1. < Sarcoma

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?

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Mentor
Miriam, Volunteer Mentor | @mir123 | Jun 19 11:07am

It seems like a very good idea--essential--to get some caretaking in place for your spouse before you start treatment.

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mcwjr189 | @mcwjr189 | Jun 26 9:54am

I do believe that is what I have been diagnosed with. Started with a liver sarcoma which was removed in 2021. A right lower lung resection followed in 2023 and now resurfaced in my upper left lung with 4 nodules. Never had radiation or chemo. It is suggested that I take Avastin and Temodar. Have not heard of good results so am still researching what to do. MCWJR189

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Jul 3 6:09pm
In reply to @mcwjr189 "I do believe that is what I have been diagnosed with. Started with a liver sarcoma..." + (show)
@mcwjr189

I do believe that is what I have been diagnosed with. Started with a liver sarcoma which was removed in 2021. A right lower lung resection followed in 2023 and now resurfaced in my upper left lung with 4 nodules. Never had radiation or chemo. It is suggested that I take Avastin and Temodar. Have not heard of good results so am still researching what to do. MCWJR189

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@mcwjr189, have you and your team decided on the best treatment option for you?

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1 reply
mrahaman | @mrahaman | Jul 29 12:03am

My son, 47 yr old construction worker, was recently diagnosed with same in right lung pleural space, He has done 4 rounds of high dose AIM {Doxorubicin, Ifosfamide, Mensa} and has significantly reduced from 7cm to 2cm, we have discussed having surgery after 2 more rounds. His side effects have been significant but have been well managed by the Oncology team. We are very concerned about the unknown path he may take in the future as it seems to be quite aggressive. I wish you much success and a speedy recovery!

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1 reply
mcwjr189 | @mcwjr189 | Jul 29 10:07am
In reply to @colleenyoung "@mcwjr189, have you and your team decided on the best treatment option for you?" + (show)
@colleenyoung

@mcwjr189, have you and your team decided on the best treatment option for you?

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I have another scan in 5 weeks. Decided to see results of next scan before taking chemotherapy

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Moderator
Colleen Young, Connect Director | @colleenyoung | Aug 6 1:51pm
In reply to @mrahaman "My son, 47 yr old construction worker, was recently diagnosed with same in right lung pleural..." + (show)
@mrahaman

My son, 47 yr old construction worker, was recently diagnosed with same in right lung pleural space, He has done 4 rounds of high dose AIM {Doxorubicin, Ifosfamide, Mensa} and has significantly reduced from 7cm to 2cm, we have discussed having surgery after 2 more rounds. His side effects have been significant but have been well managed by the Oncology team. We are very concerned about the unknown path he may take in the future as it seems to be quite aggressive. I wish you much success and a speedy recovery!

Jump to this post

@mrahaman, your post sounds encouraging despite your obvious concern. Even at 47 years old, our sons and daughters never stop being our babies.

When will he be finished chemo and be able to schedule surgery? Has he been able to take time off work?

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mrahaman | @mrahaman | Aug 10 7:25pm

He has one more round, if the next scans are positive. We arenot sure how quickly surgery will follow, but we are hoping and praying soon!!

He hasn't worked since March, so things are extremely tight. However, with a double port in his chest, and fatigue, he wouldn't be able to work...Hope all is going better for you and your son!!

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