Post/op pain discomfort day 9 is this the norm?

Ssd · June 2016

Right side still painful, tender, arm movent difficulty with slightest movement. Underarm feels like it's on fire, burning, tender to touch. Below underarm have hard, swollen "roll" of tissue extending towards back. Numbness throughout axillary, upper arm and partial back. 2 Drains still in place with moderate output, sites tender. Actual breast excision site with random shooting, gripping pain. Overall miserable, frustrated. Didn't think if would be a walk in the park but never expected it woyld be this severe with this minimal improvement, this far out. Never thought myself a wimp, but feel I'm in the fight of my life.

Moderators · June 2016

Hi ssd and welcome to Breastcancer.org!

We're sorry you're in so much pain but really glad you found our Community. This space is full of helpful, supportive members who are always willing to share their knowledge and advice. You're sure to get some responses soon!

Thanks for posting and we look forward to hearing more from you soon!

--The Mods

BarredOwl · June 2016

Hi Ssd:

Sorry you are having a rough time and feeling miserable. The numbness sounds reasonably normal, and may lessen in extent over time. Mine improved substantially, though this varies. I also experienced burning in the underarm. That is very unpleasant. It is nerve-related and should normally go away. Keeping soft pillows under your arm to keep your arm away from your body can help. I used pillows for a while, maybe one to two weeks.

Re the "roll", I am not sure if you are describing a "dog-ear" at the end of the incision or possibly a local fluid accumulation called a "seroma". Some describe a seroma as an egg under their arm. Mine was more of a shelf, was drained with a large syringe two weeks after drain removal (no anesthesia, because the area was still numb) and immediately felt much better due to relief of pressure. However, sometimes they are not drained, but given time to be reabsorbed. I'm not sure how they decide.

I also had "axillary web syndrome" or "cording" in the underarm and down my arm, which restricted range of motion and caused a severe pulling pain with extension of my arm. I could only raise my arms about 65 degrees. Here is some information about it. The degree of restricted range of motion was totally unexpected, very upsetting, and took patience and physical therapy to address.

http://stepup-speakout.org/Cording_and_Axillary_We...

Please call in Monday morning to describe the "roll", ask if it may be a seroma, and if you should be seen. Also explain your arm pain and range of motion issues (and if you are worried about possible cording), and ask about timing of a possible referral to a physical therapist (with experience in treating breast cancer patients, such as a PT-LANA) for an evaluation. They may refer you or suggest waiting to see if there is improvement at 2.5 to 3 weeks post-surgery.

Hope you see some improvement soon and feel better!

BarredOwl

Blessings2011 · June 2016

Yup - sounds about right... I knew there would be pain, but I also knew there were women who came home from their mastectomies, took a Tylenol, and ran a marathon the next day. (Well, not really, but it seemed like it.)

I cried every day for a month, I was in such pain. I had a BMX with recon. I think the BMX would have gone O.K., but the recon does a number on so many muscles and nerves, and the TEs can really exacerbate any pain you have.

However, I found that since I didn't want to be a weenie, I wasn't taking the pain meds they sent me home with. After some strong encouragement from the sisters here on BCO, I started taking the pain meds (Norco and Valium) around the clock. My DH got up to give me my 4 a.m. dose. After a few days I could tell the difference. Not long after that I was able to relax a bit and reduce the dosage.

Remember that pain stresses a body, and a body that is stressed does not heal.

You're not even two weeks out, so please be gentle with yourself.

Barred Owl gave some good reasons for the discomfort you may be having, and if you are that miserable, by all means contact your doc.

Wishing you the best....

Maya15 · June 2016

Hi Ssd, I had the same surgery on the same day as you and I have the exact same problem. Arm is killing me, first few days top of arm was numb, then burning sensation started and extreme pain in lower arm and forearm when I try to move it. Nerves under armpit that was numb are starting to wake up and sending out random shooting pains.

My surgeons told me the roll of tissue I have under the arm is the lymph node drain. Like you I still have my drains in so I'm hoping that will go when the drains get pulled. The hard bit in the roll does indeed feel like a drain tube.

My PS said the rest of it is nerve pain because the arm nerves converge in the area where they took out the lymph nodes. My prescription painkillers don't work for this but a friend who's a doctor and some of the ladies in the May and June surgery threads said there are meds for nerve pain. I thought of cording too but so far I definitely don't have any cords.

So far my plan of action is: asking BS for nerve pain meds next week, wait for drains to come out to see if that resolves some of it, ask BS about referral for PT, and had a suggestion if that fails to ask for referral to hospitals pain management team.

I'm very interested in anything that works for you so please keep us updated, it's nice to know I'm not the only one.

SuC · June 2016

I found the first week post op was fine but the second week I was sore and sorry for myself. The surgeons here in Australia don't leave drains in as long (only1-2 days usually) which I was very grateful for as I found them really uncomfortable.

