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recurrence after stage III TNBC?

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Not sure if this is the right place for this. I was dx stage III TNBC June 2017 with a 6cm tumor. Had neoadjuvant Taxol, tumor grew to 10cm, was switched to AC in September 2017. Tumor shrunk to about 3cm and I had a double mastectomy end of November 2017. Then had 6 weeks radiation at the beginning of 2018 (was supposed to have 4 cycles of Cisplatin but only had 2 and was taken off due to side effects). Then had 6 months of Xeloda. So a ton of treatment. Finished Xeloda in October 2018 and had exchange surgery end of November 2018.

On New Year's Eve, I felt a small lump almost exactly where my initial biopsy was. The problem is, I have no idea what my "new" breast is supposed to feel like. I've never really gotten feeling back in the entire area since my mastectomy in 2017. Even my underarm is still somewhat numb and so it all feels a bit thicker. The left breast (prophylactic mastectomy) feels great. There's not a single lump or bump. It's nice and smooth and "loose" - it's like a half inch lower than the right breast.

The right reconstructed breast is firmer, which I was told to expect due to radiation. But on the outer lower quadrant, there is a lump and the rib feels way thicker than the left side. The lump feels exactly like the lump that I found 2 years ago that grew and turned out to be cancer.

My oncologist felt the lump. She said it felt like a pea. She sent me for an MRI and to see my breast surgeon. He's out on medical leave so I saw his PA. She sent me for an ultrasound. In the end, the MRI showed BIRADS 2 but the radiologist who did the ultrasound told me there was "absolutely nothing" seen on the MRI or the ultrasound, not even scar tissue or fat necrosis. So I asked what is the lump I'm feeling then? No one gave me an answer. I would've been fine hearing, "Oh, it's just scar tissue" or "It's just fat" but to say there's nothing there when I feel it is not comforting.

It's almost 2 weeks later and the lump feels more palpable to me and the whole area feels thicker. But now I'm afraid to say anything. I feel like I'll look crazy and paranoid of recurrence.

My oncologist said recurrence around the area of the initial core biopsy a common site of recurrence. That's why she was initially concerned. For anyone who had a recurrence after mastectomy and reconstruction with silicone implant, what did it feel like - the lump and the whole area? How did you distinguish the lump from scar tissue or fat necrosis?

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Comments

  • santabarbarian
    santabarbarian Member Posts: 2,310
    edited January 2019
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    I do not know about recurrences, but I wanted to validate you listening to your inner voice. Do not be afraid to look paranoid. You should be able to get to the bottom of it to your satisfaction.

  • kbram
    kbram Member Posts: 63
    edited January 2019
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    You need a biopsy!

    Kathy

  • pesky904
    pesky904 Member Posts: 263
    edited January 2019
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    Thanks for replying! I agree, I need to listen to my gut. And I would prefer a biopsy to know for sure, but I doubt my MO is going to agree since nothing showed up on the ultrasound. Not even sure if you can biopsy something you can't see on imaging. My MO said she ALSO felt what I was feeling, but I haven't heard back from her since she sent me off to see the surgeon two weeks ago.

    The surgeon suggested contacting the plastic surgeon to see if he had put in his notes whether there was any scar tissue in the area in question, or maybe if he'd placed a suture in that specific area. What are the odds, my plastic surgeon is ALSO out on medical leave! So I left a message and his PA was supposed to check the surgeon's notes for me and reply to my MO.

    My original cancer grew so fast. I found the pea-sized lump in late January and by mid-May it was 6cm. I'm pretty high risk for recurrence, even with all the treatment I had. Triple negative, large tumor, less than a 1mm margin, residual cancer burden of 3...I hope my MO wants to investigate this further.

  • Parrynd1
    Parrynd1 Member Posts: 343
    edited January 2019
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    Until you know it’s nothing for sure then it’s something. I was in a similar situation. TNBC stage 3, did neoadjuvant chemo, lumpectomy & reduction, still had 2cm tumor left before surgery so after I did more chemo, then 6 weeks rads. During rads, maybe halfway through, I felt 2 small lumps thinking scar tissue and changes from rads. Turns out it was a recurrence and I had these lumps looked at by 3 separate breast doctors who said they were nothing. Come 2 months after rads and I’m stage 4 now. You are your best advocate and your doctors, in my opinion, should feel as worried as you if they know anything about TN. It’s not your regular (if thats a thing) BC. Best of luck to you.

