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.

kaposidaughter | @kaposidaughter | Jun 8 9:53am

My father was diagnosed with kaposi sarcoma in his foot

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mimicmckay | @mimicmckay | Jun 7 3:27pm
In reply to @dlionhardt "Hi everyone, I was diagnosed with a GIST 7 days ago, and I am scheduled for..." + (show)
@dlionhardt

Hi everyone, I was diagnosed with a GIST 7 days ago, and I am scheduled for surgery on 6/16. I feel blessed because of the way this all played out. I went in for a routine endoscopy about some swallowing issues, and my GI doctor discovered the tumor. After second endoscopy with ultrasound and fine needle aspiration I was told that it was a GIST, approximately 3.5cm.

The other reason I am feeling blessed is the location, it is in the wall of the fundus, in the muscle tissue, and no other tumors were found in subsequent CT scans. My oncologist surgeon thinks this will be a curative surgery, barring any unforeseen issues.

I know not everyone has such prognosis, so my prayers are with everyone on this group, for comfort, peace, and healing.

I am now in the waiting mode; I will check in when I can and will give an update after surgery. I also know the doctor will be using the Da Vinci Robot for the surgery.

I would like to thank Mayo Clinic, and Ms. Young for this support group.

In Christ, David L

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Please do check in when you can. I was also diagnosed with a GIST in the distal esophagus. My oncologist has put me on Gleevec and wants to see if my tumor, currently also 3.5 cm, improves. I'm scheduled for surgery in the fall. I look forward to hearing your reports and pray for a speedy and uneventful recovery. I'll add you to my prayers.

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1 reply
dlionhardt | @dlionhardt | Jun 6 1:17pm
In reply to @colleenyoung "Hi @me67 @udderplace @brinys @deborahe @jeffk @Laydeewinx @sheila2005 @funkynotes @zshivaughn @jacobito @swstar, I'd like to invite..." + (show)
@colleenyoung

Hi @me67 @udderplace @brinys @deborahe @jeffk @Laydeewinx @sheila2005 @funkynotes @zshivaughn @jacobito @swstar,
I'd like to invite you to the new discussion group for people living with sarcoma. What type of sarcoma have you been diagnosed with? Are you currently in treatment or finished with treatment?

Jump to this post

Hi everyone, I was diagnosed with a GIST 7 days ago, and I am scheduled for surgery on 6/16. I feel blessed because of the way this all played out. I went in for a routine endoscopy about some swallowing issues, and my GI doctor discovered the tumor. After second endoscopy with ultrasound and fine needle aspiration I was told that it was a GIST, approximately 3.5cm.

The other reason I am feeling blessed is the location, it is in the wall of the fundus, in the muscle tissue, and no other tumors were found in subsequent CT scans. My oncologist surgeon thinks this will be a curative surgery, barring any unforeseen issues.

I know not everyone has such prognosis, so my prayers are with everyone on this group, for comfort, peace, and healing.

I am now in the waiting mode; I will check in when I can and will give an update after surgery. I also know the doctor will be using the Da Vinci Robot for the surgery.

I would like to thank Mayo Clinic, and Ms. Young for this support group.

In Christ, David L

REPLY
1 reply
adi21 | @adi21 | Jun 5 11:55pm
In reply to @adi21 "Good morning Can you give me more details? When did the disease start and what treatment..." + (show)
@adi21

Good morning
Can you give me more details?
When did the disease start and what treatment did you receive?
For me, did it start after the third dose of the Pfizer vaccine for covid 19, by chance or not?
I talked to an oncologist surgeon in Italy but I want to learn more about this disease.

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I discovered the disease in 2023 after 1 year in which I went to several doctors and they did not know what I had. In my case, it manifested itself in the form of spots on the lower limbs, more precisely on the fingers and soles of the feet. After biopsy and immunohistochemistry, the diagnosis of Kaposi's sarcoma was made. That year I had radiotherapy on one leg and the following year on the other. After radiotherapy, the skin burned and opened, fell off and now it looks good. Radiotherapy weakens the immune system even more, the skin becomes dead and does not recover and the dermatologist forbade me from having radiotherapy anymore. I go for a check-up in Italy every 6 months and as a medicine I take something that contains vitamin D.
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Moderator
Colleen Young, Connect Director | @colleenyoung | Jun 5 8:13pm
In reply to @ninaricci "I was diagnosed with MPNST. Has anyone the same diagnose?" + (show)
@ninaricci

I was diagnosed with MPNST. Has anyone the same diagnose?

