had DCIS, now feel lump 3/4" below the scar

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blah333
blah333 Member Posts: 270
edited February 2020 in Not Diagnosed With a Recurrence or Metastases but Concerned

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.

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  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited January 2020

    Blah - hope you get more answers here. This looks like an appropriate thread. I won't re-post yet again but my thoughts are with you. Hopefully it's scar tissue or a ton of other things that are NOT cancer.

    I would press to see a breast specialist. And probably a trained, certified lymphadema specialist. That way they can teach you how to do LE self-massage if necessary. (most docs get only15 minutes training about LE in their entire medical school journey and don't know much about it)

    But yes, once we've had cancer, our minds automatically panic that it must be back. And yes, some of the issues will always be with us. Eventually you'll find the "new normal" that none of us wants to acknowledge and move forward w/o your mind tripping over the problems every day. Pun intended since I have chemo induced neuropathy and dead feet. I've gotten new shoes and learned how to walk w/o tripping. Do I love that I can't take down the sails from the bow of a moving boat anymore? hell NO - but my life goes on.

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  • blah333
    blah333 Member Posts: 270
    edited January 2020

    Thank you for your response.

    the lymphedema dept of where I get my healthcare is always backed up for appointments, if I have a bout of swelling by the time I finally get an appointment, the swelling is gone. Plus most of the specialists knowledge is about arm swelling, not the trunk. So it was fairly useless and they were dismissive of me because it was not massive swelling, and I am a lean person. I've never been taken very seriously. I'm on Medi-care for low income and don't really have options. I can barely afford shelter and electricity let alone seeing an LE specialist on my own. Friday I will see a nurse practitioner from the breast dept and she will probably tell me to go get an ultrasound. Then based on that I'll talk to a "breast doctor" though at my hospital they are basically fresh doctors entering their breast specialty.

    I'd like to hope this is scar tissue, but I don't see how.. most people on this board who have had DCIS recurrence tended to have multi-focal DCIS like me. I haven't felt any scar tissue in over a year, seems weird it would pop up now. I could try to imagine/hope like a child that maybe the swelling I have in this area pushed some "stuff" around and that's what is causing the bump but I don't feel too optimistic.

    I thought I already found my new normal. If my quality of life has to be degraded any further, I'm not sure I want to live it. I need to be able to use my arms, not feel like a cripple before I'm 40

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  • KBeee
    KBeee Member Posts: 5,109
    edited January 2020

    I have had multiple lumps nad bumps since my original cancer and it is alarming every time. Once was cancer, and the other many times it was not. The cancerous one felt like a pebble or frozen pea. The non cancerous ones felt firm, but not quite as hard. Not sure if that helps or not. Write down everything you plan to ask and make sure your concerns all are addressed. Hoping all is benign.

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  • blah333
    blah333 Member Posts: 270
    edited January 2020

    Thanks. The past few days I've mainly been sleeping/staying in bed, worrying, reading this forum. In less than 24hrs I'll hopefully have some insight.


    Though it's sad - I've found some instances on this forum where someone had an initial cancer and made a post (I'm reading through the whole list of posts in the scared of recurrence section) about a lump worry a few years or so after their surgery/treatment and was told it's nothing or normal tissue, or fat necrosis and I can see in the footers of these people that within 1-4 years after this lump worry, they ended up with a stage Stage IV diagnosis.

    My lump definitely feels hard. Not sure about pea like.. it almost feels more oval than pea like. Kind of feels vessel like, but not sure. I worry due to other biopsy mess ups that I'm just going to get fucked over in the end. I guess I will have to agree to re-biopsying my nodes next time it is suggested, just to be sure.

    My rib that has been jutted out of place due to truncal swelling I had for 3 months (between armpit and shoulderblade) also makes me worry though cancer would have to be pretty big to push bones. I also like to remember my initial DCIS I was absolutely clueless and the only symptoms I had were feeling "off" and fatigue. I have felt fairly strong and my vitality returning, I thought I was going to start 2020 off on the right foot and was finally getting back on track from this. I need to stop reading the forums but it's hard not to obsess until I get answers.


    Also, KBeee you appear in so many of these threads I'm perusing. Thank you for chiming in for all of these women and warning them to be vigilant about checking out suspicious lumps.

