local failure continues to occur beyond 5 and 10 years following resection, leading some to estimate that the long-term recurrence rate for resectable retroperitoneal sarcomas exceeds 70%.
As with primary sarcomas of the extremities, surgery is the treatment standard for retroperitoneal sarcomas. ... In most reports, complete excision is achieved less than 70% of the time, with local recurrence occurring in approximately half of patients undergoing complete resection. ... A retroperitoneal mass should not be surgically treated unless the surgeon is prepared for the magnitude of the resection that may be required.
Many studies have shown that a significant number of patients experience prolonged disease-free survival when all grossly evident recurrent disease can be resected. The addition of chemotherapy or radiation in the treatment of locally recurrent disease remains the subject of debate.
Following resection of one recurrence, subsequent recurrences have progressively diminishing chances of being successfully resected.
Compared with patients with extremity soft tissue sarcomas, those with retroperitoneal sarcomas have a greater tendency for local recurrence and disseminated disease throughout the abdomen. Potter et al reported that 80% of recurrences occur within 5 years.
Conclusions
The evaluation and treatment of retroperitoneal soft tissue sarcomas remain challenging. The most important factor in the long-term success in the treatment of primary tumors is complete surgical resection. It is important that patients with these tumors be evaluated and treated at centers with multidisciplinary treatment planning and expertise in treating these rare tumors. These centers also can invest time and resources into investigations of novel therapies and have access to clinical trials. Local recurrence remains a difficult problem, with increased associated morbidity and psychological stress for affected patients. We hope that with improved education, early referral of patients with retroperitoneal soft tissue tumors will become the norm, and patients will derive the benefits of multidisciplinary evaluation and treatment of their disease.
— "Retroperitoneal Sarcomas," by T. Christopher Windham, MD; Peter W. T. Pisters, MD, from Cancer Control: Journal of the Moffitt Cancer Center, posted 02/28/2005
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12 comments:
OH sweetie, I can't even imagine how you feel right now. I have hope, and faith, that the doctor succeeded in total removal, and that you will continue your life uninterrupted. I have you in my thoughts and prayers. You WILL be ok.
Oh Emilie, I wish I could be with you right now to give you a big hug! I can't imagine how you must be feeling either. Please remember that I'm here for you, 24/7, just a phone call away, and you are always in my thoughts and prayers.
That said, after reading the excerpts from the Medscape article in your post, I said a quick prayer thanking God that you live near one of the best medical centers in the country, have an excellent doctor, and will be checked for recurrences on a regular basis. Nothing is for certain in an imperfect world, but those things give me a real basis for hope that you'll live to hold your grandchildren, sweetie.
Hi Emilie, I just stumbled across your blog. I'm a fellow sarcoma survivor. You sure have been through a lot! Are you still waiting for your scan results? Those are some scary times.
It's been four years since my diagnosis, and I had a completely different kind of sarcoma. I am one of those people who had to research everything right away. In fact, I knew what I had before they told me. LOL We all deal with these things at our own pace in our own way. In general, I believe that knowledge is power, but it can be pretty frightening too. I hope you won't find yourself full of worry - we both know life is too short for that! Plus, you seem like the kind of person who will handle whatever life throws at you!
Anyway, I just wanted to wish you the best. Your family is precious. :-)
PS Would you like me to come along with you to your appointments on the 18th? and good for you for making them, too--I know it wasn't easy.
Hugs. That is a lot to process. I'm not sure I even know what some of those words mean, but Barbara is right about you being geographically in a good place. You seem spiritually, emotionally and mentally in a good place, too. Did I tell you my friend Pauline says that "Everything will be OK in the end. If it isn't, it's not the end." I really believe you will get through this and emerge stronger on the other side. Love from Wyo.
Emilie,
Interesting how they talk about how "rare" it is. They always say that - every cancer article I read talks about how "rare" the cancer is. Thrilling for you, I'm sure.
Interesting, also, how it brushes over the idea of "psychological stress" somewhere near the end of the article. As if "psychological stress" is some minor, secondary effect of having a sarcoma.
Sometimes I wonder if these articles are even written by humans.
Mary, it was nice of you to post! Good luck with everything!
- Susanne
PS I'll pray for you on the 18th, and it looks like Mom will be in town too.
Em, I know you are going to be okay. Hang in there, sweetie. Many thoughts and prayers.
Emilie, I can imagine how you feel right now - it's a scary place to read this information. I too believe that knowledge is power, but I also believe in my heart that you are getting treated and monitored at the best possible place. I have complete faith in your doctors and your surgeon that they were, and will continue to be, successful.
Cancer sucks, there is no way around it. I know you can do this - and know that I am here for you if you need anything at all.
One bit of advice - walk outside to get to the buildings from the parking ramp. The tunnel ups my anxiety 10 fold when I have to go in for scans or checkups. I'm not sure why, but walking outside with all of the students helps.
Emilie, when you wrote me the perky little note this morning, I had no idea this was in the back (or front) of your mind. I'll keep your good health on the top of my prayer list. God has you in his hands, of course, so there's a plan.
My 2 1/2 year old has retroperitoneal sarcoma (stage 3, 3 Rhabdomyosarcoma w/anaplasia), incomplete resection was done May 23, 2008. I know this is hard. RPS doesn't have enough treatment options. I also have searched the web for hours and hours each night (that is how I found your site). I can't find any kids that have it in this site. I joined ACOR's Rhabdo-kids room, nothing, I joined L-Sarc hoping to find someone there...nothing. It happens so infrequently there aren't even enough people to make good studies to improve survival.
I am sorry! Hang in there!
My 2 1/2 year old has retroperitoneal sarcoma (stage 3, 3 Rhabdomyosarcoma w/anaplasia), incomplete resection was done May 23, 2008. I know this is hard. RPS doesn't have enough treatment options. I also have searched the web for hours and hours each night (that is how I found your site). I can't find any kids that have it in this site. I joined ACOR's Rhabdo-kids room, nothing, I joined L-Sarc hoping to find someone there...nothing. It happens so infrequently there aren't even enough people to make good studies to improve survival.
I am sorry! Hang in there!
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