DCIS in 2017, biopsy for swollen node missing fatty hilum

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I was diagnosed with 6cm (multi-focal) DCIS (left side only) in September 2017 at age 35, and had a bilateral mastectomy. My two lymph nodes they removed were clear/fine. I mainly just recovered from surgery and was told a recurrence would likely occur along the scar line. My surgery was in December 2017. In March 2018, I wasn't thinking and went on a long walk while wearing a backpack which resulted in some light swelling. It resolved itself on its own but they did do an ultrasound that noted a swollen lymph node. This summer in August (9 months after surgery) I was traveling and carrying two heavy bags down several city blocks which resulted in swelling that lasted on and off for over two months, mostly on my side/back by my shoulder blade in a little pocket of fluid (truncal), not in my arms. I figured these were just lymphedema symptoms, although a month after the initial swelling, I did notice my top two ribs seem to jut out a bit more now. I have slight discomfort at times but other times I don't notice anything at all and feel fine. My doctors were pretty dismissive of these swelling issues/too busy to give me an appointment and I had to wait until Halloween to have a breast surgeon/doctor look at it (other than a pointless x-ray at urgent care which was normal). They did an ultrasound 10/31 and seemed alarmed that the same lymph node was still swollen, but it hadn't changed in size so they said we could monitor it (birads-3, probably benign). Then in December, I had my yearly ultrasound checkup and they did imaging of my axilla and noted that this lymph node that has been swollen since 3 months after my mastectomy now has cortical thickening and "fatty hilum not visualized." Of course googling this made me feel doomed......


It seems insane to have a recurrence this soon, especially just with DCIS treated by bilateral mastectomy? Reading the forums here I do know that it is possible though. I figured this swollen node has just been swollen since my surgery, probably due to trauma in the area. I did read that chronically inflamed lymph nodes can lose their hilum, but it's hard to feel optimistic.

My last ultrasound was 12/28..... I have had a cold since Christmas eve and twice since December a lymphnode in my neck (opposite side) has swollen after eating. My subtle lymphedema symptoms (the kind I can feel but cannot be seen or is not very palpable to others) went away for over a month this fall but did get triggered again by some physical labor I did about 2 weeks before my ultrasound (repetitive polishing motions). I have some light swelling now still from that in my armpit area.

I don't even know why I'm posting this... I just have to wait. My biopsy is on Monday. I feel like some elements of this are stacked against me and lean towards malignancy, but in other aspects it seems absurd and rare for this to come back so soon. I tried reading all the posts here about loss of fatty hilum and at least 50% seem to have lead to recurrance. I wonder if any of you had DCIS and this occur OR if any of you have and still have a node that is swollen from surgery. Thanks for reading.

Comments

  • navy1305
    navy1305 Member Posts: 34
    edited January 2019

    Hi blah333,

    I just wanted to offer you support in this waiting game. I don't have a swollen lymph node, but on my last mammogram in July 2018 they said to come back in 6 months because there was something that they deemed probably benign. I had an MRI on Dec. 27 and am still waiting for the results. They did send me the CD of the images, but my oncologist doesn't have the report yet, and I have a mammogram and ultrasound scheduled for this coming Thursday. I have an appointment with my oncologist in 3 weeks. I both love and hate dr. Google.

    Sending you positive vibes!

  • Pi-Xi
    Pi-Xi Member Posts: 348
    edited January 2019

    Blah333, sorry about the lymph node. I hope you fall on the good side of the 50%! Waiting for the results is awful.

  • KBeee
    KBeee Member Posts: 5,109
    edited January 2019

    Hoping it is benign. My son had swollen femoral nodes, some swollen to over 3cm. Biopsy was benign on the biggest, so they followed the others on ultrasound. They remained swollen for over 2 years! They attribute it to his running. It is possible that trauma could cause the swelling, which is my moral of that story. Praying this is the case for you. Keep us posted.

  • blah333
    blah333 Member Posts: 270
    edited January 2019

    Thanks for the responses.

    I feel much better after the biopsy than I did this week waiting for my appointment. The hilum was actually visible afterall, just not incredibly apparent. They also had trouble finding the swollen node, and there appeared to be two. Last month even I could spot the node easily on the screen and discern it from blood vessels etc. It must have moved or changed, especially now that my cold is waning away. Both the woman who did my last two ultrasounds (and helped do the US aspect of this biopsy) and the radiologist who took the samples did not seem too concerned. The tech brought up my last slides and said that there actually hadn't been much change from Oct to December, she just provided an extra point of view. The person who wrote the report also rounded up the size of the node from 4.5mm to 5mm. I was also surprised to learn that the cortical thickening is the aspect that alarms them more than the disappearance of the fatty hilum. I shouldn't have googled..... but I couldn't help it. Birads 4a is about 20% chance. The radiologist said he predicts it will come back as reactive nodes. I felt relief but of course am not out of the woods yet. I got my mind used to every possibility. Afterwards they did do a "mammogram" of my armpit. I didn't even know this was possible (I did not have reconstruction). That tech said cancer is visible in the axilla if it is extensive. So worse case scenario might not be so worse. Just typing this all out for some future worried woman who might do a search on this.

