Diagnosed with sarcoma? Let's share

Because sarcomas are rare, I would like to start a conversation to help connect people living with sarcoma or caring for someone with sarcoma.

As you know, sarcoma is the general term for a broad group of cancers that begin in the bones and in the connective or soft tissues (soft tissue sarcoma). There are many different types and sub-types of sarcomas, for example: angiosarcoma, chondrosarcoma, Ewing’s sarcoma, fibrosarcoma, gastrointestinal stromal tumor (GIST), Kaposi’s sarcoma, leiomyosarcoma, liposarcoma, malignant peripheral nerve sheath tumor, osteosarcoma, pleomorphic sarcoma, rhabdomyosarcoma, synovial sarcoma and more.

Let’s get to know one another. Why not start by introducing yourself? What type of sarcoma have you been diagnosed with?

Liked by Dee

My dad has been diagnosed with histiocytic sarcoma. Since the doctors say thay there have been only a few hubdred reported cases, the only option they have given is aggressive chemo. Has anyone else on this page had this type of cancer?

I was diagnosed last year with a radiation induced pleomorphic sarcoma from breast cancer treatment 18 years prior. 2 biopsies and two surgical excisions were done. They removed 2 ribs, stage 2 with no treatment available. Just monitoring my lung with several 4mm and less nodules. Now I’ve been diagnosed with triple negative breast cancer in the same breast. I’m having bilateral mastectomy tomorrow then chemo in a few weeks. The oncologist is considering adding a drug to the chemo that has been shown to cover the sarcoma but only about 5% effectiveness. I have lots of decisions to make. I’m going to both Kellogg cancer center (with tumor board consult at Mayo) and now my breast surgery is at Northwestern downtown Chicago

@damlady2

I have had 12 surgeries for removal of my lipsarcoma since 1988. I have also had radiation and a cyroablation. I will be having a biopsy of what appears to a return again of my disease. I have also had lung cancer with removal via VATs. All but 3 surgeries have been at Rochester Mayo. The recent surgeries have been a concern because they are close to the bronchial plexus as demonstrated again on the most recent. Has anyone had multiple returns of lipo sarcoma like this after surgery and radiation?

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Hello @damlady2,

Welcome to Connect. Thank you for sharing your history with liposarcoma. I'm tagging @udderplace, who also started this discussion to talk about chemo treatment with Gemzar:
–Liposarcoma: Starting treatment with Gemzar https://connect.mayoclinic.org/discussion/information-on-liposarcoma/

I'm also tagging @fredscape @godsgotthis @kathythornjohnson who also have a diagnosis of liposarcoma to join the conversation.

Last year, the U.S. Food and Drug Administration (FDA) approved two chemotherapy drugs known as "orphan drugs"to treat liposarcomas – eribulin mesylate (Halavan) trabectedin (Yondelis) https://www.medicalnewstoday.com/articles/318771.php
Orphan drugs are treatments for rare medical disorders that have less than 10,000 diagnosed cases a year; the two drugs are used
to treat liposarcomas that have spread or metastasized, or that cannot be surgically removed and have failed to respond to previous chemotherapy regimens. @damlady2, are you familiar with these treatments?

@djj1954

I was diagnosed with sarcomatiod urotheial carcinoma cancer in 2013. Now 4 1/2 years cancer free!

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Welcome to Connect, @djj1954, and thanks for joining with such great news! We are so happy for you! Fellow member @biceto had posted some questions about sarcomatiod carcinoma in this discussion, too.

@djj1954, would you share a bit more about yourself? Was the carcinoma detected early? Did you undergo any chemotherapy or radiation?

@kristennursepatient

Hi, I'm Kristen, 36, I was diagnosed with Ewing's sarcoma November 2017. My tumor had pressed against one of my ureters blocking the drainage from my kidney (causing pain similar to a kidney stone) and was very small when it was found. I've been through 7 rounds of chemo and have had surgery to remove the portion of the ureter that had the tumor. The tumor was unable to be seen on CT after just the 3rd round of chemo,, so things are going well. I'm being treated by the sarcoma group at Mayo in Rochester, MN. Each of my chemos requires a hospital stay of 3-6days which is hard on this mom of 4 (ages 11-20).

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Welcome @kristennursepatient. I'm sorry to hear about your diagnosis, and so glad you've joined Connect, and that things are going well. @suzanneb @zaruhi have also talked about Ewing's sarcoma, and I hope they return to share their insights with you.
As a mum of 3, I can only imagine how stressful it must be to leave and put everything on hold while you stay in the hospital. Do you have family or friends who help with the kids?

@boston2006

My daughter was diagnosed with myofibroblastic sarcoma in 2006. Amputation at mayo. Have never met another patient with same cancer. Would love to connect with anyone who may have had same cancer.

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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.

@kristennursepatient

Hi, I'm Kristen, 36, I was diagnosed with Ewing's sarcoma November 2017. My tumor had pressed against one of my ureters blocking the drainage from my kidney (causing pain similar to a kidney stone) and was very small when it was found. I've been through 7 rounds of chemo and have had surgery to remove the portion of the ureter that had the tumor. The tumor was unable to be seen on CT after just the 3rd round of chemo,, so things are going well. I'm being treated by the sarcoma group at Mayo in Rochester, MN. Each of my chemos requires a hospital stay of 3-6days which is hard on this mom of 4 (ages 11-20).

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@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

Hello my name is Zaruhi and I am a 33 year old female. I went into the ER on November 6th 2017 because I was having difficulty walking. I was told I have a schwannoma and needed the tumor taken out. It was in my spine and blocking off the majority of my mobility. On November 7th they took the tumor out. It was supposed to be benign. The doctors couldn’t conclude the biopsy of the tumor so it was sent to Stanford. The pathology found and confirmed that I have Ewing Sarcoma. It is in my spinal cord sac, really really really rare. I’m supposed to get both chemo and radiation. I’m really afraid. Sorry I don’t know what else to say.

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@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.

@kristennursepatient

Hi, I'm Kristen, 36, I was diagnosed with Ewing's sarcoma November 2017. My tumor had pressed against one of my ureters blocking the drainage from my kidney (causing pain similar to a kidney stone) and was very small when it was found. I've been through 7 rounds of chemo and have had surgery to remove the portion of the ureter that had the tumor. The tumor was unable to be seen on CT after just the 3rd round of chemo,, so things are going well. I'm being treated by the sarcoma group at Mayo in Rochester, MN. Each of my chemos requires a hospital stay of 3-6days which is hard on this mom of 4 (ages 11-20).

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

@jonimclark

My dad has been diagnosed with histiocytic sarcoma. Since the doctors say thay there have been only a few hubdred reported cases, the only option they have given is aggressive chemo. Has anyone else on this page had this type of cancer?

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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.

@damlady2

I have had 12 surgeries for removal of my lipsarcoma since 1988. I have also had radiation and a cyroablation. I will be having a biopsy of what appears to a return again of my disease. I have also had lung cancer with removal via VATs. All but 3 surgeries have been at Rochester Mayo. The recent surgeries have been a concern because they are close to the bronchial plexus as demonstrated again on the most recent. Has anyone had multiple returns of lipo sarcoma like this after surgery and radiation?

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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!

Liked by Dee

@bennyhill38

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!

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@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

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