December 2019 Surgery Group
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Hello Ladies! Hope everyone is feeling better every day!
PTAmomTX, I'm so glad you like the Wanayou bra since I ordered some just an hour ago! Supposed to come tomorrow so I can get out of this awful binder (with my surgeon's blessing). I'm only a couple of days behind you - and thrilled my drains are out!
I've mostly been lurking on this surgery board, feeling a little out of place... my BMX was prophylactic; I was diagnosed with LCIS 5 years ago (with a strong family history and genetic counselor assessing lifetime risk at 76%) and could no longer handle the twice yearly monitoring resulting in numerous call-backs and biopsies. (Couldn't handle the tamoxifen either.) So far things are going well. My path report was all benign, but since I was filled with all manner of atypical stuff I feel comfortable that I made the right choice.
Sending prayers and good wishes to all you strong ladies out there!
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Hi December Sisters!
Hope everyone had a great Monday. I thought I would hate having surgery around the holidays and I do but I am loving all the freebie days my family is getting to stay home and help me out.
PTAmomTX... congrats on the drains. It's a whole new world without them!! Glad you got some more pain meds. Uncontrolled pain is the worst!!
Heartshaped...your wrapping or binding should not cut off your circulation. You might need to adjust it for different positions. For example, if you wrap standing then sit down it might ride up into your armpit area. If you wrap sitting and then lay down it might crunch up in the middle. Once you are wrapped try moving around to test it. You want compression but not restriction if that makes sense.
Squatchmama...I am not real good with the private messages but I can answer your question here. You had asked what I needed for surgery and if it was all expensive. I did not buy much. I bought 2 shirts off Amazon that had pockets in them for the drains. I think they were around $30 each and I bought a mesh bag to hang over my neck to hold the drains about $15 when I took a shower. Everything else was just my normal stuff I gathered from around the house.
Anyone have any big plans for New Year's Eve? We are staying home!!
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Yay PTAmomTX!!! I got my last one out today (even though my out put seemed borderline)😂. My PS even asked me if I wanted my first fill today, I declined for a week.
I love good news!!!
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So, with the drains out and sport bra okayed, I’ve decided to institute top-free time. 10 minutes. That’s all I ask. No bras. No tops. No wraps. No drains. 10 non-shower minutes a day to sit without wearing anything above my navel. I should have asked the doctor if they had any issues with it, but I’m not sure I would listen. I will set a timer. And then I will put it all back on. But just ten minutes. (Where I also get to lock the bedroom door to keep out hubby, kid, and my in-laws.)
Ahhhh...
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PTAmomTX - I have started doing this after my shower - I went flat and still have the steri-strips on so I like for them to dry really well before I get dressed. It is liberating and also helps me get used to how I look.
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I walk around the house with nothing but a zipped up sweatshirt. I do lots of time without a bra. Oops. Nobody told me not to that I remember. They make it so much more painful
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Happy New Year! Not sure about the rest of you, but I will be asleep before midnight. Here is hoping for a good 2020 for all of us
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I emailed my care team and am now able to sit quietly without having the bra on. The problem was that it was rubbing on the bra band. I put in maxi-pads, but that still really doesn't address the damage already done. I also found that the mastectomy bras I bought go too high under my arm, but the surgi-bra is probably too tight (it's 4 inches smaller than my normal band size). I think I'm going to go back to my original bras, but with pads, and get my husband to help me put it on. I'd rather be dependent on him than lay waste to the area on my bra band.
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Hi all. And Happy New Year!
My surgery was three weeks ago and tomorrow I have the appointment with the surgeon to see the pathological report.Nervous.
I'm going to walk to clear my mind.
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Hi all and Happy New Year!! It will be for me - I saw my BS yesterday for my post-op and the results of my path report were negative for any cancer on the right and negative for any residual cancer on the left!! The report did indicate LCIS in both, but BS said there is only 1% to 3% chance of recurrence. I still feel very good since my BMX, have not had any pain at all. Actually stayed up to ring in the new year last night, lol, but then right to bed. I finally found a more comfortable sleeping position and didn’t have to get up a million times to stretch my legs.
Next steps are to see MO on the 9th where I’ll find out when the Tamoxifen will begin. Then, schedule the next appt with PS for DIEP flap.
