May 2018 Surgery Support Group
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Final couple of days of May are here already....how is that possible?!?! According to our list we have two more ladies going in this week. I wish you both luck for a smooth surgery, and an easy complication free recovery! You got this kadies
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Day 13 since bmx/SNB and post-op Pathology report appt not until Wed. Nurse actually gave me a copy of released report when I had drains removed this past Thursday, but I am having trouble making heads or tails of it. It indicates that DCIS was found in my left breast (right breast was only one with diagnosed cancer prior to surgery, but I elected to go bilateral), but they are several addendums that don't make it clear. I was also told 3 nodes were removed from SNB, but report mentions 2 more were taken "from tissue", which i am unsure about.
Chest tightness has not eased up for me which is effecting my spirits. That sensation is worse for me than pain
nurse continues to say no exercises or massage yet...0 -
Daizy, FWIW, I had NSM on 5/16 without direct-to-implant. My PS does not like to do direct-to-implant because he wants to see how the tissue will respond. In my case, that was smart since my left breast/nipple are not doing that well post-surgery. I should get my drains out on 5/30. I do have tissue expanders, so I am not sure about NSM with nothing in there, but I imagine if you are keeping the same size or downsizing, you should be okay. I did not pursue the fat-grafting options since my number 1 priority was getting back to running. (I just reorganized our kitchen pantry - that's how stir crazy I am.) Did you do prepectoral reconstruction? There is a forum dedicated to that, although it's not well-titled. Here is link for the thread: https://community.breastcancer.org/forum/44/topics/835911?page=51#idx_1522
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Daisy, you can relax and take a breath. Far as I know, no rush on reconstruction. My PS said I could wait as long as I needed to. I chose to start at the time of MSX. But wasn’t required to start the
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Marian - Glad to hear such good news. We're wishing you a smooth and quick recovery!
Daizy07 - Welcome to Breastcancer.org! So sorry you find yourself in this situation, but this is a great place to come for information and support. Ladies here have tons of experience and advice to share, and we're sure they'll help you make the best decisions along with your medical team. Please come back to let us know how you're doing!
Best,
The Mods
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Thank you ladies for the info and encouragement. I'm very much a planner, but this diagnosis has turned me on my head, and I feel like I'm doing catch up.
My breast surgeon is quite experienced, but not an excuse for me to just follow in line, I should have inquired more. I tried not to look into too many reconstruction options until I could meet with a PS, didn't want to get stuck on an option and then not be a candidate for it. Was working off of implants only and I am okay with that, but now that I am aware of the flap procedures, I'd like to consider them as well. TRAM scares me with the abdominal muscle bit, probably why there have been modifications like muscle sparing and DIEP.
ReadyAbout you bring up a good point on the waiting to see how tissue responds. Thankfully so far my skin and nipple are doing fantastic, just a slight seroma and hematoma further up my chest wall. The sloshing is a bit unnerving, so I'm still wrapping pretty snugly. Some slight bruising still, but honestly with the fluid, it looks strangely close to normal.
(Course there is a large divot where the cancer site was shaved a bit thinner.) Again I really appreciate the response! It has helped my stress level immensely!
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I so appreciate our group here; receiving congratulations and compassion from all of you has been the most valuable input to me -we all know the experience of breast cancer from the inside. I feel connected to & supported by all of you!
3 days post-op & feeling ok (better than expected)! Taking it easy -still using pain meds & Tylenol, but able to expand time needed in between taking the narcotic. And taking a stool softener, somewhat helpful... Contending with shooting pains across my chest which come & go and I too have someextreme itching underneath bandages...
Overall I feel relieved that a big part of this mission has been accomplished! Working to stay present with what my body needs for recovery & healing now, & trying not to focus too much on what will come with my pathology results.
Wishing positive outcomes all around & thinking of those still anticipating your surgeries.
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SPDgirl, so sorry for the way you feel! I find it strange that you can’t do special arm exercises. I wasn’t released from the hospital until I did them once with the PT, and then was told to do them 5 times a day every day. Still do them 4.5 weeks after the surgery. Also, that plastic thingy to breathe in that they usually give you at the hospital have helped me with the chest tightness. Also 5 times a day.
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That plastic breathing thingy is actually called Incentive Spirometer 😘. Had to google it.
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I was just reading the discharge papers from the hospital (12 days after surgery, lol) and it said that if the output from the drains is less than 30ml in 24 hours, call the doctor. My PS never mentioned this and 2 of my drains have been less than 15ml for the past 6 days and the other one has been under 30 for 3-4 days now. My PS has been on vacation the past week so I wouldn't have gotten them out earlier, but I wonder if timing matters at all. In any case, it has been a pain (literally) to keep these things in longer than necessary. I will see him on Wednesday and hopefully get more than a "drive by" appointment - he hasn't been very attentive in appointments, even by my relaxed standards.
