How does your healing go?

Hi MellyT,

I had  my BMX with node dissection 1/11/11. I had severe post mastectomy pain syndrome from the moment I woke up. I won't go intot those details here.

I was put into occupational therapy in June 2011 to help with the pain. What was discovered, was that in addtion to the severe PMPS, I also had severe scar tissue adhesions across the chest and into the armpit (which I suspect I had some cording but they didn't use that terminology with me). I was/am on the fence of lymphedema on the right side, which is irritating.

Anyway,  I had two therapists that did myofascial release on me from June through October, twice a week for one hour. I had no idea how bad it was. I had done the exercises and stretches like I'd been told to and did massage on my chest when I applied the Vitamin E creme to the chest.

My scar tissue was pulling my  shoulders and head foward and down. After it started to release, I could tell when it would tighten again between longer days between appts. I would also get skin blushing, where the tissues would turn red where scar tissue was tight when worked on. 

Make sure you see someone who knows what they are doing. I had gone to an OT earlier like in April, but she only saw patients like me  about four times a year. So it was really useless, she didn't know squat compared to the other two I had during the summer.

They should also give you things to do at home. Mine even prepared me for things to do with sketches, bands, a styrofoam thing to lay and stretch on for when I was discharged.

Good Luck to you.

I too am glad to see this topic. I am 6 weeks after a Right mastectomy, and I really feel it is healing well, scar still red, but good range of motion. Tiredness when I over use it, like in stirring Rice Krispie treats did me in today.

I am 20 months out of a Left mastectomy, 6 lymph nodes removed, and this side continues to give me trouble. I have done exercises with a physical therapist to halt a frozen shoulder, very successful but I have to continue the exercises a few times a week to stay pain free. I also just learned the myofascial scar release and I feel I am making great strides with doing this daily on this older scar.

Oh, for those of you wondering if I had a return of cancer, no. But I did have 3 places show up on a MRI that needed biopsies, the biopsy was very hard on me, and inconclusive!!! So I opted for the mastectomy, and no cancer.

Right now another thing that has helped my 20 month scar is not wearing a prosthesis on that side, my doctor felt Iwas just too sensitive and a break from irritation would be good. When I wore the one prosthesis, it was large, 7, and I could only wear it without pain for about 6 hours every day (the silicon one) I could wear the mircobeads from TLC for longer.

But I am surprised how different my 2 recoveries are!!! The lymph node involvment really makes it all the more intense.

Timbuktu  I am so happy for you, that had to be very scary waiting for that appointment.

I had my BMX on Nov 4^th  8 weeks ago and I had 0/2 nodes in the Left Arm removed.  I started Physical Therapy 2 weeks after Surg. And 5 days after drains removed, 2x's a week.  I almost have full range of motion back now, but I have tightening of the scars and swelling of the surrounding tissue.  If I slouch or lean forward I feel like the area shrinks and it takes forever to stretch that out, I feel it starting now as I type.  I have not had any Lypho problems yet and have been very active all through the recovery. I had to stop a lot of my activity as the tissue would swell around the scars and I felt like I was going to explode!  This still happens today but it is much better since I started wearing a compression shirt I found at Kohl's. I was unable to fully stretch when I was swollen and I was terrified I would be unable to get full motion back...My Surgeon wants me to call her in 2 weeks after additional soft tissue management by my PT and maybe see a Dr.of Physical Therapy?...They said my muscles have memory and that I am doing too much...that the swelling and bulges above the scar lines are the muscles and swollen tissue from activity not fluid like you all have been mentioning.  They keep saying I look great, great compared to what??  My no reconstructing was my choice as I am to thin (5'7" 123lbs) so I could to heal as fast as possible, and go back to my job (Autobody Mechanic/Painter) I know this is an usual job, but it is what I love to do and have for 23 years and I'm only 45 now...gotta work a lot longer yet.  Chemo (ACT) is coming next Thurs Jan 5^th and I am worried that my healing will stop...

I also have pain above the scars, like someone punched me in the chest, it hurts and aches when I start to shrink... my JP Drains were long and the left one went up over the scar, running parallel to the scar and about 4" in toward the center of my chest.  It was an 8 on the scale when they pulled them out!! How long were your drains??? I wish they had a handbook for this kinda thing...I'm concerned waiting another two weeks is a mistake...do you guys think I am crazy??

