June 2017 Surgery Group
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Hello ladies! I am 12 days out from my bmx on June 30th. The first 10 days post surgery were a horror show for me, but my drains were removed on Monday (no pain at all during removal), and I'm finally starting to feel better. Pathology showed 3 positive lymph nodes, so moving on to chemo next. The good news is that they did not think I would need radiation after chemo, so hopefully treatments will be done by the end of the year.
Met with the oncologist on Monday and will be starting the AC - T protocol. A number of people have mentioned this protocol in this forum, so it's good to know that it sounds pretty standard.
The main issue I am facing - and I'm wondering if anyone else is having or had the same issue two weeks out from surgery - is nerve pain. I had skin sparing surgery, and every nerve on my chest feels like it is on FIRE. Also, my armpits and the back of my arms are numb but hurt at the same time. It is soooo hard to describe to people - how can it be numb and hurt at the same time??!! I don't know if this is normal or unusual. The PA said it takes time for all of the nerves to "settle" back down but didn't say how long before I can expect relief.
All I can say is thank goodness for my wonderful Mother, who has been here since before my surgery and been the best nurse anyone could ask for. I am certainly blessed in that regard
Hope everyone has a good day!
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hi teaspoons --congrats on being done with surgery . I had negative nodes but my BS had told me that positive nodes would mandate radiation to decrease local recurrence--so you may want to ask questions to clarify that? Of course, i am just speaking abotu what I feel i heard from my docs
Regarding nerve pain --yes , it burns. I was on neurontin already for neuropathy related to chemo and i have kept goign with the neurontin . I was also told to very gently run my fingers over the skin . So yu could try gently running your i fingers over the skin and ask your doctors about neurontin perhaps ?
So glad your mother is of help to you! God bless mothers!
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Teaspoons, I agree with Tara. I would ask about radiation again and have them clarify why radiation may not be needed. Maybe meet with the RO (radiation oncologist), if you have one on your team.
As for the nerves, yeah, mine are angry too. Sometimes the pain is sharp and quick, other times it feels like I have a sunburn and sometimes my arm gets cold and goosebumpy, it's weird.
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thanks illimae. That worked. When I typed in the whole name nothing. Maybe I spelled it wrong
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hi teaspoons... glad to hear your drains are out! I didn't have nerve pain per se, but I itched awfully.
When you're ready and know your chemo plan, look for a great here for other ladies starting the same time as you. And lurk on the boards for the previous month or two. Very, very helpful in my opinion. I'm sitting here halfway through my first chemo (A/C) and although I was anxious, I wasn't a wreck thanks to the advice and support from this site.
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oh and thank you jenruns for the milking tip, it worked out pretty well, I appreciate it
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yay!!!! It's a good feeling to be useful
Just finished my first chemo (1/16th of the way there!). So glad that's over.
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Teaspoons- I'm interested in your teams thoughts on no radiation. I'm reading in your post that they don't think radiation will be needed as they expect complete chemo response in any cancer that remains in any lymph node. Maybe I'm reading too much into it though.
I'm kinda in the same boat. I had neoadjuvent chemo though. I had a positive node biopsy in December-after chemo my path report showed no cancer in that node or the other 3 he removed. Now the team is going to discuss the need for radiation since the cancer was gone. My case goes to tumor board next week but so far I've seen my BS and MO and they both seem undecided. Both did did think the RO would lean towards radiation. We will see. I have an appt with him the day before tumor board.
I too get quick pains and a crawling tingling feeling from my back to my breast. It's weird.
JenRuns - celebrate each completed session! Hope they all go smoothly.
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Hi teaspoons - I'm having numb and in pain feeling at the same time too! It's super weird. When I ask my surgeon she just says everyone is different.
You know what's been strange? Because I refused opiates due to an allergy (even during surgery) and have been using advil instead - I've been incredibly alert. Surgery was at 10am - at 12:15pm I was walking myself to the bathroom and up chatting. So my family/friends keep saying - "Oh look, you're doing so great!" and inside I'm like, "Noooo, I'm doing terrible. I'm in pain. I'm missing a breast. I'm exhausted." And so everyone is all relieved and celebrating and I'm here trying to work around the drain and catch more than 6 hours of sleep. I should be happy everyone else is happy. But I really just want someone to be like "Poor pumpkin", you know? I finally got in my own bed and out of the recliner last night. I slept awesome. But now I'm up for a dr appt. So only 5-6 hours of sleep again. Hoping it's not slowing down recovery. I'm thinking I can start in my bed tonight and I should get a full night's sleep. I'd also been getting up for pain meds and to milk the drains. But I found out I don't have to do that anymore and I'm down to meds only 2x/day now.
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Forgot one thing - I'm still praying for you all. Praying for those with longer recoveries, praying for those with chemo/radiation, praying for those impacted emotionally, praying for each of you, in whatever circumstance you're in, and praying for your family/friends. I'm really sorry I went through an emo patch. I'm finally starting to mentally come around and be more myself again. I still believe awesome > cancer. And I know for a fact that our group has enough concentrated awesome to repel the meanest cancer. Love you ladies! Hugs.
