May 2021 Surgeries
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Glad to hear there were no surprises in the pathology Monarch. Hoping you won't need chemo and will be getting those last two drains out soon. I also completely understand the stress of uneven/non-matching TE's. One of mine was higher and more laterally placed than the other. It was distressing. Things will shift and change and fills can certainly even out the size issue, the placement might be something they need to address surgically. When I had my exchange surgery, my PS did fix the lateral placement issue however one is still a bit too high. bothers me. A lot. It also affects where the nipple sits and they look off. I didn't have any issues with symmetry before and you can tell the implant isn't sitting down into the IMF. I wish I could say it doesn't bother me so much but it does. It /really/ does.
As for my itching after my BMX, I believe it was from the healing process. All of the nerves from the tops of my breasts up to my collarbone just went crazy. It happened again after the swap from TE to implant and while it was more intense the second time it was shorter. Thank goodness! I do get odd little spots that itch...where I have no sensation. I chalk it up to nerves healing.
Sorry to hear that your incision had to be re-opened historygeek though hoping it is resolved. My PS used surgical glue for my incisions. I didn't see my incisions until around 5 weeks out when the mesh overtop started peeling off. I'm thankful for that in a way, also that there were no issues with healing.
Sending hugs and positive thoughts. I hope those bone scans (and other others) come back clean Carsloda.
My surgery is tomorrow, bright and early!
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Lillie, good luck tomorrow. Glad you’re surgery is bright and early. That’s how mine was.
So is anyone dealing with sadness and depression? I feel like I did so great the first week after surgery. But the last couple days have been hard emotionally. The tissue expanders being uneven doesn’t help. Then I found out my kindergartener was exposed to covid and has to quarantine and do remote learning till Tuesday. So now that falls on me. Each day I look forward to him leaving because I know school is good for him and I get a break. I find having three kids at home while trying to heal physically and emotionally from this massive surgery is hard. I’m mad that this is happening to me. My poor kindergarten walked in on my husband changing my dressings. Talk about scarring. I have two teenage daughters. My younger one asked me if she was going to get breast cancer. How do I answer that? I carry a gene I could have very well passed on to all three of them. As it turns out all of my siblings have the chek2 gene. My oldest just turned 18 and my favorite birthday tradition is to make them the birthday cake they dream of. I’m talking layers and fillings and icing. That didn’t happen I was 4 days out from surgery. I guess I’m feeling overwhelmed. The things that I do to help me cope are not an option: long solo hikes, long baths with aromatherapy, cooking. Hoping this phase passes soon. I hate not feeling like myself. I can’t help to wonder tho how much easier this would be if I had the time and space to just rest physically and emotionally. I feel emotionally exhausted. Parenting three kids I feel like I have to always be ok for them.
Thanks for reading
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Lillie, good luck tomorrow. Glad you're surgery is bright and early. That's how mine was.
So is anyone dealing with sadness and depression? I feel like I did so great the first week after surgery. But the last couple days have been hard emotionally. The tissue expanders being uneven doesn't help. Then I found out my kindergartener was exposed to covid and has to quarantine and do remote learning till Tuesday. So now that falls on me. Each day I look forward to him leaving because I know school is good for him and I get a break. I find having three kids at home while trying to heal physically and emotionally from this massive surgery is hard. I'm mad that this is happening to me. My poor kindergarten walked in on my husband changing my dressings. Talk about scarring. I have two teenage daughters. My younger one asked me if she was going to get breast cancer. How do I answer that? I carry a gene I could have very well passed on to all three of them. As it turns out all of my siblings have the chek2 gene. My oldest just turned 18 and my favorite birthday tradition is to make them the birthday cake they dream of. I'm talking layers and fillings and icing. That didn't happen I was 4 days out from surgery. I guess I'm feeling overwhelmed. The things that I do to help me cope are not an option: long solo hikes, long baths with aromatherapy, cooking. Hoping this phase passes soon. I hate not feeling like myself. I can't help to wonder tho how much easier this would be if I had the time and space to just rest physically and emotionally. I feel emotionally exhausted. Parenting three kids I feel like I have to always be ok for them.
Thanks for reading
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Lille - good luck tomorrow!!! Sending hugs!!