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  • wallycat
    wallycat Member Posts: 3,227
    edited January 2020

    I just posted on your other thread; lipoma for me. 1/2" or so below my mastectomy scar. Good luck to you!

    Here's what I posted:

    Apologies on not seeing your post ....I rarely look at the recon or not to recon since I presume those are the questions. I didn't see this post on the worried but not recurrence--or some such board--so here I go.

    I had no recon and several months after my surgery, I developed a small, moveable lump about 1/2 inch below my mastectomy scar. Totally freaked. My breast surgeon was convinced it was a lipoma/fatty thingie. Because he and my other docs were wrong about EVERYTHING regarding my cancer, he said he would remove it right away. It was a fatty thingie and not cancer.

    As for the tingling or zaps or occasional "pulling" feeling---I still get that 12 years out. I think our nerve endings take forever to regenerate and that is what is happening. I would worry if it were 24/7 for weeks on end but here and there, I tell myself it is just the regeneration.

    Best to you and so very sorry that few people post responses. Good to put it in several places. I've had a few of my posts with few or no replies...I have to think people miss it or are busy and not that I am unique :-)

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  • blah333
    blah333 Member Posts: 270
    edited January 2020

    The nurse looked at me today, and is ordering a CT scan. This is very alarming to me as I just expected ultrasound and biopsy. She said it felt deeper, like in the muscle and chest wall. The words "chest wall" filled me with horror. WTF. In my mind CT is escalated more thorough viewing, it feels like they want to do that before knowing the next step ie it could be even worse than just return DCIS. After seeing how floored I was at the CT scan over UT and asking if I should assume I'm just fucked, the nurse tried to tell me "it could be nothing!" but that seems hard to believe.

    My DCIS was multi-focal.. I should look at my pathology report again, not sure what the margins were. But I guess they could've missed something. I'll be so pissed if that is the case.

    Did anyone have a lump they just jumped to CT for imaging instead of UT? I'd probably feel even more alarmed if they wanted to do an MRI - maybe. I do know the different kinds of imaging can offer different kinds of views. However this is also heavy to me because I'll have to wait a few more weeks to know what's going on. I started 2019 off the same way. My life feels wasted, doomed, and bound to end early. I am 37.

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  • santabarbarian
    santabarbarian Member Posts: 3,085
    edited January 2020

    blah I am sending you ((((hugs)))). I am sorry you are in this place of not knowing but please wait to get results before jumping to horrible conclusions. Be glad you have a proactive team. They are being prudent not to mess around, and order the most helpful imaging. That's the very best for your care.

    I can't imagine being 37 and facing cancer treatment. 57 was bad enough, but at least I was in a more chill time of life and had fewer obligations.

    Take care of yourself, take a walk, get enough sleep etc - this will help the stress a little. Finding out facts will come quickly (though it never feels quick).

    xx SB


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  • wallycat
    wallycat Member Posts: 3,227
    edited January 2020

    I agree, it all sucks, but ordering a CT means they are being thorough and not that they expect to find ugly stuff. Remember, DCIS is "pre-cancer"...most clinicians would not consider this cancer since it is a stage 0 . That means nothing has left the areas where they found DCIS, which means it was all contained. Could they find more? Maybe, but if it is DCIS, it is still contained. If they find something sinister, then your doc's proactive order would catch things early.

    I was ill-prepared at 49, just turning 50, so I know how utterly stressful it all is. I'm hopeful this is all fatty stuff or scar tissue, which is very likely. Best to you!

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  • Beesie
    Beesie Member Posts: 12,240
    edited January 2020

    Blah, I am so sorry you are going through this.

    Hopefully the CT scan is clear or shows something the clearly looks benign.

    Meanwhile, I agree that you should dig out your pathology report from your MX. If this is a recurrence, and if you had close margins that were never discussed with you, and the options for treatment were never discussed, that's a very big issue. While the risk of recurrence after a MX for DCIS is usually 1%-2% (because even with the best surgeon, there will always be a few scrapings of breast tissue left even after a MX), with close chest wall margins, the recurrence risk could be into the mid-teens. With ER+ DCIS, either rads or Tamoxifen could have been offered to reduce the risk. In my case, which was similar to yours in that I had a very large amount of high grade DCIS that was multicentric (plus I had a tiny invasive cancer), my close margin was by the skin at the scar line. This was discussed with me and I chose to have more skin removed when I had my exchange surgery.