Barbie, I had my surgery a day after you and everything you describe is what I feel too, with the added "electric shock" zaps that still get me along the incision. I am having significant problems when I side sleep...I wake up and it is brutal to get my shoulders back again.

You are getting soft tissue management, and hopefully myofascial release along the scar line, so this will start to help.

Yes, the drains were about 8 inches under my skin, and that place where the drains were still hurts.

I do think you should ask about wearing a compression sleeve and gauntlet when you begin your job, and it sounds like you may be just a bit too active to be having the pain and swelling you are getting. Patience is a hard thing right now, but you need to be patient and slowly add exercises according to your therapist.

Stay in touch with your surgeon and your therapist...

This is my first posting on this breast cancer site.  I'm reading and reading, and wished I'd have known about the site before going through my recent surgery.  There are wonderful people on this site, and uplifting responses to many of the questions.  Makes one feel like this a "family of supporters", and that's what it should be.  I'm a nurse with 40 years of experience, and understand all the emotional and physical components that go with surgery.  But, it's nothing like being on the other side. 

 I had a bilateral mastectomy 8 days ago, without plans for reconstruction.  Still very much in the healing phase, and seeing my surgeon in 3 days for my first post-op check.  I have 3 drains in, 2 on the side of the 10cm tumor, and 1 on the other side (without cancer).  Lymph nodes were removed from the affected side only. 

I've some concerns about the amount of swelling under the armpits.  Some rash from the tape, but alot of tenderness and puffiness.  Am wondering, am I sitting up too much in the daytime, am I sitting with my arms on the desk while I type and should they be kept closer to my sides? 

Any input to ease my mind?  Right now, I'm wondering if this is just the normal course.

Thank you!

Cats and Ivy--after reading your postings, I am wondering what position are we supposed to be in during recovery.  I am having a BMX next week.  Maybe I'll get some instructions.  Just wondering if it's better to not sit up too much?  If not, then should one be laying down or just reclining somewhat?

I am now 9 weeks out from a BMX no recon.  The right side is great full ROM, the left ( which seems to be the problem child with a lot of people) still has swelling and when I try to stretch it out it feels like I am ripping the skin off my ribcage! 

It amazes me that the BS all have different views on healing. My BS said no lifting, pushing or pulling or reaching or above shoulder height or driving until the drains were out, 4 of those little buggers! That was the worst part. The drains were irritating and they were in for 22 days. Then she bascially said go forth, lift no more than 20lbs and I'll see you in 6 months. I managed to get a script for PT and LE evaluate and treat...that has really made a difference.

Hello Ivy

I am 3 weeks post BMX with no reconstruction I am an OR nurse with 30 years Exp and I too have never been on this side. I. Went back to work after 2 weeks but my coworkers are like family. And they keep a close eye on me. I hav efound that vitamin e oil is very soothing and that massaging my arms is comforting .Walking the walls with your arms is very important. The numbness concerns me above my scars and under my arms. Driving is very uncomfortable and forget the seatbelt for a while. I do think there should be a website here with exercise hints or suggestions..i find the discomfort gets worse at nite but that sleeping gets comfortable quickly even as a side sleeper wishing you well

I rarely shave my armpits. Sometimes I get the grossest feeling when I do it, sometimes its painful to shave, sometimes when the hair grows back it feels like a cactus under my arm.

I have severe post mastectomy pain syndrome, so I have pain all the time and see a pain clinic who helps with me meds.So I understand all the nerve damage symptoms.

I can only use a roll on deordorant with a wide head. Sometimes when my armpit skin sticks together, it hurts, so I add some baby powder.

I am almost 13 months post mastectomy and I still get that feeling. Most of the time I don't shave my underarms any more. I only do it when the hair gets really long. Unfortuneately that is one of the rotten side effects of nerve damage, as well as the back of the arms, chest, etc.

The ladies of the volunteer team gave me two small pillows in a bag that I use in front of my chest for seat belts. Sometimes when I drive, I have to have a pillow in the car for the right arm to rest on, and if I am the passenger in long trips, I have my small pillows and two bed pillows for my arms to rest on.