  • Flynn
    Flynn Member Posts: 208
    edited January 2019
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    I'd keep pushing and if you can't get clarity, get a 2nd opinion. TN is just too dangerous to take a wait and see approach, IMO. I have a cyst that I found in my arm pit. My bs sent me for u/s right away and we found out it was a cyst and then a couple months ago it felt bigger. My new MO (we moved) sent me for u/s and they confirmed size is same but scarring from rads might account for feeling different. They offered to look at it once a year, if I want, for peace of mind. You're entitled to make sure they have a handle on the situation and to make you feel that your concerns have been reasonably addressed! KUP

  • CaliKelly
    CaliKelly Member Posts: 198
    edited January 2019
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    I felt lumps in my axilla, post mastectomy, turned out to be surgical clips, then later felt lumps around the recon, =fat necrosis. But they showed on US .On my good side, all of a sudden a lymph node is palpable, US showed normal node, no explanation why it's palpable now.

  • Whirlaway
    Whirlaway Member Posts: 16
    edited January 2019
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    Ditto what everyone else said! 

    I had a false alarm (luckily) but my medical team took it very seriously and ordered tests right away. TN tumors are so fast growing. My original tumor grew to 6 cm x 3 cm under 2 months and I am petite. 

    Wishing you best of luck and hope it turns out to be benign!!

  • moderators
    moderators Posts: 7,928
    edited January 2019
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    pesky904, sorry you are going through this. You've received great advice from the others. Sounds like a biopsy would be the sure way to figure out what's going on. We hope you get answers soon, and that it is all benign!! Medicating

  • pesky904
    pesky904 Member Posts: 263
    edited January 2019
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    Thanks for all of your advice and insight! Do any of you know if a biopsy can be done if they couldn't see it on ultrasound?


    I'm so confused by why they didn't see anything on MRI or ultrasound. My MO and I both feel it. It feel bigger to me now, two weeks later, but that might be because I am more aware of it.


    What kind of lump doesn't show up on imaging at all? I thought MRI could pick up pretty much anything?

  • KBeee
    KBeee Member Posts: 695
    edited January 2019
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    If you can actually feel the lump, they can surgically remove it for biopsy. I insisted on this when I had my recurrence, even though all the docs said it was "nothing". A second tumor (small) was found later which was not visible on MRI. Imaging is a tool, but is not perfect.

  • Parrynd1
    Parrynd1 Member Posts: 343
    edited January 2019
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    Kbeee is exactly right. These tools areperfect and neither are the technicians reading them. I recently found out I now have 2 large tumors now in my left breast that none of the imagine or techs have talked about even though they are large enough to reshape that breast. I luckily noticed them and brought it to MO's attention. It's scary to think the system and tools we have aren't perfect and I keep thinking I have so much cancer the tech was more worried about vital organs and such. Every part of my body is important! So I made sure to let my MO know this. As much as our doctors are on our team and apart of our cancer army we are still our best advocate and I think it's very important to listen to your body and instincts.

  • pesky904
    pesky904 Member Posts: 263
    edited January 2019
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    I guess I wish I knew what my new breast was supposed to feel like. I’m hesitant to push for anything. It took my oncologist several minutes to feel the lump that I think feels completely obvious. Plus my rib feels really thick on that side, as if it’s swollen, and the skin over the rib feels lumpy. It’s a little bit sore to the touch.


  • KBeee
    KBeee Member Posts: 695
    edited January 2019
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    I do know that my radiated side is much more lumpy than my non radiated side, and it has more scar tissue. That being said, if something new appears, it warrants attention.

  • pesky904
    pesky904 Member Posts: 263
    edited January 2019
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    I guess I can’t really even classify this as “new.” I just had my exchange surgery on 11/29/18.

    Maybe this is how it’s supposed to feel.I guess I’ll just watch this lump and make sure it doesn’t get bigger or change at all. Although I swear it’s already gotten bigger.

