Newly Diagnosed

SBT 8 months ago

4 replies
466 subscribers
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Hi everyone,

I have just been diagnosed with a Phyllodes Tumour in my left breast, I am scheduled for surgery in May, and I'm not gonna lie, I'm bricking it. Has anyone had any experience dealing with a Tumour of this kind, I've been told it's pretty rare. Not sure yet if it's benign, borderline or Malignant. Won't know fully until 4-6 weeks after my surgery. I think the waiting for me is probably worse than the diagnosis. I'm kind of an overthinker, I know I should be positive as my hubby and daughter keep telling me, and I get they are trying to support me, but I can't help fearing the worst. I can't sleep, and I'm struggling to concentrate at work as it's all I can think off. I have my first grandbaby due in 10 weeks and and I'm petrified I'm not going to make it through surgery and never meet her. Then I pull myself together and tell myself I'm being stupid. I keep having reoccurring dreams about funerals. Could anyone tell me this is going to get easier? If anyone has had the same tumour or any advise I would be really grateful.

Thank you x

My Grace is Sufficient 8 months ago

Hi, sorry you find yourself in the club nobody wants to be in. I didn’t have Phyllodes tumour but another rare tumour that is hard to diagnose Tubular cancer. These are a good one to have as the prognosis is good. You are going through the worst stage now waiting on surgery and results. Don’t worry about the surgery, the anaesthetist wouldn’t take any risks. You will be in and out of hospital on the same day. You will be holding your wee granddaughter in no time. Take one day at a time and do what you like doing yo take your mind off things. Congratulations on becoming a nanny or granny!! Hugs

SBT 8 months ago in reply to My Grace is Sufficient

Thank you so much My Grace, this is the best place to ask questions and receive support. Just receiving your reply has literally confirmed I'm not on my own and I'm going to try and take your advice and focus on things I like to help each day. I will be a Nanny I think for now, but whatever she wants to call me in the future is fine with me! I had to google your Tumour, just like I had too with mine when diagnosed. You didn't say how you are doing, but I hope you are fighting fit and well. Very much appreciated. Hugs back to you too x

My Grace is Sufficient 8 months ago in reply to SBT

Hi, I’m fighting fit, doing well and nanny to 9 grandchildren!! X

AClay 5 hours ago

I too was diagnosed with a phyllode tumour in May 2025 after attending a routine mammogram appointment. My sister had just passed away and I was her primary carer/ support, so this hit me hard. Clearing out her home and arranging her cremation and celebrations of life.

After months of back and forth waiting for sarcoma team to make their mind up,, MRI scans and ultrasounds. They found another area in my breast showing something but concentrates on the original tumour. I had it removed in August 2025. It was a borderline phyllode tumour with clear margins, so did not need any further treatment.

Just had another MRI scan to check this other area and I am waiting to hear the results. My breast is still uncomfortable and mind is a mess. I am fully aware these can come back and dreading the next few years.

I hate getting undressed all the time and having people touching me and looking at me. It is a complete nightmare for me .

Wishing you all the best

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