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Lumpectomy Lounge....let's talk!

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  • 2sdbc
    2sdbc Member Posts: 10
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    Hi Michelle24

    I had a lumpectomy last month and had the radioactive seed and dye injection just prior to surgery. The presurgery procedures were in the clinic. I was super nervous but didn't need to be. Everyone was so wonderful. I laid on a table and had both procedures done by the same doc. A pinch from the lidocaine was all I felt. Then I had another mammogram, no compression, to confirm placement. All good so we walked to the hospital for the surgery.

    The surgery went fine. Doc took a little extra to confirm clear margins which was just fine as I was also getting a breast reduction the following week. The nodes never took the dye, I hear it happens on occasion, so they didn't take any. All looked fine and I will get radiation to be sure.

    Recovery from the lumpectomy was better and faster than I anticipated. I had little pain and in just a couple days I was back to most activities including caring for my two dogs. I actually had an appointment with my plastic surgeon next day. Ice helped when it did hurt.

    They did put me in a surgical bra which I wore for most of the week. No lymphedema yet, knock on wood. Lol


  • chisandy
    chisandy Member Posts: 11,385
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    I was able to go out to dinner the day after my lumpectomy (my sister drove), walked to brunch two days later, and drove four days later. One week post-op I drove to a gig in Rockford (90 mi. ea. way), and my singing partner met me at the venue and carried all my instruments. It felt glorious to perform--and have two full hours without even thinking about cancer.

  • torigirl
    torigirl Member Posts: 748
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    so glad to see this thread got all the traction it did…I pray that everyone is doing well!

  • chisandy
    chisandy Member Posts: 11,385
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    Great to hear from the "creator" herself—it feels like I'm "in the room where it happens" (apologies to Lin-Manuel Miranda)—and that you're still going strong.

  • chisandy
    chisandy Member Posts: 11,385
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    New article in the Cancer Therapy Advisor e-mail digest, showing that not every lumpectomy patient needs axillary node surgery—even sentinel node biopsy (SNLB). Researchers found that for women over 60 with tumors <2cm, ER+/PR+/HER2-, with no lymph node involvement shown on ultrasound, 5-year disease-free survival was 97.7% after SNLB and 98% with no SNLB! Wish I'd known 8 years ago—ultrasounds weren't done on armpits, because it was assumed back then that every lumpectomy would include axillary node surgery (either at least a single-level dissection or the then-new SNLB, the use of which was pioneered by my breast surgeon). I had 4 nodes removed (2 sentinels, 2 "hangers-on," all negative), a nasty axillary seroma that burst, and stage 0 lymphedema for a few months.

    This will be a game changer—lymphedema risk will be drastically reduced and perhaps eliminated for the 80% of patients surveyed who qualified to skip axillary node surgery! Imagine being able to use both arms for shots (getting a flu & COVID vax on the same day, one in each arm!), blood draws, I.V.s, and blood pressure readings—as well as not having to don compression wear to fly, exercise or garden!

  • pontiacpeggy
    pontiacpeggy Member Posts: 6,337
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    You really got the short straw. And it's awful. Glad that there is new thinking. Being able to use both arms for medical stuff would be really nice. Love you, Sandy. HUGS!

  • chisandy
    chisandy Member Posts: 11,385
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    Back atcha, Peggy. But all of us with Stage IA, Luminal A IDC got the short straw. Hopefully, we will be among the last generation to have suffered needlessly. Remember, a generation ago lumpectomy itself was considered dangerously negligent by the breast cancer surgical establishment—and even those with DCIS got chemo and radiation.

  • chisandy
    chisandy Member Posts: 11,385
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    Just read an article in JAMA Surgery that private insurance coverage for lymphedema (LE) treatment is still being stonewalled by insurance companies—which insist that patients fail "conservative" therapy (such as compression wear, manual lymphatic drainage massage—self-performed after instruction) before even granting prior authorization submitted by treating physicians. The most commonly covered therapy (and it's still not commonly covered) is non-programmable pneumatic compression (pump), with other therapies (programmable pumps, debulking surgeries, lymph node transfer, etc.) less and less covered the more invasive the procedures. It also varies by state: LA has 0% coverage of any invasive therapies!

    This is why it is imperative, going forward, for postmenopausal women with Stage IA Luminal A IDC (by far the commonest form) to insist on pre-op diagnostic axillary ultrasound in order to be able to avoid even SNLB, much less axillary node dissection (ALND), because the resulting lifelong LE risk can result in a lifetime of suffering without the possiblity of affordable treatment.

    That boat has sailed for all of us here—but going forward for new patients, it is vital to advocate for themselves and be fully-informed (and persistenly vociferous) patients.

