1. < Sarcoma

Leiomyosarcoma vs pelvic masses and getting a diagnosis

Posted by franklin592262 @franklin592262, Apr 17 12:05pm

Hello, I am here trying to find as much information as possible about pelvic masses... particularly lieomyosarcomas. My oldest daughter just turned 24. She's always had rough menstrual cycles, recently she started having pelvic pain, bladder pressure, bowel issues and rectum pains....then she had groin pain followed by soft swelling in her leg, close to her knee. Her primary MD suspected the leg swelling might be a lymphnode, as it was tender and red. He started her on antibiotics and scheduled an ultrasound. The antibiotics took care of the swelling. The US showed her uterus as unremarkable with large complex pelvic mass... 11 cm... differentials were endiometrioma, cystadenoma or cystsacarcinoma.... please forgive any misspelling here.... the report recommendated a CT for better view because visualization was suboptimal. Her blood work for cancer markers was good. She received the results of her CT yesterday.... all other organs are clear, lungs, liver, etc...bowels within normal limits, etc.... no lymph node involvement....but now this radiologists is saying " worrisome for liemyosarcoma". She has an appointment with her gyno monday. I'm just looking for info on this rare cancer. I'm a little confused about her uterus being unremarkable... I was under the impression the uterus was enlarged with this cancer. I'm also unfamiliar with the term " worrisome ".... I've always seen "suspicious" used in these situations, what does worrisome mean exactly? Any info would be deeply appreciated. Thank you

Interested in more discussions like this? Go to the Sarcoma Support Group.

ctflyr | @ctflyr | Apr 17 1:31pm

Hello...my Wife self-discovered an abdominal mass that was eventually diagnosed as rLMS...retroperitoneal leiomyosarcoma. She had a recommeded CT scan which confirmed size and location, and was referred to a gynecological oncologist. While a regular gynecologist visit may begin the process, I'm sure she'll need to see a gynecological oncologist for confirmation and possible surgical options. There are a number of websites that provide info and a starting point. Try Googling "leiomyosarcoma" to get you started. There's also info here on the Mayo Sarcoma site as well as the general Mayo clinic site. Early detection and treatment options will be your best path now. Best of luck to you and your Daughter. It's overwhelming for sure, but there is help, hope and support out there. ❤️

REPLY
1 reply
franklin592262 | @franklin592262 | Apr 17 2:06pm

Thank you so much for your reply. I've already searched the closest Mayo center to us. I suspect the gyno will send her to a oncologist. My current aggravation comes from the ambiguity of the radiologist wording. I had a cancer scare myself years ago.... mine turned out fine....but, I had to have numerous scans... CT, MRI, PET, etc. So I'm familiar with the process.... I've NEVER seen the term " worrisome"...a Google search of radiologist terminology doesn't help.... one source says "worrisome" is less concerning that "suspicious" another source says it depends on the radiologist. This inconsistency should not be permitted... is your Physician supposed to be a mind reader? I just wish more clear terms had been used. It's frustrating! I hope your wife is doing well... Thank you for your time and support!

REPLY
1 reply
franklin592262 | @franklin592262 | Apr 17 2:10pm
In reply to @ctflyr "Hello...my Wife self-discovered an abdominal mass that was eventually diagnosed as rLMS...retroperitoneal leiomyosarcoma. She had a..." + (show)
@ctflyr

Hello...my Wife self-discovered an abdominal mass that was eventually diagnosed as rLMS...retroperitoneal leiomyosarcoma. She had a recommeded CT scan which confirmed size and location, and was referred to a gynecological oncologist. While a regular gynecologist visit may begin the process, I'm sure she'll need to see a gynecological oncologist for confirmation and possible surgical options. There are a number of websites that provide info and a starting point. Try Googling "leiomyosarcoma" to get you started. There's also info here on the Mayo Sarcoma site as well as the general Mayo clinic site. Early detection and treatment options will be your best path now. Best of luck to you and your Daughter. It's overwhelming for sure, but there is help, hope and support out there. ❤️

Jump to this post

I accidentally posted my reply to you to myself and now can't delete or repost it.... It's in the thread. Sorry

REPLY
ctflyr | @ctflyr | Apr 17 3:30pm
In reply to @franklin592262 "Thank you so much for your reply. I've already searched the closest Mayo center to us...." + (show)
@franklin592262

Thank you so much for your reply. I've already searched the closest Mayo center to us. I suspect the gyno will send her to a oncologist. My current aggravation comes from the ambiguity of the radiologist wording. I had a cancer scare myself years ago.... mine turned out fine....but, I had to have numerous scans... CT, MRI, PET, etc. So I'm familiar with the process.... I've NEVER seen the term " worrisome"...a Google search of radiologist terminology doesn't help.... one source says "worrisome" is less concerning that "suspicious" another source says it depends on the radiologist. This inconsistency should not be permitted... is your Physician supposed to be a mind reader? I just wish more clear terms had been used. It's frustrating! I hope your wife is doing well... Thank you for your time and support!