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@ninaricci, welcome. Please see this related discussion:

- Malignant Peripheral Nerve Sheath Tumor https://connect.mayoclinic.org/discussion/malignant-peripheral-nerve-sheath-tumor/

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kenc | @kenc | Jun 2 5:49pm
In reply to @adi21 "Good morning Can you give me more details? When did the disease start and what treatment..." + (show)
@adi21

Good morning
Can you give me more details?
When did the disease start and what treatment did you receive?
For me, did it start after the third dose of the Pfizer vaccine for covid 19, by chance or not?
I talked to an oncologist surgeon in Italy but I want to learn more about this disease.

Jump to this post

Not clear when it started. It took several months before the medical profession settled on the finding that the large lump I had was sarcoma cancer. The treatment was radiation and surgery. They since have discovered a very tiny tumor, which will be treated by chemo at first, then perhaps radiation, then perhaps surgery and immunotherapy.

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adi21 | @adi21 | Jun 1 11:22pm
In reply to @kenc "Suggest you ask these question with your oncologist. For me, the original treatment was radiation, followed..." + (show)
@kenc

Suggest you ask these question with your oncologist. For me, the original treatment was radiation, followed by surgery. The tumor has appeared again and now the treatment is chemo therapy, with perhaps more radiation, surgery, and immunotherapy. There are number of variations on these therapies, this is why I recommend you obtain the information from you oncologist.

Jump to this post

Good morning
Can you give me more details?
When did the disease start and what treatment did you receive?
For me, did it start after the third dose of the Pfizer vaccine for covid 19, by chance or not?
I talked to an oncologist surgeon in Italy but I want to learn more about this disease.

REPLY
2 replies
michdawson | @michdawson | May 31 7:07pm
In reply to @oldsailor71 "I had chondrosarcoma in 2002 for two weeks. A lump on my sternum was growing, lump..." + (show)
@oldsailor71

I had chondrosarcoma in 2002 for two weeks. A lump on my sternum was growing, lump removed, lump was sarcoma growing in rib. pieces of 3 ribs and pieces of sternum removed, gore-tex patch sown on. no sign or symptoms since. last CAT scan was 2 weeks ago.
all I have to pass on is get that lump or bump that lasts more than a week looked at. My tumor was grade 1, very early.

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I had a similar situation recently. How are you now more than a year later?

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chuckeg | @chuckeg | May 30 2:30pm
In reply to @colleenyoung "Hi @chuckeg, I appreciate the details. So you've started treatment now. Was your first appointment last..." + (show)
@colleenyoung

Hi @chuckeg, I appreciate the details. So you've started treatment now. Was your first appointment last week the radiation simulation appointment? Have you started daily radiation now? How is it going?

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Hi Colleen,

This is an update. Finished radiation 5 weeks ago. Unfortunately I acquired a blood infection shortly after. Spent a full week in the hospital identifying the infection (bacteria). Eventually getting a Picc line with 2 antibiotics. Got one clear/ clean blood test resulting in being released to home health care, antibiotics 24hours/day for a month. The urgency had 2 reasons, getting ready for a June 17 surgery and stopping this infection from spreading and getting worse. Weekly blood tests were taken at home with improvement showing in basic metabolic panels. Secondly, pain medications have been effective, enough to modify its use by taking Oxy (twice a day, 5 Mg.) and Tylenol (3000 mg) per 24 hours. I've had PT and OT during this time, to get me stronger prior to surgery. I hope to have more after surgery. My pain level in my left leg has also been reduced. The numbness has now spread to my left foot (from my hip). My left leg is restricting movement and balance. My PT has really helped. I have fallen 3 more times in the past 10 days, with a walker (for a total of 12 times since Jan.). Lucky that I have not hurt myself. I'm impatient with my movements (guy thing?). Anyway I'll keep my story on this blog going after surgery.

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