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.

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
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
Terriebikes | @bicycle3 | Oct 30, 2022

Going for CT Scan tomorrow

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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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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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rociovega | @rociovega | Oct 30, 2022

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.

REPLY
3 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Oct 30, 2022
In reply to @msannino "I’m a 69 year old male in otherwise generally good health. In September I was diagnosed..." + (show)
@msannino

I’m a 69 year old male in otherwise generally good health. In September I was diagnosed with Liposarcoma of the Retroperitoneal area with a 6.1cm x 6.7cm tumor abutting top of my left kidney. Telltale symptoms (fatigue, night sweats, dry cough) began in April. The diagnosis was made at Fox Chase Cancer Center of Temple University Health Systems in Phila. The pathology report after biopsy of tumor indicates a subtype of well-differentiated cells, though the Surgeon Oncologist said there is potentially some de-differentiated cells showing up in surrounding fat. His recommendation is five weeks (25 days) of radiation on the tumor area, followed by 5 weeks of recovery, then open surgery to remove the tumor mass, left kidney and possibly the spleen. The left kidney is currently healthy and is only abutted by the tumor making it close in proximity. Per the surgeon, the reason the kidney would be removed is due to the damage caused by the radiation treatments. In my meeting with the Radiation Oncologist, I asked if the radiation treatment can be made precise enough to treat the tumor and prevent/minimize damage to the left kidney. She said that she would adjust the target area based on what the surgeon’s plan was regarding the margin he plans to remove (full kidney or partial kidney). My hope is that both radiologist and surgeon can agree to work to spare a portion of the left kidney, but I don’t think the surgeon is inclined to change his plan. I am going for a second opinion at Penn Medicine Sarcoma program this coming week, but Fox Chase doctors bizarrely told me in advance that they expect I will be told by the Penn doctor that he recommends surgery up front, without radiation treatment. If so, that demonstrates how rare this cancer is, where two leading cancer treatment centers in the same city do not agree on the same treatment protocol. If the second opinion recommendation by Penn Medicine is for surgery up front as predicated by Fox Chase doctors, I may be facing the need for a possible third opinion.

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

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1 reply
mkoebs | @mkoebs | Oct 29, 2022
In reply to @ellengrubb "Thank you, Mona. I have just registered. I agree with you that sharing with family is..." + (show)
@ellengrubb

Thank you, Mona. I have just registered.
I agree with you that sharing with family is difficult. I’m the first in the family with cancer. It’s hard to get a conversation going. They don’t know how to respond and I’m not sure if my sharing is helpful…so typically I don’t.

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Yes. I’ve experienced the same. Your loved ones generally want to stay positive at all times. They mean well but can’t handle hearing about your fears or concerns. I’m more than happy to connect at anytime. Not sure if Mayo connect can coordinate or how to share my email address with you but I will if I’m able to figure out that process. Keep in touch.
Mona

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ellengrubb | @ellengrubb | Oct 29, 2022
In reply to @mkoebs "Hi Ellen, I’m sorry to hear about your recent medical condition. I hope you’re getting the..." + (show)
@mkoebs

Hi Ellen,

I’m sorry to hear about your recent medical condition. I hope you’re getting the medical care you need and your outlook is good.

Here is the link to the Memorial Sloan Kettering sarcoma support group application. It meets virtually once a month and is hosted by an MSK social worker. It may take a few weeks to be approved. I find it to be a helpful outlet and haven’t found another like it at mayo or in the Twin Cities. . Having metastatic sarcoma is very scary and I have found it hard to talk to my loved ones about it openly and honestly. That’s why a support group is helpful.
https://www.mskcc.org/cancer-care/patient-education/sarcoma-group
Let me know if you need anything else. I’m always willing to listen, talk and share. Sending you much love and support.

Mona

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Thank you, Mona. I have just registered.
I agree with you that sharing with family is difficult. I’m the first in the family with cancer. It’s hard to get a conversation going. They don’t know how to respond and I’m not sure if my sharing is helpful…so typically I don’t.

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1 reply
mkoebs | @mkoebs | Oct 29, 2022

Hi Ellen,

I’m sorry to hear about your recent medical condition. I hope you’re getting the medical care you need and your outlook is good.

Here is the link to the Memorial Sloan Kettering sarcoma support group application. It meets virtually once a month and is hosted by an MSK social worker. It may take a few weeks to be approved. I find it to be a helpful outlet and haven’t found another like it at mayo or in the Twin Cities. . Having metastatic sarcoma is very scary and I have found it hard to talk to my loved ones about it openly and honestly. That’s why a support group is helpful.
https://www.mskcc.org/cancer-care/patient-education/sarcoma-group
Let me know if you need anything else. I’m always willing to listen, talk and share. Sending you much love and support.

Mona

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