1. < Sarcoma
Moderator

Diagnosed with sarcoma? Let's share

Posted by Colleen Young, Connect Director @colleenyoung, Jun 21, 2017

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?

Interested in more discussions like this? Go to the Sarcoma Support Group.

khushi80 | @khushi80 | Oct 2, 2023
In reply to @colleenyoung "Welcome, @khushi80. I see that @johnsoncs1 has also posted about a cystosarcoma Phyllodes tumor in breast...." + (show)
@colleenyoung

Welcome, @khushi80. I see that @johnsoncs1 has also posted about a cystosarcoma Phyllodes tumor in breast. You may wish to also join this related discussion:
- Anyone diagnosed with Phyllodes tumor?
https://connect.mayoclinic.org/discussion/phyllodes/
I'm sorry to hear about the repeated recurrences and now spread to the lungs. What treatment options are available to you?

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Actually in my country they are suggesting for doxorubicin + ifosfomide chemotherapy but they are not sure if it will work or no. Some are also suggesting to do genetic testing for targeted therapy.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Oct 2, 2023
In reply to @khushi80 "Hello everyone. I am Khushi and have been operated for borderline malignant Phyllodes in the left..." + (show)
@khushi80

Hello everyone. I am Khushi and have been operated for borderline malignant Phyllodes in the left breast in 2019 (without radiation ). It reoccurred in the same area ( local recurrence ) in feb 2023 and this time it was categorised as chondrosarcoma and osteosarcoma. We again did radical mastectomy and got the entire left breast removed , this time followed by 28 session of. Radiotherapy. The current PET scans of sept 2023 are showing spread in the lungs. Wanted guidance from all of you regarding personal experiences or recommendations of the line of treatment that we should opt as this is a third recurrence. What is the latest line of treatment adopted for such a disease and how can we tackle this in the best possible way. Lots of love and strength to all going through this.

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Welcome, @khushi80. I see that @johnsoncs1 has also posted about a cystosarcoma Phyllodes tumor in breast. You may wish to also join this related discussion:
- Anyone diagnosed with Phyllodes tumor?
https://connect.mayoclinic.org/discussion/phyllodes/
I'm sorry to hear about the repeated recurrences and now spread to the lungs. What treatment options are available to you?

REPLY
1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Oct 2, 2023
In reply to @nanee1 "I have leiomyosarcoma. I have a mass on my liver. The cancer has spread. I am..." + (show)
@nanee1

I have leiomyosarcoma. I have a mass on my liver. The cancer has spread. I am in my 5th day after the chemo infusion. Pretty miserable. I don't know that I will continue the chemo. I am in my mid 80's. Trying to be positive & praying.

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Hello @nanee1

I'm sorry to hear that you are feeling so bad. I'm assuming that you are having side effects from the chemo. Is that correct?

If that is the case, you might consider talking to your doctor's office to see if there are medications available to help with the side effects.

What are the worst symptoms you are having right now?

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1 reply
khushi80 | @khushi80 | Oct 2, 2023

Hello everyone. I am Khushi and have been operated for borderline malignant Phyllodes in the left breast in 2019 (without radiation ). It reoccurred in the same area ( local recurrence ) in feb 2023 and this time it was categorised as chondrosarcoma and osteosarcoma. We again did radical mastectomy and got the entire left breast removed , this time followed by 28 session of. Radiotherapy. The current PET scans of sept 2023 are showing spread in the lungs. Wanted guidance from all of you regarding personal experiences or recommendations of the line of treatment that we should opt as this is a third recurrence. What is the latest line of treatment adopted for such a disease and how can we tackle this in the best possible way. Lots of love and strength to all going through this.

REPLY
1 reply
nanee1 | @nanee1 | Oct 2, 2023

I have leiomyosarcoma. I have a mass on my liver. The cancer has spread. I am in my 5th day after the chemo infusion. Pretty miserable. I don't know that I will continue the chemo. I am in my mid 80's. Trying to be positive & praying.

