I have been diagnosed with a malignat phyllodes tumour whuch is very rare. I found someone with experience of the same thing on here and she has been enormously supportive.
Hi, I was diagnosed with a malignant phyllodes tumour at the end of April. I'm waiting for a mastectomy. There are 3 hospitals dealing with my case. It's really hard trying to find out anything. I keep trying to be positive and believe there are doctors and nurses out there who are working to help me but I'm just fed up now.
Thanks for that, didn't realise you were helped through PM's as Annagoanna1 to my knowledge hasn't posted to the group, but great to know she is helping others with this fairly rare condition
I had my mastectomy last July and radiotherapy ended in November. I am due to have my first follow up CT scan soon and will also be measured for a prosthesis.
I feel great physically, it's just the emotional turmoil that's hard to deal with. I manage ok by completely ignoring the cancer until I get an appt letter, then I start the whole worrying cycle again.
I don't find the doctors particularly encouraging. They deal strictly in facts, I understand the need for this, but they never even say anything like "I'm pleased to see..." or " that's positive." Their manner is a reminder that I have\had a serious disease . It always brings me down.