Monarch - gosh a lot going on - so sorry! All these experiences will make all of you stronger in the end, even your little one. You sound like you are such a good mom and will know how to handle all these situations.
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Aw, Monarch..so sorry. I validate how you feel and that it is perfectly normal. Not sure if it would help you, but maybe write letters? Write a letter to your breasts before surgery, to your breasts now, to cancer, to your daughters that they will not read, to the chek2 gene. I always find getting it out of my head/heart helps. Even if you delete/burn it. Or maybe working thru some of those tough emotions will help you to the other side? I wish you some peace. Do you have any help that can take on more with your children? You really need to take care of yourself right now!
glad everyone is healing along...
I saw my surgeons and so far, so good. I will say I am more sore and my incision is bothering me with the bra lines since the meds wore off by Sunday. I figured out to put a really light soft tank on first then my bra around that to reduce some of the irritation, but it still is bothering me a bit. But I feel like since they said I was healing good, I should suck it up a bit.
I did get some path back, I was 0/6 on lymph nodes, my tumor at removal was actually 2.3 cm (not the original 1.5 cm) which I expected somewhat. Everything else stayed the same for most part. Waiting on oncotype. I am getting nervous about having to make the decisions if there is a middle number. At first I had thought I would be happy if there was no need for chemo, but the more I research and read, I am wondering if having a situation where there was is a better outcome for recurrence risk reduction later. Always something to think about with this darn cancer!
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carlsoda and btwnthrstars, thank you for your kind words. I typed that post out somewhere between 4-5 am. Never went back to sleep but got out of bed and felt so much better physically and emotionally. I don't see my therapist till the end of next week. Wasn't sure when I would be ready to see her after surgery.
Btwnthestars, I don't even know if my dr ordered a oncotyoe or not. I'll be curious to see how yours comes back. My tumor was teeny tiny 5.5 mm. That's it. But it was grade 2 and cancer is super sneaky so i don't feel out of the woods yet. Though I've been told I probably won't need chemo. I don't want to do chemo of course but I also want to live another 40 years. I'm 45 now. When will you find out
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Checking in, for once my surgery was on time! I was glad to be home so early in the day. Mostly in a haze and trying to get comfortable. PS took fat from my thighs as well as stomach this time, double ouches. As with last time the liposuction is by far the painful part of the surgery. They told my SO that they managed to 'clean up some scar tissue'. That's about all he got from the conversation. I sighed. It seems better, lower but hard to tell without removing the bra and that I will leave on for 48 hours. The slope down looks a bit better so that is heartening.
I didn't have the brain power to post earlier but I saw your post and was thinking of you today Monarch. Sadness and depression? That was a yes and yes (still is in some respects!). In the beginning my mind was all about the most immediate crises and I thought that if I could just get through the worst then I'm golden. In reality once the first crisis passed my mind started to wind backwards to process it and my emotions went into free fall. I don't doubt you need your own time and space to process things away from your family. Myself, no children, no family that could be around other than SO, and everything was shut down. I suddenly had all this time to stare at the same four walls, alone, and ooof. I struggled hard to stay afloat and cried a lot. Not a comparison! I just hit the opposite end of that spectrum. My heart goes out to you on how to talk to your kids.
These days I take a low dose of Wellbutrin. My GP would always say that if I ever needed help it was OK and to let her know. Then she said, You don't win any medals for toughing it out and suffering. Everyone is different but I wanted to share and say that there's no wrong way of reaching out for help.
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Hello May surgery group
I just had surgery yesterday (lumpectomy) and also have recurrent breast cancer.
Am finding this experience different from last one - this time I had deep sedation instead of general anesthesia and am on tramadol for pain. I feel wired, can't sleep and am an emotional roller coaster. Tramadol for pain sucks - although I wonder if that's just me? I feel really insecure, like I am complaining too much and that everyone is worried I'll become dependent on the drugs; I am 62 years old and have never had a problem. I don't get it. What I would give to just be zonked, pain-free and sleep for a week.
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Hi RedMoon - sorry you are going through this again. Let your doctor know about the side effects of the drug - maybe they can get you something different?
I was on a high dose of Advil when I was in the hospital and it worked great. I continued to take Advil (over the counter) when I got home. Didn’t need the prescription pain killers. BUT everyone is so different!
Sending you healing thoughts!!!
