Post mastectomy pain

Options
Kymmy442
Kymmy442 Member Posts: 4

I had a skin and nipple sparing mastectomy this last Thursday. (6 days ago) I am still having alot of pain. Under my arm, down my arm, and all around the drain tube which enters at my rib, below where my breast was, running all around from the bottom, to the top, ending at my arm pit. Being that i live in a smaller community, in a rural area, my surgeon is over 200 miles away. I am scheduled for a followup next week. I will most likely have the drain removed then. I am getting about 25ccs every 12 hours from the JP drain. The fluid is getting clearer, but remains pink. The pain i have is pretty much everywhere except for the actual incision site. Under my arm is still swollen and numb...but theres pain deep inside. Im pretty tiny. 5'6", and around 110 pounds. Not alot of meat on my bones. I called my surgeons nurse, to let her know that im still in alot of pain and very uncomfortable. She acted like i was crazy. She said..."I just cant believe you are still in pain." Im very frustrated with her response. I heal well. Im active. But i metabolize medications very quickly. As evident with the high dose of blood thinners ive been on for blood clots for over 15 years. Its noted in my file as well, that not only do topical anesthetics not work well at all on me, but most medications do not either. She made me feel guilty for being in pain. Or like maybe something isnt right. I guess my question is...am i odd for having this much pain 6 days post op? How long is average for post mastectomy pain? Will i get feeling back under my armpit? And will it hurt more when i do?

Comments

  • ravzari
    ravzari Member Posts: 277
    edited April 2017

    It's not really abnormal to still have pain 6 days after a major surgery, especially if you had lymph nodes biopsied or removed. I'm assuming they sent you home with pain meds and, unfortunately, the nurse might have taken a cynical route and assumed you were a drug seeker if you called for more before the pills should have been gone or assumed you were lying when you said the pain pills didn't work and were, again, a drug seeker; it's unfortunate, but with opioids, if that's what was prescribed, a lot of medical professionals just tend to assume anyone asking for more or a higher dose or a different type is just a drug seeker. :(

    That doesn't make it right, but that is possible what the nurse was thinking if you called to request more or a higher dose of pain meds, and she may have thought the "pain pills don't work well on me" was an excuse to try and get extra pills.

    With my BMX, the incision sites didn't hurt at all, but the drain sites 'stung' a lot due to the stitches there, and because of how my arms were strapped down for the 4 1/2 hour surgery, my shoulders, arms, and upper back/neck were sore and painful for a good week and a half after the surgery itself. Mine was a preventative BMX so I didn't have anything done regarding lymph nodes, though from other posts I've seen here if there were SNB biopsies done or lymph nodes were removed, that can result in arm/shoulder pain.

    I could also feel the drain tubes in my chest on one side, and that side hurt a lot while stripping the drain, but not on the other. When I asked about it I just got 'that happens sometimes'.

    It also matters whether or not you had tissue expanders placed (if I missed that in your post, I apologize); if you have had those placed, it's definitely normal to still be in a good amount of discomfort/pain 6 days out from what I gather from other women who have had those put in. I elected not to reconstruct, so I don't have experience with that.


    THAT all said, everyone's pain tolerance is different; what I'd consider mild to moderate pain, someone else might consider unable to function excruciating level, which is also something medical professionals also sometimes forget. It may be worth seeing if you can get the office to have the surgeon call you back whenever they're free as opposed to just talking to a nurse; some offices are more open to doing that than others, however.


    Swelling 6 days out is still 100% normal; it can take 6-12 months for all swelling to fully resolve, though most see it fully resolve within 6-8 months, so it doesn't seem abnormal that you'd still be swollen under your arms as, even if no nodes were biopsied or removed, your arms were still stretched out for awhile and lymph flow does get disrupted as the breasts themselves have several nodes so swelling can be mild (and USUALLY temporary) lymphedema because of that, which can manifest in swelling and pain. Under my arms stayed swollen for a couple of weeks--it felt like I had 'knots' under there--while things started to mend and lymph drainage was re-routed to existing channels.


    If your surgeon recommended compression, definitely keep doing that; if they didn't, it may be worth asking why (mostly to find out if there's a medical reason it wasn't recommended vs. just the surgeon's preference) as, for me, wearing a chest binding vest the first 6-8 weeks after my BMX helped a lot with both pain and swelling.

  • Kymmy442
    Kymmy442 Member Posts: 4
    edited April 2017

    I didnt ask for more meds or stronger ones. As im not a big fan of meds period, unless absolutely necessary. My main reason for bringing up the tolerance to them, i guess, was to gauge the pain a bit better. Which i know is rather individual. I did have some lymph nodes removed. No expanders. Reconstruction will be later as i am also scheduled for hysterectomy in a couple months. I wanted all medical out of the way before worrying about the appearance. I am also taking care of my mother, who has stage 4, brain, lung, and bone cancer. There is alot going on. I wasnt given the option for compression. Of course, i was also not told about milking the JP drain or given extra dressings when i was released the same day as my surgery. I had to find out online, about the milking. I have had 15 blood clots since the age of 25. I am a medical mystery, as far as that goes...as ive had every test imaginable for that. So i was given compression socks for my legs, but nothing else. Along with the swelling under my arm, i have what feels like piano wire running all the way past my elbow, when i stretch out my arm. Extremely uncomfortable, but i continue my range of motion exercises. I am stubborn, and active, and rather independent. So the pain is frustrating me to no end. I want to do things that i just cant. And i just wasnt sure how long it would last. I read alot of forums online and it seems there are so many many women stronger than i. With little or no pain. With more complicated surgeries. So i feel a bit...well...not average.

