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Leiomyosarcoma: What can I expect now?
Diagnosed with Leiomyosarcoma back in August 2021. had surgery to remove mass in upper right groin that same month. July 29th second round of CT scans showed nodules on Right upper lung - had surgery to remove those on Sept 15.
What can I expect now ? - meeting with Medical oncologist next week .
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I was diagnosed with uterine leiomyosarcoma this past fall. I had a total radical hysterectomy. Appendectomy, partial myomectomy, at Dearborn Corewell/Beaumont here in Michigan. The Surgeon was able to get"95". He knew he left cells behind he couldn't access. I switched treatment centers to Karmanos Flint location to be closer to home. I have felt comfortable and respected their ability to work together and obvious competence. The Surgeon in the place upset me, though...when he said a week and a half ago that going in surgically for the rest would not be a viable alternative, in his opinion. My morbid obesity complicates being able to visualize when he would get in there, he worries about my ability to tolerate another major surgery, etc. I was crushed because I have stuck in my mind the only way to be cured of this rare, aggressive cancer, is to get it all out of there. I start radiation this week. Today they just take pictures, to ascertain the positioning fits the treatment plan the radiologist developed. I had the tattoo markers put on a couple of weeks ago. After thirty radiation treatments, the general plan is to go on to chemo. I feel lost on a fog of uncertainty. But determined to do the best I can to get well. My mobility is poor, past spinal issues, fibromyalgia, osteoarthritis. I am frustrated I can't exercise more and get stronger. I will be 65 February 25th. I do have a supportive fiancé, a lot of emotional support pets, household cleaning help, and many supportive folks following my journey on FB I have goals and desires for after treatment, like to help animals and people, I used to teach and was a therapist...much to yet do and enjoy.
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3 ReactionsLove your positive outlook. Love at the end of your post how you want to help animals and people. Keep focusing on that positive. You got this and you have a wonderful fiancee supporting you. I would love to add you on Facebook. My name there is
Susan Harrington Ray
I will be praying God's complete healing over you.
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1 ReactionHello @lanewright - I'm a bit the same . I had a 5cm leiomyosarcoma on a kidney removed in May 23. and it has spread to my lungs but appears stable for the time being. By all accounts, its just a matter of time. But I notice the replies don't realy address your questions - or have I missed something?
My son had surgery followed by radiation but a year later his monophasic synovial leiomyosarcoma appeared in his right axilla and left lung. Chemotherapy was started last week.
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1 ReactionWhere was the site of your son's original tumor? How is he doing with the chemo? He, and you, are in my thoughts and prayers.
His original tumor was behind his right axilla.
I wonder if the leiomyosarcoma 's found near the extremities vary from those found in the uterus/abdominal cavity. 🙏
He has only had one 3 day round of chemo so far. Doing fine, no nausea, just a little burning with urination which has resolved. Round 2 next week.
@johnelph, welcome. For the spread to your lungs, is it being monitored - active surveillance - or will you have to have additional treatment?
Thank you, Susan. I will look you up on Facebook . I spoke with the doctor today. He is in agreement there is no harm in seeking another opinion while I maintain with them there (seeking meds they may not have, other treatment options, surgeon's who may be willing to attempt, clinical trials, or just confirmation that all that can be done is being done). I was not thrilled the surgeon I spoke to was not wanting to do surgery to get it all out. Dr "Sam" today said the surgeon told him he just couldn't see stressing my body when he was pretty positive he couldn't get it all out. Dr "Sam" put it an order for a second opinion consult for Uof M(Michigan), so if I don't hear from them within a week, call for an appointment. I can get my teeth cleaned, my back fusion x-rayed checked, while having radiation. My last radiation treatment is March 20th. Dr Sam will see me back on the office the following Monday. Plans for starting chemo start then. I feel a slight amount of skin discomfort; applying the aquaphor and colloidal silver cream once or twice a day. Little twinge in my abdomen and back. Could be scar tissue moving, nerves regenerating, they said. My last spinal fusion was this past June; I know nerves take a long time to regenerate. As for the person who said my questions do not seem to have been answered...true. it is hard, I am seeing, to compare cases with a type of cancer that occurs in 1 out of 100,000 people. Any comparisons can help with the battle ahead of me ,however.