Lumpectomy Lounge....let's talk!
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Sorry to hear that moonbeams
Hoping for the best of this not best case scenario!0 -
Moonbeams, what happened on the operating table was something called "scoline syndrome." "Scoline" is one of the nicknames of the powerful muscle relaxant succinylcholine (the other nickname you may hear on TV medical dramas during ER scenes is "sux"). It's administered once you have gone "under," via IV-push, to make sure you lie perfectly still, without even a flinch, during surgery. Unfortunately, before it makes your muscles go floppy it makes them momentarily contract extremely strongly. You usually don't begin to feel it till the next day, and your description of it feeling like the result of a thousand situps is pretty apt. Mine felt as if I had gone to the gym for the first time, but with all the Nautilus machines set on max resistance. Ask if it's safe for you to take an NSAID (you don't want to risk bleeding). Otherwise, "ice, ice, baby!"
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Esther01: I hope you're doing better today? I'm just seeing these posts now. Chemo has been tough - I'm in it now - still with a sore boob and arm. And Moonbeams, I'm so, so sad to hear they found more cancer and in your nodes. That's exactly what happened to me.
It's all so upsetting, isn't it. I hope you're muscles are healing and feeling better now and whatever it is you have to endure, we're all here. Somehow, some way - we'll all make it through. I'm not sure how, but we will. A cousin who went through a lot of this said to me "one minute at a time." And honestly, that feels most realistic right now - based on how hard chemo is. One minute at a time. See, I just made it by writing to you all! 
Love to all.0 -
I’m 7 years out. Lumpectomy,chemo,rads and hormone therapy (I’m still on).
Anyone’s breast get smaller.It’s harder and smaller like a whole cup size.I’m large breasted so I have this big hanging breast on one side and a nice solid one on the other. Most people don’t notice it but I know when I look I can see the size difference.
Anyone else have this?
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Sweetbanker- I've said in in here before, my radiated breast is perky, like it was at 18. While my other one looks it's 61 years. HA! So yes I'm in the same boat, except I'm quite small busted. One nipple sits on high, other seriously an inch plus lower. Friends say they don't notice it, but I wear tank tops with bra built in and to me it's super obvious. But I'm at the age where I just don't care.
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I was told, so believed and expected, that my radiated breast would end up smaller. That has not been the case. It's bigger than it was, and bigger than my non-cancerous breast by a lot. It's pretty difficult to figure out sports bras because if I fit the bigger breast, the small one ends up with chafing. And if I fit the small one, the bigger one hurts. Well it hurts all the time, but this just adds insult to the injury.
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Radiation can make a breast larger (at least temporarily) because it can inflame and therefore enlarge the tumor-cavity seroma. I always had asymmetrical breasts, with the left at least a cup size larger but both drooping like a beagle's ear. After lumpectomy & then radiation, the right breast got bigger--same cup size but rounder. It's shrunken to its original size now that the seroma is gone, but it's higher and perkier. But in a bra it's hard to tell the difference--and with clothing over a bra, impossible to notice.
I've been on letrozole 5-1/2 years now. 1-1/2 to go.
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Moonbeams, how are you doing today? Did they get the pathology report back yet with more information? I have been thinking of you! I've been posting away in the "June Surgeries" room and wondered where you were...
MaineJen, that is so wise and true... One day at a time... When we're right in the midst of something, it's hard to remember that.
I feel like God gives me strength for the day and I'm so grateful, and then I lose my peace the next and panic over something small. I'm trying to remember to remain in the moment and deliberately find joy in something every day. Today it was just sitting in our yard enjoying the flowers, listening to the (virtual) fountain that we don't have, and enjoying Hawaiian music.
You all have such a great sense of humor. I think that really helps as we go through this. I was laughing today at the ouch sounds I keep making when I move the wrong way. My sister has been taking great care of me as I heal, and is always working on her laptop. Today I joked that she should just put on her white noise so she won't have to hear me rattle around the house moaning and groaning. I'm actually surprised that I'm still having pain 9 days after the lumpectomy and 11 node removal. It's mostly from the painful half goose egg under my arm because my arm has nowhere to go but to rest on it. I did finally just today find a comfortable sports bra. The first three were like a painful bruising vise on my ribs and stitches. I still have a hard time looking at my scars and stitches. I switched to Aquafor today and it feels better. Can't wait to have the stitches out on Wednesday.
Tomorrow I'll call the lymphedema specialist and ask them to measure my arm and show me how to put the compression sleeve on again. I lost too much weight this past year so my arm was too thin for the ready-made ones so the local sleeve place made me one out of cloth and cut a hole in it for my thumb. Well, that's the only part which I know where it goes. Maybe another place will have a sleeve that fits me and doesn't need a user manual.
I had a good pathology report even though I had 5 positive nodes. My surgeon thought he was targeting just 5 nodes, but apparently 6 more came along for the ride. He is confident that he got it and that the node involvement didn't go any further, and says it has good prognostic value that the majority (6) were clear. He still recommends radiation, so I have some appointments set up to pray about whether I'll be doing it or not.
