Pain post Axillary Lymph Node Dissection

Bren58

Dont, I wish I would not have had the surgery either, but I could not get any of my doctors to rescan me after chemo. I think that if I would have had a PET scan they would have seen that nothing was showing up.

Steno, I am 17 months out from surgery and still have pain and numbness. At this point I don't think it will get better. I still do PT several times a year to help with the tightness. So far I have not been dx'd with LE, but I know I am at an increased risk because of  the six surgeries I have had to the area.

Home, I also had 29 nodes removed. None had cancer. I had all of the level one nodes taken out. There are 3 levels of nodes in the armpit/ breast area all in slightly different areas. The surgeon decides which levels to take depending on tour biopsy and scans. The nodes reside in a "pad" of fat and tissue, so they take out the whole "pad". When I asked my BS about the number of nodes, he told me that we all have a  different number of nodes in each area. While I had 29 in level one, someone else might only have 20, or might have 35. It's not like fingers and toes where we all have 10 of each (hopefully)

HomeMom

Bren thanks for the clarification. I just don't know how many are left! I wonder if that increases your chances of LE? I was told it would take about a year, but I've seen others here way beyond that and still having issues.  I am under the impression I have one of if not the best BS in Orlando, so I'm expecting a nice recovery.

Bren58

Homemom, unfortunately there is no way of know how many you have left, however your surgeon should be able to tell you if he/she took level 1, or level 1 & 2 nodes. Level 3 are rarely taken unless the cancer is very extensive. Also, there are women who have only had SNB or only a few nodes out and have LE. On the flip side there are women who have had all level 1 & 2 nodes out and still don't get LE. LE is one of those conditions that is not very well understood. Having any nodes out increases your risk and the risk is lifelong. Some go years with no problems and something triggers it and they get LE.

there is a wealth of LE info on this site if you have not seen it

http://www.stepup-speakout.org

HomeMom

:Thanks Bren that was very informative. I have a PT appt this Friday. I want to get my arm more flexible - I've experienced chording so I want to know what I can do at this point 

Stenokim

home mom, hopefully the pt will help you.  I have the numbness in my armpit, back of my arm and part of my back.  It's so hard now to shave my armpit because I can't feel it and I'm so afraid I'll slice it up, as they warned me to avoid cuts, burns, bug bites, pretty much everything to that arm. That's impossible.  I've had a cut, bug bite and burn all since the surgery and so far so good, no LE yet.  

Bren, great explanation on the nodes.  I hear at MD Anderson they're working on some test to determine the amount of lymph nodes we all have.  I can't imagine 29 removed and they were all clean, though that's gotta be peace of mind.  I was mad that 12 were removed and they found a teeny amount in one.  My doc said the more that are removed, the better chance of LE. But then I could have 30 left or 10 left.  Hopefully 30.

HomeMom

Stenokim I plan on using a cream on my armpit to remove hair until I can feel my pit again.... I better be able to feel my pit again!

linzer

Homemom - I think I read somewhere we're not supposed to use the cream or the razor, only an electric razor. I forget why though,.. anyone?

Bren58

I think I read no razor, because of accidental nicks and no cream because of possible reaction/rash to the cream, and no waxing due to the trauma it can cause. I use a razor (carefully) because their really isn't a good option for us ALND girls and it's the thing that works best of me. Of course because of the deep "cavern" in my armpit it doesn't really get all the hairs

LoriWNY

Hi ladies.  Get a suction cup mirror (got mine from Bed, Bath & Beyond) to stick to the shower wall to aid in shaving your numb armpit!  My BMX & right ALND was over 18 months ago and my right armpit is still numb.  My right breast and shoulder are also very tight.  I too heard about only using an electric razor but I still use a blade and am VERY careful.  I have heard some women have laser treatments to remove their armpit hair after BMX/ALND but have not looked into that.

I have gone to PT and currently receive Graston/myofascial release massage on my arm/shoulder.  I recently found a therapist who is performing breast massage as well as arm massage for me.  I also swim, practice yoga, and do my PT exercises regularly.  All have helped tremendously, however, some days the tightness/fullness is worse than others.

Stenokim

I'll think of you all next time I'm carefully trying to shave. I too have the cavern area and I'm trying to pull the skin flat with one hand and shave with the other.  I'm so glad to hear I'm not the only one with all the tightness either.  And it's like Lori said...some days I feel close to nothing, the next day it's so tight and I feel all puffy under my arm, but it's not puffy.  Then sometimes I feel like something is running down the back of my arm...nothing there...or feels like a hair or spider web is on my arm...nothing there, and so on. But we are all glad we are still kickin, right?

Cuculi

good evening! Hope you all had a nice weekend.   I have bee following your last posts and finally I have time to answer. 

I feel that I can only be understood in these posts. My husband sometimes think I exaggerate...if he went through this he would not be able to handle it...

Regarding ALND, thanks for the info shared. I had no idea about the levels of nodes nor the discussion about taking them out or not.  I found this link that it is interesting http://www.cancer.gov/clinicaltrials/results/summ...

