Diagnosed with sarcoma? Let's share

Hello @boston2006,

As a parent, I can only imagine the strength you must need to be by your daughter's side, and to see your child go through this. I'm so glad you've joined this group. I'm also tagging @truk182 who has written about being diagnosed with low-grade myofibroblastic sarcoma on the tongue.

@boston2006, could you share a few more details about your daughter? How old is she? How is she coping with the amputation? We look forward to getting to know you and your daughter better, and I wish you the very best.

@kanaazpereira we have had many good offers from many family and friends but have not needed to utilize them because our children are old enough to care for themselves and each other. My daughter who is the youngest has stayed with friends/cousins to distract and comfort her. Family, friends and co-workers have been wonderful bringing us many meals. It doesn't get any easier, my first round of treatment- I was in the hospital and unable to attend my daughter's Christmas concert. It was live-streamed to Facebook, and I was so happy to be able to watch. My second oldest son had a concert a week after my surgery (I still had an indwelling catheter and was in significant pain.) I told him I was not going to make it to his concert and he down played it saying they had just started practicing the songs and they weren't very good at them. Luckily my oldest son decided to go to the concert and video record it for me. The first song on the recording featured him playing a solo with his saxophone. He was so sweet to try to protect my feelings. All of the kids help out around the house and if I need anything they are usually more than happy to help. It is usually me that has a hard time with things, the kids don't do things how I would- like folding towels/clothes or sweeping the floor. I am trying to let go of this but it's hard.
I am a nurse and miss work a lot- I became a nurse to take care of others, not to be taken care of. At least it gives me something to talk to the nurses about when I'm in the hospital.

@zaruhi I know the situations are different but crazy coincidence, I ended up in the ER on November 6, 2017 because of the kidney pain caused by my tumor that was found to be Ewing's Sarcoma (It took about 3 weeks for a definitive diagnosis). How are you doing? I have been getting alternating chemo treatments every 2 weeks, and had surgery after round 7, then 4 weeks off for recovery and will be starting round 8 tomorrow. I found that the odd treatments are harder on me (VCD, vancomycin, cyclophosphamine, and doxorubicin) I have ended up back in the hospital due to neutropenic fever and had to have blood transfusions because of my low hemoglobin each time. I hope your treatments are going well and would be glad to hear from someone in similar circumstances. I am only getting chemotherapy and surgery(done last month), radiation was ruled out because my tumor was undetectable on CT after only 3 rounds of chemo.

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

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?

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.

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.

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!

@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/

@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