Colleen Young, Connect Director
@colleenyoung
@colleenyoung
Posts: 6629
Joined: Jul 23, 2014
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?
jeffk
@jeffk
@jeffk
Posts: 28
Joined: Apr 21, 2017
@deborahe Similar to JeffK, I was diagnosed with a laryngeal cancer: Cricoid Chondrosarcoma. I was diagnosed in Dec 2013 and immediately scheduled for a total laryngectomy. After doing a lot of research on this rare cancer, I found studies published by Dr Jan Kasperbauer at Mayo Rochester and sought a second opinion from him. I had two conservative “debulking” surgeries in Dec 2013 and July 2016 to reduce the tumor size and retain functionality of voice, breathing, eating and drinking. With tumor regrowth after the second debulking procedure, it was decided that more extensive surgery was needed to remove the tumor and structurally support my airway. I had that surgery April 4, 2017 and am progressing through recovery. I had a temporary tracheostomy for 2 months. My case is very similar to Jeff K’s and I am very thankful to have had his advice and support through my surgery and recovery. Our surgeons chose different methods to address our situations, but both have been successful.
I am also happy to help or listen.
Deb
Hello Deb, this past Saturday, February 17th was the one year anniversary of having my trach removed. Truly a celebratory day, however it was definitely overshadowed by our grandson's church/school fund raising pancake breakfast. I hope that your speech therapy sessions are having the desired outcome. Sounds like the walking should also help with your breathing. Wishing you continued success on the journey to redefining the new normal as they call it!
Liked by Teresa, Volunteer Mentor
Biceto
@biceto
@biceto
Posts: 6
Joined: Jul 09, 2017
Wondering if you are aware of any treatment or research programs Mayo maybe Involved in for this rare form of cancer, Sarcomatoid Carcinoma. Or for that matter, any success patients may have had with treatment, and which of your staff maybe involved! Not for myself but for a contact in the UK.
Thank you.
Teresa, Volunteer Mentor
@hopeful33250
@hopeful33250
Posts: 7094
Joined: Mar 28, 2016
@biceto Wondering if you are aware of any treatment or research programs Mayo maybe Involved in for this rare form of cancer, Sarcomatoid Carcinoma. Or for that matter, any success patients may have had with treatment, and which of your staff maybe involved! Not for myself but for a contact in the UK.
Thank you.
Hello @biceto
I appreciate your concern for your friend in the UK. It is good to have advocates when you facing serious illnesses, especially those that are rare. Here is some general information from Mayo Clinic, https://www.mayoclinic.org/diseases-conditions/sarcoma/care-at-mayo-clinic/mac-20351051
Until some other Members join this conversation, please share as you are comfortable doing so, some of your friend's history with this rare form of cancer. Is this a new diagnosis? Any treatment plans in place currently?
I look forward to hearing from you.
Teresa
Colleen Young, Connect Director
@colleenyoung
@colleenyoung
Posts: 6629
Joined: Jul 23, 2014
@biceto Wondering if you are aware of any treatment or research programs Mayo maybe Involved in for this rare form of cancer, Sarcomatoid Carcinoma. Or for that matter, any success patients may have had with treatment, and which of your staff maybe involved! Not for myself but for a contact in the UK.
Thank you.
From the National Cancer Institute:
sarcomatoid carcinoma https://www.cancer.gov/publications/dictionaries/cancer-terms/def/sarcomatoid-carcinoma
"is a type of cancer that looks like a mixture of carcinoma (cancer that begins in the skin or in tissues that line or cover internal organs in the body) and sarcoma (cancer of the bone, cartilage, fat, muscle, blood vessels, or other connective or supportive tissue). The sarcoma-like cells are often spindle cells. Under a microscope, spindle cells look long and slender."
Biceto, sarcomatoid carcinoma may appear in different parts of the body. Do you know what type of sarcomatoid carcinoma your friend has? Lung, larynx?
Biceto
@biceto
@biceto
Posts: 6
Joined: Jul 09, 2017
He is having surgery today UK time. Axilla back chest shoulder. More than 6 sites of concern. Late stages as several previous unsuccessful surgeries and new areas of concern arisen this time.
Colleen Young, Connect Director
@colleenyoung
@colleenyoung
Posts: 6629
Joined: Jul 23, 2014
@biceto He is having surgery today UK time. Axilla back chest shoulder. More than 6 sites of concern. Late stages as several previous unsuccessful surgeries and new areas of concern arisen this time.
Hi Biceto, just thinking about you and your friend in the UK. Hoping for the best.