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InnaB - My surgeon originally said something about not doing arm exercises the 1st few weeks because of something with lymph system healing, but I was too out of it to understand and then the nurse again confirmed last week that it was too early for me start them yet, But I am about ready to go nuts. Next appt is Wed and seems like forever away! Oh my, the spirometer! That little thing mocked me in the hospital. I haven't used it since the first couple of days, but I will dig it back out!!!!!!
ReadyAbout - so interesting how we all get slightly different instructions on everything. Hospital told me nothing about drain removal, but surgeon went over it several times with us. She had told me when either was 22cc or less in 24 hours to call the office. They even told me they would take them out 1 at a time if one was ready and the other not. Besides them just being annoying, the surgeon had said that the desire to get them out sooner rather than later was just due to the potential of infection at the entry area. The hospital gave us huge cups to measure it with and it was actually inflating our numbers a bit. The nurse gave us like a little medicine cup instead and that made it easier and more accurate.
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Ready- im right there with you with the drains! They are starting to get uncomfortable and painful inside/under the skin! I got see both surgeons tomorrow so fingers crossed at least one comes out.
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I had NSM with tissue expander on Friday morning and ALND. Take home paperwork included arm exercises to start immediately with drains in and others for when drains are out (and spirometer). Papers say drains are ready to come out when 30ml or less fluid comes out a day over 2 consecutive days. I had low drainage in one drain on Saturday and Sunday but it has been over 30ml already today and also noticed my ankles were swollen. Anyone else experience this? Pathology probably won't be back till next week because of Memorial Day and a big cancer convention coming up at the end of the week that a lot of doctors go to, Good luck to everyone else going through this🍀
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Hi, In March I was diagnosed with slow growing invasive lobular carcinoma in my left breast. On May 31 I am having BMX with SNB and reconstruction with TE and I am nervous about it. I am 63, divorced, and living alone. My best friend is coming to spend a little over a week with me after surgery, and I am so thankful. How about after that? Will I be able to take care of myself after that? I've read suggestions on things to do ahead of time, and I've done many things such as moving things so I won't have to reach up. I would like to know if being alone the second week is doable. Thanks so much!
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TriplePHtow, yes! That’s the same instructions I’ve been given, and I found that these exercises helped immensely!
Patchie, it’s going to be difficult. Go to breastcancerfeebies.com. They have a service of some kind that helps you I situations like that.
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My ankles were swollen for almost two weeks. I was told it's because of anesthesia. Once I started walking at least 2 milesa day swelling went down
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InnaB2018, thanks for the suggestion. I'm looking at the site now.
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Kelligirl5
I was tested for ER and PR for both areas of DCIS in my right breast. One of the areas is ER-/PR-, and the other is ER+/PR +. I was also advised that testing for HER2 is not usually done with DCIS. I agree with you, it seems strange that they would test for ER, and not for PR? I'd certainly be questioning their logic or reasoning for testing one and not the other.
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Patchie- hi! Sorry you are here with us but I quickly found this is an amazing place of women full of support, advise, and information! I am 33 and was diagnosed with ILC in April, I had a DMX with SNB on my left side a week ago today. I am doing really well a week later. (I go see both surgeons tomorrow morning for my first follow up so we’ll see what they say!) I can do most things myself now like prepare food, shower, etc. It takes some practicing to figure somethings out but most things are doable. I do have to trouble taking my left arm in and out of my shirt because the SNB site is very tender, and of course no driving for who knows how long! So I’d think being home bound and getting to follow up appointments might be the toughest once your friend leaves. I wish you good luck with your surgery and a speedy recovery
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Drains draining my spirits a bit, along with swollen ankles and general puffiness. My first time coming off of anaesthesia so guessing, as Inna mentioned, perhaps the swelling is related. Visiting nurse coming tomorrow so will inquire to them.
Ready, I would think you should be ready for those pain in the side drains to come out by now - unfortunate that provider vacation could be a factor in your delay...Fingers crossed you will be free of them soon!
