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Diagnosed with Giant Cell Tumor / Tenosynovial giant cell tumor?
Hi all,
This is my first post on Mayo Clinic Connect, but I've had a diagnosis of giant cell tumor of the sacrum since 05/2025. It's a benign tumor and not considered cancer, but it grows very aggressively and can cause damage in the surrounding area.
When I was first diagnosed, it was growing out of my sacrum and damaging my S5, S4, and part of my S3. It caused so much pain that I lost my appetite, quit my job, and maxed out any OTC painkillers I could reasonably take. I had the tumor removed in 05/2025. It was a very intense surgery that required a lot of physical therapy, and it took me at least 6 months to feel 80% myself again.
I was suspicious of a recurrence in November of 2025, which was confirmed by an MRI and PET Scan. Since then I've been trying to shrink the tumor with denosumab, a partial resection surgery, and an embolization. None of these methods have been effective. Which brought me to the Mayo clinic this past month.
I'll be getting a second surgery the first week of October. This one will be as intense as the first one. I'll recover from that for a few weeks and start radiation.
Along the way, I stumbled upon this site and was looking for others diagnosed with GCT or tenosynovial GCT. It's been sparse. Where are you guys? How are you? I figured it was time to say "Hi".
And "Hi" to anyone else reading!
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Wow. What a strange tumor. I would say the majority of people in this forum (99%?) are focused on sarcomas, which as a cancer, has a very serious prognosis. But it is interesting that your tumor arose in the same tissue that many sarcomas arise from. Please feel free to hang out here. You never know what tidbit of info or Q you can bring back to your doctor(s) which may spark a new road of therapy for you.
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2 Reactions@quichewithmayo Hi, yes, very strange. I feel misplaced, but usually the doctors I see are oncologists, so I went from there...
Hi, gctgirl. Welcome to the group, although I do wish you weren’t needing to be here! I know nothing about your situation, either. I had anal cancer followed seven months later by unrelated breast cancer, for which I had a double mastectomy. Those were in 2024-25 and I feel fine now. I hope this next surgery does the trick for you. Obviously, you’re in great hands at Mayo. Please do keep us posted. Hugs.
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3 ReactionsFor anyone who is not familiar, here is more information about tenosynovial giant cell tumors
https://www.mayoclinic.org/diseases-conditions/tenosynovial-giant-cell-tumor/symptoms-causes/syc-20605004
Welcome @gctgirl. I'm tagging @fancynance and @eyrar who have experience with tenosynovial giant cell tumors and may have more to share.
I second @yancy's comment - you are in good hands at Mayo Clinic. Will you be having surgery at Mayo Clinic in Rochester MN?
@colleenyoung Thanks for tagging me! Mine was malignant so my experience may have been different, but I had radiation and then a surgery to remove the tumor in May 2023. I haven’t had any recurrence/metastasis since! I’m not sure if this platform has direct messages, but if it does, feel free to reach out!
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2 ReactionsHi Getgirl,
I'm so sorry to hear what you've gone through.
I also have tgct which was found after my breast cancer treatment 4/2021 at17.5cm in my hip/upper femur. Mine is benign and diffuse so it did come back less than 2 years.
In 2021 i was in turalio and when it came back i was put on romvimza. After so much time on these meds, i had to have my gallbladder removed a few months ago and now getting treated at Mayo Clinic.
In August i finished a month of radiation and we'll do the MRI this Nov/Dec to see if it got rid of it.
There are more meds close to approval for tgct, which is wonderful news.
Please let us know how you are doing and i pray for the best for you. 🙂
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2 ReactionsHi @fancynance @eyrar
Sorry to hear about what you have gone through but I appreciate your comments. I am getting treated at Mayo starting next week. I am going to have surgery to debulk the tumor, then get radiation to kill any remaining tumor / cells. I am doing okay just trying to stay positive.
I am glad you haven't had any recurrence/metastasis Anna. Congrats on finishing radiation and I hope the tumor is gone fancynance. I'll keep you both in my thoughts! 🙂
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3 Reactions@gctgirl
You're in my prayers and hope to hear from you about how well everything went and that you have less pain and no recurrence. 🙂