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Topic: Numb under arm after mastectomy

Forum: Breast Reconstruction — Is it right for you? Discuss timing and various procedures and techniques.

Posted on: Dec 14, 2008 02:01AM

njnative wrote:

I have numbness under my armpit to the point that I can hardly feel when I put on deoderant. I also have pain when I lift my arm or bend it behind me. My surgery was in May. My PS says it will come back but it feels the same. Does anyone else have this???

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Dec 14, 2008 02:27AM gymgirl wrote:

Hi njnative- My armpit and and about 3" further down my arm on the underneath side were numb after lymph removal with the lumpectomy. Then the mastectomy made my breasts numb too. It's been 18 months since the first surgery and it's mostly still numb. It feels weird to shave on that side but I do anyway. I did get some tingly feelings in my upper arm that my ps said were the nerves regenerating but I didn't gain much feeling back. Hopefully other women will be able to share better news. Sorry! The numbness in the armpit doesn't even bother me anymore; I'm so used to it. I was more worried about the incision in my armpit from the node removal. But it healed up fine and hardly shows anymore so I can still wear tank tops. The pain with movement is gone too. I think regular stretching made the difference. My chiropractor does a treatment called ART - Active Release Therapy which really helped.

BLM 8/07, silicone implants 12/07, 3-1/2 yrs on Arimidex, BRCA2+

Dx 4/20/2007, ILC, 2cm, Stage Ib, Grade 1, 0/5 nodes, ER+/PR-, HER2-
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Dec 14, 2008 03:35AM VisaliaMom wrote:

Hi, njnative!  I, too, had a mastectomy in May.  I am still numb under the arm and along the incision.  Dr. told me sensation will probably not return.  In July my affected arm started to swell and also had pain when I lifted my arm over my head.  I found what felt like a "tightly stretched string" under the skin above the armpit with pain that went down to my wrist.  My oncologist referred me to a certified lymphedema therapist.  She taught me to do the manual massage for the lymphedema.  I also had AWS--Axilliary Web Syndrome--also known as cording.  She did some massaging down the cord (the tightly pulled string) to help break the tension.  After a few massages the cording and pain was gone.  She also taught me stretch exercises, which I do daily, to help keep the cording from returning. The stretch exercises also help to keep full range motion of my arm.

Dx 4/15/2008, IDC, 3cm, Stage IIb, Grade 3, 1/8 nodes, ER-/PR-, HER2-

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Dec 14, 2008 06:48AM Farrah wrote:

Hi njnative,

My surgery was also in May and I have numbness in the lower part of the armpit on the side where I have had the sentinal node biopsy. I'm just more careful when I shave on that side.

If I get some sensation back it would be great but I'm not counting on it :-)

I'm used to the breast numbness now too. I just consider my breasts to have the same sort of sensation as the soles of my feet! Strange huh?! but thats just the way I rationalize to accept that my body feels different but it's still MY body.

Farrah 

bilateral mastectomy May 08. Silicon implants July 08

Dx 5/8/2008, DCIS, 6cm+, Stage 0, Grade 3, 0/1 nodes, ER-/PR-
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Dec 14, 2008 08:08AM ehall wrote:

Hi there--I too had numbness under the armpit and down the underside of my left arm (cancer and SNB side).  Surgery was a year ago September.  I did lots of exercising, PT massages, etc....have most if not all the feeling back. Some drs.say after a year--whatever feeling you regain is all you can expect.  My 2 cents...if dr. agrees...do lots of exercising (stretching. light weights) and massages--helps with circulation especially if you had SNB which compromises lymphmatic system--the body's drainage system. Good luck!  Erin

Dx 7/6/2007, DCIS, 4cm, Stage 0, Grade 3, 0/6 nodes, ER+/PR+
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Dec 14, 2008 08:11AM, edited Dec 19, 2008 04:50PM by monee

I have numbness from my lymph node removal done nine years ago. I think permanent numbness is common.

NOTE: I had 18 nodes removed.  This was done before SNB was standard of care.

Dx 6/6/2008, IDC, 1cm, Stage II, Grade 2, 1/10 nodes, ER+/PR+, HER2-
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Dec 16, 2008 05:32PM missrwe wrote:

This topic has spurred a need for me to rant. Loss of sensation - numbness - from the SNB should be RARE, RARE, RARE - NOT COMMON!!!!

