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swelling

smitters1
Posts: 7
Joined: Jun 2011

I had a bilateral mastectomy on June 28th and still have a lot of swelling in my chest area. My surgeon doesn't seem to be concerned about it but it is very uncomfortable and makes my chest feel really tight. Does anyone else have this problem?

Rague
Posts: 3269
Joined: Aug 2009

Were nodes removed? Could be lymphedema. Not all LE is in hands/arms - it can be anywhere that the nodes are removed or effected by the removal. Talk to your Primary Care Dr.

Megan M's picture
Megan M
Posts: 3001
Joined: Dec 2009

I was thinking the same as Rague, that it could be lymphedema.

smitters1
Posts: 7
Joined: Jun 2011

I did see a lymphedema specialist and don't have that. I did have nodes removed because they were attached to the breast tissue but not malignant. It does help to know that I am not alone and others are experiencing the same problem. I guess we just have to keep nagging the doctors. Thanks for your input.

Rague
Posts: 3269
Joined: Aug 2009

It doesn't matter rather the lymph nodes that were removed were malignant or not when it comes to LE. They were removed - that's what matter with LE. LE is not limited to BC either. Any surgery than involves lypmh nodes potentially has LE issues. It is not unusual in lgs after prostrate surgery. It can be an issue after surgery anywhere - I know a young man who has significant issues with it after having to have cadaver 'parts' put in his knee after 'blowing it out' Bull Riding.

Susan

littlebe
Posts: 18
Joined: Dec 2011

I had bilateral surgery Oct.21,2011. I have some swelling under my right arm and some under the left arm. I use ice packs in the evening when it bothers the most.My chest area is still sore but not constantly. Talked to my onco doc today and he said that's very normal for the chest area to be sore.Hoping you can get an answer about the swelling, makes things a little easier if we know what is happening

love and prayers

tharon

missrenee's picture
missrenee
Posts: 2137
Joined: Apr 2010

I had a lumpectomy in Dec. 2009 with 23 lymph nodes removed. I have never NOT had swelling in that breast--sometimes minimal, sometimes more. Mine is considered lymphedema and I have a Flexi-touch machine that I use when it gets bad. My surgeon did not know much about lymphedema(!) so I did my research, went to a PT trained specifically in lymphedema, got massage and exercises and had the machine prescribed (which my insurance paid for). Amazing to me how little the docs seem to know about it--and my surgeon is a "Top Doc" in my area. This needs to be changed in the medical school teachings. With so many women getting breast cancer, I can't believe so many docs are still in the dark about lymphedema and what to do about it. Ridiculous!

Good luck to you with this problem.

Hugs, Renee

Margeaux
Posts: 75
Joined: Dec 2011

Renee:
Couldn't agree with you more that it's about time for the medical profession to wake up to side effects. We are surviving in ever increasing numbers - yeah!!!! Thanks to all out there who make this possible, but now, please, get off your self-satisfied duffs and start working on side effects we experience. I, too, had the surgeon brush off questions about chronic pain from lymph node removal. All my docs - internist, oncologist, listen but offer no help except Gabapentin and/or Lyrica. A large Finnish study showed that only 25% of women complain to their doctors - we all need to shout loud and clear and keep nagging until we have answers.
Margeaux

jnl's picture
jnl
Posts: 3873
Joined: May 2009

It does sound like lymphedema. Wishing you good luck!

Lynne Logan's picture
Lynne Logan
Posts: 105
Joined: Jul 2011

I had assumed that my mastectomy scar would be tight and tidy. My surgeon has an excellent reputation and I love him. However.....I look like a dried up apple 6 months after surgery. Puckered and terribly ugly. Also I have a lot of swelling under my arm although I only had 2 sentinel nodes removed was wondering if it's lymph draining.
Both my surgeon and oncologist seem to think nothing of the ugliness and swelling. I'm thinking I don't want to have a "small breast" under my arm.

natly15's picture
natly15
Posts: 1930
Joined: Sep 2009

I HAD a lumpectomy and developed lymphedema in the breast. Iam currently seeing a lymphedema therapist and massage really helps it.

Kristin N's picture
Kristin N
Posts: 1969
Joined: Mar 2009

Lymphedema can cause swelling almost anywhere. Let your onco know and perhaps he can recommend a lymphedema specialtist to help.

Frankie Shannon
Posts: 457
Joined: Oct 2011

I also had 2 lymph nodes removed from each side no swelling on the left but have nerve damage and swelling under where the nodes where removed, but the onc. said it's scare tissue as the surgeon had a hard time removing the ones on the right because they where so large.Also a frozen shoulder which i'm still dealing with.I agree with you on the part where Dr. and surgeons don't seem to care what the outcome looks like i thought like you because i was so small anyway that it would look okay but i also have puckering and the swelling from scare tissue.Frankie

Lynne Logan's picture
Lynne Logan
Posts: 105
Joined: Jul 2011

Hi Frankie,
How long ago was your surgery? I also have a tiny "boob" at the inside end of my scar. My surgeon assured me this would go away but so far it's still there. The swelling under my arm feels so weird that's why I got to thinking perhaps it's not post surgical swelling but lymphodema. It seems like it jiggles like a bowlful of jelly.
To have a perfectly good prosthesis and 4 new bras is a major waste since they were fitted with the idea that I'd have no swelling.
I start rads after the first of the year and hope the swelling doesn't get worse.
HAPPY NEW YEAR EVERYONE!
Lynne

SIROD's picture
SIROD
Posts: 2117
Joined: Jun 2010

Dear Lynne Logan,

The "small breast" under your arm is called "dog's ear". On this site, I believe someone called it "angel wings".