Regarding the arm, it sucks, after reading this link it sucks even more. In my case, I have to admit that my arm has a good range of motion and some days I forget about my pain. Some other days though, like the last week, my arm feels like I have a bruise between the elbow and shoulder. In the morning even my wrist hurts!  And I just can't stretch my arm to pick up something from the floor or my closet. It is so frustrating! When I think I am getting better something happens. Today I wasn't able to swim properly.  All this puts me in a bad mood... Ahhhh! With 37, a child of 4 and a husband my frustration is even more. 

My armpit still feels numb most of it... I had removed my armpit hairs with laser so hairs have not really been a problem to me. However I did wait to shave the few hairs I had until I felt something. 

I have visited my PT last week. Will visit my acupuncturist again ... Haven't been there since  January. It did help me. Plus yoga, Pilates, and homeopathy. Massage has helped for my back.  I try everything! Something has to work! I just need more time to try everything!

Take care

Bren58

cuculi, I am sorry that you are having issues. There is such a step learning curve after this surgery. We try what we can to alleviate the pain and increase our ROM. When I was at my PT a couple weeks ago, I was voicing my frustration that it has been almost 18 months since my surgery and I am still trying to figure this out. My PT told me that of course I am because the situation is always changing. And she's right. Some days are good, some days there is some aching, some extra fluid, more numbness that usual. Some days I have to wear my sleeve, but after a few hours that starts to hurt, so I have to take it off. I think much of what I am experiencing maybe  the same for many others. Thankfully we have this site and so many that have gone before us to help us along the way.

Cuculi

Thanks Bren for sharing!

Finally today I feel my arm better! I have not found a pattern for my pain.  As you said everyday is different.

I would say that I feel ok... lets say 80%... but I  need that 20%...my arm, some tiredness, some days the frustration...As one of my school teachers always said: "patience and good mood".

I have not used a sleeve... Should I? 

Take care

Bren58

cuculi, if your PT is a certified LE therapist, they should be able to measure and fit you for a sleeve. Talk to your PT about what he/she thinks about wearing the sleeve during exercise or when it is aching. If you get a proper fitting sleeve (which can be a challenge) it might help.

Cuculi

Thanks Bren for your reply and explanation!

I will ask about it!

HomeMom

The PT I saw is LE certified and told me to use a sleeve if I want to play golf or if I'm traveling and have to lug luggage around. I was just starting to play golf before dx and this bums me out. It's hot here in Fl, I can't imagine wearing a sleeve.

DontdoALND

My understanding now (found out by talking to a good surgeon) is that they just dig in the fat pockets and pull that out.  Then pathology goes thru it to see how many lymph nodes are in it.  Not a good process.  I'm a year out and the pain is worse.  I was fine after my first surgery and didn't need to have the second one that Vanderbilt recommended.  It was 8 months after the first surgery and Vandy cut scar tissue out.  I Now know that is dumb (second doctors words) because the scar tissue can contain nerves and vessels.  Removing it causes a great amount of damage, pain, and more scar tissue.  The surgeon that did this to me should not have a license to do this to anyone.  She lied about the risks. 

HomeMom

Almost 5 months after my surgery I still have a LOT of numbness. It only got better marginally within 30 days of surgery.  I talked to the RO about this yesterday. He confirmed that they take a section out that they suspect is close to the SNB area and have no idea how many they are taking out. The PS believes it will take  up to a year.

linzer

I'm only 1 week out from ALND. I had only 9 nodes in level 1 and 2. So far, just a bit of numbness near the edge of the armpit running parallel to where the bra strap is (hope that makes sense). I get a tugging sensation sometimes when I stretch my arm out - for example to wipe a spill on the floor. Otherwise, no pain or tingling or numbness. I think it's so fascinating that we all have a varying amount of nodes and not a set amount like so many other parts of our bodies. I am so sorry to hear people struggling after SLND or ALND. I keep hoping that I will not get LE or cording or other complications but I realize there's no guarantee. The good news is that my path report came back with no evidence of cancer - for that I'm so grateful!!

Linda-Ranching-in-the-mTns

Howdy all -- I am just checking in with a small reminder to keep moving your arms!

I had cording develop on lymph-node removed side after double mastectomy in November of 2012 -- and was lucky enough to find a lymph-edema-specialized physical therapist, who basically cured the cording in about 6 months, and taught me how to do lymph massage to relieve any swelling (or potential swelling) on that side of my body.

Unfortunately, I waited a bit too long (my arm was really sore, and it was so much easier to use the "good arm" -- that I got in the habit of not moving the affected arm more than I needed) So, surprise surprise -- arthritis set into the shoulder joint, and now I have permanently lost some (fairly considerable) range of motion unless I opt for shoulder surgery, but I have no intention of getting more surgery for awhile! BMX and reconstruction was plenty for the time being!

Anyway -- just a warning to keep moving those arms-- even if it is uncomfortable -- because the old adage "Use it or Lose it" has never been more appropriate -- and the more you gently move to full range of motion the stronger and more flexible your muscles will become. Gentle stretching is plenty to start -- just keep it moving.

My best to you all -- on a happy parting note -- I got married June 14th and have never been happier in my life!