Hang in there - it does get better. A soft cushion held between your chest and arm will help you to sleep. Take the pain killers regularly and do your exercises - they have a big outcome on your ability to regain normal movement.

Smurfette26 · June 2016

Sorry to hear you are experiencing such pain ladies. It was the node removal more so than the mastectomy site that caused me discomfort. Grateful I only had a small number of nodes removed.

I'm in Australia too. I only had one drain and it was removed 7 days post surgery. My surgeon doesn't believe in leaving drains in for longer than a week due to the increased risk of infection. All surgeons have different ideas.

Totally agree with what SuC said RE: exercise. The morning after my surgery a Physical Therapist saw me in hospital and started me on an exercise routine right away. I gradually increased my exercises under her supervision. I recovered well from surgery and have a full range of movement.

Ssd · June 2016

Thanks ladies for all the input. I feel better knowing my situation is not so different than what some of you've described. While it's unfortunate for all of us, it's comforting to have this level of support available.

I'm wondering if anyone has any thoughts on the following. Based on the findings of the core bx, the BS recommended lumpectomy followed by radiation. Due to my familial hx, i chose instead uni BM with sentinel node bx. The NP explained my surgery would consist of a simple mastectomy with sentinel node excision and bx. That meant they would take the sentinel node and up to 5-7 more nodes (depending on if cancer cells were present in each node), until clear. According to the pathology report, the sentinel node was found to contain no cancer, but yet they took 13 more nodes and all were found to be clear. What would be the reason for continuing to examine this many nodes. I plan on asking the BS Monday but was curious if anyone has experienced anything similar.

Smurfette26 · June 2016

I would certainly be questioning the removal of so many nodes.

Thankfully my surgeon is not a fan of removing nodes unnecessarily.

DaraB · June 2016

Ssd, may I ask if you underwent genetic testing prior to surgery? You mentioned that you have family history of bc. My surgeon said I'm a also a candidate for lumpectomy, but as I'm the 5th person in two generations to be diagnosed with bc, she said I should have the testing to determine the best course of action. My sister had a single mastectomy, and I remember the drains were the hardest and most painful part of the surgery.

Ssd · June 2016

DaraB

Because of my sister's later age dx's, my BS decided to wait on genetic testing, to see the path report as he said it would determine the need. Im now awaiting the genome DX to result. My history is two sisters, one neice who've had BC. The first sister, early to mid 50's, has had two separate bc's, she was told unrelated, in 1993 stage 5, and '96, unknown stage. Other than severe arm lymphodema, she is doing well, no recurrence. My oldest sister, mid 60's, simple mastectomy, unk stage, remained in remission until her death unrelated to BC. My neice, my eldest brother's daughter, died of BC, unknown stage, was dx'd very young, late 30's early forties? I will have the testing, as I have 2 daughters, 32, and 41.

There is so much information to sift through, but I wish physicians and medical were more forthcoming with information and what to expect. I feel I had minimal support in this area, and much of it was conflictual, such as the lymph node amounts. And I'm an RN of 30 plus years. And I hold myself accountable as I could have done more homework, so that is the advice to anyone facing surgery, read these first hand accounts, and make appropriate preparations. Don't assume that because any previous surgeries have been a breeze that this one will be. I am extremely grateful for this site and for the support. Hope you can gain some comfort and peace regarding your decision on surgery.

clearly44 · June 2016

I was ok for the first 6 days with the anesthetic pain ball that was inserted into the wound. Now that it has been taken out, I am feeling a lot of tightness. I am taking Tylenol, but not the Vicodin that was prescribed for me. I am afraid of narcotics. Don't want to feel loopy or worry that I could become addicted. Does the Vicodin work much better than plain Tylenol?

TCurl114 · June 2016

Hi,

I had my surgery about 51/2 weeks ago and sorry to say you sound much like I did then. The pain and discomfort was more than I bargained for. I really did not know what to expect because I wasn't given a lot of info about the post-op stuff by either my BS of my PS so every day was a surprise. I was very much against being reliant on the pain meds but after a few days and MUCH convincing by just about everyone (personal and medical pros) and as Blessing2011 wrote, pain is stress on the body, and you will have legitimate pain for a while, I started taking the prescription pills as needed. Not to mention sleeping will be hard enough. Please take it from someone who was very against anything stronger than Tylenol or Advil (which did practically nothing in the beginning), take your pain med and muscle relaxer for as long as you absolutely need them. After a couple of weeks of weening off, the OTC stuff was fine for me. Some discomfort still exists but compared to the beginning, it's tolerable.

What I've learned in the past month: It's important that you allow yourself to feel crappy for a while. Your mind and body have been through a traumatic event. Give in and veg out till the worst passes; and it will.

BTW, while it's not usually my thing, having a good soul-cleansing cry every now and then seems to help.

