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.

william2022 | @william2022 | Jan 17, 2023
In reply to @barman "Greetings. I have been recently diagonised with dedifferentiated liposarcoma (which was found out through biopsy after..." + (show)
@barman

Greetings.
I have been recently diagonised with dedifferentiated liposarcoma (which was found out through biopsy after removal of tumor). The surgery is already done and I'm currently recovering from it. The retroperitoneal tumor has been removed, but it has been noticed that there is still some residual left, and the doctors said that since it's situated a large area, radiation wouldn't work. Treatment through Chemotherapy is still not confirmed. They have been saying that it needs to be operated on over and over a numerous amount of times, and I have been considering alternate therapies and methods. Any suggestions on what path to take? Is there a treatment of such kind of liposarcoma without any other surgery methods?

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Hello @barman I am a five year survivor of high grade dedifferentiated liposarcoma. Needless to say this is a hell of an ordeal. May we (collectively) ask where it is that you reside currently? My diagnosis followed a biopsy and then 4 weeks of radiation followed by surgery 3 weeks later. In my case it was determined that there wasn't a chemotherapy that would be helpful but that was 5 years ago and there are some great advances that have been achieved in the interim. I agree with the group that you would greatly benefit from a high level sarcoma center at this stage and Mayo Clinic is at the top along with a few others.

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1 reply
mary64300 | @mary64300 | Jan 17, 2023

Hello. I have not posted in a long time. But i started adjuvant chemotherapy yesterday. 4 days every month for 6 months.
This was after a bilateral hysterectomy including lymphnodes and ovaries at the end of October 2022.
Diagnosis: Central PNET with neuroblastoma features. Stage IIIc1
My cocktail is CISplatin / Etoposide / Cyclophosphamide.

I learnt since my last post that this is not a sarcoma but was classified as such because of the rarity of the tumor. So i am not sure i qualify anymore to participate in this group 😅.
I have looked for C-Pnet with neuroblastoma references in adults and did not find anything so maybe this is my home 😂

I am still followed by the Gynecology oncology group. But they partner with a Neuro-oncologist because of the Central System type of tumor.
So far so good as of day 2, cycle 1.

I thank everyone who helped me when i was panicking, especially our moderators. And thinking of everyone involved in this long journey, sending positive vibes.
No need to go to the fair for emotional and physical roller coaster rides 🙂

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pb82 | @barman | Jan 16, 2023
In reply to @bicycle3 "I had surgery in 2001, 2020 and 2021. The chemo was in 2020 along with 15..." + (show)
@bicycle3

I had surgery in 2001, 2020 and 2021.
The chemo was in 2020 along with 15 radiations on calcified liposarcoma on hip. Chemo was once a month for 4 months. then I broke my tibia so took a few months off.
Now I finished4 radiations on chest and 2 chemos.
The chemo does not show improvement so new erubilin is prescribed. Waiting for insurance approval.
In the mean time I have applied to see doc at Sloan Kettering, 6 hours away.
Waiting for answer.

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Thank you so much for your response!!
Please keep us updated with your health.. we'll be grateful.
Hoping for your soon recovery!!

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1 reply
Terriebikes | @bicycle3 | Jan 15, 2023
In reply to @barman "@bicycle3 glad to know that it is stable now. I hope you are doing well. How..." + (show)
@barman

@bicycle3 glad to know that it is stable now. I hope you are doing well. How are you now? Can we ask how many times have you had surgeries incase of this? We would like it if you would please inform us that after how many days have you had chemotherapy after surgery. Also, what was the gap between 2 or 3 surgeries? How long has the treatment been going on after diagnosis? We would be grateful if you would elaborate. We're really caught in a mess currently, for which we're so.. I don't know, curious about stuff which we thought would never bother us? :/ Sorry for the large amount of questions, but we would be grateful if you would provide us with information so that we can get out of this current mess.

