PAIN! Month after Lumpectomy with 6 nodes Removed! Anyone?

singout

Everyone around me, including my doctor and nurse, are saying that I should be fully recovered and pain free by now except for maybe the swelling. Instead, I have what is called "Intercostobracial Nerve Damage". Where beacause of the lymph nodes removed, the nerves under the arm that run down the entire inner side of the arm (palm up) are affected. I cannot extend my arm fully. It feels like the rubber band was cut!

I also feel the spiders and ants slowly crawling up and down my breasts. I don't want ANY clothing touching it and the paing rotates in and out of pulsing, sharp, and throbing.

Any thoughts and support? There is no one around me to talk to. Thank you. Jenna 

SpecialK

It took almost a year for the discomfort from ALND to go away for me - I had pain and numbness down the inside of my arm and on the back where the tricep muscle is.  This slowly dissipated and I have no issues now at all and have basically full feeling now, even in the underarm.  It sounds like you might have some cording that is keeping you from straightening out your arm - have you considered physical therapy?  It could be very helpful, but I would suggest that you consult a lymphedema certified physical therapist.  If your surgeon refers you it is usually covered by insurance for a specified number of visits.  The spider/ant thing sounds like regenerating nerves, and will most likely go away over time, you are only a month out from surgery.  Good luck!  Below is a link to some physical therapists in your area:

http://bcresourcedirectory.org/book/export/html/700

singout

Thank you so much SpecialK! Very hopeful start! Sounds like you had even a larger area. i have just ben refered to a PT and should start soon.

I would love to hear from others.

SpecialK

You are welcome!  Did you have a SNB that removed six nodes or a full axillary dissection?  I had a SNB done during bi-lat mastectomy that did not involve a separate incision, but because it was not found to be positive SNB until post-op pathology I had a separate surgery, with a large incision, to remove the axillary nodes.  Also, I got a ton of relief from PT, hope you do as well! 

cookiegal

Yikes...4 weeks is still early. I saw a pain specialist 6 weeks out (pretty useless), but he said 6-8 weeks is still normal healing. Unfortunately I had arm pain for about 9 months, and mobility issues for longer.

Finding the right meds was tricky. Pain killers did not do much. For what ever reason anxiety medicine and muscle relaxers did help.

Don't push too hard in PT.

Beesie

What sort of an idiot doctor and nurse would be saying that you should be pain-free by now?  Sorry if that's impolite but seriously, they are just plain wrong.

I had 3 nodes removed and had numbness to my elbow for 3 months and numbness in my underarm area for 6 months.  And I had occasional sharp shooting pains down my arm that started about a month after surgery and continued for a couple of months (I think).

Although I had a MX, previously I'd had an excisional biopsy.  I had pain - sometimes sharp, sometimes throbbing - in that breast right up until I had the MX  2 1/2 months later.

The types of pain you describe sound perfectly normal.  But I agree that it might be a good idea to find a lymphedema certified physical therapist to help with your arm, someone who can tell you what you should - and shouldn't - be doing.

ali68

I was just saying to my DH the worse part for me still is where I had all my nodes removed. I have to say if that doctor had said that to me I would have hit him. It's the most painfull surgery and I woke up screaming with pain and begging for morphine.

You have cording but it does get better! What I did and still do is, both arms lift from waist to above my head as straight as possible 20 times. With good arm lift bad arm to ear so above your head. Try and keep straight but it doesn't matter to begin with, use good arm to push bad arm back so your armpit is facing you whilst doing this in front of the mirror. Hold this on a count of 20.

I have physio on my Lumpectomy scar, my neck and shoulders and also have mild Lymphoedema.

I had all the itching, numbness ( getting better) cording comes and goes even after 14 months. I would say the first year was the worst for me but I had all my nodes out so I would expect this.

Good luck Hun

lpk49

im 5 -6 weeks from lumpectomy and still sore swollen and ripping sensation inside breast-also now costochondritis.  but i dont dont think i am as bad as you and i feel so bad for you..  i hope the PT will help.

i also keep having docs and nurses saying...it shouldnt hurt and it must be your previous arthritis etc.  the pain is so different...it is nothing i have ever felt before.  it makes me mad them all saying they didnt cause pain.

Carla62

I had a lumpectomy and 6 nodes removed it's been three yrs and I'm still numb and living with pain everyday sometimes the pain is so bad I can't do my self exam ...

FireKracker

Its been over 3 yrs for me too.

I still have pain.

I suggest you get on the thread I hate LE.....the pros are there and they will give u lots of good info.

Good luck..

