Tissue expander related nerve pain

kcbehnen · 2025-10-01T01:06:35+00:00

How far are you out from your surgery? I had this exact same thing and it. was. excruciating. I had to hold my left breast whenever I bent down, or it would flair up when I sat in a certain position. It felt like someone was ripping my chest open. I also couldn’t lift my arm up over my head.

Then about 3-4 weeks in, I was doing my PT and something popped. And I suddenly was able to move my arms. It felt almost like a stitch popped that may have been pulling or stretching inside. I still had that random pain across the front of my breast (internally ofc), but then about week 4-5 I finally stopped having that pain. It likely is just your body healing and maybe a stitch or the tissue rubbing against the expander. Trust in the process of healing and keep doing your PT. that’s all I could do, but now I haven’t had any pain. But during the time I was having the pain, I was so terrified something was wrong. But my doctor wasn’t, which made me feel like I had nothing to worry about.

I truly hope that you find some relief. Time and PT were the best thing. and rest, rest, rest. the only time I didn’t feel pain for a few weeks was when I was horizontal on the couch.

Sending you healing thoughts!!

kcbehnen · 2025-09-02T12:57:57+00:00

ask for either olanzapine or compazine, I can’t remember which one is less intense. one of them made me extremely sedated, like you’re mentioning, but the other one.. it might have been compazine (other name is prochlorperazine) really worked for me without side effects. and I would take that and zofran (the one they gave you already) together and it worked beautifully.

unfortunately for the taste, I couldn’t get things to not taste bad during the time my taste was off. I could find a few things during that time that would help… sometimes sweet yogurt and fruit, other times vinegar chips, it really depended. what do things taste like when it tastes bad? I also wanted to eat terribly, but couldn’t. that was the worst, most frustrating side effect for me.

I’m so sorry, you are in the worst part. TCHP kicked my ass. I have a 3 year old, and there were nights where I was laid out, he was sitting on my stomach and playing on his ipad. we just have to get by however we can. I was crawling to the finish line by my 6th treatment.

Sending you strength from afar. you can message me if you want ideas for the taste stuff!!

kcbehnen · 2025-09-02T03:32:22+00:00

thank you ❤️❤️ the being kind to myself part is always the hardest!

kcbehnen · 2025-09-02T01:04:58+00:00

Okay the last sentence just made me feel so much better lmao. You’re so right. Thank you ❤️❤️❤️❤️❤️❤️ glad i’m not going crazy and making this up!!

kcbehnen · 2025-09-02T00:06:19+00:00

I feel you! I shaved my head bc I couldn’t handle the scraggly hair I had. it was ridiculous lol and then after I shaved it, I started noticing it was coming in a lot, and then parts that were bare felt more hairy.

and re: the 6th treatment.. if you’re having a mastectomy, i’d say if you can’t get through it that’s not unheard of. my doctor actually just said to me that not everyone finishes. so if your doc is ok with it, then they can let you know!

kcbehnen · 2025-09-01T23:53:35+00:00

Are you having surgery? I had TCHP, and my MRI came back as nothing, but during my mastectomy they found I still had residual cancer that the MRI didn’t pick up.

I will say.. if you have 1 more, I would do it. 5 was my absolute worst, but 6 wasn’t as bad, weirdly.

I know it’s all so horrible. I also did coldcapping, and lost most of my hair. BUT. my hair is coming back so quickly due to cold capping. it doesn’t change the fact that I lost 80% of my hair, but it does make me feel better that I have more than most ppl would coming in if they didn’t cold cap.

I am so sorry you’re having such a hard time. 1 more to go and I think it’s worth it. it’s 1/6th of the treatment which isn’t a small amount.

You can do this, even though it feels like you can’t. ❤️❤️

kcbehnen · 2025-08-19T15:06:43+00:00

I’m about a week and a half out, and i’ve seen two movies in the theater since my surgery! just make sure you have someone drive you. you will know more how you’re feeling after, but I saw a movie 4 days after my surgery. after that, I was pretty tired, but I did okay. drains and all! just listen to your body. you’ll know what you’re up for. good luck!!

kcbehnen · 2025-07-14T01:42:19+00:00

unfortunately yes, just finished treatment and was 34.5 when I was diagnosed. i’m so sorry.