MaineJen, I'm thinking of you as you go through chemo. I am so sorry, that is so difficult. Are you able to fast the day before? A friend going through chemo says that she feels better and has less side effects when she fasts the day prior. One day you'll look back with amazement at your sheer strength as you walked step by step through this. May we all keep moving forward recovering to health day by day.
Sleep well,
Love, Esther
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It took about 2-1/2 years for the radiation swelling around the seroma to abate. My R breast didn't shrink to its current size till autumn 2018.
Esther, check out LympheDivas.com. They have an online guide as to how to measure, and over 100 patterns & colors of sleeves, gloves & gauntlets. (You should wear a gauntlet--comes from the wrist to halfway up your palm, with a thumb "spica," or tube--or a glove with the sleeve to avoid hand swelling below the wrist). They ship very quickly, in less than a week. Once it took only 3 days!
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Wow, thanks ChiSandy, I'm going to check them out tonight! Sounds better than the free makeshift sleeve they gave me. Sometimes you get what you pay for
Blessings,
Esther
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Esther, I got a sleeve/gauntlet set that looks like tattoos and another in leopard print. (Can't wear their gloves because the fingers are too long for my tiny paws and they don't make an extra small). Remember, you need at least Class 1 if not 2 compression!
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Hi, Esther01.I chuckled that you were listening to the "virtual fountain you don't have" - that's hilarious and so sweet. And I have to say I had a bunch of nodes removed and it has taken weeks and weeks for me to even begin to feel "normal" in that spot - so please be patient with yourself. I know we're all different, but I found the spot where the nodes were removed to be wayyyyy more sensitive and slower to heal than the spot where they opened up my breast (twice!). I'm only now starting to sleep on that side - but I have to shift over and over again - it's just such a sensitive spot, isn't it? I know we want our surgery spots to heal - and fast! - I'm so sick of all of it already! But it takes time. Anyway, hang in there with that.
I haven't fasted the day before each infusion. I've never heard of that (and I've heard of a lot of approaches LOL). Everyone is so different - and we're all on different regimens for chemo, so I don't know if what your friend is doing is different from me. I'm glad it helps her. They have me load up on all sorts of meds the day before, including steroids, and my tummy would hurt a lot, I'm sure, without some food the day before. Truth is, I haven't eaten that much since I started surgeries - and chemo - my appetite was so suppressed due to the emotions of the situation when I was first diagnosed...then the surgeries and healing...and now the poisons in my system are screwing with my appetite and such. Also, I've had complications with my liver (because - you know, the never ending roller coaster we're on) during chemo, so I'm feeling extra yukki - on top of the regular awful side effects. Anyway, thanks for asking. I'm going to get myself out for a walk now - it's super hot out but I don't care if I have to limp, waddle, strolll, walk slowly, whatever, I'm getting out for a walk every day.
Sending love and healing thoughts your way - and to our whole crew. We'll make it - one way or another! I may make it to the finish line a lot skinnier and with a smaller boob and less nodes and no hair, but I'll be here! And frankly, as long as I'm here for my kids - to watch them grow up - I'll take it!
HUGS
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Anyone still having pain 9 months after surgery? My surgery was beginning of October and I've had my 6 month check-up and they said everything looked exactly as it should. Over the last two weeks I've been having pain again sporadic but can be intense...I finally just called and made an appointment today to try and see my Dr. I'm sure it is nothing and I'll feel dumb when I leave...lol...I hate this feeling of always just wondering what every little pain is...
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Hello! This thread has been so helpful. I had a lumpectomy with sentinel node biopsy on June 14. The surgeon ended up taking four lymph nodes, which I wasn't expecting. I thought she would only take one. The surgery went smoothly, but what has amazed me is my lack of energy one week later. I am a person that always has tons of energy and rarely slows down. This past week, I feel constantly exhausted no matter how much sleep I get. The pain was very manageable. I only took Tylenol and Advil. I see the surgeon today for follow-up and to go over pathology results. Thanks everyone for posting your experience here. it has been a big help!
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Oh yes, general anesthesia will knock you for a loop. Well it does me, anyway. Post-op, it's never the pain that slows me down, it's getting rid of the anesthesia and not puking.
Good luck w/ your recovery and be kind to yourself as you heal.
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Dear MKOM59,
Welcome to the BCO community. Good luck with your appointment today. Post back and let us know how it went and what help and or support you might need.
The Mods
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I’ve been told it takes 30 days to completely get general anesthesia out of your system. Please be patient with yourself and your body and allow yourself to heal
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crsharper: I am 2 months post lumpectomy (my 3rd and my largest - the scar is over 2” long). This is the first time I still have occasional discomfort of the area. If I lay on it wrong, or my bra isn’t supportive enough, or if there is pressure on that side of my breast -it’s uncomfortable and I’m very aware of the area. This is very new for me.