FireKracker

I also had 6 nodes removed.

Bren58

I had ALND surgery 6 months ago and still have pain. I did do PT for the cording and I finally went to a specialist that prescribed a compounded pain cream that comes from Derma Tran. It is great stuff! It has several different pain and nerve drugs in it and is applied topically so you don't have to take pain pills.

singout

GREAT NEWS!!!!!

I found an amazing healer. She was an oncology nurse and alternative healer. And now an actupuncturist and also does unconventional healing. She used an electric stimulator. something like you'd see out of a Frankinstein movie. Looks like a lightbulb on a stick. It massages for 5-15 minutes at so many volts and stimulates the nerves. From this one time my pain diminished over 60%, and nerve numbness over 70% and we dicovered that the complete hardness and lack of movement was from scar tissue! It was amazing. Lucky for me, my brother-in-lw has been a natural healer and had what is called a "violet ray" which is a similar tool but with a different kind of bulb. I now have one and my tissue is completely supple, I am virtually pain free, and I have almost no numbness!!! Electricity stimulates the nerves, regenerates them, and brings back the cirulation! You may be able to find on on ebay. I will try to find another source and write again here. I feel it is a miracle. Also to find out that on some people, scar tissue builds immediately.

My doctors however are ignorant, lame, asses, who knew nothing, and didn't know how how to help me and what to do.

tasha_111

Oh dear, sorry to tell you this, but I am 5 1/2 years from my lumpectomy, pain and numbness is still there, you just learn to live with it.

Sorry hun Jxx

New-girl

Almost two years out and the pain is more come and go but never gone. It gets better or maybe I have learned to ignore it most of the time. Numbness, itching and stabbing were more common in the first 6 months. Sometimes felt like a hot knife under my arm on the side. Now more small sharp pains and tingling. When it keeps me up at night I take either motrin or a muscle relaxer. It does get better but you are way early in your recovery.

slv58

this thread is timely for me. I am 5 months post LX and have been feeling moderate pain for about a month. I get the zinging and throbbing and just assume it is nerves reattaching themselves, but was concerned at how long since surgery I started feeling this. My breast was comfortably numb up till then. The thought of a breast exam in dec. has me cringing.

Beesie

Yes, that zinging pain is usually a sign of nerves regenerating.

Don't you love all these things that we aren't warned about in advance?

hobbesla4

Thank you for this thread. I did not have nodes removed, but I had lumpectomy about two months ago and re-excision about ten days ago. I have been having pain since the re-excision in my arm and shoulder. I mentioned it to my surgeon who said that it sounded like a muscle strain from the way I laid on the table in OR. Since seeing him earlier in the week, I have had pain and pressure in my breast that kept me up the past two nights.

I guess this pain is normal and that I should get used to it.

SafiAnnie

im now six months after LX and 5 nodes removed. I'm still numb in the armpit, but I've been taking gabapentin (Lyrica) for the pain which has worked very well up to now. I'm beginning to feel stiffness, as the scar tissue tightens I guess, and get pain after doing stretching exercise. But the GABA is great - I've tried a couple of times to wean off as I don't want to be taking more pills than I need, but the sunburn type pain returns, so I keep on taking it. GABA is a nerve pain relief, not like Panadol or Ibuprofen and has worked a treat for me. Have to be careful not to miss, as withdrawal can be problematic.

NoTime4This

This was exactly what I was going to suggest for someone with nerve pain. After a year, it should be about as good as it will get. For people where GABA doesn't work, there are other things to try, like SafiAnnie says. 

Anyone not satisfied with the oncologist's efforts might want to see a neurologist who might suggest a larger variety of medications. I have trigeminal neuralgia (permanent) and take Lamotrigine for that nerve pain. It probably wouldn't be the first choice for most but could be an option if needed.

Warning: medicine for nerve pain can mask the neuropathy you may get from chemo, so you may want to wait until after chemo to start it. Masking chemo neuropathy could make it permanent. 

maltomlin

Hi

I'm over 5 years out from WLE + 24 nodes removed. I must say that it took a while, a long while! before the numbness and occasional pains went (still some numbness...but I can live with that). Probably 12 to 18 months, but since then it's just fine. I am careful with that arm and whilst I might carry shopping etc, I don't ever carry anything too heavy.

In the early days after surgery, I made sure I exercised the arm properly. But that paid off and now have no pain etc. It still feels 'different' but I've got used to that and it's no problem.

Now I can do everything I did before (and more), I'm just careful to not carry anything too heavy.