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Thanks for the supportive words and healing thoughts. And thanks for not judging.
I did call the doctor, but haven't heard back. I kind of took matters into my own hands and stopped using the tramadol. I found some old Tylenol 2#s from my first surgery and have been taking them. I feel less like an emotional basketcase. I think I either want to be 100% productive or 100% zonked - am no good with this middle ground of taking it easy and relaxing.
How are you doing? Are you back to your regular life? No more radiation for you because of mastectomy? I think my second cancer is a new primary cancer rather than a recurrence of the old cancer, so I was eligible for a second lumpectomy (especially because it was in a different breast). You sound like you have a great attitude about this How do you do it?
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Hi Monarch
I feel for you, especially with everything else other than cancer going on. Like you, I hate not feeling like myself. I feel angry too. And I also struggle with asking for what I need without feeling I am burdening someone. (The strange exception to this is my husband, and I think I'm being bitchy to him). My kids are grown up, so I have more time and can shield them from this more easily (plus they are either boys or stepchildren who don't share my genetics). You sound like a really good Mom. Take care
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Best wishes to you! I just had my lumpectomy and lymph node biopsy on May 19 (ER+ IDC), and it seems to have gone well. Not much pain except in the armpit, so far. I'm grateful for an excellent surgeon, anesthesiologist and nursing staff.
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RedMoon, I do think these drugs they give us whether general anesthesia or not are so powerful. And the prescription pain pills too. My nurse af the hospital told me to drink lots and lots of water and I have been. I think you have to flush that out of your system. I used the prescription drugs a couple times. Then I switched to regular Advil and Tylenol. I just used it around the clock. Yesterday and today the pain has been very low I’m taking very little pain pills.
Thank you for your kind words, Lillie and RedMoon Today is pretty good. I had a post partum mood disorder after my last baby and was on Zoloft for about a year. I was hesitant at the time to go on Zoloft but it did work. As much as they stress me out, my kids really are very supportive sweet kids. It’s nice that we are hopefully coming out of this pandemic. We are supposed to see friends tonight. And it’s those little things that really do help. I can’t imagine fighting this battle of cancer in the midst of the raging pandemic when everything was shut down.
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Something I am now adding to my list of breast surgery must haves........BACK SCRATCHER!
It has been so handy because I am still limited in arm motions somewhat. I have even used in the first few days to pull small things a little closer to me.
I managed to work a few hours from home today sitting at the kitchen table. Getting some of my energy back but taking it slow because I do not want to start over.
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This hurts. I am 11 days out from double mastectomy with implants. I think the best day I had after surgery was the day after surgery. I came home and was in no pain except for the pulling of the sutures and drains or if I raised my arms too high. The pain pumps ran out of meds on the 3rd day after surgery so I expected pain then but it wasn't too bad. I did end up back in the hospital for a few days with a rapid heart rate which they chalked up to dehydration but never really figured it out. That is when the bad pain started, exactly a week after surgery. From there, it has just gotten worse. To touch my boobs, they are numb but the insides are paining and aching. When I told my BS, she replied, "You will be fine", which made me think this is normal. Is anyone else noticing that as time goes on, the pain gets worse? Maybe I am just getting feeling back and that is what is going on.
I have been mainly taking tylenol and ibuprofen but if things get too bad (usually in the afternoon) I take something stronger.
It looks like one of my implants is deflated! I won't even go there yet because I am having a hard time dealing with this pain so I can't even imagine having to have any more procedures! I have had one drain removed but still have two and they are annoying as hell (as you all know! LOL).
My pathology came back all clear except for a few spots of ADH and ALH. My axillary dissection ended up showing only 1 node, so in total I've had three removed. The surgeon was confused by that because she said she took out "a bunch of stuff", but she also said she wasn't worried (I initially had 1/2 sentinel nodes positive).
historkgeek - yes! a backscratcher I was using a hanger for a few days before my son gave me his backscratcher!