I think the breast surgeons should be required to keep statistics on how many women they leave with no sensation so women can evaluate their skills and choose accordingly.

Too many people think this is "COMMON & EXPECTED" - even the Hopkins Breast Center Ask an Expert responded to this question with that answer. NOT TRUE. Is it sometimes unavoidable? Yes - is it common? NO. NO. NO.

The surgeon must be CAREFUL when making his incision. It takes a FEW EXTRA MINUTES to be careful - and some of these surgeons are going for the land speed record in mastectomy - it's all about size and speed with this type. (almost always men). They actually brag about it.

And yes, you get used to it. Should you have to? NO!

A person can get used to anything - it doesn't mean she should have to in the first place.

HEY SURGEONS - WE WOMEN ARE LOSING ENOUGH ALREADY - EVERY LITTLE BIT OF SENSATION MATTERS!!!! DO A BETTER JOB.

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Dec 16, 2008 06:06PM lisahugs1 wrote:

Me too, mine was Oct.23rd. I have numbness and actually pain all down  my arm into my hand until I started working out again. I do light hand weights right now and the eliptical for 45-50 minutes 5 days a week.  My arm is doing great now,,,but yes numbness under, and in my armpit.  I had a double, with 20 lymphnodes from the right side.

I know it sucks, but I want to stay positive and encourage you all to exercise. Not just the 3 or 4 they give you when  you leave the hospital, but a little more.  I am going thru rads and even they said they notice a difference in the ones that exercise and don't.  I could barely put my arm over my head, it pulled so badly like a tight rubber band., Now I can swing my arm all around. :)

Its going to be ok. I agree that surgeons should take their time, mine is a close friend of the family and right on top of things when needed. He really is a good guy,so I know I have to take a little bit of a loss with it.   I am alive and can finally call myself a survivor.   There is a reason for everything. And God won't give us what we can't handle. 

I suggest praying over his hands,,,maybe a little bold, but can't help. And he'll get the extent of your worry :) 

Ps 46:10 Be still and know that I am God

Dx 7/30/2008, 5cm, Stage IIIa, ER-/PR-, HER2-
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Dec 17, 2008 09:10PM paras wrote:

dear EHALLA, this is not typical for SNB biopsy, but it is typical of axillary node biopsy. i see you have had 6 nodes removed that is not typical of SNB biopsey. but rather of axillary node biopsey, why you have this problem . sentinel node biopsy is usually 1 or three nodes removed if not cancer. thats why i am so against any surgeon who will still do the axillary node dissection before he is sure cancer has invaded the lymph system. i learned the hard way, i now have lymphedema in my right upper arm, and i have no feeling the back of the arm. this is in fact nerve damage. and it does not get better. it is permanent.sometimes my arm gets so heavy i have to sit down and put a pillow under it and relax. i had the right breast removed with the axillary node biopsy 7 nodes all negative removed for nothing. and now i suffer terribly. the Left breast i went to moffet and had a surgical cancer specialist do the SNB mapping and dissection no pain no lymphedema no problem and he took 3 nodes. please choose a surgeon who specializes in breast cancer other surgeons are not experienced in this kind of surgery and are more apt to sever nerves that cause this pain in the upper back of the arm its framiliar with bad surgery. do i sound like i am angry. yes  i am and i want to warn everyone i hope the best for all of you girls. But i have learned to be more pro active in my care and to try to do my homework alittle bit. all doctors are not the same. i bet christina applegate does not have this under arm nerve damage or lymphedema hmmmm

paras

Dx 8/4/2008, IDC, 1cm, Stage I, Grade 2, 0/7 nodes, ER+/PR-, HER2-
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Dec 17, 2008 09:41PM snapple7 wrote:

I expeienced the cording, numbness and pain with just 4 nodes removed after lumpectomy in June. It was AWFUL. So I went to a physical therapist that specializes in women and is a lymphadema specialist as well. Between the exercises and stretching she gave me to do at home and her massage,  it totally went away. She taught me alot about lymphadema. If you aren't familiar with it, please ask or find a specialist. It is rare for just sentinel node biopsy, but it can happen and once you get it, my understanding is you keep it, you just manage it. There are certain things that can trigger it. If you are having swelling in that arm, you MIGHT be experiencing that. There is self massage, a lymphadema compression sleeve that helps, etc.. It occurs because the lymphatic drainage channels are disrupted and the fluid can't drain as it once did. I have found that pt takes this more seriously than onc. Maybe because the pts get all those patients and it's a small number compared to how many the onc see.?? But something to educate yourself about for sure if you haven't been taught about it.

