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
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.
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.
Hi!! I am from Colombia so my english is not the best 
. My story is not identical to yours but… may be the coincidences may help you. I had breast cancer on my left breast on 2018. At that moment, there was 2 axilar lymph nodes involved. I Recived al the traetment and i was in remition until january 2024 when I found a large lymph node on my neck. After many ct scans, they conclude that i had a recurrence on my cervical and mediastinal (chest) lymph nodes. Thank God, at the moment I dont have any other organ involvment. I am treating like a Stage 4 patient… I am in Ribociclib and letrozol. My tumor markers are increasing but ct scans results doesnt show progresssion… so… for now, this is my story. Hoping you find answers and can be healthy and good very soon!
Thank you for your responses. It’s tricky because I can’t find much on it although I do know that it happens but there doesn’t seem to be much research or chat about it. I also did not have primary breast cancer so that seems to make it even more unusual. I will carry on doing some research. Thanks again x
@colombianwarrior your English is great. I was interested to hear that you are having cancer markers tested. Are you being treated in the uk? If so do you mind telling me which hospital you are being treated at? I will ask my oncology team if this is something that they do or I will get it done privately. Is the treatment that you are on reducing or eliminating your cancerous sites even though your markers seem to be increasing? I am on palbociclib and Letrozole and this seems to be working well. Not sure if this is an option for you. Best of luck to you all x
I Live in Colombia , South America, so here I`ve been treating my cancer. My onchologist asks me to take Ca 15.3 (tumoral marker) every month… since september the results have been increasing, but in december I had scans and they showed that the mediastinal lymph nodes were resolved… I didnt undertand why the tumoral marker was increasing but the scans showed cancer was respondig 
. At the begining of this recurrence, some axilar lymph nodes was bigger than normal, but in this moment I dont have any abnormal axilar Lymph nodes. But cervical lymph nodes cancer is not responding the same… On the contrary, the doctor examined them in my last appoinment and one of them measured 3 mm more than it has always measured… so I am confused and I cant conclude if the treatment is working or not… The cancer that I have is estrogen + but Her -…
@colombianwarrior I imagine that they have probably already done this but have you had a biopsy of the lymph nodes in your neck to make sure that it is the same cancer? I will keep my fingers and everything crossed that it all starts to respond for you. Thank you so much for your response. I will ask my oncologist about the cancer marker test. 