Synovial spindle cell sarcoma, left lung. Anyone else have this?

Posted by scs23 @scs23, Dec 14, 2023

I was diagnosed with synovial spindle cell sarcoma in my left lung in January of this year. The tumor was already 10cm when we found it. I had surgery in February to remove it, and a second surgery in March to remove it again, as it had grown back to 9cm in six weeks. I started chemo and radiation within days of my second surgery and have since finished treatments. My latest scans don't show any definitive disease. I'm worried though, because its so aggressive and grew so fast between my surgeries. I still have quite a bit of pain around the surgical site. And I still have hot flashes, cold sweats, and night sweats that started during treatment. The doctors tell me that this type of cancer is very rare. Especially since I'm otherwise a very healthy 42yr old woman. Anyone else have this type of cancer? Any ideas about coping with the pain or hot flashes?

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

@scs23. Good morning. It sounds as if you have had a battle that must have been extremely difficult to handle. I've had many different lung tumors, but they have been over a series of years.

You had two surgeries that changed the topography of your chest wall, and I'm not surprised that you still have some pain left. The skin and other soft tissue around your surgery site are loaded with nerve endings. Massaging it might help. Or, ask your surgeon or his nurse for suggestions

The following are from sources found by Google:

"Sarcoma is an uncommon group of cancers that arise in the bones and connective tissue such as fat and muscle. In most cases, it’s not clear what causes sarcoma. Family history and exposure to chemicals or radiation may increase risk. Symptoms depend on tumor type and location. They may include a noticeable lump or pain. Treatment may include surgery, radiation, and chemotherapy."

"Synovial fluid, also called synovia, is a viscous, non-Newtonian fluid found in the cavities of synovial joints. With its egg white-like consistency, the principal role of synovial fluid is to reduce friction between the articular cartilage of synovial joints during movement."

I imagine that "spindle" describes the cell structure- like a spindle: a slender rounded rod with tapered ends."

I can't imagine that you would feel anything but petrified. I know that I would be. Try and use what has worked for you in the past.

I look forward to your keeping us updated and what your doctors say about this rare cancer.

Merry

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Hi @scs23, I'd like to add my welcome. I can imagine that it is scary to see the tumor grow so quickly.

I added your discussion to the Cancer support group (https://connect.mayoclinic.org/group/cancer/) as well where members are talking about sarcoma. I believe that fellow members like @ellengrubb @everythinglucky and @janetamyshapiro1956 have experience with synovial sarcoma of the lungs (primary or metastasis).

Scs23, is the tumor in your lungs primary cancer or metastasis that spread to your lungs from somewhere else in the body?

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@merpreb

@scs23. Good morning. It sounds as if you have had a battle that must have been extremely difficult to handle. I've had many different lung tumors, but they have been over a series of years.

You had two surgeries that changed the topography of your chest wall, and I'm not surprised that you still have some pain left. The skin and other soft tissue around your surgery site are loaded with nerve endings. Massaging it might help. Or, ask your surgeon or his nurse for suggestions

The following are from sources found by Google:

"Sarcoma is an uncommon group of cancers that arise in the bones and connective tissue such as fat and muscle. In most cases, it’s not clear what causes sarcoma. Family history and exposure to chemicals or radiation may increase risk. Symptoms depend on tumor type and location. They may include a noticeable lump or pain. Treatment may include surgery, radiation, and chemotherapy."

"Synovial fluid, also called synovia, is a viscous, non-Newtonian fluid found in the cavities of synovial joints. With its egg white-like consistency, the principal role of synovial fluid is to reduce friction between the articular cartilage of synovial joints during movement."

I imagine that "spindle" describes the cell structure- like a spindle: a slender rounded rod with tapered ends."

I can't imagine that you would feel anything but petrified. I know that I would be. Try and use what has worked for you in the past.

I look forward to your keeping us updated and what your doctors say about this rare cancer.

Merry

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Hi Merry @merpreb Thank you for the suggestions and information. I actually just found out that my cancer is back. A ct scan last week showed two masses, one is small, and one is quite large. The doctors are figuring out what treatment is next. I'm still trying to wrap my head around all this again.

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@colleenyoung

Hi @scs23, I'd like to add my welcome. I can imagine that it is scary to see the tumor grow so quickly.

I added your discussion to the Cancer support group (https://connect.mayoclinic.org/group/cancer/) as well where members are talking about sarcoma. I believe that fellow members like @ellengrubb @everythinglucky and @janetamyshapiro1956 have experience with synovial sarcoma of the lungs (primary or metastasis).

Scs23, is the tumor in your lungs primary cancer or metastasis that spread to your lungs from somewhere else in the body?

Jump to this post

Hi Colleen @colleenyoung Thanks for adding my discussion to the cancer support group. The cancer in my lung is primary cancer. Its one of things that makes this so rare. It isn't usually found in the lungs, its usually found in soft tissue or bone.

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