Good luck.

ChiSandy · June 2016

With pain, it is key that you stay ahead of it. It’s much easier to go from a pain level of 6 down to 2 or 3 (the minimum level considered as “managed”) than it is to go from a 9 or 10 down to even a 5 or 6--and the milder the pain to start with, the less medication needed. I learned this after my first total knee replacement surgery. The lower the opioid dose that works for you, the easier it is to wean off it completely. And the less loopiness, which people prone to addictions enjoy as a “high” or “buzz.” I wouldn’t worry about becoming addicted unless you are looking forward to your next dose for a reason other than pain management. If you can’t stand that loopy feeling--or being out of control--you are at low risk for addiction, and that risk is further reduced if you find other side effects--like constipation or nausea--intolerable.

As to why so many nodes removed, sometimes the sentinel nodes (identified by whether they either take up the blue dye or “light up” on nuclear scan) have “hitchhikers” attached (lymph vessels are like branches in a bunch of grapes), making it impossible to remove just the sentinels without the hangers-on. I had only two sentinel nodes, but each was inseparable from a non-sentinel one. All four were removed and were negative.

clearly44 · June 2016

OK I'm convinced. I'll try one of the Vicodin pills. I need to relax and realize that I am doing myself more harm than good by going crazy with my 1 500 ml Tylenol wearing off after 4 hours.

ChiSandy · June 2016

OMG, one extra-strength Tylenol? Wearing off after 4 hrs? I’m surprised you noticed any relief at all! One Vicodin will give you more relief than two 500 mg. Tylenol, with half the amount of acetaminophen (the more concerning ingredient, since the daily recommended limit of it has recently been reduced from 4 gm to 3 gm). See if your doc can switch you from Vicodin to Norco, which has the same dose of opioid but only 325 mg. of acetaminophen--the dose of one std. Tylenol. One Norco 10/325 gave me better relief than two 500 mg. Tylenol, and as I got further post-op, one Norco 5/325 did the trick. Nowadays, if I need anything stronger than two extra-strength Tylenol, I take HALF a Norco 5/325! (And it’s been several months since I needed even that).

Maya15 · June 2016

I agree with others, take the meds you were prescribed, that's precisely what they are for, things like short term pain after surgery. I took my prescription narcotics round the clock for about 5 days. Then reduced frequency and alternated Tylenol and Advil for a few days. Took no narcotics at all after 10 days and now reducing the Tylenol/Advil. I have absolutely no need or desire for narcotics at this point (2 weeks from surgery).

Ssd how are you doing? I met with onco and BS today and they've referred me urgently for PT for the arm pain which seems to be a nerve problem. I also saw a pain doctor at the cancer center and was prescribed gabapentin for the nerve pain/burning.

TCurl114 · June 2016

I would also like to add, if you were prescribed Valium or some other muscle relaxer, be sure to take that, too. Although you may not recognize them as such, you will likely have muscle spasms, which are very painful.

I also curious to know how you are feeling, Ssd. Hope all is better.

Blessings2011 · June 2016

My magic potion turned out to be Norco and Valium.

Since the dosing instructions were different, I always had one or the other at a good level in my bloodstream as they started to wear off.

(ChiSandy - Kaiser took all their patients off Vicodin and switched them to Norco because of the reduction in Acetaminophen.)

clearly44 · June 2016

I am a Kaiser patient. I was mistaken, it's Norco they prescribed. It works. But after 3 pills yesterday, I feel kind of loopy this morning. What I don't understand is that I don't need any pain meds at night!? I am just fine sleeping. I have been sleeping in a recliner. I think it might be muscle spasms and the drain tube bothering me during the day. Is heat better to put on the area to calm the muscle spasms down ? Without the pain meds I just can't seem to get comfortable during the day sitting up or walking around. I had my surgery on June 9.

I don't want to lie flat during the day I think I need to be up and moving around. What do you all suggest???

Maya15 · June 2016

For me they prescribed Valium (low dose) for muscle spasms. It didn't work for me but it does for others. Otherwise, for me I have less pain when I get up and move around. Too much lying down and I get stiff.

Blessings2011 · June 2016

clearly44 - I was told to get up and move around during the day... this keeps the blood flowing, and helps avoid blood clots. Short walks are good. Lifting is not.

But there's a fine line between "moving around" and "doing too much"... so you'll have to find your balance.

Also, if you have drains, remember the more you do, the more drainage you could have.

As for heat, you need to be REALLY careful. Many nerves have been cut, and all the fatty breast tissue has been removed from beneath the skin. It is very easy to burn the skin with a heating pad, or get frostbite from ice packs. Both were prohibited by my PS.

