Radiotherapy cancelled due to new nodules that looks like new growth.

I had an operation on the 13th Dec 2023 after been diagnosed of Grade 2 Nerve Sheath Sarcoma at the back of my knee on my right leg. The lump has been removed, recovering well with my leg just the numbness of my foot and toes still present. It became Grade 3 after the removal. The staging scan was done in the 8th Dec 2023, got my result 9th January and it hasn’t spread (no one have told me till I’ve asked on my 9th January outpatient appointment). I waited for my radiotherapy which was planned on 15th Feb 2024 but unfortunately was cancelled due to I found a new lump on the operated area then was sent for ultrasound then MRI scan  on the same day. Then I found out that MRI scan was showing a possible reoccurrence of the lump (4 little nodules). I was asked to come back 19th Feb for a clinic oncology appointment which I attended and I mentioned another lump I found on my thigh just below my groin on the same leg. I was sent for a CT scan to see if it has spread on the same day. Now I’m awaiting for the result which I was told could be on the same day but I did not hear anything. Though around past 9pm I received a text letter appointment for Monday 26th February. Now I’m worried that it could be the result that it may have spread already, it maybe now a new plan from the original plan to have radiotherapy. I’m hoping that it has not spread. Now I’m thinking to call the specialist nurse in the morning to hopefully know if the result  of the CT scan is available. I don’t think I can wait another week to find out the result, it’s hard when you think it going to be in a right direction but now everything is seemed to be going backward. Now I’m awaiting for the result and a new plan for radiotherapy depending with the CT scan results. Hopefully they’ll let me know the result of CT before Monday so I’m not left thinking what’s happening. Any suggestions of what the best thing to do please? Thanks.

  • Hello and thanks for your post,

    I am sorry to hear about your situation. I can understand how unsettling this maybe waiting to hear your results.

    The specialist nurse may want to discuss the results with the doctors when they see you on Monday rather then giving you this information over the phone.

    If there is a change in treatment then they may want to discuss any treatment options with you when they are together. Often appointments are better done face to face but you could try and give her a ring to see what she says. 

    We have some general information on soft tissue sarcoma which you may be useful to look at here

    It can sometimes help to bring a friend or family member as often there is rather a lot of information to process and it can be helpful to have someone to discuss it with afterwards. 

    You may find it more useful to discuss this with one of the nurses on the helpline. Our number is Freephone 0808 800 4040 and the nurses are here Monday to Friday 9 am to 5 pm.

    All the best,

    Catherine

  • Hi Catherine 

    Thank you for your reply. My Specialist Nurse rang me and helped me to bring forward my appointment tomorrow rather than on Monday. It’s not easy but I know the sooner I know what’s happening and what’s the plan regarding my treatment it will be better for me and my family to move forward. Yes my mother-in-law has been very helpful coming with me with almost all my appointments. Definitely helpful to have someone with me. Thank you very much for your help. Hopefully it a better news for me tomorrow.