I had a bilat mast 10/30 and the cording didn't come back (because I stretched like CRAZY before and as soon as I could after) but the numbness did. It was on both sides. The side where the 4 nodes were taken is still numb. The other side isn't. ?? My surgeon that did my lumpectomy and mastectomies said I should NOT be numb and it's her job to figure out what she did wrong so that she does not do that in the future. I thought that was EXTREMELY big of her to say and very responsible. Doesn't help me much, but I did appreciate it. She is a very well known surgeon at a highly respectable cancer center....one of the best. So I think sometimes it just happens.

Good luck...Susan

Dx 6/15/2008, IDC, 4cm, Stage II, Grade 3, 0/4 nodes, ER+/PR+, HER2-
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Dec 17, 2008 09:42PM DebzNY wrote:

HI there:

I had bilateral mastectomy in June 2007.  I had numbness under my arms and behind my shoulders.  That has completely gone away.  I have feeling back in both areas.

I walked the walls with my hands and did over the head stretches...Every day...three times a day.

It took several months to get sensation back...but it did come back.  Strange feeling to try to scratch the back of your shoulder and not feel the scratching.

I'm sure we are each unique in terms of time but I would stay positive it will return.  Keep movement going to keep the circulation of the arm.

I did not use any free weights during this time as I was a little afraid of posssible issues with lymphodema.  I know the more lympnodes removed the statistics got higher...however...I wasn't willing to add the risk.  My arms were tight but I kept working them daily and time improved my range of motion.

I feel I had excellent care from my breast and plastic surgeon.  I was told what to expect post operatively and a basic timeline of healing.  In my case...they were pretty accurate.

I have finished the reconstruction with the tatoos looking great.  The entire process for me was about a year.  If having to chose again....I would do the same treatment.

Good luck

Time to Live!

Dx 2/28/2007, DCIS, Stage 0, 0/4 nodes
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Dec 18, 2008 03:20PM missrwe wrote:

Snapple7

It's great that your surgeon apologized to you. By acknowledging the mistake (even if unavoidable) she acknowledged your individual experience. Usually that's all we need to move on.

All I got was "yeah, that happens sometimes. you'll get used to it." And that was from a Hopkins surgeon. I will always wonder if the surgeon's need for speed (he really bragged about it and openly disparages slower surgeons) contributed to the outcome. If he had taken just another minute or two to really visualize the field before making his incision would it have been a better outcome? I will never know.

I encourage any woman going in for this surgery to insist her surgeon provide personal statistics (his/her own outcomes - NOT THE OVERALL STATS FOR THE PROCEDURE) regarding nerve damage in the arm/armpit. If he/she won't, then find one who will. Until women vote with their feet, the arrogant SOB's will continue to operate as they do now.

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Dec 18, 2008 03:36PM snapple7 wrote:

missrwe:

I am so sorry that you have had longterm effects PLUS the indignity of a surgeon that did not take you seriously with your concern. I have also had experience from another type of surgery with a surgeon that truly could have cared less and let me suffer unnecessarily in the hospital for 5 days with only 2 personal visits and each of those lasted about 2 seconds. I totally understand the frustration of feeling their ego and their reputation is more important than your health. But I do think that is the exception, not the norm. I hope anyway. I have 2 surgeons with bc (one to take off, one to put on!) and an oncologist and I have their emails, their cell numbers, and have been treated as if I were a family member by all 3. I truly could not ask for more and it made me realize that that one person for the other surgery (a GI surgeon) had his own issues and that he is not the norm. I hope in the future you can find someone to put your trust in and redeem the surgeon speciality in general. Because there are some amazingly smart, gifted, and deeply kind surgeons out there. 