    Cancer Therapy Advisor link mentioning the JAMA article:

    https://www.cancertherapyadvisor.com/home/cancer-topics/breast-cancer/lymphedema-treatments-insurance-coverage/?utm_source=eloqua&utm_medium=email&utm_campaign=NWLTR_CTA_UPDT_101323_RM&hmemail=Wl2BjFStvdWKxjDrPSiNfg%3D%3D&sha256email=373c41b1e48373195abbf97d6cdf8a9fa6d17a829d10ca5a9ca42527ab0f079f&hmsubid=&nid=1346235280

  • chisandy
    chisandy Member Posts: 11,385
    edited October 2023
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    Oh, and not trying to get political here—but it needs Congressional action to remedy; and so long as one party that controls the House would rather "own" the opposing party & voter base than actually govern, it will never get done.

  • pontiacpeggy
    pontiacpeggy Member Posts: 6,337
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    Sandy, women's health seems to be at the bottom (if even that high) of insurance concerns and coverage and certainly not high on a lot of politicians radar (except to deny it). I'm lucky. So far no real problems from my axillary excision (5 nodes removed). But the future holds…what? I don't know. It would be wonderful if women didn't have to suffer like you have.

  • cantabrigienne
    cantabrigienne Member Posts: 2
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    Just curious if any of y’all who had a lumpectomy had any hiccups during your healing? My surgery was 4.5 weeks ago and everything seemed to be healing well until exactly 4 weeks, when I suddenly developed new redness/swelling/pain. I got in to see my surgeon that day and he aspirated some fluid and started me on antibiotics, but 4 days later it’s no better. I’m starting to freak out a bit that there’s something wrong…(it also doesn’t help that I found a journal article detailing cases where surgery or other trauma to the breast “triggered” an inflammatory breast cancer in people who had lumpectomy for a non-inflammatory type of cancer.) I’m planning to mention this to my surgeon today, but I’m fairly sure he’ll think I’m crazy…

  • cindyny
    cindyny Member Posts: 1,200
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    Canta, I hope when you asked today and your surgeon didn’t think you’re crazy.

    I had no problem with healing but I know others have had a hematoma. It’s where blood or fluids fill the empty void left by the surgery.

    Sending hugs!

  • moderators
    moderators Posts: 8,195
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    @cantabrigienne Just checking in! Did you speak with your surgeon today?

  • chisandy
    chisandy Member Posts: 11,385
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    Actually, a "hematoma" is when blood fills the cavity; when non-bloody fluid (serum) fills the cavity it's called a "seroma."

    Starting a week or two after my lumpectomy+sentinel node biopsy (SNB), i developed a swelling in my armpit—an axillary seroma. Three weeks after, when I had my initial consult with the radiation oncologist, he remarked that though the Steri-Strips on my lumpectomy incision had long since fallen off, there were a couple barely hanging on over my SNB incision and asked if it'd be okay to remove them, and I said yes.

    Two days after that I was standing on tiptoe bending over my bathroom sink to get close enough to the mirror to brush & floss. I heard a "hiss," and thought my cat had sprayed…but he was nowhere to be found and there was no telltale odor. Only then did I notice my top and bra were sopping wet and there was pale orange fluid dripping onto the sink. I stuffed a bath towel between bra & top and kept calling my surgeon's office. The phone-triage operator kept telling me to go to the ER, but I demanded to speak to at least the surgeon's NP. After what seemed like an eternity, I reached the NP who told me to get up to the breast center STAT. My housekeeper had yet to go home for the day, so she was able to drive me. Got there and the NP said it'd have to "heal from the inside" and I'd need to pack it, changing the packing several times a day for six weeks. Nuh-unh. I had a folk music conference in Iowa City to play in two weeks and going around the hotel with gooey gauze and gunky cotton wasn't gonna cut it. I asked to see my surgeon's partner (my surgeon was operating that day).

    He came in and said the burst seroma needed to be sutured, not packed. He explained the weight of my "oversized breast" (38 I bra size) had pulled the seroma incision open and it would never otherwise heal on its own. Because it was still numb, I didn't need a local, and didn't even feel the suture needle. But I could sure hear the "gooshing" as he expressed fluid from it. Two weeks later, I was able to get the sutures removed and it had healed completely. The seroma by then was the size of between a Key lime and a small lemon. Within a month it had shrunk to first the size of a walnut and finally a large grape before it disappeared.

    I had a mammary seroma in the tumor cavity—and radiation made it swell so much that my lumpectomy breast was the same size as the normal one. At its peak, it was 20cm. Now it's less than 4cm, encircled by scar tissue. (And I'm back to being as lopsided as I was before the lumpectomy: my R breast is 2 cup sizes smaller than the L. I qualify for a reduction on the L for symmetry. But at 72, I'm not about to go under the knife again to even things out. I've had enough necessary surgeries in the past 15 years to avoid having discretionary ones for vanity).

  • pontiacpeggy
    pontiacpeggy Member Posts: 6,337
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    Sandy, as always you provide such insight and help.👍️

    Thank you.

    HUGS!

  • italianchef
    italianchef Member Posts: 13
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    @cantabrigienne, I had an infection in the underarm where the sentinel nodes were removed - it happened during my radiation therapy. I had to go to an urgent care facility where it basically popped. They washed and disinfected the area, but then I had to have my boyfriend pack with gauze every day until it closed up from the inside. It was two months before that happened (seemed like an eternity). That has been the worst part of this experience so far!