I was told to continue wearing binder 24/7 until my drains come out next week.
cero - sending positive thoughts your way for your appt tomorrow 🤞
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Congrats Tesla!!!!! I’m jealous of the no pain. I still can’t make it through the night without waking up in agony.
Cero- you are in my thoughts! Fingers crossed.
Nadi- I feel you with the binder stuff. That’s why I took one of each of the different bras I bought into both dr appointments with me. I did discover that one-which fits the band and lower area great, is too tight up above. I wore it last night for 2 hours to go to dinner and had new bruises. It has been put in time out/to be donated. It was the pricy BROBE one too. I think it is trial and error. My left expander isn’t as filled as the right side, so one fits good, but not on both sides.
I was also told to stop playing with the fridge magnets sticking them to the magnetic ports on the expanders under my skin. Yes, at times I’m a 9yo. But we have cool magnets from our travels all over the world so I found it funny. Sometimes you need a little whimsy when dealing with this shit.
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Happy New Year everyone! Wishing you all a new year filled with happiness and health.
It’s been a long week with a LOT of company. We passed around a stomach bug. The last of my company leaves tomorrow. I’m so ready to have some quiet time!!! I just want to have time to sit and process it all and cry. I met with MO on Monday and thought that chemo was not on the table, but she ordered an Oncotype test and now I have to wait three weeks for that to come back. I’m frustrated as I was ready to get radiation started and finished. The reality of this big C word is setting in and I’m depressed about it. Just because the surgeon removed the tumor and margins were all clear, I still have suspicious cells and basically get to have the fear of return in the back of my mind... I mean forever could be a long time. Ugh! The waiting game continues. I just want my old life back. I want to play tennis. I want to have the empty medical history. I want to feel like my healthy diet and exercise are working at fighting disease. Maybe tomorrow I’ll have a better outlook.
You’ve all been busy here so I apologize for not addressing anyone. My thoughts are with you and I’m hoping for the best for all of us!
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TeriJ, I get it! I had some neighbors trying to come over last night and I didn’t answer the door. I just wanted a cry. I met my BS and PS last week and got my last drain out. My BS says he’s breaking up with me and sending me to my MO next week to start Tamoxifen. I’m confused as so many ladies with similar diagnoses have different treatments. He said he took my case to some meeting and the oncologists aren’t recommending an Oncotype test as they feel it wouldn’t help. Also no radiation or chemo. I should be happy, but are they doing enough? He did say he was glad I opted for a double mastectomy as they were surprised I had LCIS/DCIS after surgery both of which weren’t seen on all the other tests and the LCIS meant it could have traveled to the other breast. I’m Grade 1, but high at a 5 and my DCIS is Grade 2. He did say no LVI, so that was good.
Tesla, that is great news! You are a warrior! I am still in pain while I sleep, but getting the last drain out is awesome. I just want to get back to exercise, etc. Are you just doing Tamoxifen as well? I’m confused by all the different treatments🤪
Cero! I’ll be sending positive thoughts your way
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TeriJ- just sending hugs
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Happy New Year!! Hugs to all! I’m so glad to hear that many of you are getting back clear pathology reports.
TeriJ- I hope you are able to get some rest and quiet.
I had one more drain removed on Monday, so I only have one left. It will be three weeks on Wednesday. I hope I’ll have low output the next couple of days so I can get it out on Friday
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I had my surgery Friday morning, single mastectomy and 8 nodes removed. I've had surprisingly minimal pain in my chest (a little tender at the drain site), but man, it feels like I've got pine cones stuffed in my armpit, and occasionally feels like someone jammed a stick in my pit and dragged it down my side! 😫 I chose to stay flat on my surgery side and my other breast is small (& I'm petite in general), so I've got a too-big-for-me binder I've dubbed "The Torture Device" that reaches from my armpits nearly to navel. I'm supposed to wear it 24/7 but I too give myself daily 15 min breaks while I'm stripping my drain line, since my binder covers so much of my line.
