Diagnosed with sarcoma? Let's share

Hello. I have leiomyosarcoma, asymptomatic, as is often the case, until Stage 4. Had diagnosis, radical hysterectomy, removal of sigmoid colon in Feb 16, 2018 Dehiscence (stitches came open) 3/1. No followup care offerred so went to a Sarcoma Center, which has been SO much better, though my body is still struggling to cooperate with the medical plan. Started chemo with just a finger-tip size piece of granulation tissue remaining in healing wound. Unfortunately, that was enough to cause sepsis which was followed by mucocytis. Currently back home (which is lovely) with instructions and IV antibiotics for healing the wound completely. To go back to Sarcoma Center 6/11 for chemo restart. Long saga already, eh? Everyone has one, right?
Grateful for husband (43rd anniversary today) who takes very good care of me, 2 of 3 children very supportive (every family has one), lots of good friends, relationship with Divine that helps my daily life. And sarcoma still sucks. Ive already had a recurrence (before this month off). Not happy about my prognosis but it will be what it will be. I feel good today and it is gorgeous here today. Some days I do okay. Some days I am just sad. Busy trying to close my business this week. Sad. Lots of loss but enjoying what I can. Appreciate everyone's sharing and learn something from every post.

@jeffk. @deborahe. Love hearing the good news. Getting back to your workouts took lots of persistence. Very encouraging & motivating. Thanks for sharing. Ventibug

@bennyhill38. Feeling for you and your wife. My husband and I are experiencing so many of the same type of dilemmas and feelings as we deal with my sarcoma. Currently on "a break" from chemo after 1 cycle to heal a wound infection remaining from original surgery after it caused sepsis. This 3 weeks, my body is fighting the infection. Noone is fighting the cancer. Ventibug

@wendy76. I had my initial eval and radical surgery for soft tissue sarcoma in my community but I am so grateful to have been led (research, prayer, talking to people with more experience) to have gone to a sarcoma center for further care. They are SO much more knowledgeable about disease process, treatment options, and the lived experience of sarcoma. Of course they are! The oncologists see 2 full days of clinic patients each, every week, and there are 20 oncologists in the sarcoma center. There are 2 inpatient units just for sarcoma. They have offered me so much more. I wish you and your family the best for you and trust you will know what that is for you and yours. Ventibug

@bennyhill38, I'm sorry to hear about the loss of your wife. I'm glad you returned to share with us on Connect. There are some questions that we'll never know the answers to. I invite you to take part in this discussion in the Caregiver's group:
- Loss and Grief in Caregiving https://connect.mayoclinic.org/discussion/loss-and-grief-in-caregiving/

I am very upset that she lost her battle to cancer on January 6th 2018 she passed away. So I ask myself what went wrong? Why did my loving wife passed just a year later just 4 days before her birthday. I feel that more could have been done and wasn't. I believe they should have not done the surgery on her leg but did chemo and radiation first to shrink the tumor. However I am not sure what to think anymore. We later found out that they missed the diagnosis in 2008. If they would have taken care of it then maybe she would be alive today who knows. I am telling you all beware of having surgery first. I truly believe once they did the surgery it spread to her lungs. Also the tumor just grew back where they did the surgery. My advice is get plenty of second opinions I think your best option is do the chemo / radiation before the surgery so it doesn't have a chance to spread. It was a very sad situation for my wife that passed. The suffering she had to go through and the stupid politics we also had to go through. I think personally the swept her under the carpet because She was on disability and I am a disabled veteran. We don't have 500k for pay someone so guess what your dead. It really sad this country went from patient care to patient service. You only survive now on how much money you have not because it the moral right thing to do is try to save her life. God bless all of you and I only wish you the best. One thing it did do is bring me closer to GOD!

Thank you for the info. I am very hopeful that after the biopsy my Orthopedic surgeon can provide me with a solution for treatment. The main concern right now is the effect on my right shoulder arm nerves. I have had tingling and limitations with movement. I know I am being treated with the best liposarcoma Doctors.

Hello @zazu,

Thank you so much for sharing and joining this group. Wishing you the very best for tomorrow's surgery; we'd love to hear back from you, as and when you are able to post about your progress. The Connect community will be here for you, waiting to share their insights, which I'm certain, will help you in making those decisions.

Hello @jonimclark,

Welcome to Connect. I'm so sorry to hear your dad has been diagnosed with such a rare cancer. I'm tagging @ecdhope who's talked about Erdheim Chester disease – a histiocytic neoplasm. You can read the discussion here:
https://connect.mayoclinic.org/discussion/ecd/
@jonimclark, could you tell us a bit more about this sarcoma? What tissues or organs are involved? What symptoms is your father managing?

It sounds like you have such a wonderful family, @kristennursepatient. I wish you all success.