    If your MX pathology report shows that the margins were clear and sufficiently wide, and if this does turn out to be breast cancer again, then it is either a very unlucky recurrence caused by a few cells of DCIS that remained stuck in a piece of duct that was stuck up against the chest wall away from the rest of the DCIS that was removed, or it is a new primary that developed in the tiny scrapings of breast tissue that remained against the chest wall. Unfortunately there is little you or your surgeon or any other doctor could have done to avoid something like this. And even if this is a recurrence of the original DCIS, while the cells would have started out as DCIS, over the two years since your diagnosis it's possible that these cells could have evolved to become an invasive cancer.


    Those are the possibilities but let's hope you get lucky on this one - after being diagnosed at 35, you are due some luck - and it turns out that what you have is just some scar tissue build-up or something equally benign. I hope you are able to get the CT scan, and the results, quickly.


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  • blah333
    blah333 Member Posts: 270
    edited January 2020

    Thank you all for the responses. In my mind, DCIS is definitely cancer, just not invasive. But that's another discussion. I looked at my pathology report again. My DCIS "lesion" was 6x5x2cm multiple foci, grade 2/3 cribriform pattern, some with central necrosis. It was found via a palpable lump. SO, that is one reason I am not too optimistic.

    The margin for my mastectomy was .1cm

    They also found Atypical Ductal Hyperplasia, but nobody has ever mentioned that to me. My original biopsy also showed PASH. My right (prophylactic breast) showed some fibroadenoma. Maybe this is just some "weird cellular breast activity" though I didn't think that was still possible.

    I felt off for about 2 years before diagnosis, it would be interesting if this is DCIS again, that also took 2 years to grow to the point of being palpable. It is strange that this lump seemed to appear so suddenly. I do feel various pressures in my chest on that side at the moment, hopefully it is just lymphedema related. The stress has exhausted me for today. And I can now see how CT might be the wiser imaging choice, I already have my 6 month ultrasound scheduled in one month.

    Still scouring the board via the search function for relatable stories though, people's footers with DCIS then Stage IV a few years later worry me. There are also lots of posts where a lump turned out to be nothing! But then I see just a few years after that "it's nothing!" update, these people get a Stage IV diagnosis.

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  • KBeee
    KBeee Member Posts: 5,109
    edited January 2020

    I would keep the ultrasound appointment in addition to the CT. I had a chest CT about a month before my recurrence. Mine was not for a lump though, so they weren't looking for that (it was ordered by a GI doc). Do keep us posted. Hoping they find a non cancer reason for the lump.

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  • blah333
    blah333 Member Posts: 270
    edited January 2020

    I will keep that appointment. So far my ultrasound appointments only look at my left axilla area. I was surprised they don't check the front of my chest at all considering I no longer have mammograms. They just wait for a symptom to appear.

    Unfortunately I have to wait 2.5 weeks until my CT scan. I have tried not to think about it and even felt like the lump got smaller, yet when I got out of the bath I could see it in the mirror under my skin and that bummed me out again.... by the time I get info on that, if I need a biopsy that's 2 more weeks of waiting.. my life feels on hold. At least my pre-CT bloodwork all came back in the normal range.

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  • blah333
    blah333 Member Posts: 270
    edited January 2020

    . OK --- so I finally have a biopsy scheduled next week. Nobody will tell me anything about the CT scan I had a week ago. I was finally able to read my results of the initial ultrasound on my online portal. I was quite nervous and expecting BIRADS 4C but no...... BIRADS 4A

    ULTRASOUND FINDINGS:
    There is an oval mass measuring 7 x 2 x 6 mm in the left breast at 4 o'clock. Internal echotexture is hypoechoic. Finding correlates to the palpable abnormality in the left breast at 4 o'clock. This likely represents a complicated cyst. Recommend ultrasound guided core biopsy.