RedMoon - I have been prescribed tramadol too as I am allergic to other pain relief, and it doesn't let me sleep either. If I do, I just doze off/on for hours in a half unconscious state. I've learned not to take it near bedtime. It does help me with the pain though! I also worry that people are thinking I am becoming dependent on it. I get such mixed advice from nurses and doctors about taking it. Some say to take it every six hours and others say don't take it unless you absolutely have to. Maybe you can get something different that works better for you.
monarch - I hope you are doing better. I'm glad your kids are supportive. I think it helps them when they can be a help to you. One time when I had the flu, I asked my five year old to make me a PB&J and he did and he was so proud of himself! Ask them for help and understanding. I had to remind myself these past few days to ask my family for help too. My 26 year old yelled at me and reminded me I didn't have to "do it all" and be so "independent" which is what I am used to. I am allowing myself to ask for help both physically and emotionally!
As my mother always used to say, "This too shall pass". I hope so, because I'm going swimming and kayaking at the end of July!
Hugs to everyone (but not too tight).
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Dulcea, I'm sorry you are still in pain. I'm at 3 weeks out and it has gotten better. I remember thinking the pain was never going to stop. Mine was nerve/skin pain around my expanders. It takes a toll on you. Several times I was crying just because I was tired of hurting non-stop. Remember it's a marathon, don't rush it.
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oh no Dulcea - I am so sorry!! Is there a chance you have an infection? Any fever? Are you still icing? I still have pain in my underarm area and ice really helps. The numbness of the nerves is very annoying too. I started putting Jason’s vitamin e oil on hoping just keeping it moisturized will help.
Sending you very gentle hugs.
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I am doing better. Drinking lots of water really does help and I've stopped taking Tramadol, which really did make me loopy I'm just sleeping lots and laying around like a log propped up with pillows.
Dulcea - so so sorry you're having a tough time. I would hate to be told I was fine if I was in that much pain. I sure hope things get better for you.
It's finally a warm sunny day (we had snow here last Wednesday!- yikes) Hope you're all looking at sunny blue skies from your windows too.
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Thank you everyone for your kind replies.
Yesterday was better after I took the maximum amount of pain relief and just sat in my recliner watching Netflix (Lucifer!) for hours without moving a muscle. It took a long time for the pain to subside, but it finally did. Then, I had anxiety that it would return later. Thankfully it didn't.
I don't have a fever or any signs of infection or swelling. Maybe I'm just a wimp?
historygeek, thank you for your honest words. That did make me feel better.
carlsoda, interesting as I was told not to ice because it kills capillaries or something. I just might try that though!
I am grateful you all let me whine to you about my pain, and I am thankful you are all here with me!
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Dulcea, I admit I have been a wimp with this surgery. So many different things hurt or feel strange. In the beginning I was also dealing with broken sleep because I can't lay on my side. I was only sleeping for a couple of hours at a time. Now I usually have to take a muscle relaxer at night because I get muscle spasms in my back. The spasms are a problem from before surgery.
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Dulcea glad to hear you are feeling a little better. I think truly resting is really the only way to heal and get thru pain. I too thought I was doing fine after surgery, but now I realize all the meds were still working! As soon as I was done with the nerve pain meds, it really was bothering me Thurs and Fri last week. And sitting up for work, I think I just over did it a bit. I have been more regimen about taking tylenol around the clock (actually today I did not bcz I am feeling better), resting so that my chest is elevated, lifted and not having gravity pull down on it and icing more often.
I will get weird sharp pains here and there, and I can feel the tightening, I guess at the incision spot. My doctors didn't give me any restrictions on moving arms and stuff, just no lifting heavy things, but if I try to stretch up to a top cabinet I swear I feel like I am going to split! I have stopped doing that and call for help. I keep repeating what they said about slow and steady...there's a reason they give a 4-6 weeks recovery window. Trying to be patient and give my self a break, but it's hard.
It was super hot this weekend, but normally it would be a time where i would be doing yard work and gardening and doing things around the house.. I forced myself to sit inside, did some light straightening up, but when I felt tired I sat/laid down, elevated, rested, etc. I am dealing with some tight back muscles, upper shoulder area, but again, if I take a break and lay on a hard pillow, it seems to relieve and help. I'm also feeling some hardening/bruising in the sides of breasts, moreso on the left where node biopsy was done and I am hoping this eventually goes away on its own.
All this to say - it seems rest is best. The whole thing is very humbling as I am a get up and go type person, so it is hard. And I think as women we do a lot of caretaking of others, so hard to just take care of self. I am lucky having good support.
