Lumpectomy Lounge....let's talk!
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Thank you for the replies. Makes sense. I had forgotten about the receptors and what that means.
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thank you for your replies. I kind of had forgotten about the negative positive receptor status and what that means for the different types of cancer.
I have gone down brassiere sizes and pant sizes since taking letrozole because so much estrogen has left my body which is fine with me.
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thank you for your replies. I had forgotten about the receptor status of cancer and what that means for the different types…
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Wow, Springdaisy--letrozole has had the opposite effect on my physique. I was 192 when I began taking it on New Year's Day 2016. By Apr. 2019 I was up to 211 (after a few limited "yo-yo" periods). The remaining estrogen drain (even a decade after menopause) sent my metabolism into hibernation, along with making me obsess over pasta, artisanal breads & gourmet donuts, It took 2 months of Invisaligns (you have to wear them 20, preferably 22 hrs. a day, and you must remove them to eat--and then brush & floss before putting them back in so snacking is too big a pain in the butt) and then starting a near-keto diet to get me down into the 150s (I'd love to get back down to 145--where I was when Christmas and its sweets hit, then Mardi Gras and pâčzki pastries, followed immediately by Purim & hamantashen pastries and finally Passover matzo concoctions). At my heaviest I was in size 18/20, 2X or 3X, and Chico's size 3 or 4. I'm now (still but snugly) in size 10, M, and Chico's size 1. I'd be delighted to keep it that way: size 8/S/Chico's size 0 would be wonderful but aiming for that might be setting an impossible goal at my age. My MO says that when I drop the A.I. in a year (maybe sooner if side effects become noticeable enough to be disabling), my metabolism may likely rev back up a bit.
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Chi Sandy, I to have gained weight on Letrozole. I used to love sweets and was able to avoid them by not buying or making them but now I crave pasta, salty snacks and breads. I never craved them before so it must be the letrozole. I have gained 5 pounds which can turn to 10, 15 etc so I need to get motivated and find a way to loose weight. Otherwise I feel fine. Very little joint pain which many suffer from. B/P and cholesterol shot way up so I am on meds for that. It could be much worse.
I was actually very happy that my first cancer was er/pr negative and I didn't have to worry about taking this.
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I managed to turn the gain around this time without hitting the dreaded "quaran-twenty." Dodged the "quarantine-fifteen" at the start of lockdown last year (actually LOST weight while locked down, continuing till Thanksgiving), but those carb-fest holidays plus cold weather and a chronically painful callused left foot have been my bugaboo.
Oh, how I miss pasta, pizza, and good artisanal bread! (Desserts, not so much--if I never eat another donut or ice cream cone I will not shed a tear). Being unable to travel to Europe (much less take a cruise) does have its upsides.
Speaking of letrozole, when I went to get my roots touched up and split ends trimmed today, the stylist remarked how much fuller my hair seems to be now compared to Feb.. I must have been in a "telogen phase" for quite a while and have started to come out of it.
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Hi everyone,
Had a lumpectomy for ILC on Aug 11. Just got the pathology report today saying, thankfully, 0/3 for lymph nodes, but 1/4 for positive margins. Of course, I got the path report on late on a Friday afternoon and the doctor's office is closed until Monday, so thank goodness for all of you. 2 questions:
1) Over a week later, my armpit under the sln incision hurts more now than just after surgery. Is this normal? The incision is fine, no redness or infection, but there is a large bump underneath that is very sore, icing it now!
2) Does a positive margin mean a second lumpectomy? I am figuring it does, but just trying to prepare myself. I have read that with ILC, it can be more difficult to get all of it. Would also love any thoughts on how a positive margin reflects on my surgeon? do even the best surgeon's get positive margins?
Thanks for you help on this one! Hope it is ok if I post this same post in another thread, just to improve the chance of me getting some thoughts on this.
GracieGirl
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Hi GracieGirl2016.
Glad to hear no cancer in your lymph nodes. The increased pain in your arm pit near the incision could be that the surgery pain meds have worn off and/or your not taking any pain meds or less than right after your surgery. The bump you feel under the incision could be that a seroma formed. Seromas can cause pain, mine sure did. The seroma is a build up of lymph fluid where tissue has been removed, so where the surgeon took out your 3 lymph nodes. I eventually had mine drained because they wouldn't drain on their own and caused pain. I'm sure your surgeon will go over this with you if that's what it is.