Susan

Dx 6/15/2008, IDC, 4cm, Stage II, Grade 3, 0/4 nodes, ER+/PR+, HER2-
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Dec 18, 2008 06:59PM rubytuesday wrote:

Lumpectomy 10 years ago with 6 nodes removed.  I had numbness down the back of my arm and in my armpit. My surgeon told me that there is a nerve that he thought he could preserve (back when he was a young 'hot-shot' surgeon...his words) but found that in every woman where he did that, they had chronic pain.  So that was the reason for my numbness.  I did get used to it (the armpit being the hardest to get used to).  Then when I had my mast with SNB 2 years ago, I really felt pretty good and didn't feel that I had anymore damage than I had from my previous surgery.  As luck will have it, my SN had micromets and I ended up having AND with 10 more nodes removed (17 total) and as soon as I woke up from surgery I realized that my FOREARM was numb.  I didn't fare nearly as well that time.  I still have numbness on my side (top of ribcage) and my armpit, inside of my arm and my forearm.  All I got from my BS was "I must have cut something that I shouldn't have"........................I did do physical therapy for it without much gain.  I do think pretty much any 'gain' I got was just me getting used to it.  I can't stand to have it touched but can at least lay it on a table now where before I couldn't do that at all....it just felt like a block of wood.  The good news is that my foob has total feeling......I think that's good news???  I do hope that you gain some feeling back.  Best wishes

Proud member of the TaTa Sisterhood! :)

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Dec 18, 2008 07:12PM, edited Dec 18, 2008 07:13PM by ailenroc

Several of you mentioned massage and exercise to restore sensation. What kind of massage and exercise do you do?

Oncotype score: 1; BRCA neg; bilat bc & bilat mx w recon;

Dx 5/30/2008, IDC, <1cm, Stage Ib, Grade 1, 0/5 nodes, ER+/PR+, HER2-
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Dec 18, 2008 09:17PM snapple7 wrote:

ailenroc:

My physical therapist specializes in lymphadema and women's issues. She says it's important not to have a general massage therapist work on you (me, anyone with any nodes removed) because they could cause fluid to actually increase in areas where there is weakened ability to drain (the armpit). I can't imagine never having another REAL massage. I am sure I will!! But anyway, she does gentle massage to move fluid in the lympatic system to the core of the body to drain. It's not deep tissue as the lymph system runs 'light' under our skin, not in deep tissue. She works on my arms, sides, stomach and neck areas. 

The exercises she has given me are to 'walk the wall', hold a closed doorknob with the affected arm/hand and gently walk away from the door, letting the knob pull your arm straight behind you. I also place the forearm on the inside of a door frame bent at a 90 degree angle with the elbow parallel to the shoulder and turn my body away from that side to stretch the pecs. Basically any others are just stretching those same areas. She always says to hold a stretch for the count of 20 and stop and rest. I've become addicted to it now...the stretching makes it all feel better. If I'm hurting I usally take advil, stretch and then rest. ?? Works ok for me.  Hope this helps some! 

Susan

Dx 6/15/2008, IDC, 4cm, Stage II, Grade 3, 0/4 nodes, ER+/PR+, HER2-
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Dec 18, 2008 09:20PM snapple7 wrote:

OH...ps...for numbness the therapist recommended using 'stimulation therapy' (I think that is what she called it). To take several objects with very different textures and gently rub the affected area to try to stimulate the nerves. I have to be honest, I haven't followed through with that one so I can't say if it works or not.

Susan

Dx 6/15/2008, IDC, 4cm, Stage II, Grade 3, 0/4 nodes, ER+/PR+, HER2-
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Dec 19, 2008 04:07PM rubytuesday wrote:

Susan, I think the stimulation therapy is THE best thing for nerve damage.  I have used it on my forearm which I couldn't stand to have touched AT ALL or even lay it down on a table...even clothing felt creepy on it.  I also agree that the stretching is awesome. 

Another one to add to the list, my PT had me lay on the floor with my knees bent and my legs up on a chair.  I had to do snow angels in slow motion....like moving my arms and then holding the pose, then moving them a bit further and holding.  It was great.  Then she had me do 3-D angels sitting on an exercise ball where you pretty much just stretch your arms every which way and hold the pose until you feel like changing it.  Leaning into a corner with your elbows at a 90 degree angle is great too....kind of like the doorway stretch that Sue posted. 

