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Recurrence symptoms: swelling and heaviness?

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Hi all,

Has anyone experienced mild swelling or a feeling of heaviness in the breast as a symptom of local recurrence? No pain, redness or itching, but something just feels “off”. Laying on my back feels like something kind of heavy it sitting on my treated breast.

Already have yearly mammo and US next week and will address then, but wondering if anyone has had anything similar.

FYI had ILC stage 1A in 2019, lumpectomy, rads and tamoxifen. All good since then.

Happy Friday all!!

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  • trishyla1
    trishyla1 Member Posts: 57
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    Sounds more like lymphedema. It can cause that full, heavy feeling. It can either be breast lymphedema, or truncal lymphedema. You might want to see a specialist in lymphedema massage. Good luck.

  • melmatt
    melmatt Member Posts: 18
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    Thank you! I didn’t think of that but it makes sense for sure.

  • sarahmaude
    sarahmaude Member Posts: 338
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    I’m going through this now. Click my user name and you can see history. Your mammogram and/or ultrasound will rule out a recurrence, but it cannot diagnose lymphedema or fibrosis. According to my OT, I have lymphedema that is made worse by some fibrosis in my affected breast. She is trying to break up some of the fibrosis. Manual lymphatic drainage works well, but will have to be part of my routine from here on out. I was surprised that although I only thought my breast was affected, my arm was swollen too.

    I’m glad I insisted on immediate follow up with my SO (who orders my screening) instead of waiting for my scheduled appointment 3 months later. I learned that my stage 1 case can be returned to stage 0 (no swelling), but that once we reach stage 2, that’s no longer possible. I hope you get diagnosis and successful treatment soon!

  • melmatt
    melmatt Member Posts: 18
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    Thank you—I was wondering if mammograms could pick up lymphedema so you totally read my mind!

  • melmatt
    melmatt Member Posts: 18
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    Sarahmaude, how long after treatment did the lymphedema develop if you don’t mind me asking?

  • sarahmaude
    sarahmaude Member Posts: 338
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    @melmatt , I was 18 months past last radiation treatment. I’ve heard there are women who go 15 years before having symptoms. It’s a strange thing!

  • hopeful2020
    hopeful2020 Member Posts: 80
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    @melmatt - I did have that and was told I had lymphedema. Tried treatments for a while and nothing worked. I fell down the stairs and breast got swollen like a balloon. The previous site of lumpectomy and radiation got the orange peel look. Breast started to get hard and firm over 3 months. Was sent for an MRI because mammogram and ultrasound in Dec was fine. MRI picked up some non mass enhancements and biopsy showed IDC. The lymphedema is a little tricky - if your hands are fine and just breast, keep a close watch on how your breast is changing. Mine initially started with a small lump which got dismissed as scar tissue as it would go away when massaged.

  • sarahmaude
    sarahmaude Member Posts: 338
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    @hopeful2020 this is a scenario that worries me! I’ve heard a couple of times that the lumpectomy changes make imaging more challenging. I’m glad they found yours. It looks like the tumor isn’t like your first. Will that count as a new cancer or recurrence?

    For others reading this thread, I do have arm swelling that is only noticeable on OT measurements. Most of my issues are in the breast. I did have diagnostic ultrasound on the “area of concern” and it was negative. Your experience will keep me on my toes to ask for an MRI if I am worried. Right now, I am seeing substantial improvement with MLD (manual lymphatic drainage.

    Eff breast cancer and all the lasting effects and worries of recurrence or spread that are absolutely real.

  • hopeful2020
    hopeful2020 Member Posts: 80
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    @sarahmaude - my first one was triple positive. With the ovaries and uterus removed and on Anastrazole, there are no hormones to fuel the cancer. I am thinking it’s the Her2. That’s the one most aggressive and has high chances of recurrence. I am waiting for the FIsH confirmation. If yes, the it would be the same one I think. Last time there was some confusion over Her2 and so we didn’t find out until after surgery that I was Her2+ so not sure if Chemo was effective.

    I did MLD as well. Ultrasound was negative for me too. He searched quite a bit. Skin was thickened at the lumpectomy site. I think rather than worry too much, just make sure you observe things closely and push for the answers. Issue with MRI is it is highly sensitive and can pick up many things benign. So unless there are symptoms, be cautious of MRI or get a baseline done first. My cancer now is not a mass.

  • sarahmaude
    sarahmaude Member Posts: 338
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    @hopeful2020 I hope yours is HER2+ as it has great treatment options. I’m already wary of MRI for the fact that it is hypersensitive as well as my personal negative experience. Not only did it indicate non-cancerous features resulting in a more extensive lumpectomy, I actually got a DVT from the site of the contrast IV. That ended up delaying my surgery and limiting my surgical choices due to being on blood thinners.

    I am on the Signatera screening protocol and had a negative test in October. I’ll get my next one in April.

    Again, thank you for sharing your experience. I’m continually impressed with the smart survivors like you who are here and the way we can stay thoughtful even when experiencing relentless changes in our bodies that all start with malignant cells. Sigh. Feel free to PM me if you want to vent or discuss anything. I don’t come here every day anymore, but do get notifications for PMs.