  • KBeee
    KBeee Member Posts: 5,109
    edited January 2019

    Let us know the results. Praying for reactive nodes!

  • blah333
    blah333 Member Posts: 270
    edited January 2019

    So I was just told I will need ANOTHER biopsy because it turned out that the samples they took were of muscle. Three samples..... none got my node. WTF. I'm fucking pissed. I do go to an educational hospital, but felt that the radiologist who did the biopsy was competent. This is so frustrating. My next appointment is in 3 weeks, so I probably won't know for an entire month. And I have to go through this whole fucking process again. Biopsies and waiting for the results are one of the worst experiences of my life. I could tell the nurse practitioner on the phone was a little annoyed at how "upset" I was. My life feels like it's on hold. I also need to be able to plan the next few months. This year has gotten off to a shitty start, now it's going to be clouded until at least mid-Feb. I'm so angry.

  • KBeee
    KBeee Member Posts: 5,109
    edited January 2019

    I would ask for my records and tell them I am going to go somewhere who can get me in sooner since it was THEIR sampling error. They will likely find an opening in their schedule much sooner once they know you are willing to go elsewhere. (I did that with my surgical reexcision and magically, they were able to fit me in the next week).

  • sierramtngirl
    sierramtngirl Member Posts: 30
    edited January 2019

    I'm so sorry about this. Of note, I was diagnosed with high grade DCIS on my right side in October of 2017 and had bilateral mastecomy in December of 2017, just after my 39th birthday. I have the same type of subtle lymphedema symptoms you describe (shoulder blade pain that comes and goes). I'm being worked up for a possible recurrence as well-but just above my scar. The spot is (was-I had it removed on Monday) a 2 mm white nodule. My breast surgeon thought it was most likely a suture granuloma/or keratin cyst from surgical trauma, but said that recurrence couldn't be ruled out without pathology. The waiting sucks, and I totally agree with you- one of the worst parts of this whole awful experience.

  • blah333
    blah333 Member Posts: 270
    edited January 2019

    Sorry for the slow response, I was exhausted by all of this and not wanting to think about it any more....... Seirramtngirl we have a similar timeline, though I am a few years younger. I was told most recurrances would happen along the scar lines and be easy to feel. I hope you're OK. My light lymphedema is always linked to some kind of activity, which is quite annoying. Even lifting a hamper of laundry out of the car in a certain way triggered it. I really don't want to have to lose any more nodes.

    I"m not going to take my records and go somewhere else, what a headache. I'm on medicaid and don't really have much choice for providers. I'm not really in a rush to get back on that table again. I go back and forth between "knowing" it's not cancer and then also feeling doomed, or like health will never really return. It's like my own actions don't matter. Friends telling me to take vitamins etc.. gimme a break. Waiting for a biopsy result is like waiting for a verdict, except it has nothing to do with anything you've actually done or not done. Awful.

  • blah333
    blah333 Member Posts: 270
    edited February 2019

    I had my second FNA biopsy today. It was so tedious, I was on the table for almost about an hour and a half. They took two samples but spent a long time trying to get the 3rd. I'm pissed, they made three different incisions. So now I have four marks on my body for "one" biopsy - four marks for two samples WTF... though I was watching the screen and am pretty sure the two samples they took today will be of the node and not muscle.

    It's depressing, I have two swollen nodes now with cortical thickening... the one they took samples today was not the original node that they were monitoring that has been swollen this whole time, and this node seems bigger. This is odd to me but may also indicate that they fluctuate in size, so maybe that's a good thing vs. being malignant. But I won't know til around the 20th or so. Dreary. Blah day.

  • KBeee
    KBeee Member Posts: 5,109
    edited February 2019

    Frustrating. Nodes do grow and then shrink when reactive, so that would be good news, but it sounds like a horrible ordeal.

  • blah333
    blah333 Member Posts: 270
    edited February 2019

    My results were benign. But what stress and such a long fucking wait to find out........ and on the phone the woman put me on hold for awhile after she brought up my file, I was bracing myself for bad news. I wish she just said "benign" vs. "no metastatic findings" -- it sounds better that way, ha.

  • KBeee
    KBeee Member Posts: 5,109
    edited February 2019

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