Sorry to hear you had one positive margin. I don't know the answer to your question but someone who does will come along. Best of luck with your recovery.
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Great news about the lymph nodes being clear.
In my case my first surgery did not show clean margins. Yes, I did have to undergo another, wider surgery, much to my disappointment. The ensuing path report showed clean margins excepting some ADH 1 mm from the superior margin, and that was of course no longer in my body. Generally, I believe the standard is to get at least 1mm, preferably 2mm of clean margins. I am sure your surgeon will let you know the next step.
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Gracie, you are indeed experiencing a seroma at the sentinel node biopsy site. Extremely common (even the rule rather than the exception) because the body loves to refill the empty spot created by the removal of tissue. Mine burst the day after the RO removed my remaining Steri-Strips for radiology-mapping. My surgeon's partner said it was the weight of an "extremely large breast" that pulled it open; neither glue nor new Steri-Strips would hold it closed, so he sutured it. (He expressed fluid as he did so--I could actually hear the hissing noise). The sutures held. I had a larger, internal seroma in the tumor cavity, which took a couple of years to shrink. It temporarily made that breast larger than the "healthy" one. The armpit seromas are usually more bothersome because of where they're located, especially when the edges or seams of sleeves touch it.
I had clear margins, so I didn't need re-excision.
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Gracie - I had a re-excision, and I think about 20% need it. My surgeon went in through the same exact spot, so no additional scaring. The lymph node scar is still tender at times, and it's goingon 4 years. The breast scar hasn't bothered me. Best of luck to you!
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I haven't posted here for a while. I'm coming up on 2 years post lumpectomy and have been having some odd tingling sensations in the nipple of the lumpectomy breast. My scar is around the nipple so I wonder if healing can still be happening this far down the road. Anyone have an experience like this? I have my yearly mammo in about a month.
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Rosie, I am a year ahead of you and still experiencing some changes in the operated breast. Mammogram results describe them as usual post surgical changes with a rating of birads 2, benign findings. Assuming post surgical includes radiation effects since rads were after surgery.
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Thanks Beaverntx. I’m glad to know it’s not just me. I have some nervousness about the mammo but your response did help me!
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Rosie, I’m 3 years post lumpectomy and still have sometingling in my breast/nipple area, that had the tumor. It’s the way your body is telling you that your nerves are reconnecting.
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Thanks Stella! Good to know. Weird that things became mostly quiet then started up again. Hoping for nothing to see on mammo next month
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hello, just out of curiosity, I have a question. When pathologists look under the microscope to make sure a lymph node is clear can the really see every single cancerous cell? How big or should I say how small can a cancer cell be before it is or is not seen?
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Springdaisy.....I know the pathology report on 1 of my lymph nodes said that "isolated tumor cells" were found. The other lymph node had no tumor cells. I would love to know the answers to your questions.
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thanks. I was told there were none found in what they looked at in my case. I get curious. I’m always
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Gillyone
So your breasts now 3yrs later feel the same I thought the radiated breast stayed hard I guess not.How much radiation did you do ???
Thanks
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Your not the only one I am triple positive and am due for my 4th out of 6 poisonings tomm. My lump has also shrunk and is not longer able to be felt I am due to have lumpectomy 1st week of January.
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I'm almost 6 years out from radiation. By one year out, my nipple felt a bit leathery and the areola was thickened, but my breast definitely never hardened. And that tingling? Definitely severed nerves reconnecting, which is an ongoing process for years. (Some neuroscientists posit that may be the reason that pet cats prefer to knead on the operated breast because they can sense the extremely faint vibrations from the electrical activity of nerves reconnecting--which disproves the lay theory that it's tumor growth that attracts them).
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Lumpectomy 9/14/21, luckily no positive nodes and tumor was 3mm with clean margins so no chemo - yeah! I have my simulation next week and my first radiation treatment the next day.
I have a couple of questions hoping you experience "lumpies" can answer...
1). I developed a fairly large seroma right under the lumpectomy incision @ 3 weeks out from surgery. I saw the BCS twice (well her PA, I could never get in to see her) and they did not want to aspirate. They cleared me for radiation, which I am was a bit hesitant about since the RO told me it disallows drainage in the future since it turns the seroma "hard".