Jump to this post

Hi...it would seem that both ambiguous and definitive wording will encourage further investigation. Yes, while "worrisome" has many interpretations, all would lead to the same point....further investigation. Beyond "normal" or "unremarkable" findings, there are paths to take. Knowledge and infomation is power! Best wishes on the road ahead!! 💪🌞

REPLY
westerncanuck | @westerncanuck | Apr 21 3:13pm

Having gone through something similar . The radiologist is unable to make a proper diagnosis with only an ultra sound. I had several and the ultra sound only indicated that something growing or is not typical. Due to the age of your daighter, the fibroid size and aggravating symptoms she is having , I believe the radiologist is just making sure it isn't minimized to " just a fibroid" . An MRI or CT scan will provide more definitive information and it's critical that she is seen by a gyno oncologist. Until the mass is actually removed you can't really know what it is. In Regards to her uterus looking normal I believe it's to indicate that the tumor isn't part of her uterus... My final thought is there is a lot of urgency if it is a Leiomyosarcoma, particularly if it is fast growing .. mine went from 10 to 15 cm in less than 3 months . In the final week before they removed everything I was on morphine, unable to walk or get up without assistance. You will have to be strong advocates. Best wishes

REPLY
1 reply
franklin592262 | @franklin592262 | Apr 24 12:10pm
In reply to @westerncanuck "Having gone through something similar . The radiologist is unable to make a proper diagnosis with..." + (show)
@westerncanuck

Having gone through something similar . The radiologist is unable to make a proper diagnosis with only an ultra sound. I had several and the ultra sound only indicated that something growing or is not typical. Due to the age of your daighter, the fibroid size and aggravating symptoms she is having , I believe the radiologist is just making sure it isn't minimized to " just a fibroid" . An MRI or CT scan will provide more definitive information and it's critical that she is seen by a gyno oncologist. Until the mass is actually removed you can't really know what it is. In Regards to her uterus looking normal I believe it's to indicate that the tumor isn't part of her uterus... My final thought is there is a lot of urgency if it is a Leiomyosarcoma, particularly if it is fast growing .. mine went from 10 to 15 cm in less than 3 months . In the final week before they removed everything I was on morphine, unable to walk or get up without assistance. You will have to be strong advocates. Best wishes

Jump to this post

Thank you for your reply... She has since been seen again and is scheduled for surgery. She had an ultrasound and CT scan... her physicians feel that this isn't going to be a Lieomyosarcoma due to some lacking characteristics, but since it can't completely be ruled out, they are proceeding cautiously, with a surgery to remove the mass whole and biopsy it. I was told that ultrasound is a more accurate way to view tissue... CT scans are more for checking surrounding areas for mestatasising that could point to cancer, but CT scans can't differentiate tissues, fluids, mucuses, etc. So, essentially any complex mass can mimic a sarcoma and radiologist are trained to point out worse case scenarios.... Physicians apparently see this wording a lot. I hope everything is going well for you now. I appreciate the support I've received here. I'll update her progress. Have a wonderful day!

REPLY
1 reply
beehappy | @beehappy | Apr 27 12:35pm

Hoping that whether it's LMS or something else the surgery goes well and gets it all.

REPLY
1 reply
jeshaw6801 | @jeshaw6801 | Apr 28 12:35pm
In reply to @beehappy "Hoping that whether it's LMS or something else the surgery goes well and gets it all." + (show)
@beehappy

Hoping that whether it's LMS or something else the surgery goes well and gets it all.

Jump to this post

Hoping you get some clarity on the what and where. I myself get frustrated with the radiologist waxing and waning. My oncologist referred to it as their poetry. But the reality is CT scan and MRT scans have there drawbacks especially when there are other issues going on. Mine was the lack of clarity with liver mets showing when I have fatty liver too. So frustrating.

REPLY
mrahaman | @mrahaman | Apr 29 10:31am
In reply to @franklin592262 "Thank you for your reply... She has since been seen again and is scheduled for surgery...." + (show)
@franklin592262

Thank you for your reply... She has since been seen again and is scheduled for surgery. She had an ultrasound and CT scan... her physicians feel that this isn't going to be a Lieomyosarcoma due to some lacking characteristics, but since it can't completely be ruled out, they are proceeding cautiously, with a surgery to remove the mass whole and biopsy it. I was told that ultrasound is a more accurate way to view tissue... CT scans are more for checking surrounding areas for mestatasising that could point to cancer, but CT scans can't differentiate tissues, fluids, mucuses, etc. So, essentially any complex mass can mimic a sarcoma and radiologist are trained to point out worse case scenarios.... Physicians apparently see this wording a lot. I hope everything is going well for you now. I appreciate the support I've received here. I'll update her progress. Have a wonderful day!

Jump to this post

Hoping and praying for successful surgery! I am hoping they find out exactly what it is, through biopsies this should tell you, scans are good to see, but cannot diagnose it. May you and your daughter have good support, loving care and receive comfort from supportive services. Best wishes for you both!!!!

REPLY
Please sign in or register to post a reply.