I had outpatient surgery and went home at noon, and the rest of Friday was pretty chill but I had a scary wknd. The back surface of my arm from top of shoulder to elbow went dead numb, with deeper crawly, tingly, jolting nerve pain, and I puffed up with lymphedema and a seroma in my upper chest/armpit area. I had to wait til Monday to talk to a nurse about it, and I had no idea if it was "normal" or a concern, or if my binder was helping or hurting since most of the fluid is collecting above the binder. My surgeon had told me I was "very low risk" for lymphedema, so I'm pretty bummed and hoping physical therapy helps nip it in the bud. Also hoping the armpit pain stops keeping me up at night, since it appears nobody thinks we need opiods after major surgery and I had to beg twice to get the 10 pills I got 🙄
I got my pathology report already, and although everyone thought the 5 months of neoadjuvant chemo had shrunk things quite a bit, I still had large amounts of residual cancer in my breast (40mm, plus areas of previously unseen DCIS, so good thing I opted for a mastectomy), and 2 of my 8 removed nodes had significant cancer as well (8mm and 3 mm).
None of it changes my treatment plan so far, which is radiation in Feb and continuing on with Herceptin infusions for a year. All in all I'm feeling like this is NOT an awesome start to the new year, but at least they got clean margins and I can check surgery off my list.
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Hi,
Wanted to check in and wish everyone a happy new year and to stay strong as we enter the next steps after surgery 💕
Teri, I’m so sorry about the change of plans. I also didn’t have chemo on my radar, and I’m waiting for the results of the onco test
I’ve convinced myself I won’t need chemo so that I don’t worry about too many things at once, it’s just too overwhelming. Hope you can rest over the next few days.Cero, hoping for good reports for you.
Heart, I had a very weird armpit/ back swelling , though not down the arm. My PS gave me antibiotics for ten days although I don't think it was an infection, just my poor body swelling and readjusting to the also dubbed torture devices. It has gotten better over a few weeks.
Since it is a new year, I decided to focus on doing one healthy thing a day to get me back to my favorite activities. I gave up vegetables after my diagnosis because they failed me- if a lifetime of eating super healthy, sports and exercising didn’t make a difference, wtf? I have since let vegetables back into my life.
Wishing you all restful days now that the holidays are behind us.
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RhodyGirl55- I like your idea of starting one good thing at a time. I’ve always eaten healthy too (hippie parents). Since about a week before the surgery, I have dove head first into a pool of sweets. Candy, cookies, cakes... You get the idea. I think it’s time to get that out of my system. Thank you for the motivation.
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Badluckbdaygirl: yes Tamoxifen is the planned treatment for me. I do not need chemo or radiation, thank goodness.
I’m sorry so many of you are having pain issues. I’ve been so lucky so far, but I know that after the DIEP surgery, it will probably be a whole lot different. I’m also glad that I did not need to have tissue expanders put in. It has always confused me why some ladies have them and some do not. It is so true that we can have similar diagnoses, but such different treatment plans.
I am also hoping to get back to using my elliptical again. Dr. says I just can’t use the moving arm bars right now. While I’m off work for the whole month of January, I also want to do one good thing a day and try to keep it a habit.
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Thank you all for your positivity and thoughtfulness and hugs. We had another busy day, but we got to be outside and it was sunny. I was also able to do some pushups as I’m hoping to get some strength back before rads begin. My armpit it still sore and I have a big lump where they removed my node it’s super annoying. But honestly how can I complain about such a small thing. So many of you are dealing with drains and the compression wraps (boy was that uncomfortable, yet comforting!)
Teslafied: Congrats on your good news!! You have been through a lot! I’m happy to hear you smiling and I bet you’ll like the elliptical to get back into moving more!
Badluckbdaygirl: good to hear you don’t have to do chemo or radiation. Keep us posted on your next appt Remember we all have different dx and we are all unique in our treatments. I see what you are thinking tho. I know I am reading so much and start to question a lot but I do have a great medical team so I’m trusting them.
Texasmama: I’ll be crossing fingers you get the last drain removed Friday!
Rhodygirl55: I’m also just planning on no chemo. I’m hoping for that for both of us! And I feel the same about the veggies and exercise, however, I find myself still wanting to make healthy choices. I guess it’s ingrained in me now. But WTF for sure!
I have my first full day of work tomorrow. Wishing everyone a positive day tomorrow
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Today, yesterday? I decided to take a shower by myself since I am now drain free. I was given the go ahead to start doing arm stretches, so I have more movement and thought I could handle washing my hair if I sat down and leaned over. Nothing long or labor intensive. I felt fine when I got out, for about 45 minutes. I have been in worse pain since I woke in recovery. And in weird places too. Down the front of my rib cage, underarm out to the elbow, in the center of my sternum. I have been eating Advil like tic tacs. Things that didn’t hurt before do now. It’s 18 hours later (bad sleep), and my pain is still high. I’ve decided that I will just stink unless someone is available to shower with me. I locked myself in the bedroom and cried for a bit. 2 steps forward, 1 step back. I keep reminding myself that this will be a rollercoaster, to not compare myself to others and how they are healing. Man, sometimes it just sneaks up on you and sucks!