Monarch - on the oncotype - from what I gather, I believe it sort of depends on how hormone receptive your cancer is...mine was in the 99%-98% range. I guess depending on type, grade and aggressiveness, it seems some doctors don't find that it matters or not for treatment.
Also not sure what your docs advised, but mine advised making sure to get added protein to diet to help in healing too. I bought some of those protein shakes to help. They recommended muscle milk or boost, something like that, but I chose a plant based one called Ripple. It's not bad, just slightly chalky.
Wishing you all well....we are almost thru the month! I think there were a few later month surgeries? Hoping you ladies do well!
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btwnthestars, I'm a big gardener too. I have a big property I've been removing old shrubs and replacing with native species to draw the birds and butterflies. It's a challenging property with hills so physically it's a lot of work but I love it.
Anyhow I'm two weeks out. Got the final drains out. A new bra to replace the surgical one. I'll be able to shower tomorrow so things are looking up
Saw the oncologist yesterday. He's ordering the Mammaprint and that will determine if I need chemo. I'm worried because genetics haven't been in my favor or my sisters. We both have cancer and chek2. She has ovarian. Anyhow more waiting
My plastic surgeon said no swimming for 12 weeks. Bummer that it's summer and I have kids that need entertained. She said I can get in to my waist just can't swim
So we March on
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Monarch, I'm so jealous you have all your drains out. I'm hoping to get my last two out in a few days. 😁 Great to hear that you are doing so well!
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oh no historygeek - you still have 2 drains? I am sooo sorry! Glad they come out soon - then you can fully heal!
Btwnstars & Monarch: I also love gardening! It is so fun to walk down to my veg garden and see what has popped up! We also have a huge garden as we have 2 acres in the country. Poor hubs he gets the brunt of the weeding right now! 🤣
Over all doing pretty good. A couple of busy weeks coming up and then back to work. PT this week and chemo class. Next week wig shopping and chemo (ugh)!
Monarch - sorry about the swimming but at least you can get into the pool! I wonder if it’s the chlorine water or the movement of swimming?
Hope you all have a good week! Keep healing!!!
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I sneezed for the first time today. Oh boy.
I also seem to have a numb armpit and underarm that reaches almost down to my elbow. At the same time, it hurts if something touches it. It sounds funny that it's numb and painful but it's true. I will assume it's from the axillary dissection and I'm guessing it's nerve pain. If my clothes just brush against it, the pain is pretty bad. Has anyone else experienced this?
My drains were removed today. Pulling the sutures out hurt but the actual drains being removed just felt funny. No pain. I didn't realize how long they were!
My ongoing pain was dismissed by the nurse and the doctor. What did I expect?
I still have to wear the "bando" across my upper chest for three more weeks to keep the implants from settling too high. After that, I have to wear it only at night for a while.
My biggest complaint in all of this is that I was not told what to expect post-surgery from all of this (for instance, about the bando). I asked questions but I guess I didn't know what questions to ask. I certainly expected the pain and knew it would take a while for recovery but the nurse who gave me my "teaching" told me to make sure I have someone to drive me home and to take my medications as directed. Absolutely nothing else. Today at the PS I was told for the first time that I shouldn't push or pull things or reach higher than my head. Of course I figured it out on my own when I tried to do things and it hurt. Anyway, I think this is worth mentioning to the doctors and nurses that we need to be more prepared. None of what I hadn't been told about would have changed my mind though. I just need to know what to expect!
BtwnStrs - yes to all of that! Especially the part about resting which is hard for me. I am not used to it! It's killing me not to be digging in the dirt. A few days ago I found myself out there looking at my garden when all of a sudden, I'm pulling weeds! I had to go in the house and stay there. I have settled into a routine of doing a few easy chores and then resting. That seems to be helping a lot. I am learning.Keep on healing ladies!
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Hi Dulcea,
Yes I am having the same weird nerve pain in my armpit and down my side. What is helping me is my pillow (never leave home without it!) and ice! Ice must help with the swelling and reduce some of the pain. This is my third lymph node removal and I know it will get better - just takes time!Sorry to hear your team didn’t prepare you for when you came home from the hospital. Since this was my third surgery for lumpectomies and mastectomy I can tell you in my hospital things have really changed for the better. Must mean there is awareness out there on how they look after us and communicate.And I hope you are done and never have to go thru anything like this again. Just keep resting, drink lots of water, eat protein and get a little exercise. I think some light weeding is okay since it is so relaxing too!!