    In addition, ultrasound of the left axilla was performed. The lymph nodes are prominent with the cortex at .5 mm, and stable when compared to the prior study. Recommendations still stand. US core biopsy is recommended.
    -------------------------

    Of course I am not out of the woods yet but I am shocked to see it's even possible this could be benign. I feel such a vivid doom about these things :(

    But I am also annoyed, they wrote int the report:
    "She also refused to come for biopsy of left axillary lymph node."
    INCORRECT. This fall they wanted me to do a biopsy of a node in my axilla that they had biopsied six months prior. Why the fuck should I have them biopsy it again? (so soon) These FNAs to my armpit are miserable. I had to do the biopsy twice because they messed up the first one - that's 3 hours total of laying on a table with a needle in my armpit. That's 3 radiologists poking around, making 4 scars to get just 2 samples. Annoying. I hate all the incorrect info or misinterpretation of events (or things I've said) that abound in medical records. At least we are able to read them online nowadays. I'm going to print out the report and write edits on it and bring it in to my biopsy lol.

    Do you think I could just request an MRI for the axilla? I know that seems overkill. I don't actually want one I just wish biopsying nodes was easier. They did do a mammogram of my armpit once (post mastectomy) to make sure a clip was in a biopsied node, could that be an effective way to look at my nodes? I would rather monitor my axilla (considering it has been stable) than put myself through that hell again. Did anyone have FNAs that actually went well/smooth?


    This process still stinks, I found this lump on New Years Eve, it took 25 days of worry to see that this could possibly be a complicated cyst (despite reading tons of posts about lumps on this board). I will have to probably wait 10 more days before I know for sure.

    My imagination runs so wild, I felt like the sense that my life was going to be ruined and taken over by this (and of course end prematurely when I'm 41 or something). I AM less paranoid about swollen lymph nodes now, if this is benign hopefully I'll be less melodramatic about the next lump. This is my first post-mastectomy bump I've had and launched me into panic. I wasn't even sure if you can get cysts still, in a flat chest. I wish my more logical portion of my mind could have told me to not jump to conclusions; I do have light truncal swelling, ribs pushed out of place from two bouts of swelling (possible costochondritis), and my pathology report mentioned ADH, and fibrocystic changes in my healthy breast (I also had a cyst present with my DCIS). Lots of other, non-cancerous activity has been going on in my chest. But no, the devil on my shoulder wins in my inner dialogue, not the angel...

    Naturally during the ultrasound, I watch the ultrasound screen because it's fascinating, though this tech was a cold robot, unlike my fave tech that answers all my questions if I ask what something is. This was the first ultrasound of the front of my chest post-mastectomy and I wanted to know what a horizontal line was (I think my rib) - she wouldn't even tell me. So I went to look it up later. I then found myself looking all over at ultrasound pics of breast lumps to try and find anything that matched my memory of what I thought I saw lol...... way too hard. But I convinced myself it couldn't be a cyst because those appear as black circles and mine had a little static in it.
    THIS IS WHAT HAPPENS WHEN YOU MAKE WOMEN WAIT TOO LONG FOR ANSWERS!

    Anyway, I hope this ultrasound report is correct and is reflected in the biopsy results... this is too much of a rollercoaster for me.

    But I thought this page was interesting.. posting it here in case any other worried-lump women are searching around the board. Radiology is pretty cool, I just hate the circumstances we are going into imaging for.
    http://www.ijri.org/article.asp?issn=0971-3026;year=2010;volume=20;issue=2;spage=98;epage=104;aulast=Shah;type=3

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  • Kat104
    Kat104 Member Posts: 30
    edited January 2020

    Hi Blah,

    I'm so sorry you're on this roller coaster, and I hope time speeds up for you until you get the biopsy and biopsy results. Obviously I'm no doctor, but I would say go ahead and ask for the breast MRI to get a better picture of your nodes. Grrrr about them saying you refused a biopsy there, but is your actual doctor understanding? 4 scars and 3 hours is too much, of course you're not going to want to go through that again if it was only 6 months ago and the u/s shows stability. I had an MRI-guided biopsy 3 years ago during the original diagnosis for something that lit up in my healthy breast at the time of diagnosis, and I thought that was bad enough.