Thank you for letting me vent
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PTAmomTX, it is hard not to get discouraged when recovery isn’t a straight line. My husband has to keep reminding me that’s it’s only been two weeks since I had major surgery. I was lucky with no pain, but have been really fatigued. I will have one good day and then down the next. My next milestone will be when I can string two good days together.
After reading all these posts, I’m thinking I must have goofed up because I never wore any compression garments or wraps. I was sent home with an ace bandage on, which seemed dirty so I took it off as soon as I got home. The surgeon never mentioned anything at follow up the next week, but then again, maybe because I went direct to flat without reconstruction compression wasn’t necessary.
Getting the drains out was so great. Not only were they irritating, but I would get totally exhausted getting them off the Velcro to empty them and taking a shower was the worst. So happy they are gone!
How long were you told to wait before you could take a bath? I was told 3 weeks. Doesn’t that seem excessive?
Had my first Herceptin infusion and it was so easy compared to TCHP. It’s kinda hard to judge though because I still have surgery stuff going on.0 -
PTAMomTX I seem to have the same pains as you, sternum, bottom of rib cage under the armpit. I think it’s where the tissue expander was attached. I have an appointment with my PS today and that is my big question. Also taking Advil and sleeping upright seems to help. Hang in there
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Shelligirl - I think PTAmomTX and some of the other women here had had some sort of reconstruction so their recovery might be a little different. Like you I went straight to flat and am doing well. I am still having some swelling under my arms and I have a spot in the center of my chest about the size of the palm of my hand that keeps swelling up. I am wearing an ace bandage for most of the time because it just feels more secure.
PTAmomTX - are you on a pain management protocol or just taking the meds as needed? If just taking the meds as needed try setting a regular schedule for a couple of days and see how it goes. Even something like alternating ibuprofen and tylenol might help get it under control. That is one thing my hubby insisted on was that I keep the main under control - he was not keen to see me suffering. I tried to go off the strong meds day 3 when I was home and boy did I regret that. Right now - 2 weeks out - with no reconstruction I am still doing ibuprofen and tylenol to control the pain from the center of my chest. BTW - I would totally be playing with the magnets too!
Rhodygirl55 - one good thing per day is a great plan! I am doing something like that too. I read a blog recently that had the mantra of "make before you manage." I am trying to follow that - so each day before I start trying to figure everything else out in my life and everyone else I am responsible for I am trying to "make" something. Sometimes, it is just breakfast or this morning it was the simple act of figuring out how to wrap my chest by myself. Just making something, anything each day, no matter how small gives me the feeling I am moving forward.
Heartshaped - I am so sorry you are having a rough time - sending big hugs! It is hard all around. I try super hard to find some good in all of this. The armpit pain is real - my mom had 17 nodes removed when she had her uni and I still remember that being the only things she complained about. I did ask her what helped with that and she said (beside pain meds) keeping some space in between your arm and your side - she had been given a heart shaped pillow and used that under her arm. She makes them now but I have also heard of women using travel neck pillows to just relieve some of the pressure of the arm hanging down.
Telsafied - When you get back on the elliptical I am going to count that as my workout too - girl even without using the arms that sounds like an awesome work out. I am lucky if I can get a good walk in - but I was also a couch potato before all this. My plan is to change that so I hope I can find workouts that I look forward to instead of find excuses to avoid.
I know I am missing folks but I hope you are all getting 2020 off to a good start!!
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Teslafied- congratulations on getting back on the elliptical!
TeriJ- Good luck going back to work tomorrow!
PTAmomTX- I’m so sorry about your pain. It’s so frustrating to feel like you’re going backwards.
Shelligirl- Wow! They started you on your infusion quickly. I hope that goes well for you.
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Teslafied, I don't know why somen woman need the tissue expanders and others not either. Maybe has to do with the size? I had a direct to implant reconstruction at the same time of my bilateral mastectomy, no tissue expanders. Very small implants: 180 ml.