Sending you healing thoughts!!
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Ok, then it's settled. We are saying "screw cancer" and starting a garden club! I picked some radishes and cut snapdragons the other day.
Dulcea, as good as my surgeons have been, there is still a lot of miscommunication from the office and practice in general. I've been seeing the PA post surgery and each time she tells me something new/different that I didn't understand before. I consider myself a very good listener, I take notes, I have my partner in the room with me listening and taking notes, and he says the same thing. He's like we keep getting new info! I duno what it's about?! This is why doctors get such a bad rep.
So yesterday I heard for the first time...well they've been saying 4-6 weeks recovery and it will take months to really settle down (swelling/nerves) and really can be up to a year of full recovery. But yesterday for the first time I heard them say at 6 weeks you are 80% recovered. I think they can tell the whole waiting and slowing down is wearing on me a bit. But I feel like I am getting better. I do have a little pocket of fluid on cancer side under arm, but I've been told to put extra compression. So I roll up some gauze to stick in that side of bra and it did seem to go down a bit. They said something about if it gets worse it can be drained, but I would rather just let it heal naturally. I know it will eventually. Just time!
Still anxiously awaiting oncotype, I meet radiologist today for first consult visit.
I'm glad everyone is out of drains - Historygeek - hopefully soon!
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In regards to not being allowed to swim it's because of the risk of infection associated with open water (highest risk), pools, or just soaking in the bath. They want your incisions to be fully healed before you submerge them. With the timing of my surgeries last year and this I haven't been able to swim either.
At least last summer the pool was closed for most of the summer. I'm not certain what the plan is for this summer but I'm determined that if it opens up I'll just take a chair, a book, and a whole lot of sunscreen so I can lay out and bask like a lizard.0 -
It's shower day for me! 19 days! At least I figured out how to hang my head in the shower and wash my hair pretty quickly. I make a mess but my hair has been looking good!
I had to go back and ask for more heavy duty pain meds yesterday. I felt embarrassed but it really was not a problem. And it provided much needed relief!! It's funny because I have been given opioids for past surgeries etc. and have never felt the need to take them. Clearly, this surgery is a different animal.
I am pretty sure I am dealing with a lot of nerve pain. If anything just brushes my skin, it burns. So yes, if I breathe it hurts as my chest expands against my clothing. Basically, it doesn't stop hurting. Fun.
I also notice that if I drink something very cold or very bubbly, it bothers my chest from the inside. Anyone else or am I just a weirdo?
I am all for the garden club instead of the breast cancer club for sure! I started so many seedlings back in March. I got a lot planted before surgery but not all. My family barely kept them alive while I was busy have my breasts removed. I actually planted the rest the other day! It felt good to dig in the dirt! My therapy.
BtwnStrs - I'm glad I'm not the only one who notices the limited non-communication. They should just have a pamphlet for each situation about what can be expected. Seriously! I am just very surprised at the lack of information since the Breast Care Center has been in operation for 20 years. I hope your oncotype is in the non-chemo range. If it ends up being recommended, I'm sure you will be fine. I think we are lucky now knowing the most recent study done that was done over a number of years and with a huge population.
Carlsoda - I've been icing my armpit and I will say that is very, very helpful! Thank you for the suggestion.
Do they normally offer physical therapy after a mastectomy or only if someone is having issues? My right arm (axillary dissection side) is really tightening up and I have a very painful bicep. I drove for the first time yesterday and boy was I tight. I'm not sure what I expected but I was a little scared not being as flexible with the steering wheel.
historygeek - I hope you have your drains out by now. That is truly a game changer!
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Dulcea, showers are definitely a little tricky now. I definitely had the same nerve pain. It's been non-stop since surgery. Still do somewhat especially at the top & outside of my expanders. I'm feeling it less with time. Hopefully it will get better with time for you.
The feeling of cold drinks going down is something I luckily read about here somewhere before my surgery. I glad I saw it cause it definitely caught me off guard when it happened. I still feel it.
Did anyone else experience a change in taste buds after surgery? Some things like pasta sauce & coffee do not taste right. A few days after surgery I had pizza & the sauce tasted too spicy for me to eat. Just regular pizza sauce.
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