I also developed some edema from my armpit to the lymph node incision. It's not huge, but the skin is "puffy" and sort of hangs over the incision a bit. Will this go away eventually?
I had read that getting a seroma or any edema shows an inclination to getting lymphedema and patients should be instructed on lymphedema prevention. Would massage be helpful, and at what point? Obviously with sore/burnt breast I wouldn't be able to have massage. The last thing I want is lymphedema.
I asked several times about being referred to a CLT before radiation and my BCS's office said it wasn't necessary.
2). My BCS said that my follow-up will just be the normal mammography 1x/year, and 6 mos checks with her for a bit. That kind of freaked me out as I thought I would get either 6 mos mammograms or MRIs, but she said studies have shown they are of no benefit.
To be honest, some days the fear of this coming back and needing to go through this all over again is petrifying, especially thinking about having to go through a mastectomy, chemo and possibly radiation or having a worse cancer next time that has spread. There are days I wish that I had just done a mastectomy to begin with.
They say that the survival rate is the same with a lumpectomy or a mastectomy, but that the recurrence rate is higher. Can anyone tell me how much higher? I think I read 2-3%. In talking with my MO about hormone therapy, he said my risk of recurrence is @ 5% and hormone blockers would lower that by @ 50% so that's a benefit of 2.5%. If that small of an increase is important, wonder why I wasn't pushed then to do the mastectomy to lower my risk 2-3%? I just hope someday this fear goes away or dies down...
3). How bad, really, are the rads. I though initially you just go in, get zapped, go home and are tired. My RO didn't go into all the other stuff like raging burns and blistering and peeling skin. I've got a good lubrication system set up, I think, but enduring 3 (or 4 weeks if I get the boost) in agony is not a pleasant though, especially since all I can take for pain control is Tylenol due to other medical conditions.
I thought the surgery was the hard part! Thx for having this thread. Everyone has been so helpful. And yes, I know I have a lot to be grateful for. It's just so much info and so many decisions to make sometimes it's like drinking from a firehose and I often feel like I am flying by the seat of my pants. Not a comfortable feeling for someone who is a planner.
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HI macdebbie,
I had several seromas in the arm pit near the scar from the lymph node removal. Mine were drained before and after radiation but I didn't have radiation to the arm pit only the breast. I would talk with your radiologist about whether you can get the seroma drained or not. My surgeon told me the seroma would drain on its own over time but no way seromas from this and other surgeries never drained on their own.
I made it though rads with Tylenol and anti inflammatory meds mostly to treat my back and neck pain as I was on my stomach. T he worst part seemed to be having to goin daily for treatment. I stayed in a hotel because the hosp was out of town. After about a week or so I started getting fatigued and rested when needed. Are you working? My skin got red but I never burned. I followed the advice with applying the creams. After all treatments were done then I peeled but it wasn't that bad. I think you will do fine.
My follow up is every 6 months an MRI or mammogram. But then I'm BRAC20 -
Hi Veeder. Thx. I asked to see my RO before my planning appt and she did a breast exam. She said she was comfortable moving forward as the seroma didn't seem to be that large and she said it's good to have some fluid in the tumor cavity to fill it out (?).
Both she and the BCS thought it was better to proceed with the radiation, as I will be @ 7 weeks out from surgery, and both told me even if I get it aspirated it could come back and they need it stable in order to do radiation since once the planning is done, any changes in the breast wlll through everything off.
Crossing my fingers I do OK with the radiation.
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Hi, macdebbie. Let me tell you my experiences, answering each of your paragraphs:
1) I developed two seromas--one at the lumpectomy site (outer quadrant of R breast), which took a few months to become evident; and one in my armpit under the sentinel node biopsy scar. That one appeared within a couple of weeks and grew to the size of a lemon. The day after I had my radiation "mapping" (during which the remaining steri-strips were removed by my RO) 3-1/2 weeks after surgery, the seroma scar spontaneously burst and gushed fluid like crazy. My BS was in surgery that day but her NP wanted to just leave it open and have me pack it twice a day to "heal from the inside out" for up to 6 weeks. I told her that was not going to happen, so she walked out in a huff and my BS' partner came in. He took one look and said "Let's express this thing and suture it--the weight of your oversized breast pulled the incision open, and without stitches will keep it from closing." He numbed me up, pressed out quite a bit of fluid (I could hear it "goosh") and sutured it closed. Two weeks later the sutures were removed and the seroma shrank to the size of an olive, which was basically just scar tissue.