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Hi Patchie, I am in week 2 of recovery and I feel so much better than week 1! I can only speak for myself, but week 1 was very difficult. Stay on the schedule for pain meds and have them by your nightstand so you don't even need to get up from the bed to take them during the night. Week 2, the things I still need help with: Driving - I am not supposed to drive until I am off pain meds, and although I only take them when I wake up and when I go to bed, I don't want to drive because SNB has left my arm very tight and unreliable at the moment. Since I'm not driving, I bought a subscription for a grocery delivery service called Shipt and that has been great. Bathing: I can't shower until my drains are out so I am doing the best I can but I can't reach my back. I have to enlist a family member to help but you could totally skip that. Dressing: go with button front tops and elastic waist pants (sweatpants) in case you have trouble dressing. I bought several large button downs at Goodwill and have lived in them and large hoodies the past two weeks. The skin at incisions sites and on the SNB arm is extremely sensitive and I just want to wear soft things. That's about it. I am 49 and an avid runner so I thought I would weather all this better than the average person and I was wrong. I don't think I stayed on top of the pain meds and when the pain hit, it was staggering. Things distinctly improved exactly one week after surgery. I have walked the neighborhood, gone hiking, and done the recumbent bike at the Y, all at probably half speed, but just doing something active has been a balm for the soul. Finally, don't be reluctant to reach out to people - they want to help, they just aren't sure how. When I was first diagnosed someone pulled me aside and said, "When you let people help, you are blessing them." We don't get any bonus points or gold stars for navigating this on our own - ask for help when you need it and someone will be delighted you did. Good luck with your recovery - you've got this!
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InnaB2018 & Marena - Thanks for letting me know that you encountered swelling too. I probably need to walk more and elevate legs when resting
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Marena, we have a lot of fluid pumped into us during and after this surgery. I could not believe how blown up I was when I returned home 48 hours after my BMX with DIEP Flap reconstruction. My legs were so enlarged. My PS said that our bodies are initially in shock from the trauma of the surgery and the fluids flow interstially. It takes awhile for our bodies to get it together and start releasing fluids like they are suppose to do. He said that it can take months for our bodies to release this fluid.
Hydrate, hydrate, and hydrate some more. When you are resting keep your legs and feet elevated.
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hey ladies just checking in. Wow, that first week isn’t for the faint of heart is it? I cannot tell you how much better I felt starting yesterday, which was the one week mark. I’ve managed to get completely off the pain meds because I actually think they were making me feel worse, and even though my surgeon did not advise me to do any exercises yet I am doing some very mild light stretching because it’s helping with the pain. I wondered if anyone was having pain in their ribs and attributing this to the drains? Every time I try and lay somewhat flat in my bed for example, my ribs hurt either on one side or another. kind a hard to tell if it’s from the incisions or drain sites. So, still in recliner and looks like I will be until drains come out. I hate sleeping in the recliner and I am dreaming of the day when I can sleep on my side or stomach again, wishful thinking I know. Glad to hear everyone’s doing well and for those presurgery or just out, everyday has gotten easier. Sending love and healing vibes to all.
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Hi michi - congrats on making it through the 1st week. I had trouble laying on my back when drains were in as well, like the more horizontal I was, the more discomfort I felt. I never entirely found out what it was, but it did improve following the drain removal. I am still in the recliner waiting for the go ahead to sleep on my side.
If anyone is offered the option of pain bulbs, I think they made a huge difference in my 1st week. I have been a bit opposite from the norm here. My 1st week went so much better than week 2 and I am not having a big difference in week 3. However, I think my pre-existing Sensory Processing issues are really getting me.
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Hi ladies! Hope everyone is recovering well and those headed in to surgery this week have nothing but good news!
Marena - I saw that your surgeons bedside manner was so much better the day of! I'm so glad!!
eo2378 - I think the only reason I wasn't tested for PR is because of the Paget's disease. At least I think that's what I am understanding from her. It's simply the type that I had is not expected to have any hormone receptors I guess.
I am back at my first day of work today. Of course this morning I woke up and was having my cup of matcha and started feeling this shooting pain in the incision on my left side. I went to rub it to see if that would help it and its a hard lump there now UGH!! Freaked out of course as it was really the first night I slept without a bra on as the Dr said there should be no restrictions at this point and I hate sleeping with one!! So my first thought was stitches were popping. It swelled so quickly and was bulging a bit at the incision site. Iced and then heated as we were googling to figure out what was going on. It's either a seroma or a hematoma :-( I called the nurse this morning and she agreed. I really thought I was home free dang it!! So back to a supportive bra 24/7 and if its getting worse or not feeling better I have to stop in at lunch time and have her look at it tomorrow. Anyone else?
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Doc's post-op instructions said I could remove the clear plastic bandages 48 hours after surgery. I wasn't brave enough till today (day 6). I have been getting by with sponge baths for now. I may attempt an actual shower today.
I have steri-strips still covering the incisions which can stay as long as it wants. It looks like there's quite a bit of old blood under the steri strips, and bruising all over my chest.
