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Measures about 6cm x 4cm and causing some discomfort in arm, neck and back. First oncology appt this week.

January 4
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Answer Summary

Members connected over the rare experience of living with desmoid tumors in similar locations, including the trapezius and pectoral muscles,... Read more

Members connected over the rare experience of living with desmoid tumors in similar locations, including the trapezius and pectoral muscles, sharing that their tumors ranged from 6 to 10 centimeters and caused significant pain, movement restrictions, and sleep difficulties. Several members discussed treatment options they were exploring, including cryoablation with interventional radiologists, the medication Ogsiveo, and seeking care at specialized sarcoma centers. A recurring theme was the relief of finding others with tumors in uncommon locations, the nervousness surrounding new treatments, and the mutual encouragement to stay connected and share updates as they navigated their individual journeys.

A MyDesmoidTumorTeam Member

Dr. Chugh

January 10
A MyDesmoidTumorTeam Member

Hello, I appreciate you sharing your journeys. I hope there is relief and support . I have desmoid in my pec muscle ( where it inserts onto the arm) . Diagnosis was recently in December 25. I have spoken with cryotherapist (interventional radiologist) and we are discussing dates. I am nervous. I wonder if I might be part of your conversation as our areas of tumor are not dissimilar. I understand the impact of pain, movement restrictions, sleep and fatigue issues.
I wish you well with your journey .

January 8 (edited)
A MyDesmoidTumorTeam Member

Thanks very much, Gayle. Wishing you well with your journey too and please keep us posted with how you get on with Cryoblation :)

January 8
A MyDesmoidTumorTeam Member

Thanks for reaching out. You are the only other person I’ve heard from that has a DT in the same spot. Keep me updated on your progress!

January 8
A MyDesmoidTumorTeam Member

I also have a tumour in my trapezius muscle. My tumour is measuring approximately 8cm x 10cm. I don’t have much information to share, unfortunately.
I’m waiting to hear back from my oncologist with more information about Cryoblation. I’m hoping I am a suitable candidate for this treatment option.
I also experience a lot of pain and discomfort in my neck, back, shoulders and arm.

January 7 (edited)

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