  • Parrynd1
    Parrynd1 Member Posts: 343
    edited January 2019
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    I said the same thing, but didn’t notice the changes till it was too late. I don’t mean to scare you, but until you k ow it’s nothing then it warrants attention. I left mine alone and now I have cancer in my brain, the lining of my brain, lungs, skin and both breasts. I’m on my sixth treatment and nothing is working so far. This was all less than a year ago. Your situation makes me think of where I was exactly and I only say these things to hopefully prevent another person like me. I waited and and gave excuses. Cancer can’t recur during radiation? It’s just changes from surgery or radiation or radiation and surgery. You have to do what’s right for you obviously, but I hope your story doesn’t go the way mine has is all.
  • pesky904
    pesky904 Member Posts: 263
    edited January 2019
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    Parrynd1, I'm so sorry! I guess the reason I'm even hesitating to push further is because absolutely nothing showed up on imaging. If they said they saw something but it looked benign, that would be one thing, but they saw nothing. The radiologist did the ultrasound herself at Dana-Farber and she made me feel crazy when she looked at me and said, "Can you point out where you think you feel something, because there's nothing there." I told her my oncologist felt it too and she just shrugged. She said it could just be fat since even though I had a mastectomy, there's still a little bit of tissue left.

    Today it feels like my rib is swollen right where it meets the breast and the lump feels like it's situated either on the edge of the rib or right above it. It's a hard little immovable spot. Still waiting to hear back from my oncologist. :(

  • Parrynd1
    Parrynd1 Member Posts: 343
    edited January 2019
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    One of the initial recurrence tumors didn’t show up on mammogram, US or any imaging I did either. I was lucky I guess that the other one did so they believed me. I hope your case is just fat necrosis or something not as serious though

  • pesky904
    pesky904 Member Posts: 263
    edited January 2019
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    Parrynd1, it didn't show up on imaging but you felt it?

    I can now hold this lump between two fingers. Two weeks ago, when I pointed it out to my oncologist, she had to feel around for several minutes just to find it.

  • bella2013
    bella2013 Member Posts: 370
    edited January 2019
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    I am not triple negative but after finding a 5cm (Er+, Pr+, HER2-) lump in my left breast I ended up having BMX with DIEP Flap Reconstruction. I did not have chemo or rads. Four months after surgery 2 lumps appeared close to my left axillary nodes. I felt that it was probably fat necrosis or scar tissue but I wasn’t going to live with my assumptions. I went to see my breast surgeon. He didn’t think I needed to worry but he was going to go by the book. He sent me for an ultrasound and said they might want to do a biopsy. They did the US but could not determine if it was cancerous. Before they moved on to do the biopsy they wanted to try to do a mammogram. A mammo would indicate if it was fat tissue. Indeed it was fat necrosis. I had my PS remove them a few months later when I had my Stage 2 Reconstruction surgery.

    My BS also used those two lumps as reason to order a PET Scan which came back as NED.

    Have you had a breast MRI? Continue to pursue this until you get a diagnosis one way or the other. Considering you had an aggressive cancer your team should be taking this very seriously.


  • pesky904
    pesky904 Member Posts: 263
    edited January 2019
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    I had an MRI and an ultrasound on January 10th. The results say BIRADS 2, but the radiologist who did the ultrasound told me that she saw "absolutely nothing" on the ultrasound and that she had looked at the MRI and there was nothing there either.

    I told her I can feel it and my oncologist felt it, so how could there be nothing at all showing up? Even if it's scar tissue or fat, shouldn't it be visible on the image? Plus, I thought BIRADS 2 means they see something but it's not cancer and BIRADS 1 means they don't even see anything. Got no real answer, she just said that even though I had a mastectomy, there is still fat and tissue left.

    I wasn't happy with that answer so even though it was 5:00 PM, I went all the way back up to the breast cancer floor and asked to see my breast surgeon's NP again (my surgeon is out on medical leave). I told her I'm not comfortable having no idea what it is and being told they can't even see anything when we can feel it. She suggested contacting the plastic surgeon to ask him to review his notes. She said maybe he noted that there was some scar tissue in that specific area, or maybe he noted that he placed a suture there. (fyi, this is not a suture, unless a suture feels like a hard, rubbery ball.)

    So I contacted the plastic surgeon, and my luck, he's out on medical leave too! They left a note for his PA to look over his notes and that was on January 15th and I still have heard nothing.

    If it's fat or scar tissue, that's fine, but I would like to know and I feel like being so high risk, it's not okay for them to just say, "We're not really sure, but don't worry." Or worse, by saying nothing came up on imaging, it's like they don't believe me when I say I feel something.

    I suppose if this happens to be cancer and it grows as fast as the last one did, I won't have to wait long before it's evident something is wrong, because the last tumor grew from the size of a pea to a huge 6cm lump within a few months. But if it's something and just doesn't grow as fast as the last one, who knows.

