cancer in lymph nodes found a year after mastectomy

madamreich

My question is not about my breast cancer but about my sisters. It has been a little over a year since her diagnosis of ductal carcinoma in situ. She did have a double mastectomy and reconstruction, thank God no further treatments. She is going to our breast surgeon on Tuesday because she has noticed that four or her nodes around collar bone are swollen and achey. She is scared to death the cancer has come back, I always say positive thoughts. With my cancer being entirely different from hers I am in unfamiliar territory and am curious if anyone has had or knows someone that this happened to. Any input with be welcomed!!!

ballet12

Hi madamreich,

I recall that there is someone on the Stage IV boards who is a board member of the Metastatic Breast Cancer Network (hope I got the name right).  She reported that two of her board members (at MBCN) had original diagnoses of DCIS.  I don't know them or their journey.  So, in theory it is possible.  You would know better than I, but nodes around the collar bone, wouldn't that be considered Stage IV, as opposed to axillary nodes, which would be stages 2 or 3 (at initial diagnosis)?  Maybe you want to post on the board for people concerned it might be a metastatic recurrence (where Stage IV individuals respond).

I hope that there is a benign explanation for her discomfort (infection, etc.) Probably best to wait til after you see the surgeon.  There is a 1 to 2 percent chance of recurrence after mastectomy, which can be invasive breast cancer, even in individuals with DCIS.  If they do find invasive disease in the supraclavicular lymph nodes, that might suggest that she actually did have some invasive disease in the first place that wasn't picked up.  Wishing you the best.  I'd also be very scared.

madamreich

Hi ballet12!!! Thank you so much for posting!! My sister never got a diagnosis of any cancer in her lymph nodes so they did not remove any of them. She was so good about her breast health especially after my journey that her in situ was to small to stage. Our sisterly bond is even closer now with this connection and pretty odd considering that we are both adopted from different families!! Thanks again for your response.

Beesie

madamreich, DCIS by defintion is completely contained to the breast.  DCIS cannot travel to the nodes.  So the likelihood that someone who had pure DCIS might end up with mets to the supraclavicular lymph nodes is extremely small.  Of course, as ballet12 mentioned, there is always a very small possibility that your sister actually had some invasive cancer that wasn't found, meaning that her diagnosis wasn't really DCIS.  In that case, cancer cells could move into the nodes.  But here again, if you search this website for the term "supraclavicular lymph nodes", you will find relatively few mentions, even in the Stage IV forum. 

Supraclavicular lymph nodes are, I believe, related most closely to the lungs and the throat and digestive system.  There are lots of thing that can cause swollen lymph nodes.  Usually it just means that there is an infection and the lymph nodes are actually doing their job by capturing the infection and keeping it from moving to other parts of the body.  Hopefully that turns out to be the case for your sister.