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No need to apologize SBKH. Your feelings are valid and this is the place we can vent!!! Your feelings are totally normal. Strong one moment and needing pampering the next. I get that!!
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So last night I fell down the stairs. Well, landed on my butt but went down 4 stairs and braced myself with my arms behind me. Bad idea. Something pulled. Internal stitches maybe?? I have a sharp tiny bump just on the top of my breast a couple inches inside my armpit. Feels like something is scratching in there. I'll call the PS in an hourto see what I should do. The adventure continues.....
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"concentrated awesome", I love it
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oh Legomaster, I'm sorry to hear that!! Keep us posted on what's going on. Thank goodness it wasn't a bone or worse.
SBKH: your comment struck a cord with me. I update a CaringBridge site to keep my friends and family updated. Everyone's all "oh, so glad this went so well" and "gosh you're doing great" ... when inside I'm tired of the fluttery tummy, the burping (Prilosec coming in today) and the anxiety. Someone to say, "you poor ting" would probably make me cry, but still.
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legomaster I'm so sorry about the accident. Please update us. That must have hurt.
SBKH boy do I know what you mean. I know now that I am at the place where the only thing people want to hear is "fine thank you" when they inquire how I am doing. I wish it was true. I'm still swollen with lots of edema under my arm, in my breast and on my side. My husband has gone back to work and I need to drive so no pain meds. I can't take Advil until my kidney studies clear up so I just put up with it. The thing that keeps me going is this brave group. The gals that are going on to chemo and radiation are specially in my heart. Thank God for all of you. I really hope you feel better soon. You are just one week out so be very good to yourself.
Hang in there everyone. Prayers, hugs, good wishes and admiration
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Well I apparently pulled one of the internal alloderm stitches out with my fall. I can feel it poking under the skin. My understanding is that it is not a dissolvable suture so if it continues to bother me the PS will take it later. I'm hoping it just goes away. His staff was very nice, looked at me and talked to him between his surgeries. They were not aware that the alloderm went up so high on my chest and neither was I. They said the implants were fine. I'll talk to the doctor more at my 1 month follow up.
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glad to hear it's nothing super serious
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JenRuns - I'm glad you can relate! I was beginning to feel like maybe I'm just a crank.
LegoMaster - I'm so, so sorry about your fall. Poor pumpkin! That gave me chills to read about. I'm sure the stitch is annoying - I'm glad there's an option to remove it.
Susan - I feel ya. Everyone thinks after surgery it's over. But it's not.
Y'all - I'm struggling. I'm too exhausted to sleep. The drain makes it a little hard to sleep anyway. So I'm up, which gives me lots of time to be tired and bored. Anyone else getting bored? Can you hear me going stir crazy from there?
So today was my one week post-op. Feels much longer. Pathology was good - got all the cancer and the nodes were clear. Waiting to see if I'll do Tamoxifen or anything else. I have a niggling worry that I didn't have my "healthy" breast removed... but at least if I need to do this again, I'll know what I'm in for. I did not get my drain out today. It will probably come out Monday. Drains are the grossest. The absolute grossest. And I've drained my own every single time - so I'm getting all the grossness to myself. Gag. It almost reminds me of when my son was a newborn and I had to feed him every few hours. I had all these alarms set on my iphone to remind me. Only now, I'm checking a drain where that breast used to be every few hours. Still have not looked under the bandages... Need to concentrate my awesome a little more first. BTW - love the Somecard Illimae.
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SBKH, woo hoo on the pathology report! So glad to hear.
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SBKH. Good news on the pathology report! Go you! I liked breastfeeding much better than cancer, surgery, and drains too 😊. I was afraid to look too but I only had tight Saran Wrap in my chest so no avoidance. It looked great. No bruising, my scars are under and to the side of my breasts so I can't even see them unless I use a mirror. Hopefully you will be similar and you willing be pleased with how you look.
For those of you that are a few weeks out from surgery, did your PS tell you to moisturize the breast and scar area? My PS did not specifically say that but the nurses in his office did. She said rubbing the lotion in would help with circulation and swelling.
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legomaster- no reconstruction for me so it might be a little ugly...
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legomaster, this week the nurse said I could use lotion. My last scabs finally fell off (5 weeks post). I asked about scar cream and she said don't bother... when he goes in for the exchange, he'll use the same incisions and then we'll work on scar therapy.
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Legomaster, I was told NOTHING about scar care. And now my reconstruction is a year out at least, so I want to work on healing that area. I have started massaging with Bio Oil, and have silicone strips, which I am already using for my keloid SNB scar. And SBKH, great news on your pathology report! I waited a while to look, too. Take the time you need. I will say that it wasn't as hard as I thought it would be once I did it. I still haven't shared with my husband, for me, not him. I think he is cool with whatever.
I do feel that by being "strong" people are not aware of the seriousness of post op recovery. I look "normal", but it's work to appear that way, for sure
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legomaster....yikes! So sorry about the fall, i hope you didn't hurt yourself badly...what did surgeon say?