Mal

tangandchris

Was it the PS or breast surgeon that perscribed muscle relaxers/anti-anxiety meds for pain? I have thought that a muscle relaxer would be better with the type of pain I have been feeling too. IDK, I'm only a week out so I know its too soon to expect less pain, but I'm just curious. Were ya'll given the muscle relaxer/anti-anxiety meds after you left the hospital or did that come later?

Bren-2007

I'm 6 1/2 years post lumpectomy and node removal ... and my left breast and underarm still hurt. I can barely stand to have a breast exam or mammogram on that side. My radiation doctor thought it was scar tissue. No one seems to really know why it hurts so bad. But I'm pretty sure after this long, it's a permanent condition.

Bren

bluepearl

I was in horrible pain for two years before it started to subside. Felt like a terrible sunburn under my arm to elbow, back pain in shoulder and just itching, burning, stabbing crap. I was very upset thinking this was now my life's course; but I read about a guy who had lung surgery taking 3 years to heal and felt hope. Make sure you address the pain rather than keep chasing it. The second time, I had sentinel node....two sentinels and one regular and much less pain. Both arms get cranky if I over use them but otherwise MUCH better than I first anticipated. Do not baby it. Use it for reaching and do the exercises.....you do not want frozen shoulder!

SueCA

I had surgery Dec 3rd and experienced excruciating pain for 5 weeks until I got Gabapentin I take 300 mg twice a day.

The surgeon just gave me a script for Hydromorphone 1mg every 4 hours for 30 days and said I should be good with that and see you in 6 months.

I was in tears with the pain and nothing I did seemed to help I called the Cancer Centre and other Breast Health Clinics, seemed everyone was passing the buck. Then it was Christmas week.  I finally got an appointment with my family dr last week to get the Gaba it works well every 12 hours and in between I take 300 mg of Motrin. The pain is FINALLY under control. 

I can tolerate the soreness and skin sensitivity and I am now doing the de sensitization with a soft cloth as was described on another thread.

I thought it was just me, as most lumpectomy with node removal are well on there way by the 2nd month.

This SITE is a Godsend, Thank YOU ALL for sharing your experiences with me.   

Quasi

OMG, I thought I was crazy  given the way my BS was answering my questions, it is now a month post op for me and this numbness/tingling/pain in my upper arm is driving me insane. I had a RX, with SLN followed by ALND (3/12 were affected) and immediate reconstruction with LD flap. Before the surgery I asked and researched the SE and was not informed about this at all. After the surgery the BS kept telling me that it will get better, but this numbness and pain running all the way down to my palm are driving me crazy and I was prescribed lyrica but all it does is make me very sleepy - it was useless, the doctor keeps saying that I need to use my arm but I am in so much pain I cannot use it...BS just do not get it really...ALND is certainly not a walk in the park, especially given that injury to the nerves happens...we are all living proof that it is very REAL...

Quasi

Please follow this link for research that discusses different types of pain following breast surgery...BS should not dismiss this..

http://www.rsds.org/pdfsall/neuropathic_pain_post_breast_cancer.pdf

Okiemomof4

Bren,

Your post gave me relief. I had my lumpectomy and sentinel node biopsy in May of 2012. I then had brachytherapy in June of 2012. My left arm is still not normal. I knew about the zingers. Those didn't bother me. They are pretty much gone. What bothers me is numbness in the back part of my arm, tingling in my ring finger and pinky, and pain in my arm. Hurts to use it much. I have great range of motion, but I think I should be able to carry a grocery sack on my arm without pain.

While I am sorry you are still having pain, I was relieved to know it's not just me. I go to my rad onc on Wednesday. I'll ask her about it.

JulieMI

I had severe cording after 18 nodes taken out.  My lymphedema PT taught me stretch exercise to do.  I faithfully did them twice a day for a year.  My lift arm is as flexible as the right one now.  The pain goes away after one year.  I do have permanent numbness on the outer side of my arms.  I accepted it now since it does not bother my function.

Irishgirl1160

I just had a lumpectomy and 2 nodes removed two weeks ago.  It's the same here, the Doctor seems so surprised that I am still in so much pain.  He told me most women resume there normal acativities after a couple of days.  I am feeling like a whimp that I am still in such discomfort and pain.  I am experiencing the same type of symptoms as you.  The burning and skin crawling along with sharp pains.  It feels like I am being tazered!

ronandvon474

Hi

it's been 2 yrs for me the pain gets so bad I want to cut the breast off. Now am going for a mastectomy hoping

To get rid of the breast pain after lumpectomy I think 2 yrs is long enough to wait. I don't knoe if it will help but am going to try. Thank