You might ask your PS if you can get a muscle relaxer like Valium to supplement your Norco. Other than that, if you have been cleared to shower, a nice warm shower, with the water hitting your back, may help a lot. (Muscles like the pectorals and anterior serratus have origins in the back, therefore, you can often relax them by directing hot water on your back. But do not aim water at your BMX area until cleared to do so by your doc, and even then, keep the water warm, not hot.

So glad you are sleeping at night! That will help a lot. Also, watch your diet... if you are able, many of us increased our protein intake up to 100 grams initially to help healing. And - the worst thing about being uncomfortable during the day is that you are awake and focusing on what's wrong and what's hurting.

Try distracting yourself somehow... I read People magazine and watched brainless TV or funny movies in between walking around the house or the back yard. Nothing too strenuous mentally or physically....LOL

(And remember, while you may have a bit of a drug hangover from the Norco in the beginning, this is all TEMPORARY. You won't need narcotics for long.)

Wishing you a good recovery!

clearly44 · June 2016

Hi Blessings 2011,

Thank you for all your advice. Yes being distracted helps a lot I am better today. I decided not to take any pain pills since I have no pain while I'm asleep. Believe it or not I feel about the same as with the pain pills. I am not getting as freaked out with the tightening of the chest or the feeling of the drain. I took a nap after lunch and woke up feeling pretty good. I am up during the day doing some laundry and helping with meals If the muscle pain seems to come on then I take some deep breaths and it feels better.

Blessings2011 · June 2016

FUBC · June 2016

I haven't been able to sleep for the past week. I think I have seroma. I have no valium, only hydrocodone which doesnt help. I'm taking advil but not much relief. My problems starting after my first fill (which was 10 days after surgery). I lost shoulder flexibility again, I was doing fine before my fill, I could stretch easily, I even drove on my 10th day, I drove to my PS' appointment. Now, I can't do much, I am in constant pain. I can't work (I work mostly from home). I thought it would have been easier 2-3 weeks after surgery. Now I am freaked out. The pain is gradually increasing, not decreasing....

Sorry for venting here...I am frustrated, I keep crying bc the pain is sucking the life out of me.

FU-BC

mustlovepoodles · June 2016

FUBC, I think you need to let your PS know that you're in this much pain. Not much you can do about it tonight, but perhaps you can call them first thing in the morning.

FUBC · June 2016

Thanks mustlove

I have an appointment tomorrow morning. I was suppose to see his nurse for another fill. I called today and told them I need the doctor to look at my right breast. I will make sure he doesn't leave the room until he either drains the seroma or gives me a muscle relaxer. Boy I need a good night sleep.

Ssd · July 2016

Not there yet, but better. Site healing, still tender. Numbness over many areas ftom site to axillary to upper arm to back along with burning and needles and pins sensations. Pretty certain I have cording syndrome. Can feel hard string like structure extending from axillary out to wrist, with limited mobility and pain with hyper flexion. Suspect low grade lymphodema as right arm marginally larger than left with "puffy" areas. Fat pocket below armpit still larger than left side, truncal lymphodema? Both surgeon and medical oncologist seem unconcerned. I've decided after 3 months, if symptoms remain, I will either seek another professional opinion or demand a PT/lymphodema specialist consult. Feeling helpless and frustrated, BUT, greatful for the positive results! The oncogene results were positive, will need zero chemo, YAY! Treatment will be 5 yrs of Arimidex. Has anyone any experience or thoughts on this medication?

FUBC · July 2016

Ssd, I have been massaging the areas of numbness and it has helped me a lot. Note, I don't massage my breast for fear of doing damage...I will gladly massage it as soon as my doctor gives me the ok. I also had cordings, at least two I could feel on my right armit. I have massaged that gently and they have dissolved or at least I don't feel them when I touch the area.

You should push your doctor to send you to a PT...there's no reason not to...I heard it helps a lot with pain etc. Mine it's not until august 23rd because they were busy.

Great news on your oncotype and the therapy you're getting. I am a stage 1 also, but my test results are not back yet. The lab is holding them until my insurance approves or denies the pre-authorization. It makes me sick that the test results have been ready for a week and my MO can't have them yet...

barbski60 · July 2016

I was able to book my PT so my first appt was 2 weeks after surgery. I've gone 2x and both times were amazing ! The massages helped alot ! Highly recommend.

Maya15 · July 2016

Ssd, congrats on no chemo! I would recommend getting a referral for PT now. I've done 3 weeks of it and now have complete range of motion and am pain-free (am also on gabapentin for the burning pain). The PT therapist massages the arm/axillary/trunk etc and it's really helped loosening scar tissue and getting fluid moving. She tought me lymphatic drainage as well though she and surgeon both said the fat pocket isn't lymphedema, it's scar tissue plus hard bit underneath where the tissue expander is sown into place. She also gives me exercises tailored to where the cords are and they're almost gone now. Some PT could resolve your issues very quickly.

Post/op pain discomfort day 9 is this the norm?

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