During first weeks after surgery I had the famous "iron bra" sensation. Very weird and uncomfortable. Also, a constant burning sensation. Only this late week (the fourth one) I start to feel much better, progressivelly. I hope that everyone who has pain will feel better and better.
I keep with my stretching arm exercises. I've developed cording just after surgery and I'm afraid I cannot place my arm properly during rads. Moreover, I'm waiting for the appointment with the rehabilitator.
Thank you all for your good wishes, btw. I've had the pathology report at last: complete response to chemo. The pre-surgery MRI suggested that result already but the pathologist's verdict was missing.0 -
PTmomTX so sorry for your pain flare up! Are your tissue expanders over or under your chest muscles? I'm sure reconstruction adds to pain during recovery, and it's a big reason I made the hard decision to stay flat. I never felt gratitude for losing my hair during neoadjuvant chemo, but that part has made sponge bathing SOO much easier!
I'm feeling quite a bit better today and slept almost decently last night, and the difference was having my partner massage CBD salve into my shoulder and back muscles yesterday (staying away from my chest and armpit of course). I don't know much was the CBD part and how much was just having those tight muscles massaged- but it really helped my general pain levels!
rlmessy I do luckily have a heart shaped underarm pillow and a fuzzy fleece "hugger/ lap pillow" that I bring everywhere with me to prop/rest my arm on night and day, they do help! I think the bad swelling in my armpit makes the pain worse, and as it starts to go down it feels more manageable- 6 days out now and i can get thru the day with just tylenol/advil and save my last few oxys for bedtime. It's encouraging to hear you feel improvement in pain and swelling at 2 weeks out!
Shelligirl you'll be glad to hear Herceptin truly is MUCH much easier that TCHP!! No comparison! I had very mild nausea the next couple days, but other than that i didn't really feel any worse after the infusion than I did before it. But then again, I was still detoxing the other chemo out of my system and trying to regain energy from anemia, so I'm not sure if I could've noticed add'l fatigue?
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Hi,
I'm not sure if I'm in the right place. I had a lumpectomy for ER+Pr+HER-2 negative breast cancer on December 26, 2019. I was just called by my surgeon the sentinel node & the margins were clear. I should find out more about staging on Monday.
All of you seem to have such greater surgeries so my complaints seem small. I seem to have more skin tenderness & tenderness than a week ago.
I'm worried about the next steps. There seem to be so many!
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Hi Jhl! You are in the right place. It all sucks regardless of how much surgery, if it was preventative, or if it was a biopsy gone wild. That is something I have been reminding myself of today. I've had a few ups and downs the last few days, and they are still valid for me. Right after surgery, I wasn't in too bad of pain, but the last couple days have been hell. As my PS said, there are no trophies for suffering in pain. Which was a good reminder for me today. Fingers crossed you get good results on Monday.
Also,I was told to start doing stretches to increase my movement. I went through all my folders and paperwork they gave me and no where in there does it say WHAT exercises to do. Should I get a physical therapist? Risk the wisdom of Google? Did anyone get a pamphlet on what exercises to start for post mastectomy? From what I understand, he made a pocket in my muscles to put the expanders in that will eventually hold the implants. So, some of the pain is the muscles, they gave me Valium to use as a muscle relaxer. Between that and the Dilaudid, I'm sleeping or gazing into space a lot. I skipped taking any pain medsthis morning so I could drive for the first time since surgery. For some unholy reason, I thought it would be a great idea to take my 6yo daughter to get our hair trimmed and then stop by the grocery store. We both survived. But I've spent the rest of the day in bed and I suspect that I will still be paying for it tomorrow.
New motto: DON"T PUSH IT
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PTAmomTX:I'm sorry you are suffering after trying to do some things today! Your motto is a good one to have. Hopefully you get some good sleep tonight.
I made it through my first full day back to work. Besides the normal work stress, I just had minor pains here and there. However, trying to use more muscle was difficult. I'm a dental hygienist so scaling those dirtier teeth was a bit painful. I'm definitely tired tonight, but enjoying the peace and quiet!
Welcome jhl ! I also had lumpectomy and am feeling like I can't complain either. However less invasive our surgeries have been Doesn't diminish all the things we have felt as well. I don't think I'm much help for these wonderful women in here, but we all have something to offer. Hopefully your appt. Monday will give you some answers and good news. It is a lot of information to filter through. One step at a time.
Good night all
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