Linda

Hopeful82014

Thanks for the really great reminder to keep moving, Linda. Those are words to live by! I hope your shoulder will loosen up over time. 

Felicitations on your nuptials and best wishes for a long, happy and fulfilling marriage.

Cuculi

congratulations Linda!!! You must be so happy! I believe that being well emotionally helps fight cancer. So good for you! 

Regarding the arm, I did not get any indications as well. I was lucky to find an excellent PT.  I started Gyrotonic 3 months later and now Pilates which I am sure it helps coz I am moving always my arm as Linda says.  However I feel constant tightness under one part of my armpit. The good thing is that my range of motion is ok, not perfect but I can use it for my all my activities. So keep moving it. 

Deblc

JoJoy, I would really recommend you get physical therapy, if you can. I did not receive any instructions after surgery, and 7 months later (when I was ready to start radiation) I still could not lift my arm. Therapy helped me immensely to recover range of mention. Almost one year after surgery, I still have tightness across chest and under arm, still don't have complete ROM, but I have been lax about keeping up with my exercises. I'm sure if I was more vigilant about exercising, my ROM would be a lot better.

Bren58

Jojoy, if you just had surgery last week, you are still healing. Don't worry about trying to do too much just yet. Yes move your arm, but don't try to do any major stretching or lifting. Let it heal. When you go back to your surgeon for your post op check, make sure to ask what he/she recommends. If the tugging tightness remains, then by all means get a script for PT. Try to find a therapist who specializes in dealing with breast cancer patients as they have should have more training to deal with the cording. Here is a link that might be helpful. http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

Stenokim

Johoy,  I was told to start the exercises just a couple days after surgery...walking the arm/fingers up the wall.  I can't say I'm pain free, but my ROM is all there.  I pushed myself hard, started lifting weights about a month out, started very light, 2.5 lbs on shoulder presses, forward and side lifts, and am now up to 20 lbs.  I have a lot of numbness and if I go more than three days without working out, the chest and arm area starts getting really tight.  I have also gotten massage therapy pretty regularly for the chest, back and arm and it's helped a lot.  Good luck.  You're only a week out, so give it a little time, but try to move your arm at least a little every day.  Kim

Linda-Ranching-in-the-mTns

Cuculi (and all who have tightness in the armpit) -- when I was getting the physical therapy for the shoulder (which came after the cording PT) I also joined "Massage Envy" and always got a deep tissue massage before PT so that the muscles were as pliable as possible... and one of my masseuses regularly "dug around" up in that affected arm pit, with incredible results! (followed by stretching routine on my part to keep it loosened)

If you are currently getting PT you might check with your therapist to see if deep tissue massage prior to your appointment would be beneficial--- and if you aren't getting PT yet (or ever) you might check with your oncologist to see if deep tissue massage is recommended (we are each different, so perhaps it would not be wise in every case). My insurance did not pay for the massage, but it seemed like they should have, considering the HUGE improvement I saw each week and the incredible easing of tense muscles... a bit of (percieved) pampering can go a long way towards our recovery and general enjoyment of Life!

I know that for me, especially while taking Letrozole/Femara (which seems to dry out or somehow tighten all the tendons and connective tissues, causing joint pain and stiffness) the deep tissue massage has been extremely helpful, along with a regular stretching routine. For me it is not only the cancer/node removed arm, but now (due to the drugs) ALL the joints, especially ankles and knees in my case, which have become stiff and respond very well to some extra manipulation and TLC. If I go without my daily walk in the woods, I really feel it -- the walking (on soft forest floor, over uneven ground) is SO beneficial -- and gets me out into Mother Nature, to appreciate the trees and the wind and the tall grasses in the meadows -- all truly wonderful for the soul!

When I went off the Letrozole/Femara for 6 weeks around my wedding/honeymoon, within a week many of my aches and pains improved greatly -- reassuring me that the sort of general all-around "old" feeling (especially of stiffness) I often have these days is actually just SE and not permanent -- that was a wonderful discovery for me!

Linda

roadrash

This was fantastic information. I found this site because of the AWS cording issue I continue to have since my mastectomy back in October 2014. I had to search through many different counties to find a PT person that understood what cording was and how it affects our daily living. Currently, I take Neurontin, Ultracet and Vicodin (prn) for the pain. It helps take the pain down by 50 percent. Prior to the meds it was too painful to move my right arm that I started to guard it.

Bren58

roadrash, I am so glad you found this site and were able to find a qualified PT that can help you. With time they should be able to loosen the cording and help with your movement and pain.

roadrash

Hi, Thank you for the feedback. Yes, I was able to find a qualified PT however the message caused an increase in inflammation so now I just see her for range of motion stuff. I am hoping that it goes away but it really does seem to get bigger and more pronounce

d

Bren58

roadrash, I always felt sore for a couple days after each session with the PT for cording, but in the end she was able to almost eliminate that tough cord. See if your PT can do myofacial release. That s what helped me the most. It doesn't feel like they are really doing anything but it really works. My cording looked very similar to yours. I still have to go a few times a year for her to loosen it up because mine still gets tight, although it does not affect my ROM anymore.