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Major surgery is exhausting--I was warned that I might have extreme fatigue afterward, too tired to even walk upstairs to the bedroom. That didn't happen, but my experience was unusual. Don't overdo.
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I only had a lumpectomy ( they took out quite a chunk (3.6 IDC and 4.0 DCIS) and it was like a train hit me. I had it on a Thursday and I did a 60 mile round trip on Sunday and driving down the freeway I didn't think it was such a good idea. I was absolutely burned out from my job at the time and was ready for vacation but it was surgery instead. Dukemom2, good to be reminded how long it takes for the anesthesia to get out of your system.
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Thanks, everyone for the supporting comments about fatigue after surgery. I saw the Dr. for post-op yesterday and learned that all lymph nodes were clear as well as clear margins. She also confirmed that the fatigue was normal and that it would take a while to subside. So, good news all around! Feeling very optimistic.
She threw me for a loop when she referred me to a medical oncologist to discuss chemo. So far, each practitioner has seemed confident that surgery and radiation would be all that I required to beat this. She said it was a slim chance, but they might feel it necessary. I can't get in to see the medical oncologist until July 20, so I guess I'll have to wait and see what they say.
Very happy to have found this forum.
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Hi, MKOK59: That's great news about clear margins and no nodes. Phew! Really good!! I'm so happy for you!!! I can tell you it's no fun to have to go in for a 2nd surgery.
Anyway, I think - even if you don't end up doing chemo - that it is so good that your doc referred you to discuss it with an oncologist. It doesn't mean you'll end up doing it at all, but hopefully your oncologist will help you understand the big picture - and more specifically, help you understand your own, unique situation. In my meeting, I learned about something called "oncotype" - which is really important in determining whether or not to proceed with chemo. It's relatively new (as in the last few years, I think) - and it is a solid "grade" of a sort that helps the oncologist determine who should go through chemo, and who is in that "gray area" - and who won't benefit at all. Anyway, that may be something they'll want to talk with you about. Regardless, making sure your team covers all bases is thorough and means (from my point of view) that they're really looking out for you and that they care a lot about making sure you're doing everything you need to do. Just my perspective. Anyway, yay for the good news! Hope your healing moves along smoothly.
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Just because you will be seeing a medical oncologist (MO), it doesn't mean you will get chemo. It's a misconception that the only thing MOs do is prescribe chemotherapy. Don't freak out about being referred to an MO: almost every breast cancer patient (except those who were hormone-negative DCIS-only and had bilateral mastectomies) gets assigned an MO--unless you live so far out in the sticks that all that's available are general surgeons & primary care docs. If your tumor was ER+/HER2-, your MO will (if the surgeon or their NP hasn't already) send a sample of your tumor to be genomically assayed for either OncotypeDX or MammaPrint scoring. Back when I was recovering from my lumpectomy in 2015, the "low-risk" (no chemo necessary) cutoff score for Oncotype DX was 17. 18-25 was "intermediate risk" (chemo may be an option), and >25 "high risk" (chemo recommended). My score was 16, no chemo necessary (nor even indicated). But since the TailoRX study came out a couple of years ago, "low risk" was expanded upward into the low 20s (except for those 50 & younger with scores of 15 or higher). Your MO will manage all non-surgical and non-radiological aspects of your breast cancer care going forward--including endocrine (aka "hormone") therapy for the next several years.
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Thank you, ChiSandy for the encouraging words. They told me yesterday that they sent my tumor off for the Oncotype DX test. In the meantime, I have an appointment with the radiation oncologist. And, they said the Oncotype results should be back by the time I see the medical oncologist. Very grateful to live close to a great cancer facility that houses all of these professionals.
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my friend says she has a cancerous tumor the size of a marble and she will have a lumpectomy soon. She claims the doctors said nothing about taking medication after like the aromatase inhibitors that so many of us take. Is that unusual to have a marble sized tumor they know its cancerous and the docs don’t bring up aromatose inhibitors?
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Hi Springdaisy, use of the AI's is limited to specific biology of the tumour. If your friend is not estrogen reactive the Aromotase Inhibitors are not indicated. She may have other treatments instead. Hope this helps.
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One of my BFFs had Grade 3 DCIS in multiple locations in one breast, totaling >5cm. The tumors were ER-/PR- (they usually don't check HER2 status in DCIS, especially Grade 3 because it's assumed most DCIS is HER2+). She opted for a bilateral mastectomy, as her breasts were very small and she hadn't worn a bra in decades, the other breast had atypical cells, and she has no desire to jump into the dating pool in her 70s. Because of that (and her nodes were negative), she required neither radiation nor any anti-hormonal therapy. Perhaps your friend's "marble" is also confined to a duct and hormone-negative. If so, and her nodes are negative for cancer, she'll probably get only radiation after she heals from surgery. But she & her care team can't know for sure until the post-op path report comes in.
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