My PT specialized in myofascial release which really did help with my ROM and sensitivity from nerve damage.  

Best wishes

Proud member of the TaTa Sisterhood! :)

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Dec 19, 2008 04:13PM Marple wrote:

njnative, my underarm is numb 2 plus years later.  I had rads so maybe that made the difference.  With rads no hair and no sweat........I guess that's a bonus?

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Dec 19, 2008 04:36PM ailenroc wrote:

ruby and snapple: thank you for the tips regarding exercise; I had not heard of stimulation therapy ... makes sense and I'll try it. My challenge is to find somebody specilized in LE therapy; that does seem to make a big difference.

Oncotype score: 1; BRCA neg; bilat bc & bilat mx w recon;

Dx 5/30/2008, IDC, <1cm, Stage Ib, Grade 1, 0/5 nodes, ER+/PR+, HER2-
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Dec 19, 2008 05:12PM Katalin wrote:

One mastectomy, one contralateral prophylactic mastectomy....I had terrible burning nerve-related pain which didn't respond to common analgesics. Felt like a bad sunburn, sensitive to pressure, fabrics, etc.  I finally had some relief with tryclic antidepressants which immediately resolved the pain, even if it made me feel stunned...3 months of that, my pain resolved into numbness.  I'm gradually regaining sensation, which is kind of delightful after 2 years....I'm glad to not have permanent pain, okay about the remaining numbness...and loving the delirious delicate sensations I feel across my chest area...Maybe this is just a message of hope for you...maybe time will tell.  I also did lots of stretches and everything that was recommended, lots of scar massage and massaged the tight cords.  Good luck!!

Dx 7/1/2006, IDC, 3cm, Stage IIb, Grade 2, 0/2 nodes, ER+/PR+, HER2-
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Dec 19, 2008 06:06PM paras wrote:

dear snapple7. she severed the nerves thats why you have numbness. but i do applaud your kind reaction to this ...

paras

Dx 8/4/2008, IDC, 1cm, Stage I, Grade 2, 0/7 nodes, ER+/PR-, HER2-
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Dec 19, 2008 06:30PM, edited Dec 19, 2008 06:37PM by paras

Snapple 7 is talking about a PT who specializes in lymphedema.  That is their specialty and i would also like to find one. LE is what they are trained for and they can help i have heard and are more knowledgeable that a surgeon or onco dr. in this area.

The main point i am trying to make is you should not be having the axillary node dissection anymore in the year 2008.  The gold standard is now SNB snb mapping to find out if you need the axillary node dissection which would only be done if the sentinel node has a cancer.  With a good surgeon this should help avoid any nerve damage or lymphedema. I have had it both ways i had the axillary node in the right arm numbness in the back of the arm swelling in the upper arm heaviness after walking very debilitating.On the other hand the left arm which i went to USF and had a DR. who was from Moffet cancer hospital do the Snb and snb mapping. I had no problems with numbness or any lymphedema it makes me so sad i did not go to him in the first place i hope i can help someone else who is reading this board now to be proactive in your health care not all surgeons are the same and some are reluctant to do the new procedures its worth the rest of your life not having to suffer. If we were men and had to have something done to private areas you better believe it would be perfected with no numbness or unnecessary nerve damage. my reply to missrew surgeons big mouth " sometimes that happens" "you'll get use to it." that phrase infuriates me my friend, my husband would have punched him in the nose. i love sharing this with you all it somehow makes me feel better.

paras

Dx 8/4/2008, IDC, 1cm, Stage I, Grade 2, 0/7 nodes, ER+/PR-, HER2-
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Dec 21, 2008 11:02AM missrwe wrote:

Hi, Paras,

Thanks for the words of sympathy. I agree. It does feel better to share the frustration.

My experience was with a top breast surgeon at Johns Hopkins - so it can happen anywhere to anyone.

All women must ask - and keep asking until the surgeons start listening and taking us seriously - HOW MANY OF YOUR PATIENTS EMERGE FROM THE SENTINEL NODE BIOPSY WITH PERSISTENT NUMBNESS THAT DOES NOT RESOLVE?