    Anyway, definitely ask for a breast MRI for your nodes. I just had a small recurrence just under the skin on my mastectomy site about 1 inch or less from where one of the original tumors sat. As part of the workup I had a ct scan of chest and abdomen, and something lit up on my liver. Small, probably a cyst, but they couldn't say for sure. I asked for more reassurance that it is nothing, and my oncologist offered an MRI for a better picture even though she wasn't concerned about it at all. My surgeon was also supportive about giving me peace of mind (he didn't think it was anything bad either). I had the MRI and was already sleeping better that night after looking at the images myself, because I saw that the spot didn't enhance with contrast, which is the behavior of cysts and not cancer. I felt melodramatic having it done and like it was medical waste yadda yadda, but it did the job to relieve me. You will have a biopsy for the spot on your chest which will give you true confirmation, but if it comes back benign, perhaps an mri for your lymph nodes will give you peace of mind too.

    Also, regarding the spot on your chest, that is great news that the radiologist is saying it looks like a complex cyst! My recurrence was teeny tiny but felt exactly like my original tumors with one difference that it felt completely attached to the implant under the skin and wouldn't move at all. The ultrasound was not black anywhere in the center but just "hypoechoic." They didn't mention any possibility that it could be a cyst, and the radiologist said to treat it as "guilty until proven innocent" and recommended an excisional biopsy to get it out. You are absolutely right that the longer we wait, the more we search, and it's not always helpful. But I see it as good news that your u/s report says "likely a cyst." And you will receive confirmation soon. Best of luck waiting to have that done and then waiting for the results. I know it sucks to wait so much and have it take over your mind. :(

    Kat

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  • KBeee
    KBeee Member Posts: 5,109
    edited January 2020

    looks like things are leaning in a good manner. Do keep us posted.

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  • LiveLoveLaugh2020
    LiveLoveLaugh2020 Member Posts: 322
    edited January 2020

    Blah thinking about you and sending positive vibes your way. Hoping that everything is okay.

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  • blah333
    blah333 Member Posts: 270
    edited February 2020

    Oh my goodness.... it took forever but the results were that it is a complex cyst? (I think -- that is what the ultrasound report said). I missed my appoitnment to the clinic, and was told over the phone that they recommended a 6 month followup. My biopsy report has not been updated - but it is benign.

    It's crazy how convinced I was of doom. My rescheduled appointment to the breast clinic is not for another month. I am so exhausted in general from life I had to step away from here. I'm shutting off my internet access too this week because I cannot afford it. But I didn't want to be one of those people who post all over the place about a worry and then never update how it went. I wish I had more energy to make a proper post though. My brain needs a break from this stuff.

    Now reading results from my CT scan which were not previously online. Seems like I have a micronodule on my lung, a low density lesion on my liver, and "Sclerotic foci in left posterior 6th rib and T10 vertebra, which may represent a bone island." Yay - random shit on lungs, liver and bone, the most popular places for cancer to show up. I know I only had DCIS but still..... would be better if I didn't read any of this.

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  • AliceBastable
    AliceBastable Member Posts: 3,461
    edited February 2020

    Most people have random shit in their lungs, we just don't know about it until we start having CTs. As long as they stay about the same size over time, it's nothing to worry about.

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  • Beesie
    Beesie Member Posts: 12,240
    edited February 2020

    blah, glad to hear that the mass was a cyst.

    Now hopefully everything found on the CT scan will also be found to be harmless benign stuff - as Alice said, most everyone has all sorts of crap all over our bodies but usually don't know until we have a scan. I had an "incidental finding" of a lesion on my spine one time when I had a breast MRI. Very scary but turned out to be nothing. This is precisely why full body scans are not routinely done on early stage patients when they are first diagnosed (different than your situation now, of course) because they tend to find a lot more false positives than real positives.

    What is the follow-up plan now to determine what these various lesions are?

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  • sbelizabeth
    sbelizabeth Member Posts: 2,889
    edited February 2020

    My son, who is a radiologist, calls these "incidentalomas."

    When imaging studies are done, one of the reasons they carefully focus on just the area in question, is to prevent finding these random, harmless lesions. When they ARE discovered, then you gotta follow-up, which leads to $$$, worry, more radiation exposure.

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