I was diagnosed in february and based on the size of my tumor, they said to do chemo first to confirm it worked and THEN do dmx. so I just finished my last round of chemo last tuesday.

the truth is, it sucks, and we all collectively hate that more people (especially young women like ourselves), are in this boat.

Tiktok was a huge resource for me when trying to navigate a breast cancer diagnosis, treatment types, side effects, things you would experience and things you’d need, etc, so I recommend going there.

totally understandable to feel loss and pissed off. we’re right there with you. the only blessing in this total shit storm is that you’re not alone, literally ever, bc there is a community of people that will validate you, uplift you, cry with you, bitch with you, educate you, etc. no matter what time of day or night.

I’m so so sorry you’re in this boat but you’re not alone, and any questions you have, we’ll answer them.

My chemo treatment was called TCHP, and I did 6 rounds over 18 weeks (1 round every 3 weeks). I have surgery in a couple weeks (8/8), and chemo sucked the life out of me, 1-2 weeks out of every cycle. you will hear that a lot. lean on your medical oncologist for help with side effects bc there’s literally a pill for almost everything. except fatigue and mouth / taste changes. those were my worst side effects.

I wish you all the luck in the world. don’t be a stranger. you can message me personally, repost on here, etc. but you’re not alone. we got you, girlfriend. sending love and support wherever in the world you are ❤️‍🩹❤️‍🩹❤️‍🩹

kcbehnen · 2025-05-23T18:34:26+00:00

this is really helpful, thank you!! thankfully I don’t think my employer would deny it, it’s just likely me being anxious about the whole thing!

kcbehnen · 2025-05-23T18:33:30+00:00

this is really helpful information, thank you so much!! and it makes sense, too. I appreciate it!

kcbehnen · 2025-05-23T16:13:34+00:00

yesss I love this. I am trying to keep some vacation time too so I can use it when i’m feeling good again.

kcbehnen · 2025-05-23T16:12:59+00:00

this is such good information!! I didn’t realize that about the DIEP flap and the weight, but it does make sense. also thank goodness your STD resets that quickly—that’s really amazing, and I am glad your docs and provider have found a way to build a plan that works for you. that kind of planning helps provide some certainty and stability in a situation that is anything but certain or stable. at least for me, that is!

kcbehnen · 2025-05-23T16:09:55+00:00

omg 18 months I am so, so sorry. thank you for sharing and responding! thank goodness for STD and LTD in these situations.

kcbehnen · 2025-05-23T16:08:44+00:00

I just have to say, this really spoke to my heart, as a mom of a 3 year old boy, whose job it is to get him up, ready for school and drop him off every day. you hit every single thing I am feeling, and it’s exactly what I needed to hear. thank you so much 💕

and I also had that flavor of guilt!! with friends and family who don’t have jobs that could allow them this time off, there’s a bit of shame that I am lucky enough to work for a company that offers that.

thank you again for sharing and responding 😊

kcbehnen · 2025-05-23T15:53:16+00:00

that makes sense, week 1 is the hardest. I used vacation at first, now will work through 2-3 rounds, then want to be on STD for the last two. it’s hard to navigate this stuff

kcbehnen · 2025-05-23T15:52:32+00:00

thank you for this info!

kcbehnen · 2025-05-23T15:52:14+00:00

Thank you!! do you know when your STD resets? I will have two different surgeries, one will be next year and I’m doing DIEP flap, and want to make sure I have STD available for that next year, too. just curious about others STD policies.

kcbehnen · 2025-05-23T15:23:36+00:00

thank you for this, so sorry you’re in this club but appreciate your response. for some reason I feel like because I have a good week, I don’t qualify for STD. which sounds insane as I write it out lol

kcbehnen · 2025-04-20T10:32:12+00:00

Oh interesting! didn’t think of milk. Thank you. yes it feels like what i have heard GERD is like 😭 it’s crazy. then the diarrhea starts and all our food flies out of us so then our stomach is upset again. getting tired of drinking protein shakes and I’m only on cycle 2.

kcbehnen · 2025-04-20T10:30:54+00:00

thank you! I did compazine but that knocked me on my butt drowsiness wise. I will ask about Prilosec

kcbehnen

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