Double Mastecomy 4 days ago. Pain, is it normal?

Anonymous

Double Mastecomy 4 days ago. Pain, is it normal?

Lautrec

Hello, my wife had a double mastectomy on Monday afternoon. (DCIS stage 0 level 1). Lymph nodes clear. But she is still having a lot of pain in her chest. Today was her first full day at home. She came home yesterday afternoon (Wednesday) since the doctors kept her 2 full days because they thought she might have had a hematoma (she didn't - the incredible pain she was having was probably due to the expander not sitting right).

Anyway, should we be worried about the amount of pain she still has? Granted, it is less a couple days ago, but she hardly wants to get out of bed. She's been sleeping a lot. I figured it is normal for her to need to get the rest. And also the narcotics are probably making her super drowsy. When she does get up and walk around the room, she feels too much pain, as just the vibration of walking hurts her chest. (both sides).

I am worried and calling her doctor in the morning to see what they say. (she has no fever, or signs of infection. Though I have yet to examine the scars for redness - I will do so the next time she wakes up).

Can anyone share if this is common to have so much pain 2-3 days after surgery?

Thanks in advance. Good health to you.

MinusTwo

Yes, I think pain is normal for at least a week unless you are so medicated you're not thinking straight. But by all means, call you doc. I would recommend you call before undoing the bandages if the doc said to leave them in place.

PNWBCHgirl

yes , pain is normal and there will be some pressure on top of that till she gets used to expander. After about the 4-5 day everyday a better day, at least for me it was. Pain medicine may not be right balance for her they might change it. As you already stated you will be calling Dr in Morning hopefully he will have some good suggestions for you. Did they prescribe a muscle relaxant too? You might just ask about that possibility too. Hang in there, I know your worried and it is hard to see your wife in such pain and going through this . My husband was such a wonderful caregiver and on top of everything I was feeling and going through. Sounds like your the same kind of man.

Lautrec

thank you so much, for replying. She doesn't have the muscle relaxer but we will inquire about that tomorrow. Hopefully she'll have less pain tomorrow with tonight's rest. I am my wife's man-servant til she's back up on her feet 💪

Thanks and good health

Lautrec

thank you so much, for replying. She doesn't have the muscle relaxer but we will inquire about that tomorrow. Hopefully she'll have less pain tomorrow with tonight's rest. I am my wife's man-servant til she's back up on her feet 💪

Thanks and good health

Lautrec

thank you, I won't touch the bandages unless the doctor tells me to.

mustlovepoodles

I had a good amount of pain after my BMX, especially along the sternum. My sternum was Ultra sensitive for a pretty good while. To the point that I couldn't even wear that binder because it pressed down on it. I think I took something for pain at night pretty much every night for almost a month. During the daytime I could control the pain with Tylenol, but it night it bothered me enough that I couldn't sleep.

roserosie

I was in the hospital four nights after my bi-lateral mastectomy. I had nine lymph nodes removed and the pain was really unbareable at times. I was on morphine & OxyContin for at least three weeks after the surgery. I always say that I wasn't prepared for that much pain.

Everyone is different and has a different tolerance level when it comes to surgery. It took me at least a month to six weeks to start feeling some what human again. She will get better; I also remember feeling depressed from the pain & the pain medicine, but during this journey it's definitely just temporary. She will start to feel better it just takes time. Good Luck to you and your wife. Many prayers sent your way

PNWBCHgirl

Lautrec how are things going? Hope your wife is doing better and you both got some help from your Surgeon.

Lautrec

Thank you for asking. We got news yesterdayfrom her pathology that she has invasive stage 1 grade 2 in her left breast. Her lymph nodes were clear. Her surgical margins(?) were clear >10. but now we're worried what this means. Necrosis also present in that tumor.

Today she thinks her chest is swollen. It looks swollen, but that's the way she left the hospital. She feels like they are more swollen today but they look the same. She paged her doc and he wasn't concerned. We see him on Tuesday. So, lots of questions, and fear. Hoping the next.few days are better.

LRGO2016

Pain and swelling are normal. Pain can be nerve related too. I had stabbing pains with every breath for about two weeks after BMX due to one of the drains pressing on a nerve. My doc does not prescribe narcotics so it was a very difficult time. Ask for shot term but strong pain management and the muscle relaxers. The muscle relaxers will be a godsend during tissue expansion. It will improve but it does take time. Rest is what she needs.

GAMomma

my doctor is not a narcotics prescribed either,however I got help from my oncologist. Thankfully she was my doc before BC,due to my anemia.

It baffles me that a doc will not help his/her patient. I understand extended time,I definitely do,but the first few weeks.. no help?

Lautrec... I hope today is better for her.

mustlovepoodles

It's all to do with the War on Opiods. Millions of people misuse opioids or get addicted and now the rest of us are paying the price.

PNWBCHgirl

Hang in there. She will feel swollen from time to time even during tissue expansion. But like you said she will look the same as when she got expanded. Tuesday at this point probably feel weeks away. And I agree with LRGO2016 once drains out she will probably feel much better. I know each time once they were out it was a night and day difference for me.

Make a list of your questions for the doctor, so you make sure you cover all your bases.

MinusTwo

Lautrec - swelling can last 6 weeks to 6 months. She will have the same thing after exchange if she's doing reconstruction. The best advice I was given was to step away from the mirror - for several weeks. Sorry about the pain. I had all the meds I needed but I don't like to take them.

Lautrec

thanks for the replies everyone. You've been very helpful.