  • trishyla
    trishyla Member Posts: 698
    edited January 2019
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    Do not take a chance, Pesky904, not with triple negative. You're right, it is an aggressive cancer and can grow very quickly. I've had 3 areas of concern since my BMX on 4/17. All 3 times either my MO or my BS have ordered further tests. Fortunately they've all come back negative for a reoccurance. As my BS (a wonderful human being, by the way!) says about TNBC: Constant vigilance!

    Be persistent until you get a definitive answer.

    Good luck.

    Trish

  • pesky904
    pesky904 Member Posts: 263
    edited January 2019
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    Thanks for the reply. I guess my concern is my MO already sent me for further tests (MRI and ultrasound) and nothing showed up. So technically, "nothing" on an imaging test is negative for recurrence, even if they don't know what it is I'm feeling in my breast because they didn't see it on imaging.

    Still can't for the life of me see how I can put my fingers around this palpable small rubbery lump and yet nothing showed up on an MRI or an ultrasound. Ultrasound I can maybe see, but MRIs are supposed to be great at picking up even the smallest things.


  • KBeee
    KBeee Member Posts: 695
    edited January 2019
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    Since it is palpable, ask for a surgical excision. Hopefully it is benign. Getting rid of the consant worry about what it is will be priceless. This way you eliminate the "what if".

  • Flynn
    Flynn Member Posts: 208
    edited January 2019
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    Diagnostics just aren’t perfect. I mentioned on your post in TN that I had MRI’s that came in at 8cm then 6cm within days of each other (one was to enter a clinical trial so it was done by a different team) but u/s also had the tumor at 3-4cm. Every result came in different which upset me a lot. My MO said the reason that we only diagnose cancer from biopsies, not imaging tests, is that imaging isn’t there yet. I just urge you to have it felt again especially if it’s more palpable now and tell them you need an explanation for what you’re feeling. Please don’t let anyone make you feel difficult for wanting an answer to a perfectly reasonable question.

  • pesky904
    pesky904 Member Posts: 263
    edited January 2019
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    Thanks. I just left a message with the plastic surgeon's office to find out if the surgeon's assistant has looked into the notes on my surgery yet. I would like to know if the surgeon noted anything about the area in question. That seems like the best place to start. If there was something there at the time of the surgery (scar tissue, a suture, etc) he surely should have noted it, right? If he didn't note anything, then I'll go back to my MO and ask her to feel it again and see what she thinks.

    Very stressful. I desperately need to start looking for a new job and I'd like to know I'm recurrence-free so I can just get on with things!

  • Flynn
    Flynn Member Posts: 208
    edited January 2019
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    Sounds like a good plan! BTW, I’m not trying to stress you out at all. Odds are that there is a perfectly reasonable explanation but I just think you deserve to know what it is:)

  • pesky904
    pesky904 Member Posts: 263
    edited January 2019
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    The surgeon's office just called and said the PA said it's probably an internal suture but I can come in if I want to. So I'm making an appointment for next week.

    Okay, who knows what an internal suture should feel like? It seems to me that a) it would be really tiny, and b) it wouldn't feel rubbery and "lump-ish." And since my surgery was on 11/29/19, why would an internal suture be more palpable now, when it should be in the process of dissolving, shouldn't it? But what do I know.

  • trishyla
    trishyla Member Posts: 698
    edited January 2019
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    Some of my internal stitches have "barbs" on them so they stay in place better. Those feel just like lumps.🙂Hope that's what yours are.

    Good luck.

  • pesky904
    pesky904 Member Posts: 263
    edited January 2019
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    Do they feel rock solid or rubbery?

    I also feel like if the surgeon was going to place a suture in the exact spot where my original tumor was, he should have noted it. Nothing like giving me PTSD, haha.

    The PA said there's really no way for her to know what is in the area I'm talking about so I would need to go in and be seen. I feel like the surgical notes should indicate exactly where any sutures were placed.

  • buttonsmachine
    buttonsmachine Member Posts: 339
    edited January 2019
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    Pesky904, I'm a little late to the conversation, but I just wanted to tell you to get that thing biopsied asap.

    Long story short, I had all the things you mention. I was told it looked fine on two ultrasounds (wrong), that it's fat necrosis (wrong), and that it might be a suture (wrong). In my case, it was my cancer and it wreaked havoc while we "watched it." It spread to two lymph nodes and my skin, and made a huge mess.

    I am concerned in your case that the lump is by the initial biopsy site - that is a common place for recurrence, and exactly where I recurred too. Also, higher grade, more aggressive cancers are more at risk for this anyway. I don't want to scare you, I just don't want you to go what I went through. Hugs and best wishes to you.