More than likely what you may have is post mastecomy pain syndrome. The nerve damage from the node dissection is causing it and possibly across the chest too (you could have scar tissue adhesions, I had them really bad even with doing all my exercises. And the sad thing is, they can come back and require more OT.)  I too, have the feelings of being on fire on the back of my arms. Last summer the air conditioning blowing on the back of my arms felt like a blow torch. I still can't stand materials on the back of my arms.All my tops have to be extra big so nothing is the slightest tightness on my arms.

I take Gabapentin for the nerve damage pain.It is a very popular drug, along with Lyrica for pmps/nerve damage.

You kind of sound like me, I was in so much pain at first, my OT's couldn't do what they wanted to. After I went to a pain clinic (you can look up some of my detailed treatments on this thread), I began to have less pain, so the OT's could work on my severe scar adhesion release. It was painful at first, but after awhile, I could actually feel my chest tighten back up between long days between appts. 

I would definitely ask your surgeon about nerve damage from the node dissection because you sound exactly like me. I had no idea the amount of pain I had was  NOT normal. Let your surgeon know ALL your symptoms. Hopefully you can start Gabapentin (which is generic Neurontin , not sure if I spelled it right).If you have trouble sleeping from pain, you could ask for Amitryptiline, and anti depressant that helps with pain for some. I also take Tramadol throughout the day. Tramadol was invented as a non addictive replacement for vicodin. The nurses at the pain clinic I go to say they hear lots of people with nerve damage get more relief from Tramadol than vicodin.

For awhile I was also getting nerve block shots to the neck but they started to not work as well. So the next step was iv lidocaine infusions. They worked wonderful, but this last one didn't seem to work as well. My pain clinic doctor told me that that is par for the course, my body gets used to it and they loose their effectiveness. The next step for me is a spinal stimulater.

You really need someone to take control of your pain so your occupational therapists can make some progress on you. You may even want a referral to a pain clinic. My pain clinic is wonderful at treating me.

ADDED: I also had cherry red scars. My surgeon had me put on Cimeosil strips at night, and Vitamin E creme during the day. It really worked well. You can get the gel strips from a drug store without a prescription. Check the ingredients that you aren't allergic.

Did anyone have MX without node removal? I had lumpectomy and SNB on Jan 4. Margins weren't good, so reexcision on Jan 27. Those margins were still bad and they found a second tumor with different characteristics than the first (PR+ vs PR-). So I'm scheduled for UMX on Feb 22. My lynph nodes are a little sore still, but not bad. How much will the MX affect my range of arm movement? I will have a drain this time.

I have had 2 mastectomies one with 8 lymph nodes out, the other zero lymph nodes removed. I never realized how much the lymph node side hurt compared to no- lymph- nodes removed.

My no-lymph-node side healed quickly, I can wear a prosthesis on it with *no* discomfort, basically it feels great ( 3 months ago), I never needed pain meds.

My lymph node affected side is 2 years almost, and is still miserable, I can't tolerate the memory foam prosthesis for more than a few hours, and there is always something hurting there. Sometimes the pain travels down my arm, a stinging burning feeling. So because I have had the 2 surgeries, i do know when lymph nodes are involved, it is much more difficult.

About shaving, now this sounds odd to even me, but I have way less hair than before (no chemo, no radiation). I also have less hair on my head :-( and all the doctor thinks is it is a reaction to the anesthesia....I don't know. But for shaving, I simply don't, all winter...and in the summer I use a disposable razor **once** and throw it away. I hold my breath, I scare myself to pieces....and I have no idea why I even attempt to shave because it makes me so nervous.

Another reason why I do try to shave in the summer is my node affected side has the skin pulled tight so the armpit hair sort of grows lower than it should. Oh my goodness, the things/crap we have to deal with.

I did try an electric shaver and got a red burn sort of rash from it, so never again with that.

Oh...yes on the frozen shoulder, I got that about 6 months after the first mastectomy...did PT, and it is way better than it was, but still hurts probably 3 days every week. That was *very* painful.....I think they tell us it is not related to the mastectomy, but certainly it is, because you hear of it so much on these boards.