  • hopeful2020
    hopeful2020 Member Posts: 80
    edited March 23
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    @sarahmaude - It’s funny you say about Her2. That’s what I wanted first time around but looks like most aggressive and chances of recurrence is high. I am hoping they have some newer treatment options.

    What is the signatera?

    sorry to hear about your MRI experience. I am still recovering from that biopsy on Monday. Just painful and so sore to an already sore side. Just wish they would get the treatment started soon!

    I will connect via PM. Thanks for your support.

  • melmatt
    melmatt Member Posts: 18
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    Thank you both so,so much for all of the info. I seriously hate that you’re going through this. I don’t think very many people who haven’t dealt with this understand how many ways this rotten disease can manifest, so you guys are truly a lifeline. @hopeful2020, I am a little concerned because the swelling and heaviness are confined to the upper inner quadrant, which is where the original cancer was—don’t seem to have any issues in my arm or hand. I’ve had orange peel skin since radiation and it doesn’t seem any worse than normal. No idea if it’s related but I have been ridiculously tired for the last 2 months. Lots of blood work and it all came back normal. Mammo and US are Monday. I had ILC and it can be tricky to see. So who knows!

  • hopeful2020
    hopeful2020 Member Posts: 80
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    @melmatt - keep pushing. My blood work is all normal too - just shows maybe spread isn’t there. Good luck with the Mammo and US. Keep watching for changes. What type of ILC did you have? ER PR Her2? Let us know how it goes.

  • melmatt
    melmatt Member Posts: 18
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    Thank you—if there’s one thing I’ve learned from this board it’s that you have to push through with docs sometimes to get answers. I had Stage 1A ILC with LCIS. ER+, PR-, HER2-, 3 sentinel nodes all clear. Mammos freak me out because I had a “clean” one 6 months before. Found a lump near my armpit which turned out to be nothing, but the diagnostic and US found the ILC. My treated breast (lumpectomy and radiation) has been smaller ever since, and now it’s filling up my bra cup. It doesn’t really hurt, it’s just an odd feeling of fullness that I can always feel, if that makes sense. I’ll definitely report back on Monday🙂

  • melmatt
    melmatt Member Posts: 18
    edited March 23
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    PS. It was classic ILC except for being PR-🙂

  • sarahmaude
    sarahmaude Member Posts: 338
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    @hopeful2020 the reason I was saying hope for HER2 is that it leaves a receptor to target. Triple negative (your 5% PR is really low) has many more options than in past, but can be tricky.

    Signatera is a blood test that searches for circulating tumor cells that match my first cancer. I was getting it quarterly, but just switched to biannually. So far all have been negative. And that’s all the info you get…positive indicates a recurrence which according to my MO can generally be found via CT or other imaging. Negative means it didn’t find anything. Go to Natera.com and you can read more. It’s pretty commonly used in colorectal cancer, but most insurance still doesn’t cover it for breast. So far I’ve not had to pay anything as I know they are trying to build evidence that it helps BC. I had an aggressive tumor the first time, so I’m glad my doctor has included Signatera in my follow on care.

  • vlnrph
    vlnrph Member Posts: 493
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    Hopeful2020, by taking an aromatase inhibitor, you are reducing estrogen but not eliminating it entirely. I think of that hormone as being a gal’s best friend. It’s important for bone strength, mood, cardiac health & more. In menopause, our supply drops when the ovaries quit working however some is still present by modification of the androgens we have.

    You are correct in describing imaging as sensitive but not specific. It sees stuff however needs further investigation such as biopsy to figure out what is actually there. My lymphedema began when, after recovering from the general malaise caused by chemo, I resumed gardening. Our son did the heavy tasks however my “easy” work was too much for my arm…

    Melmatt, you already know that lobular cancer is notoriously difficult to detect on mammograms or ultrasound due to its growth pattern, especially in dense tissue. Since it spreads out & doesn’t form a lump like ductal lesions, I required MRI to fully evaluate my situation. Interesting that your site was in the upper inner quadrant. That’s where mine was also!

  • melmatt
    melmatt Member Posts: 18
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    @vlnrph that is wild that we both had ILC in the same spot! Looking at your profile, you’ve had a very hard go of it—I hate to hear that you went through so much and it progressed to Mets ☹️. I got very lucky in that my ILC actually did form a lump, so it was only 1.5cm when they took it out. after diagnosis and reading about ILC I’m always afraid that a mammogram and US will miss a recurrence. It is horribly sneaky. I’m also lucky that I don’t have dense breasts (at least I think I don’t. My mammograms always note “scattered fibroglandular density” or something like that). The thought of this being lymphedema is keeping me from worrying too much that it’s a recurrence. I always thought lymphedema happened fairly soon after radiation, and I’m almost 5 years later. Also very careful not to get blood pressure taken on that side, no shots on that side etc. Hopefully I’ll have good news to report tomorrow.