If the surgeons were required to maintain this data and report them, we (as patients) could research better and make informed decisions. PLUS the surgeons would be more careful - because they would want to report good outcomes.

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Dec 22, 2008 12:22PM Daudine wrote:

I had my bilateral mastectomy in May too and I'm also numb under my arm, between my 2 foobs and my back.

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Jan 12, 2009 06:07PM, edited Jan 12, 2009 06:08PM by paras

if the numbness is only under your arm thats not so bad. but mine is on the upper arm and back do  to an  axillary node biopsy and this should not have even been done in 2008 so you can imagine how i feel. i have since learned to be pro active in my health care and not trust the dr to know best. i also may be having some lymphedema issues but i am having trouble finding a pt who is helpful i have a heaviness in my upper arm that is debilitating. however my dr refered me to a ot who says he is a specialist in le but had not answers for me and did not manipulate my arm in any way only did measurements. aND GAVE ME PRINT OUT WHICH I ALREADY READ ON MY OWN.  its so hard to find good health care these daYS.

paras

Dx 8/4/2008, IDC, 1cm, Stage I, Grade 2, 0/7 nodes, ER+/PR-, HER2-
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Jan 12, 2009 06:28PM carol1949 wrote:

Paras,  Small world!  I lived in Nokomis for several years... and am moving back next week!

Incidentally regarding the LE.  There is a wonderful site http://www.nwlymphedemacenter.org/(It is Northwest Lymphedema Center).  Very worth while.  Also it features Sheri Lebed with her exercises to prevent as well as help control LE.    Blowing bubbles is an exercise that is especially helpful in controlling LE!  Causes us to breath properly!

My surgeon said it would take around 6 months for all feeling to return... and if you have any sensations it is a better indication of the results.  Also, vitamin E has been shown to reverse nerve damage and is being used in stroke patients.  All of my doctors approved for me to take it.  Women need about 400 iu's per day... best taken at night.  If you have much numbness, I would start with 800 iu's for 3 months and then down to 400 for the rest of our life, which is what I an now doing. 

Good Wishes to all!

Dx 4/4/2008, IDC, 6cm+, Stage IIIb, ER+, HER2-
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Jan 13, 2009 05:50PM Binney4 wrote:

Hi, Paras,

Just wanted to suggest this web page for help with finding a good lymphedema therapist near you, and knowing what to expect from a well-trained lymphedema therapist:

http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

Hope that helps - don't settle for lousy lymphedema care, because good care can really help you take back control of your life!

Hugs,
Binney

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Jan 13, 2009 05:56PM SpunkyGirl wrote:

Diane,

I had numbness under my arm, too, and the BS didn't seem to be too concerned about it.  Well, I guess she was right because after a few months, it went away.  My arm feels completely fine now.  I hope the same will happen for you.

Bobbie

"Gratitude is the fairest blossom which springs from the soul."

Dx 9/4/2006, IDC, <1cm, Stage IIIa, Grade 2, 8/20 nodes, ER+/PR-, HER2+
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Jan 13, 2009 11:53PM psalmist wrote:

Double prophylactic mastectomy in July '08 followed by lymph dissection due to cancer discovery.  16 nodes removed, and I still have numbness along the backside of my armpit and down my arm.  Also had cording but exercise and stretching took care of that.  I have almost all my sensation back in my breasts - never really lost it except along the incision lines. 

 My surgeon recommended LOTS of stretching and exercise beginning two to three weeks post op.  I have some sensation in my underarm except for that one section down the back of my arm.  It feels like it's not a part of my body.

Dx 7/15/2008, IDC, <1cm, Stage I, 0/16 nodes, ER+/PR+
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Jan 30, 2009 02:00AM njnative wrote:

Thanks for all your feedback. I keep asking my PS if the feeling in my arm will come back and he assures me that it will - it takes time. I hope that this is told to patients up front. I had no idea I would have no feeling under my arm and have limited reach of my arm going into the surgery. Not that it would have made a difference because of course the surgery is needed... but it's strange to be a surprise.

Diane

Dx 3/21/2008, IDC, 1cm, Stage Ia, Grade 1, 1/3 nodes, ER+/PR+, HER2-

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