Your puffiness will eventually go away.
As to tumor-cavity seromas, they don't get surgically drained because they'd only fill back in because of their size. Radiation will temporarily enlarge them; they take a couple of years to shrink to where they are not visible except on imaging. Your body has to "resorb" the fluid, which it will indeed slowly do. I had 16 zaps to only the tumor cavity (not whole-breast), so for about a year that breast had a bulge on the outside that made both breasts about the same size. After 5 years, it had fully resorbed and nothing remained but scar tissue that had surrounded it. (It's about 5cm on imaging--at its largest it was three times that size).
Everyone gets seromas--whether lumpectomy, SNB, or even mastectomy. It's the body's way of filling in a void, so that tissue doesn't collapse in on itself. It is not a precursor to lymphedema. Sadly, the removal of nodes is what poses the risk for lymphedema (LE)--and the risk is lifelong. The more nodes removed, the higher the risk, but it is never zero. That's why you should get fitted for a compression sleeve and gauntlet--and wear it when flying, exercising, gardening (especially to prevent thorn sticks and insect bites), rapid elevator ascents in skyscrapers, and quickly driving up to high altitudes. Because of the lymphedema risk, you should avoid wearing tight jewelry on that arm & hand and try to avoid any kind of breaks in the skin. (Easier said than done if you have cats). A compromised lymph system is less able to fight off an infection from an injury. Unfortunately, though many private insurers will cover compression wear, Medicare won't. (But it will pay for two pocketed bras a year and one prosthesis--go figure).
Your BCS is wrong (and probably thinking about your insurance coverage). Every lumpectomy patient should have at least one consult with a certified lymphedema (LE) specialist or at least physical/occupational therapist qualified to manage LE. S/he will take measurements (comparing both arms & hands) and instruct you in manual lymphatic drainage (MLD) self-massage. (The breast itself doesn't get massaged--but the sternum, clavicular and remaining axillary nodes do, as well as the entire arm from shoulder to fingers. "Massage" is an exaggeration--it's more like gently petting a cat).
Keep an eye out for "cording," which can develop as a rope-like hard "cord" that is usually a sign of a blocked lymphatic duct. (Looks almost like a ligament or sinew). It can run from your armpit to your wrist, on the inner surface of the arm. Your arm might feel tight--and the cord often spontaneously pops (you can even see a little red dot where it pops) and suddenly the cord disappears. An LE therapist has special massage techniques to help a cord pop.
2) For the first 3 years, I had annual BS visits, and "diagnostic" bilateral mammograms and MO visits every 6 months. In years 4 & 5, the operated breast got a diagnostic mammo every 6 months and the healthy breast got an annual screening mammogram. At 4 years, my surgeon discharged me. After 5 years, I now get a bilateral screening mammo annually, and see my MO annually unless I have an issue that worries me.
The risk of ipsilateral (same-sided) recurrence is about 2% with a mastectomy and 3-4% with lumpectomy. (Overall survival is exactly the same with lumpectomy, single and double mastectomy). Even that 3-4% is infinitesimal--the Mayo Clinic decision tree study in which I participated had a couple of graphics, each showing 100 silhouettes. One had 98 gray and two red silhouettes; the other had 96 gray and four red ones. Definitely puts things in perspective and calmed me down considerably. My BS pioneered SNB and nipple-sparing mastectomy--but was delighted when I chose lumpectomy.
Unless you have a genetic mutation, prior history, multifocal tumors in both breasts, or an aggressive (at least Grade 3) cancer, a bilateral mastectomy is not necessary and exposes you to the usual risks inherent in major surgery, not to mention the various annoyances afterward. Your cancer (as was mine) was Stage IA, and "Luminal A" type, the least aggressive. (And your tumor was even smaller than mine).