It is extra skin left from a mastectomy. My surgeon who removed my "dog's ear" told me that often they have to close quickly and leave an extra flap of skin. The other possibility is that they are leaving some skin for reconstruction.

You should not have to live with this flap. I agree it is ugly and doesn't fit well with clothing. My surgeon had planned to remove it in his office. I had a recurrence in the axilla and since I insisted that the tumor be removed, I ask that the "dog's ear" go too. It was done.

I would never suggest that someone have a second lymph node dissection even to remove a tumor. I have had ongoing pain in that area since. My first lymph node dissection was with my mastectomy and the second was 4+ years later.

A lot of women have this problem and it is an easy fix.

Best wishes,

Doris

Indymeme45
Posts: 1
Joined: Jan 2013

To: Lynn Logan

Have you since had this extra tissue removed?  I also was left with this problem after my mastectomy last February.  My doctor said it isn't breast tissue, but rather back fat that no longer has the breast to but up against.  Doctors seem rather unconcerned with how we are left looking, but mine says he will fix it it if I want it done.  I do, as I did not want reconstruction, but just couldn't face any more surgery just yet.  I'm considering it soon as the oncologist thinks I should have my port removed in the near future, and I would like both done at the same time so as to get just one time of anesthesia and one week off my Coumadin (blood thinner) before surgery.  I also had only 2 nodes removed, the sentinel and one more.  I had chemo before my surgery, but no more after, nor any radiation.  I would love to hear from anyone who has successfully had this baby faux breast (dog ear/angel wing) whatever it's called removed with good results.  It is such a problem in certain bras and clothes.  Also, I wish I had been warned of the possibility.  I think the doctors always think we will change our minds and want a new breast built and then be grateful for the extra skin.  But, I meant what I said that at 67, I would not want any reconstruction. 

Frankie Shannon
Posts: 457
Joined: Oct 2011

I had a bilateral mastectomy in July 2010 my onc. had me see the massage therapist after 4 weeks to loosen up the skin around my scares which really helped and keep lotion on them which also helps.

Melaniedoingwell
Posts: 80
Joined: Nov 2011

I had a bi-lateral Feb 16, 2010.

One side has some "sunken"area, the other side has only "swelling" below the incision line. They do leave extra skin for reconstruction and they leave tissue that is NOT actual breast tissue. (Yeah, how is it NOT "breast tissue" if it is where my breast used to be???)
I plan on having surgery in October (1 year after radiation) but not to re-build "the girls". I can deal with having what I call my boobies in a box. I just want to be smoothed out and even. No "spare parts" hanging around uselessly!!

The tightness that I have is mostly an intermittent feeling. The hyper sensitivity CAN be treated - at home, by you. I saw a lymphedema specialist. The swelling is NOT lymph edema in my case. She asked me what goal I had in seeing her. I told her I would like to regain feeling in my arm on the side where they had removed lymph nodes. Good news!! She told me that is highly do-able. She remarked on the hyper-sensitivity I had on my chest wall and the exercise to regain feeling (hypo-sensitivity) is the same thing you need to do to reduce hypersensitivity!

You will need 4 different textures; ie feather, washcloth (dry), fingertips, wet washcloth. Whatever. Gently stoke the area for 30 seconds with each of the different textures. You need to stroke up the arm from elbow towards your shoulder (towards your heart)gently, gently, gently. Across your chest you need to go (again gently, gently) from right to left towards your heart. Multiple times a day is good.

Someone else had mentioned massage and also ice packs. My lymph edema specialist advised me only VERY Light massage on arm where I had nodes removed and that I was to avoid extremes of temperature (cold OR hot) on that side for the rest of my life. Too heavy massage, heat packs or ice packs can provoke or out right cause lymph edema. You do NOT want that to happen!! It is painful and once an area is congested it takes a very long time to decongest it and it will never really be back to what it was before!

Melaniedoingwell
Posts: 80
Joined: Nov 2011

Seek out a lymph edema specialist in your area!!!

Lynne Logan's picture
Lynne Logan
Posts: 105
Joined: Jul 2011

It's been a long journey and since I was released from my 33rd rad due to burns (only received 32!) I should be pleased. My family is so happy i'm all better now. However....here I sit with my weeping, bloody burned chest and armpit, a scar that makes me sick to my stomach even after 9 months, a mass of skin under my arm, sick to my stomach, so exhausted I can barely function and I finally developed the dreaded lymphedema from rads. I don't feel all better.
I'm seeing a lymphedema therapist but she can't do much until my burns heal, just some work on my arm. I wonder since I'm on Medicare/Medicaid if any surgeon would redo the area just to make me more comfortable and less depressed. I rather doubt it.
Anyone have any good advice for treating bad rads burns? I'm using the Silvadene twice a day to prevent infection but I want healing!
I'm on such a downer right now. I didn't anticipate neuopathy, lymphedema and life changing after effects. I feel about 90 years old. A sickly 90.
Hope this year is being good to all of you. I imagine in time I'll adjust to all my residual problems. But it all seems so much since slightly over a year ago I was a normal healthy individual.
Lynne

punkinpie's picture
punkinpie
Posts: 16
Joined: Jul 2012

I burned badly during radiation. I had to delay my last 6 treatments for a month, My radiation oncologist had me pat my burned area with a 1% hydrogen peroxide solution on a cotton ball twice a day and then apply the silverdine cream. The peroxide removed the sloughing skin helping the healing process, The skin under my arm just fell off leaving a raw raw area. I was certainly glad that the area was numb so that I couldn't feel that. My body, however, knew it was injured..The skin does heal, but it took about 3 months for all of mine to heal..It is hard to be patient about that...

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