Phyllodes malignant tumour

I have recently been diagnosed with a Phyllodes malignant tumour.

The whole process has been confusing as I orginally found a small lump in my breast. I was told this was a fibroadamanoma, this then turned out to be a benign tumour which needed to be removed. I had the operation just before Christmas. In the new year my results came back as having malignant cells where a second operation may be needed to remove another clear margin. Also there was a concern that the malignant cells was near the muscle so therefore my consultant needed some advice from a bone and muscle specialist. I had a CT Scan which was found to be clear. When I returned to see the consultant I was told that I did require a second operation which was to have a mascatamy. I was in total shock as this is not what I was expecting.

 

I am so scared, I am 45 years old and am a fairy fit and healthy person, had never had an operation in my life.

I am know waiting for a date.

Is there anyone else who has got a Phyllodes tumor who could give me some advice. I have so many questions. 

I have looked on the Internet but there is not much about this type of breast cancer as it is very rare.

Hi Podgy.
Just want to say hello and welcome to the forum. I’ve been here ten days now and it seems like much longer. I don’t know anything about your kind of tumour but I do know that the emotions we all go through are completely understood and there’s always someone whose ear you can bend. There’s bound to be someone on here, you can also use the ‘someone like me’ service and they’ll put you in touch with someone. It’s rubbish we’re here but at least we have each other xx

Oh my life!! Just realised my phone autocorrected your name so so sorry ?

Hi, just to keep you posted, I had a second opinion from a large hospital in Birmingham where they decided not to do a mascatamy but to take another margin of tissue from the original tumour. I was so relieved ? to hear this news. I had this operation on 22nd March and have my follow up appointment on 11th April. I am keeping my fingers crossed that this will be sufficient and that they have been able to have got all the malignant cells and that they have not spread any further. I do something think that if I hadn’t had the second opinion then I would have had a mascatamy by now as the first hospital didn’t even offer to take another margin of tissue. 

 

I do think all the ladies out there if you don’t feel confident maybe a second opinion is advisable. 

Thanks for listening and I would like to send all my love to you all who are going through a difficult time. X

Well I can’t believe it, operation went well. Had larger margin removed Queen Elizabeth Hospital was fantastic could do enough for me. Was only in for the day. Had my results yesterday, everything is clear no more tumour or malignant cells. Do not need to go back for 12 months. I am so happy and relived. I am one of the lucky ones. That’s all I can say is if you are not sure about your prognosis have a second opinion. As I have said originally if I would have stayed with the first hospital I would have had a mastectomy at the beginning of March and there would have been no going back. Good luck and best wishes to all you lovely ladies we don’t deserve to go through all this stress and anxiety. ???

Hi Podge,

I’m 26 and have been diagnosed with a malignant phyllodes, so reading your posts was so reassuring. Were you offered radiotherapy? I’m currently on week 3 of 5 and my oncologist couldn’t really provide me with much evidence as to whether the radiotherapy would prevent recurrence or not! Xx

Podge, I am another of those rare people who has had phyllodes. I, too, was told that it was fibroadenoma. Turned out to be PT. That one was benign, so was the one I had a year later. Another year later I had a high-grade malignant PT. That was at the end of last year. I had a mastectomy in February followed by radiotherapy. Best advice I can offer is that you join the Phyllodes Support Group on Facebook. It’s brilliant not to feel alone with this rare beast x