DeNovo Metastatic breast cancer in lymph nodes only

Living with secondary breast cancer Supporting each other and sharing experiences
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I have been diagnosed with what I have been told is DeNovo Metastatic Breast Cancer however I do not have metastases anywhere else other than in my lymph nodes. I am being treated at Maidstone Hospital and they have told me that it is a common presentation, which baffles me as I cannot find any literature, studies or reports on this presentation of breast cancer. I have Invasive Ductal Carcinoma which has spread through my lymphatic system to my cervical lymph chain in my neck. The oncology team cannot tell me how many lymph nodes are involved other than the two that they biopsied (one in my armpit - axillary and one in my neck VB) but they assume that it is the whole chain from my armpit to my cervical lymph node. I did not have any metastases in any other organ; neither liver, lung, brain, bone or anywhere else. I am desperately trying to find some information about my diagnosis and having asked numerous specialists at different hospitals, only to be pushed back and fobbed off I now have no option but to post this query on a national forum. I am being told that this is a standard presentation and that therefore I should just receive standard treatment and I would have no issues in accepting this if my questions about the cancer and its presentation were answered, however this is not happening. Has anyone out there heard of this presentation or heard of anyone who might know about this presentation of breast cancer. I did not have primary breast cancer either, so this has really come out of the blue. I would be grateful for some information about this and about any specialists (even private) who may be able to answer my questions. Thank you. Elizabeth

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Nope I haven’t come across this in all my reading. However I did google it and apparently it does happen. I included a conversation in regards to it from another respected breast cancer site.

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I haven’t heard of it either and I attend a lot of groups, Forum and Facebook groups. I would get a second opinion from a different hospital if I was you. Have they given you a treatment plan yet? I wonder if surgery will be more relevant given the limited spread.