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I had surgery in 2001, 2020 and 2021.
The chemo was in 2020 along with 15 radiations on calcified liposarcoma on hip. Chemo was once a month for 4 months. then I broke my tibia so took a few months off.
Now I finished4 radiations on chest and 2 chemos.
The chemo does not show improvement so new erubilin is prescribed. Waiting for insurance approval.
In the mean time I have applied to see doc at Sloan Kettering, 6 hours away.
Waiting for answer.

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1 reply
Terriebikes | @bicycle3 | Jan 15, 2023
In reply to @barman "Thank you. Well, I have actually considered second opinions. Also, we are currently seeking for treatment..." + (show)
@barman

Thank you. Well, I have actually considered second opinions. Also, we are currently seeking for treatment for this nearby, but since this thing is extremely rare, we are considering to be just a bit more sure about this stuff for further treatment.

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I have applied to Sloan Kettering for another opinion. I pray it is not too late for a new diagnosis.

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pb82 | @barman | Jan 12, 2023
In reply to @hopeful33250 "It might be helpful to look at some of my suggestions in the post above, https://connect.mayoclinic.org/comment/795026/..." + (show)
@hopeful33250

It might be helpful to look at some of my suggestions in the post above, https://connect.mayoclinic.org/comment/795026/ such as the American Cancer Society to find a specialist in liposarcoma, Mayo Clinic or another research-oriented medical institution.

Will you let me know how you are doing?

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Ah thank you!!
I am doing alright now and have almost recovered from the operation. I'll make sure to let you know in the future about progresses n stuff

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jan 12, 2023
In reply to @barman "I am not really sure since I haven't dealt with anything similar to this before. I..." + (show)
@barman

I am not really sure since I haven't dealt with anything similar to this before. I would like an online consultation. Any suggestions?

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It might be helpful to look at some of my suggestions in the post above, https://connect.mayoclinic.org/comment/795026/ such as the American Cancer Society to find a specialist in liposarcoma, Mayo Clinic or another research-oriented medical institution.

Will you let me know how you are doing?

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1 reply
pb82 | @barman | Jan 12, 2023
In reply to @hopeful33250 "@barman, I agree, when you have a rare diagnosis, you often need to go outside of..." + (show)
@hopeful33250

@barman,

I agree, when you have a rare diagnosis, you often need to go outside of your local area in order to find the best treatment possible.

What are your options for a second opinion?

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I am not really sure since I haven't dealt with anything similar to this before. I would like an online consultation. Any suggestions?

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1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jan 11, 2023
In reply to @barman "Thank you. Well, I have actually considered second opinions. Also, we are currently seeking for treatment..." + (show)
@barman

Thank you. Well, I have actually considered second opinions. Also, we are currently seeking for treatment for this nearby, but since this thing is extremely rare, we are considering to be just a bit more sure about this stuff for further treatment.

Jump to this post

@barman,

I agree, when you have a rare diagnosis, you often need to go outside of your local area in order to find the best treatment possible.

What are your options for a second opinion?

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1 reply
pb82 | @barman | Jan 11, 2023
In reply to @hopeful33250 "Hello @barman and welcome to Mayo Connect. You are wise to be looking for answers for..." + (show)
@hopeful33250

Hello @barman and welcome to Mayo Connect. You are wise to be looking for answers for liposarcoma. I would encourage you to look for a well-known cancer center in your area. If there is not one nearby, check and see if there is one where you can get a virtual consultation.

Mayo Clinic has three campuses in Minnesota, Florida and Arizona. If you want to see about an appointment, here is link you can use, http://mayocl.in/1mtmR63.

If you are not close to a Mayo facility, you might check out university medical schools in your area. These facilities tend to be research-oriented and thereby have the latest treatments for hard-to-treat health issues.

Finally, the American Cancer Society might be able to refer you to a liposarcoma specialist in your area. Here is a link to their website https://www.cancer.org/.

Have you considered a second opinion?

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Thank you. Well, I have actually considered second opinions. Also, we are currently seeking for treatment for this nearby, but since this thing is extremely rare, we are considering to be just a bit more sure about this stuff for further treatment.

REPLY
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