REPLY
3 replies
EverythingLucky | @everythinglucky | Oct 1, 2023
In reply to @janetamyshapiro1956 "Memorial Slian Kettering has a new trial but you have to have a certain mutation. Here..." + (show)
@janetamyshapiro1956

Memorial Slian Kettering has a new trial but you have to have a certain mutation. Here is a link to all their trials for synovial sarcoma.
https://www.mskcc.org/cancer-care/types/soft-tissue-sarcoma/clinical-trials

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Thanks for the information.

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janetamyshapiro1956 | @janetamyshapiro1956 | Oct 1, 2023
In reply to @everythinglucky "I was recently diagnosed with Synovial Sarcoma. I had one tumor in my left lung and..." + (show)
@everythinglucky

I was recently diagnosed with Synovial Sarcoma. I had one tumor in my left lung and I have a large tumor in my mediastinum (near my heart). The doctors are trying to determine a treatment plan to remove the large tumor. The surgeon who removed the small tumor said that he would not operate on me to remove the larger tumor because the surgery would be too risky. I hope your niece get better with the treatments she is taking. I am in a waiting stage. I don't know if they are going to operate or give me treatments first. It took them three months to determine what type of cancer I had. Blessings to you and your family.

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Memorial Slian Kettering has a new trial but you have to have a certain mutation. Here is a link to all their trials for synovial sarcoma.
https://www.mskcc.org/cancer-care/types/soft-tissue-sarcoma/clinical-trials

REPLY
1 reply
EverythingLucky | @everythinglucky | Oct 1, 2023
In reply to @hopeful33250 "Hello @everythinglucky and welcome to the Cancer support group discussion on Mayo Connect. I'm glad that..." + (show)
@hopeful33250

Hello @everythinglucky and welcome to the Cancer support group discussion on Mayo Connect. I'm glad that you found this forum. It is a great place to share your experiences and encourage others as well as be encouraged by the stories that others will share.

I see in your post that you have had one tumor removed. How long ago was that surgery? What type of treatment plans are being explored regarding the larger tumor near the heart?

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I had my first surgery on August 11th. Right now there are no treatment plans in place. When the larger tumor was removed, the doctors had no idea what type of cancer I had. They first told me that I had stage 4 Lung Cancer. They had several multidisciplinary meetings trying to determine what type of cancer I have. I was diagnosed with cancer in June and had a needle biopsy (of the large tumor) in July. They couldn't determine the cancer type from the first biopsy so they decided to remove the smaller tumor. They just found out on Wednesday (9/27) what type of cancer I have. I see a specialist on Wednesday this week to hopefully discuss a treatment plan.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Oct 1, 2023
In reply to @everythinglucky "I was recently diagnosed with Synovial Sarcoma. I had one tumor in my left lung and..." + (show)
@everythinglucky

I was recently diagnosed with Synovial Sarcoma. I had one tumor in my left lung and I have a large tumor in my mediastinum (near my heart). The doctors are trying to determine a treatment plan to remove the large tumor. The surgeon who removed the small tumor said that he would not operate on me to remove the larger tumor because the surgery would be too risky. I hope your niece get better with the treatments she is taking. I am in a waiting stage. I don't know if they are going to operate or give me treatments first. It took them three months to determine what type of cancer I had. Blessings to you and your family.

Jump to this post

Hello @everythinglucky and welcome to the Cancer support group discussion on Mayo Connect. I'm glad that you found this forum. It is a great place to share your experiences and encourage others as well as be encouraged by the stories that others will share.

I see in your post that you have had one tumor removed. How long ago was that surgery? What type of treatment plans are being explored regarding the larger tumor near the heart?

REPLY
1 reply
EverythingLucky | @everythinglucky | Oct 1, 2023
In reply to @mywimb569 "I’m hoping to learn more abt synovial sarcoma. My young adult nephew has been diagnosed. It..." + (show)
@mywimb569

I’m hoping to learn more abt synovial sarcoma. My young adult nephew has been diagnosed. It originated in his arm. He did rounds of chemo and after was in remission. Now he has areas in his lungs. Radiation treatments did not help.

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I am 48 and was recently diagnosed with Synovial Sarcoma in my mediastinum. I am trying to learn more also. I was told this type of cancer is really rare and the location of mine is extremely rare. Blessings to you and your nephew.

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