Does anyone have any information on this type of tumour. I was diagnosed with this when I had my hysterectomy. It was a surprise to my doctors and me. Nobody seems to know much about it except that it is very rare. I want to know what the chances are of it recurring and whether they occur in other parts of the body. All I have been told is that it is extremely rare.
Hello and thanks for posting
I am sorry to hear you needed a hysterectomy and at the same time a granular cell tumour was found.
As you say these are rare soft tissue tumours that are thought to start in the schwann (nerve) cells and can occur anywhere in the body. Most granular tumours are benign (not cancer) and usually removing them with surgery is the main treatment. As I say only a very small percentage (about 2%) of these tumours are malignant (cancer). If the tumour is malignant or the tumour is particularly large they will often be monitored at regular intervals to check for recurrence (where the tumour comes back).
Once you have had this type of tumour there is a possibility of further tumours but this risk is low. It is worth saying that if you notice anything unusual in your body do go and get it checked out by your doctor. There will always be a good chance it won't be anything serious but for peace of mind it is worth seeing someone about it.
I'm not sure what the doctors have said to you about this and if any follow up is needed but they are in the best position to explain your situation to you and what needs to happen in your case.
I hope this is helpful and please get back if you have further questions. You are also welcome to call our nurse helpline on 0808 800 4040, Monday-Friday 9-5.
All the best