Lautrec

thank you for all the recommendations.i am the patient and I appreciate all the help you've given to my husband. It's day 7 today and my expander area is feeling worse everyday. It's like I have an elephant on my chest. (That keeps getting bigger and bigger)

I see my oncologist today and both my surgeons tomorrow. I'm hoping someone can see my expanders and the swelling around my arms to tell me this is normal. My arms stick out and I look like i'm in football player stance because my arms are completely swollen underneath and i can't put them down my side.

I know I needed this surgery but now I want to find a solution to give my body peace.

Has anyone on this gone straight from expanders to an implant without any fills? I would likethese expanders out of my body as soon as possible.

If you have done this could you tell me how long you waited and how your implants turned out?

Trying to find the soonest way out. Thank you!

Lisey

I had severe pain due to the TEs, to the point my pec muscles were contracting to try to remove them. I had the TEs removed about 2 weeks after they were put in and all the pain and horrible iron bra went away. I'm so happy flat and feel 100% back to myself. Honestly, not enough women even consider being flat and fabulous. I can't believe how good clothes look on me now and how normal I feel. https://www.nytimes.com/2016/11/01/well/live/going-flat-after-breast-cancer.html

ml143333

Lauratec - I hope that your body will continue to recover and things will get a bit easier for you.

After surgery, it is quite normal to have intermittent pain and certainly swelling. Swelling that is worrisome should always be checked out with your physician because he/she can determine if it is lymphedema or not.

I had a BMX and went direct to implants so I don't have much experience with TEs.

PNWBCHgirl

hopefully your Dr's will have some relief for you and some answers. I had fills in my expander but had a friend who only had a couple fills she was smaller breasted to begin with. PS would be able to answer this for you. How are your drains outputting? It sounds like maybe your fluid is collecting.did you have lymph nodes out as well. My arms hurt more due to the node removal than the expander.

MinusTwo

Lautrec - once they start filling the expanders, they will sit differently in your chest and maybe not pinch so much. Very few people find them comfortable, but it does get better.

mustlovepoodles

Lauratec, I did not have recon but I did have a lot of swelling under my arms. I couldn't put my arms down at my sides for several weeks. Eventually the swelling got better and the area softened , but it still looks like I have small puppies under my arms. At least it doesn't hurt!

PNWBCHgirl

lautrec how did your appointments go? Hope you got some reassurance and some solutions.

Lautrec

Thanks for the replies. I'm writing for my wife again. Her appts yesterday went well. Though we are thinking of changing plastic surgeons. Ours is always at least an hour late and gets bothered if we mention it. He also rushes her and seems very dismissive with her concerns. (pain mostly).

Today she woke up fine (considering) but after a couple hours away got stabbing, sharp pains (10+ level pain) couldn't move, walk, or lay in bed. She was only 4 hours from her last norcos. She took two this time. Her other doctor, who we like, we were able to get on the phone and she wasn't too concerned. Just said to wait for the norco to kick in. We are very worried she's getting this kind of pain over a week later. Everything we've read or heard has people feeling better after 4-5 days.

MinusTwo

lautrec - it really might be pain caused by the position of the TEs. Or, how much saline was put in during the surgery? I only had 50ccs, but some docs believe in filling up a lot. So the stretching also could be causing pain. But it's good you are calling the doc. There's no way to know what might be causing the pain. Also I believe it's important to wean off the narcos as soon as possible. (if for no other reason than the darn constipation)

I considered changing plastic surgeons part way through my expansion process. My PS was dismissive and didn't want to take time for my questions - in other words, pretty much a "surgeon" who knew everything. I figured it would be difficult to find another doc to take over in the middle of the process. I actually did go for a consult with a doc at another institution. He confirmed that my PS is one of the best in the nation and that the pains & my questions were normal & my TE positioning & prognosis looked great. This 2nd doc was nice enough to tell me I could call him any time with questions and he'd be happy to answer, or just talk me down off the ceiling. And he wouldn't allow me to pay for the consult. Whew. I stayed with my original PS and kept asking questions. Over time he became more personable & respectful - and he did in fact do a fantastic job.

Lautrec

Thank you, MinusTwo. How long did you have that kind of pain for? The duration of the TE's? Or did it become more bearable with plain tylenol or motrin? My wife's pain was at a +10 this AM. We are consulting with another PS, but that's in two weeks. It will seem like an eternity if she's in this kind of pain every day.

MinusTwo

lautrec - I'm so sorry about your wife's pain. I didn't ever have +10 pain. My son says I complained about the pain all the time, but I remember getting on with my life after two weeks. I took only aspirin during most of the 6 months for filling & waiting for final stretching before exchange. I did insist on really slow fills - only 50ccs per fill - and only every other week - but that's down the road for you yet. I do know that when they start filling the TEs, lots of women get relief from pain because of the way the TE is sitting in the chest cavity. Hope you can get some relief soon.

Jiffrig

lautrec...is she sleeping in an elevated position? I slept on a wedge and was very comfortable. Sleeping flat is horrible. That seems like a lot of pain for a week out. Did they give you Ativan or muscle relaxers? Keep up on those to keep anxiety down

Lautrec

We think the night before she had the bad pain, she was sleeping more flat. The last two days have been much better, and the pain, while still there - is much more manageable. She has vallium but didn't like the way it made her feel. She's reading its dangerous to combine with the narco, so she's afraid to put that into her system too. She might reserve those for when she's on less narco and needs to relax (like before they do the saline).

Thanks for replying!

Lautrec

MinusTwo

Lautrec - glad to hear your wife is sleeping better in an elevated position. Another option to try is staying in the recliner. I absolutely could not lie flat, or get in and out of a bed for awhile.