I had DCIS two years ago and am alarmed because two mornings ago after some random electrical/nerve feelings in bed, when I turned on my side and looked down I see a little bb/pea (slightly smaller) like bump under my skin that was not there before. It is about 3/4" below my scar line, inbetween two of my ribs. It does feel quite like what I remember my lump feeling like - my DCIS was originally found that way by a doctor. Though my DCIS was the upper outer quadrant and this is on the opposite side of the incision line. However my DCIS was multi-focal, and the total overall span was 6cm.
For those who have had recurrence OR it turned out to be scar tissue/lipoma, what did it feel like? I was initially told that recurrence would appear along the scar line; I thought that meant literally on the scar line. I made a friend feel this and they looked alarmed/they could now understand what I was worried about. They said to me, 3/4" away from the scar line is still along the scar line (not that it matters). I just feel like I was given a lot of nonchalant information like "less than 5 lymph nodes taken the risk is very low just avoid repetitive movements" -- yet I've been jacked up by swelling and have had ribs pushed out of place and nobody who can help me with that. I have no oncologist, had no radiation, anything - just cut off both breasts and out the door. Even primary care is dismissive of me when I show up for a checkup because I am "young and healthy" and "look great." OK......
Now while laying on my side in bed making this post and noticed a second visible bump, same side (left affected side) under the actual scar, towards the end of it in my armpit where they took the lymph nodes. I can imagine that bump might be scar tissue but I have healed quite well so far and haven't felt bumpiness in some time. Either way this is quite alarming. Of course I jumped to the most doomed conclusion. I remember how "rock" like and granular scar tissue can feel, this seems different :(
If it is cancer again, I know they'd try to remove it. If it's that close to the scar would they just cut along my original scar or make a new mark?
I am worried because I've had swollen lymph nodes since my surgery, that this would somehow be invasive as well, though I know it is *supposed* to be rare to jump from DCIS to invasive cancer. But I'm sitting here even worrying about Stage 4 possibility over this. They did a biopsy on one node and put a clip in it, but those samples came back as muscle tissue. A month later I went back in to redo the biopsy, and a second node had swollen, so they biopsied that one instead as it seemed larger, and it was benign. But the node with the clip never got biopsied. Fine Needle Aspirations are hell, and so was waiting 5+ weeks to find out if I had cancer again. Both biopsies were 1.5 hours on a table having a needle push around inside me. I dread it. It has been terrible seeing people reflect on the decade and excited to start a new year where I feel like I am going to die before 40... missing two nodes already impairs my life. I am a low income person who goes to an educational hospital and feel like I am in the hands of incompetent people. They are also there only temporarily, my breast surgeon from 2 years ago is gone and will never have to face me or if she has a DCIS patient that had a recurrence because she left breast tissue behind.
If it is not invasive is it just surgery/radiation? I wish I had answers now. I am going to have someone look at it on Friday. I imagine from feeling it they will then tell me to go get an ultrasound, hopefully I can do it that day. This forum can be hard to glean info from by doing a search; that is to say what my odds are seems like a mix of scar tissue scares and recurrences. I hate that this will be a specter in my life forever. The people I know who know I've been through this just think I'm done and fine. They have no idea I can barely carry things in my left arm for fear of lymphedema, and having ribs pushed out of place which is uncomfortable and having to deal with dismissive doctors that don't have any information to help me... that I've had to worry about it being back just 10 months after surgery and all the other degradations that come with this. It's alienating and depressing. Would be much easier if I was in my 50s and had peers going through the same thing. But I'm getting off topic now. Happy New Year.
Age 35 at diagnosis
9/2017, DCIS, Left, 6cm+, Stage 0, 0/2 nodes, ER+/PR+
11/30/2017 Mastectomy: Left, Right
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