There's a dime-sized area on the darkest bruise on my right side that seems to have lost its skin. I'm waiting for a return call from the surgeon's office to see if that's anything I need to worry about.
The drain output is all over the place. I figured out to "milk" the tubes to unclog them and they're more productive.
Too bad we can't yet have Star Trek style medical technology.
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Great checking in with everyone.
Fasterpussycat; I am glad your surgery is done! I know the heart issue held you up for a bit. My drain output was minimal in one drain a week after surgery and was removed. My other drain is still outputting 100cc about every 24 hours. I agree with you on Star Trek med!
Kelligirl; Wow back to work!! How far out from surgery are you? I am sorry about the hematoma. I have an appt this afternoon to have my surgery site checked. I'm having similar symptoms. Let me know what your outcome is. Hoping for the best!
SPDgirl; Me TOO! Week 2 is much more difficult for me, than week one!! Week one was kind of a breeze for me. Now week 2, I am antsy and want to be more active than I am able. These muscle contractions and odd pressure in the area of the procedure, and in my underarm, the sensations are driving me batty! This too shall pass! We'll move on from it, and it'll be better soon!
Michi; I am told not to so exercises yet as well. I keep wanting to stretch my arm, but then worry, I"m going to interfer with the reconstruction, or healing, or whatever. So, I am moving as I can comfortably move. I hear ya on the sleep issue! I purchases a hospital type bed, just prior to surgery that raises and lowers the back end with a remote button. That's helped. Falling asleep is hard, but once I'm asleep, I seem to do alright. I hope your sleep continues to get better and better.
Bella2013; Good advice!! I had been drinking tons!! Although now I am having to force myself to drink. Not as thirsty and bored with water.
TriplePHTown; I try to walk at least on block, 2 - 3 times a day. I think it helps with blood flow, swelling and overall mental well being. Keep it up!
Readabout; You are HIKING already!! You go girl!! I WANT to hike so bad, but am afraid! I am afraid of falling, of burning out midway through my hike. I am walking, just a block at a time. But it seems the more movement I have the more pain meds I need. I do pretty well with minimal activity and LOTS of rest. Though going STIR crazy!! I drove today, I shouldn't have, but I didn't have a ride to my dr appt. It was difficult to lift the emergency break in the car and open/close the doors. It put my healing in perspective. I am impressed by your level of getting back into the swing of things. Good job!
Marena: How far out from surgery are you? Getting off of anesthesia is the hardest part isn't it?
eo2378; Your diagnosis sounds similar to mine. I had 2 tumors, One was ER/PR+ Her- , The other was ER+ PR- HER-, I have my oncology appt tomorrow, still do NOT have my staging because my surgeon says my Pr(-) in one tumor, and the fact that I have multiple tumors, complicate the diagnosis. Plus when I had my MSX the tissue removed was too close to the chest bone to have a clear margins. Anyhow, this is stressing me because of the unknown level of aggressiveness with my cancer at this point. Do you have your staging? Did having one area + and another - interfere with your staging diagnosis or treatment plan? Do you have your treatment plan?
For me, I am weaning off the meds. Mainly still doing the muscle relaxers regularly due to the constant muscle spasms. I am finding I am SOOOOO tired though. I can barely stay awake for 2 hours at a time. I want to go back to work, part-time, but can't seem to stay alert for very long, if at all. Any of you finding the fatigue overwhelming at this point?
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Kelligirl5: I have a hematoma in my armpit from the SNB and I honestly feel like it gets bigger when I am active and then shrinks a bit when I sleep at night. Have you noticed yours changing size at all? Also, mine is hard and about the size of a small lime. I just walked a mile with a friend and I swear it grew just from that. I have put a heating pad on it at different times but I can't tell a difference. I am sorry you are having these issues, especially since you're back to work!
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ReadyAbout - I just had it pop up this morning, wasn't there when I went to bed at all! Felt the area filling up and a throbbing pain early this morning. It's similar in size, a small lime! It's actually on the left side where they removed a tiny papilloma so it's on the top of my breast but I can also feel it from the side a little where they did the biopsy. I'm assuming the area had more trauma to it since it was touched twice? I was wondering if I should workout tonight or not so if you are I'm going for it!
My surgery was minor I think compared to most! Just the lumpectomy/nipple-ectomy and sentinel node on the right and lumpectomy (I guess?) on the left. I took the pain meds the first night out of fear but stopped after the second dose and switched to Advil. Honestly I had permission to go back to work the next day if I needed to but they recommended 2 weeks if I could. I'm glad I took the 2 weeks to just rest since I had so much going on with the kids that second week! I'm grateful for how well I'm feeling but could use a little nap under my desk right now ;-)
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