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I was given a suspected diagnosis of a Desmoid tumour after an MRI. I was never offered a needle biopsy, they decided on an excision biopsy and I still don't have a confirmed diagnosis months later.
I regret having the surgery as it has had a bigger impact than I thought it would, and I worry the tumour will just return anyway.
So I'm interested to see how others got their diagnosis? And whether it was difficult to get the diagnosis?
I'm sorry you were mistreated and misunderstood. I went to urgent care and they did an ultrasound and CT and referred me back to my cardiologist and GP. A few months later I saw my back doctor who did my total spinal fusion. He had seen one case of desmoid tumors when he did work in S. America. He now knows that you do no operate on them, or at least, as a last resort. He ordered the biopsy, I was referred to a specialist in oncology, and have received 28 radiation treatments simultaneously. The 5 cm lump is starting to go away so I'm hopeful that my body is absorbing the dead tumor tissue and eventually all will be ok. No guarantees with this odd creature! I wish you all the best and hope you find specialists who know what they're doing. My doctor has 25 active cases of desmoids! I feel like I'm in good hands.
What a frustrating and exhausting journey — and you're definitely not alone in finding the path to a desmoid diagnosis long and complicated. Many MyDesmoidTumorTeam members have shared similar experiences of delays, uncertainty, and difficult decisions along the way.
Desmoid tumors are genuinely tricky to diagnose. Only Show Full Answer
Very difficult to get a dx. I had to have a biopsy and had never heard the term before and I'm married to a retired doctor!
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