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.

hopeful2 | @hopeful2 | Oct 30, 2022

I apologize for not knowing where to post this question. Has anyone tried the Galleri cancer DNA blood test that is very accurate in detecting 50 cancers in the early stages?

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Marty S | @msannino | Oct 30, 2022
In reply to @colleenyoung "Hi Marty, @msannino. Some difficult choices to be made. How did the second opinion go? Did..." + (show)
@colleenyoung

Hi Marty, @msannino. Some difficult choices to be made. How did the second opinion go? Did they recommend surgery first?

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Hi thanks for asking. I did get a second opinion at Univ of Penn Medicine two weeks ago. The Penn surgeon’s proposal includes removing the tumor, Splenectomy (spleen), partial nephrectomy (left kidney) and Pancreatectomy Distal (partial spleen). In his opinion he explained that there isn’t enough clinical study evidence that shows a benefit to radiation treatments of liposarcoma in the abdominal area before surgery. Furthermore radiating the tumor can destroy the cells that would tell them more about the type of cancer and likelihood of recurrence. Unlike the first surgeon who planned to remove the full left kidney mainly because of radiation damage, the Penn surgeon wants to spare/preserve the kidney by doing partial removal. which I appreciate. That said, I am going for a third opinion at Johns Hopkins Cancer Center to see if they have a different approach to a situation like mine. Their website talks about radiation treatment direct to the area after tumor is removed while still open in surgery. Not saying I would go that route but JH seems to offer some other treatment protocols. This has been a long slog to get information I can use for an informed decision but I’m not regretting the effort. I already learned so much from getting just two opinions. I’ll post once I make my decision after I get the third opinion from JH Cancer Center hopefully within the next week.

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Terriebikes | @bicycle3 | Oct 30, 2022

Going for CT Scan tomorrow

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maria957 | @maria957 | Oct 31, 2022
In reply to @rociovega "hello, my name is Rocio, I am from Queretaro in Mexico, and I found this group..." + (show)
@rociovega

hello, my name is Rocio, I am from Queretaro in Mexico, and I found this group searching through the internet since we are in shock and desperate looking for an answer or guidance because we do not know where to turn for this situation. My 4-year-old little cousin has been diagnosed with osteosarcoma in her bones, the news has been devastating, but according to the studies that have been done, the spots have appeared quickly on both of her legs. I would like help on where to go, in Mexico attention is precarious and in the country's capital the wait is very long for an appointment, I think we should act as soon as possible but we feel our hands are tied.

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Hi Rocio, I am in another group, for a friend of mine, I am from Argentina. No idea about medicine in Mexico. There are hospitals in Mexico DF. I would ask the pediatrician for suggestions.

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1 reply
rociovega | @rociovega | Oct 31, 2022
In reply to @maria957 "Hi Rocio, I am in another group, for a friend of mine, I am from Argentina...." + (show)
@maria957

Hi Rocio, I am in another group, for a friend of mine, I am from Argentina. No idea about medicine in Mexico. There are hospitals in Mexico DF. I would ask the pediatrician for suggestions.

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I appreciate your attention and any guidance regarding this disease. We are desperate.

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Oct 31, 2022
In reply to @rociovega "hello, my name is Rocio, I am from Queretaro in Mexico, and I found this group..." + (show)
@rociovega

hello, my name is Rocio, I am from Queretaro in Mexico, and I found this group searching through the internet since we are in shock and desperate looking for an answer or guidance because we do not know where to turn for this situation. My 4-year-old little cousin has been diagnosed with osteosarcoma in her bones, the news has been devastating, but according to the studies that have been done, the spots have appeared quickly on both of her legs. I would like help on where to go, in Mexico attention is precarious and in the country's capital the wait is very long for an appointment, I think we should act as soon as possible but we feel our hands are tied.

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Hi @rociovega, this must be so hard for your family. It isn't fair that such diseases affect young children. Might it be possible for your family to travel to the US for care?

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maria957 | @maria957 | Nov 1, 2022
In reply to @rociovega "I appreciate your attention and any guidance regarding this disease. We are desperate." + (show)
@rociovega

I appreciate your attention and any guidance regarding this disease. We are desperate.

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Hi @rociovega, I would ask the pediatrician for referrals, oncologists for children, if available. Take it easy and study options. My friend (with another cancer, non curable) heard from a neighbour her mother had gone to a Doctor "xx" and recovered. I checked his name with friends and my clinical doctor. They all said that guy is a NO NO. He gives placebo and sells "hope". So thank god I could stop that nonsense.
Desperate is not good.
Go to doctors referred by doctors you trust.
Hope this helps, get two or three opinions. Sending all my love.

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Nov 1, 2022
In reply to @maria957 "Hi @rociovega, I would ask the pediatrician for referrals, oncologists for children, if available. Take it..." + (show)
@maria957

Hi @rociovega, I would ask the pediatrician for referrals, oncologists for children, if available. Take it easy and study options. My friend (with another cancer, non curable) heard from a neighbour her mother had gone to a Doctor "xx" and recovered. I checked his name with friends and my clinical doctor. They all said that guy is a NO NO. He gives placebo and sells "hope". So thank god I could stop that nonsense.
Desperate is not good.
Go to doctors referred by doctors you trust.
Hope this helps, get two or three opinions. Sending all my love.

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@maria957, I noticed you wanted to post a link to a resouce for @rociovega. You will be able to add URLs to your posts in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe. Clearly the link you wanted to post is helpful. Please allow me to post it for you.

- Sarcoma Alliance https://www.sarcomaalliance.org/

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1 reply
maria957 | @maria957 | Nov 1, 2022
In reply to @colleenyoung "@maria957, I noticed you wanted to post a link to a resouce for @rociovega. You will..." + (show)
@colleenyoung

@maria957, I noticed you wanted to post a link to a resouce for @rociovega. You will be able to add URLs to your posts in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe. Clearly the link you wanted to post is helpful. Please allow me to post it for you.

- Sarcoma Alliance https://www.sarcomaalliance.org/

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Thanks a lot!!

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Terriebikes | @bicycle3 | Nov 1, 2022
In reply to @bicycle3 "I take pain pill every 4 hours. Also one that is slowly released. Also tylenol every..." + (show)
@bicycle3

I take pain pill every 4 hours. Also one that is slowly released. Also tylenol every 8 hours.
I am able to attend my weight training classes and dance classes and yoga all at the Y as I modify. Cycling and swimming are other loves. I have cycled on the flat Erie Canal trail and will try swimming this week. The ileostomy is my concern in the water.
The chemo made my hands and feet a bit crusty. My hair falls out a bit at a time so
I hardly notice it. It is not growing or thick as it used to be.
We will measure the largest tumor on the 31st to see how it is growing or?!?!?

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Scan showed not much change in 3 months time.
Doc will explain next Monday.
Hopefully the rigid calcification will limit growth?!?!

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