SBKH I felt the same in that I was working too hard I figure to not look "sick" lol My teenagers started asking me yo do stuff for them and I'm like....uh no, I just had my boobs chopped off you little twerps (ok I just said that in my head....but you know what I mean lol)
Teaspoons I've been documenting my experience on Instagram. For my own recollection and to give others waiting for surgery an idea of what it might be/feel like. I notice every day it's just a little bit changed. At first with the surgical dressings everything felt heavy, with numbness seeping out to where things could be touched. I did have a post op pain delivery device that pumped numbing meds in and around my incisions for 4-5 days. My arm pits and the backs of my arms were sore with numb skin from the day one. Then after a few days things got itchy everywhere but the sensation was deeper, not on the surface. That was intense for about a day and then it became a come and go. Pressing the palm of my hand into the sensation helps. At about 5 days I started feeling chilly (like cold nipple sensation). Surface skin numb, underlying tissue sore. Armpits remained sore with numb surface skin. About a week in the underarm sensation started feeling like sunburn, if I touch it...it is like transition between numb and having sensation. But it feels like irritated sunburn. With sore underlying tissue. My chest that second week had numb surface skin, very sore underlying structure....especially along the sternum with occasional weird deep itch feeling. After my drains came out around 10 days the severe muscle spasms I was having on one side stopped and things have remained about the same. Sore deep structure, numb skin on upper chest, almost normal sensation along what was the crease under my breasts. My armpits during week 3 and 4 (currently in week 4) have remained feeling like a sunburn but that burn sensation is a little less each day. Tiny bit. The soreness of the deep tissues remains about the same. The more I keep my arms up the better that is. My surface skin on my chest and the back on one arm remains very numb. It's mostly the skin sensation of my arm pits and inner arms down to almost the elbow that seems to be improving ever so very slightly. Im not really noticing much improvement of deeper soreness in the armpit and the area where pit joins chest. Nor am I noticing much improvement in sternal soreness. I know eventually it will improve. Im so so so numb on my chest (the skin) I don't have a lot of hope that's gonna resolve. At this point if my armpits and inner arms would just stop feeling like an irritated sunburn and my sternum stop being so tender I'd be willing to call it good.
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Still have my axillary drain, ugh. My BS post op was postponed to this Monday but I still have at least double the desired output. Just wanna get this out and get back to work, I'm board.
Hope everyone has a relaxing, pain free weekend
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Hi everyone.
lllimae and Tara - thanks for encouraging me to ask the doctor about radiation. So, I emailed the Physician's Assistant and asked again why radiation was not indicated. She is very good about returning emails. She emailed me back and said that the pathology didn't fit the radiation criteria: tumor sizes less then 5 cm; less than 4 positive lymph nodes; clear margins. At 8 p.m. that same night, she emailed me again and said she was going to consult with the surgeon, so she was obviously thinking about it still. Anyway, she called me this morning and apologized. Long story short, the surgeon said I should be referred to the RO for consult due to the pathology, my age and BRCA+. Not that I want radiation, but I want to be sure I'm addressing everything appropriately and have all of the facts to make good decisions. Lesson learned - make sure to ask questions and understand the recommendations.
Misbehaving - my nerve pain sounds a lot like your pain. It hasn't improved any but I had to stop taking the pain meds because they were giving me the worse case of constipation. I did find a front zip sports bra at Walmart that seems to help somewhat, I think because it limits fabric from touching the skin....whatever works, I guess.
I can't take anything but Tylenol for now, since I'm having a port put in next week. Don't know if it's an option, but I wish they would have put the port in during the original surgery instead of having to go through another procedure.
My PS did not say anything about lotion for scaring but I know he opens the same scar to replace the TEs later. I am seeing him on Monday though and will ask.
Hang tough!
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SBKH great news about your pathology. I am so happy for you.
Legomaster I'm glad that your fall did not mess up your reconstruction. I hope it doesn't give you any more trouble.
You guys have really described all the crazy weird sensations we are having. The armpit area specifically feels sunburned and then deep pain. But glad to say it is definitely improving (exactly 4 weeks today). What about the cold nipple when you drink cold water.....how weird is that
I like the idea that massage may get rid of the swelling. My scar looked so much better before it started to get stretched. I'm going to try the massage and maybe the silicone strips as well. Thanks for that tip.
Have an awesome weekend everyone. Take good care of yourselves.
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Susanga, funny, it's not the nipple for me but I was telling my husband last night that I sometimes feel hot and cold when I drink several inches left of my throat, I guess it's those pesky nerves acting up again.
I can finally feel myself scratching my left shoulder and might be able to put antiperspirant on like a normal person soon.
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40 hours til my drain comes out!!!!
But now the itching has started...
Illimae - why can't you wear deodorant? Should I avoid that after the drain comes out?
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Sbkh, yay for the drains! I have one left, too much flow still
and I can wear deodorant but I can't feel my armpit so it's weird to put it on.0