The recurrence risk reduction from taking anti-estrogen therapy is quite significant. (With stage IA Luminal A, greater recurrence reduction than chemo--which is given far less that in the past). The smallish reduction is from taking Tamoxifen--but take an aromatase inhibitor (AI, like anastrozole, letrozole or exemestane) instead and your recurrence risk drops even more. But turning down radiation so you can drain your seroma is a fool's errand--after lumpectomy for an invasive cancer, radiation is essential to recurrence risk reduction and a longer life; and a mammary seroma will likely fill right back in anyway if drained. (And mastectomy isn't always a guarantee that no radiation is necessary, as if there are positive nodes in the clavicle or axillary "tail" they will need to be radiated). The only women who can usually be safely advised that radiation after lumpectomy is unnecessary are those with either DCIS alone or Stage IA Luminal A invasive who are considerably older at diagnosis--usually 75 or older.
3) Every patient's radiation experience is different, depending on how many sessions and whether brachytherapy (internal), just to the tumor bed (like mine), or whole-breast. The skin response happens from the inside out, not from the skin down like a sunburn. You should go into each session with a totally clean breast and then immediately apply Aquaphor (or whatever your RO gives you) when you go back to the dressing room. Other things that helped soothe me (basically preventing any irritation) were aloe vera (alcohol/dye/scent-free) and calendula cream. I put those on with more Aquaphor at bedtime; then showered it off before going to the radiation clinic. All I got (besides an enlarged mammary seroma) was pink-to-red skin, with no pain or itching. No breaks in the skin. Afterward, my dermatologist prescribed a steroid ointment for every other day for 6 weeks--and the pinkness disappeared. My nipple & areola hardened a bit, but that was it. I didn't even have fatigue (though it's pretty common). You should go easy on yourself throughout your radiation treatments. Due to my age (almost 65 at the time) and non-aggressive and early stage cancer, I had 16 high-dose sessions to just the tumor cavity. 3 weeks (no weekends) plus 1 day.
I was even able to resume wearing underwire bras midway through radiation. That's unusual, I admit--but I'm rather well-endowed. (Even better-endowed back then when I was heavier than I am now).
Unfortunately, I interpreted "going easy on myself" as stopping in at a local pie shop, patisserie or fro-yo parlor after each treatment. Gained 10 lbs. from just that. Should've treated myself instead to stuff & experiences.
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I've been on letrozole for nearly 6 years now, come New Year's Eve. My MO will discuss with me in April whether I can stop, or stick it out till the end of 2022. She admits that most of the benefits of AI therapy occur by 5 years in--but my side effects are very mild so I preferred not to quit at 5 years.
Oh, and as to LE risk, you should NOT allow injections, blood draws, I.V.s, tourniquets or blood pressure cuffs on the arm on the same side as your lumpectomy. (That's why I waited 2 weeks after my COVID booster to get my flu shot, so they could both go into my L arm). My BS' NP gave me a hideous pink vinyl hospital bracelet inscribed "LYMPHEDEMA RISK." No way am I wearing that thing except when going in to surgery. What I did instead was get medical-alert jewelry--a fake-Pandora-style "snake" chain bracelet with an ID plaque bearing a pink Medic-Alert symbol on one side (my LE doc said if EMTs don't see pink, they don't think LE) and my name, LE precautions ("R arm no ndls/bp"), drug allergies, and emergency contact phone #s engraved on the other. I collect Pandora charms anyway--and on my "real" Pandora bracelet I have a rose-gold heart-shaped tag with the same info on one side and a big pink emblem on the other; it clips on to the chain with a lobster-claw clasp.
The bracelet came from N'StyleID (via Amazon), and the tag and plaque from Lauren's Hope (laurenshope.com).
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HI, thank you for your post. I was diagnosed in September with c ER and Pgr positive and HER2 negative in right breast, left has Er and Pgr positive as well , HER2 -equivocal and size is 5 ml, but surrounded in situ area and HER2 is pending for situ area. Surgery will be sometime before thanksgiving followed with radiation and then probably pills. Not sure at this point. Found this forum today and it is very helpful. Anyone from Maryland? Thnaks
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Kava, welcome and glad you found us. Sorry you are now a member of this group no one volunteers to join! Please keep in touch and feel free to ask questions and vent as needed. There is much comfort and wisdom to be found in this community and on the main website. Once again, welcome and come back often!
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Dear kava2021,
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