  • ravzari
    ravzari Member Posts: 277
    edited April 2017

    I'm also stubborn and active and it was HARD to be inactive (for me) for 6 weeks, it took every last bit of willpower to not overdo or over stretch things.

    I have also read, on these forums, that when there is lymph node removal there is a bit more pain, usually in the affected arm, for a few weeks; for some women they end up with permanent lymphedema, and for others it clears up on its own. It seems to depend both on the individual and on how many nodes were removed in the area. Some have found relief by wearing compression sleeves, so that may be something to look into. There are a few threads on the lymphedema board that have brand/store recommendations and insurance might pay for them so that's worth checking as well.

    That forum also has some threads on lymphatic massage, which may be worth looking into doing either with a therapist or by yourself (youtube has instructional videos) to see if it helps.


    If they didn't or won't give you chest compression and didn't have a medical reason as to why, it may be worth looking into purchasing one; they're usually well under the $40 mark. I got a vest that's usually used for gynecomastia surgery which, honestly, is just a mastectomy for men. The bonus of that one was that I could roll it up over itself for even tighter compression if I felt like I needed or wanted that and, for me, compression really helped with the overall pain/achey feelings in my chest. You can also use an abdominal binder in a pinch, but those dig into the underarms a bit unless you modify them via cutting, so if your underarms are sore, that's probably not a good option.


    https://www.eabmedical.com/product/breast-binder/ is what they sent me home with (a blue and a pink) and it provided some light/moderate compression. That's the one I wore when I still had drains in as it was soft/stretchy on the sides and didn't push the drain tubes into my side.
    After my drains were out, I switched to this vest: http://www.underworks.com/power-compression-post-s... as I hated the velcro front on the other one, it was just too hard to get 'right' so it wasn't lumpy under clothes. A front closing compression sports bra works as well, though definitely go for front closing as it'll be hard (if not impossible) to get an 'over the head' style one on for a few weeks. I have one of those as well from when they did my revision, and it worked out pretty well for moderate compression; I did buy it based 100% on band size, however, as cup size was pretty irrelevant (and it's harder to find non molded cup ones than you'd think!).

    The vest is pretty invisible under clothes and looks more like a tank top or sports bra (if rolled up) under a shirt. The only thing about the vest is that it provides compression all the way down, so you get chest and abdominal binding. On days I wasn't finding that comfortable, I just rolled it up over itself into the 'sports bra' shape.

    I wore a binder every day for about 5-6 weeks, then at night until almost the 3 month mark before I was comfortable (i.e. I didn't wake up with a sore, slightly swollen chest) sleeping without one. My PS' recommendation was "at all times except for showering for 4 weeks minimum", but every PS seems to have different feelings on compression after a mastectomy.

  • Kymmy442
    Kymmy442 Member Posts: 4
    edited April 2017

    Thank you so much! I will definitely browse around a bit and see if i cant find something comfortable. I may be able to find something at the Breast Boutique at the cancer center i have my appointments through, on Monday. My hubby bought me one of the little camisole things with the pockets for holding the drain bulb. I wear them at night, because of lacking anywhere else to put the bulb. But during the day...literally all i wear is a silky, loose, button up pajama top, and tie off the drain bulb to the tie on my sweats. As its the only thing that doesnt send my nerves into overload touching my chest. I did speak to my surgeon this morn. He said i have whats called "cording". Lymphatic Web Syndrome. Causing the piano wire feeling down my arm. He said to continue the range of motion exercises and try lymphatic massage. He also said, for some women, it can last years. Kinda scary. I did read, however, that a compression sleeve helps with that as well. Itll be Monday before i can try anything really though. As i get my drains out then. And its impossible to find anything...and i mean anything here, that might work. Curse of living a couple hundred miles from a bigger city. Thank you so much, for responding. I cant tell you how much i appreciate it. 😊😊

  • BellasMomToo
    BellasMomToo Member Posts: 305
    edited April 2017

    I hope you don't mind me piggy backing on this thread....

    I had an UMX and SNB a little over 2 weeks ago. I had very little pain after my surgery. Saw my BS and MO earlier this week -- I am healing well. But some discomfort started in the past two days. The surgery site, especially the SNB site, is sensitive -- it's kind of like that tingly feeling you get after you get a burn. It's not swollen or inflammed. Tylenol helps with the discomfort.

    Is this normal? If so, how long will this feeling last?

  • SThompsonRN
    SThompsonRN Member Posts: 1
    edited December 2017

    I had a bilateral mastectomy 6 days ago as well and had 2 of my JP drains removed today. The first 4 days were AWFUL!! Yesterday was a little better and today I had even more improvement. I was on pain pills around the clock until today. The nerve pain was the worst and I have pain in my axilla with numbness down my arm. I'm hoping when the other JP drains are removed the pain will improve.

  • Moderators
    Moderators Member Posts: 25,912
    edited December 2017

    Hi SThompsonRN, welcome to Breastcancer.org! Sorry for what you're here... but glad that you've found this wonderful Community! Hope you keep improving and recovering from surgery. If you wish, you can also join the November 2017 Surgery Group or the December 2017 Surgery Group, where you can meet others under similar surgery timing/circumstances than yours.

    Hope this helps!

    The Mods

Categories