Liked by Lisa Lucier, Connect Moderator
jeffk
@jeffk
@jeffk
Posts: 28
Joined: Apr 21, 2017
@deborahe Similar to JeffK, I was diagnosed with a laryngeal cancer: Cricoid Chondrosarcoma. I was diagnosed in Dec 2013 and immediately scheduled for a total laryngectomy. After doing a lot of research on this rare cancer, I found studies published by Dr Jan Kasperbauer at Mayo Rochester and sought a second opinion from him. I had two conservative “debulking” surgeries in Dec 2013 and July 2016 to reduce the tumor size and retain functionality of voice, breathing, eating and drinking. With tumor regrowth after the second debulking procedure, it was decided that more extensive surgery was needed to remove the tumor and structurally support my airway. I had that surgery April 4, 2017 and am progressing through recovery. I had a temporary tracheostomy for 2 months. My case is very similar to Jeff K’s and I am very thankful to have had his advice and support through my surgery and recovery. Our surgeons chose different methods to address our situations, but both have been successful.
I am also happy to help or listen.
Deb
Deb, Hope this finds you well and look forward to learn how your recovery continues to progress. On April 12th Mayo published an article concerning my journey and I wanted to share it with you. The following link will take you to the sight; the article is titled “Retaining His Voice With Radical Treatment” https://sharing.mayoclinic.org
Liked by Colleen Young, Connect Director
deborahe
@deborahe
@deborahe
Posts: 26
Joined: Feb 25, 2017
@deborahe Similar to JeffK, I was diagnosed with a laryngeal cancer: Cricoid Chondrosarcoma. I was diagnosed in Dec 2013 and immediately scheduled for a total laryngectomy. After doing a lot of research on this rare cancer, I found studies published by Dr Jan Kasperbauer at Mayo Rochester and sought a second opinion from him. I had two conservative “debulking” surgeries in Dec 2013 and July 2016 to reduce the tumor size and retain functionality of voice, breathing, eating and drinking. With tumor regrowth after the second debulking procedure, it was decided that more extensive surgery was needed to remove the tumor and structurally support my airway. I had that surgery April 4, 2017 and am progressing through recovery. I had a temporary tracheostomy for 2 months. My case is very similar to Jeff K’s and I am very thankful to have had his advice and support through my surgery and recovery. Our surgeons chose different methods to address our situations, but both have been successful.
I am also happy to help or listen.
Deb
Hi Jeff, Thanks for letting me know. It has truly been a remarkable journey. I I plan to share it with my family and friends, and wish you and your family all the best. I'm so happy for your health and your great attitude. Life is sweet! PS: It's nice to have a face to put with the name!
Colleen Young, Connect Director
@colleenyoung
@colleenyoung
Posts: 6629
Joined: Jul 23, 2014
@deborahe Similar to JeffK, I was diagnosed with a laryngeal cancer: Cricoid Chondrosarcoma. I was diagnosed in Dec 2013 and immediately scheduled for a total laryngectomy. After doing a lot of research on this rare cancer, I found studies published by Dr Jan Kasperbauer at Mayo Rochester and sought a second opinion from him. I had two conservative “debulking” surgeries in Dec 2013 and July 2016 to reduce the tumor size and retain functionality of voice, breathing, eating and drinking. With tumor regrowth after the second debulking procedure, it was decided that more extensive surgery was needed to remove the tumor and structurally support my airway. I had that surgery April 4, 2017 and am progressing through recovery. I had a temporary tracheostomy for 2 months. My case is very similar to Jeff K’s and I am very thankful to have had his advice and support through my surgery and recovery. Our surgeons chose different methods to address our situations, but both have been successful.
I am also happy to help or listen.
Deb
Here's the direct link to @jeffk's article: https://sharing.mayoclinic.org/2018/04/12/retaining-his-voice-with-radical-treatment/
Thanks for sharing it with us, Jeff!
Colleen Young, Connect Director
@colleenyoung
@colleenyoung
Posts: 6629
Joined: Jul 23, 2014
I'd like to let you know about an upcoming event at Mayo Clinic on July 14: Leiomyosarcoma Patient Education Symposium 2018.
You can find out more about the event here: https://ce.mayo.edu/hematology-and-oncology/content/leiomyosarcoma-patient-education-symposium-2018#group-tabs-node-course-default1
Dlady
@damlady2
@damlady2
Posts: 4
Joined: Aug 17, 2017
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?
Liked by Kanaaz Pereira, Connect Moderator
I was diagnosed with sarcomatiod urotheial carcinoma cancer in 2013. Now 4 1/2 years cancer free!
kristennursepatient
@kristennursepatient
@kristennursepatient
Posts: 10
Joined: May 20, 2018
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).
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.
Liked by Kanaaz Pereira, Connect Moderator
@fredscape
In reply to @fredscape
I am definitely getting a combination Of Lartruvo and Doxorubicin. I am being treated at the Hematology and Oncology Center in Charleston, South Carolina by Dr. David Ellison. Have you heard any thing about the Lartruvo? I think I may be the second person they’ve tried it on here. They tell me she is ten years older than me (I’m 65) and has done well. Anyway, just groping for information.