Leiomyosarcoma: What can I expect now?

I have Leimyosarcoma. Diagnosed in 2020. Post hysterectomy, necrosis fascitis complications, chemo, and radiation. I am told my cancer is "inoperable". I am lucky as I am doing well the 4 yrs since dx. Wondering if anyone else told "inoperable" and what follow up care they are having. I feel very abandoned and can't get answers as to what to expect.

I also have leiomyosarcoma, one year survivor. I am on two support lists on Facebook. The moderators either have leiomyosarcoma or a loved one does. The lists are extremely helpful to see how others are treated, survival, advice, etc. Most state having direct access to a sarcoma specialist is essential. The center where I am treated, Karmanos in Flint, Mi. Has a social worker who had reached out and spoken to me two or three times. Both about the emotional and psychological effects of having cancer and the burden and fear of/of your spouse and caregivers, your own anxiety, etc. They also have support groups. I see my own private therapist on video weekly as I have for some years. I am a reader and researcher by nature, and I devour every word on the subject. Not everyone wants to do this. As for the inoperable- I had a ovariohystrectomy with appendectomy and removal of most of my momentum last December. They did not get clear margins. I was stage 2b until mets were found in my lungs. That automatically states you at 4. I was terrified and down-hearted until I realized how many have survived and even thrived for years with a stage 4 diagnosis. I was deemed not a candidate for further surgery also. Sometimes the tumors are in places where they can't access, at least while also keeping us alive. I was very sick, sepsis, heart failure, pneumonia, etc after my first chemo and after a lung biopsy. I pulled through and even though I could not move, was hugely bloated with fluid, and had felt I was dying one of the days during this ordeal- when the team came in and one or two suggested hospice. I became very angry and said I want to fight. I will recover and we will try something else. They had given me 2-10 weeks. I had my great pt come out. He got me up, standing, walking, I had to do the stretching and walking homework. Back and forth in this little house. I began losing fluid and weight. My oncologist was amazed and delighted at my follow up. I had genetic testing I had been pushing for. They started me on liposomal doxyrubicin, which I did tolerate. Skipping over some stuff...I ended up with radiation to both lungs, just finished yesterday. Off the chemo, taking an oral med twice a day I just started Saturday. I am of course anxious, but hopeful. At 65, a few more years would be a gift. There are 20 year, 10 year, 5 year survivors in the groups!! Just remember- not knowing if you are religious- statistics are not the word if God; doctors are not God. Use them as a guide; and fight for yourself like hell. I hope this helps. Jill front Michigan

I also have leiomyosarcoma, one year survivor. I am on two support lists on Facebook. The moderators either have leiomyosarcoma or a loved one does. The lists are extremely helpful to see how others are treated, survival, advice, etc. Most state having direct access to a sarcoma specialist is essential. The center where I am treated, Karmanos in Flint, Mi. Has a social worker who had reached out and spoken to me two or three times. Both about the emotional and psychological effects of having cancer and the burden and fear of/of your spouse and caregivers, your own anxiety, etc. They also have support groups. I see my own private therapist on video weekly as I have for some years. I am a reader and researcher by nature, and I devour every word on the subject. Not everyone wants to do this. As for the inoperable- I had a ovariohystrectomy with appendectomy and removal of most of my momentum last December. They did not get clear margins. I was stage 2b until mets were found in my lungs. That automatically states you at 4. I was terrified and down-hearted until I realized how many have survived and even thrived for years with a stage 4 diagnosis. I was deemed not a candidate for further surgery also. Sometimes the tumors are in places where they can't access, at least while also keeping us alive. I was very sick, sepsis, heart failure, pneumonia, etc after my first chemo and after a lung biopsy. I pulled through and even though I could not move, was hugely bloated with fluid, and had felt I was dying one of the days during this ordeal- when the team came in and one or two suggested hospice. I became very angry and said I want to fight. I will recover and we will try something else. They had given me 2-10 weeks. I had my great pt come out. He got me up, standing, walking, I had to do the stretching and walking homework. Back and forth in this little house. I began losing fluid and weight. My oncologist was amazed and delighted at my follow up. I had genetic testing I had been pushing for. They started me on liposomal doxyrubicin, which I did tolerate. Skipping over some stuff...I ended up with radiation to both lungs, just finished yesterday. Off the chemo, taking an oral med twice a day I just started Saturday. I am of course anxious, but hopeful. At 65, a few more years would be a gift. There are 20 year, 10 year, 5 year survivors in the groups!! Just remember- not knowing if you are religious- statistics are not the word if God; doctors are not God. Use them as a guide; and fight for yourself like hell. I hope this helps. Jill front Michigan

My 44 year old son is on his second round of chemotherapy. He's list his hair. Now battling nausea with Zofran. He had a recurrence of a 5 mm tumor in his right axilla causing swelling, pain and compression of his radial artery causing his right hand to drop. He's much better after 2 rounds of chemotherapy. Hoping for a full recovery. Our oncologist tells us that although it's a rare cancer, 1 to 3 per million, it's very treatable with chemo.

That sounds like a greatoutcome for you, particularly compared to some of the situations on this site. I'm very encouraged by it but can you confirm that when you started chemo, did you have secondaries in your lungs? anywhere else?
And if I could, do you know the type of chemo you were given and how much did it knock you around?
Many thanks in advance.

Yes and it worked. I had it done three years ago.

Hello - I too have nodules in my lungs but may be starting chemotherapy. I am interestedin whether they tried that for you?

@kkhersh hello. I too have leiomyosarcoma and had 2 nodules removed from my right lung on 3 October. I have been told that there is not any treatment except to keep removing nodules as they appear. I'm curious what your experience has been. I really appreciate your post as I feel like I'm floundering to get answers. Enjoy your day!