Lumpectomy Site - Still a problem - A year later

KPolasek

Today I have been feeling sorry for myself.  My lumpectomy was 11/1/07 and I have some tremendous pain and scarring around the site.  I am so tired of this that I could scream.  I don't know what to think or believe anymore.  At times I am angry that I did not just do a mastectomy.  I am big boobed and it has been a struggle .....

I went to see a lymphedema rehab therapist recently.  She said that I have some lymphedema on the chest wall and a bit in the back of my shoulder.  I have had ultrasound, mammogram, more mammogram - but tissue to dense so I had a digital mammogram and an MRI.  The radiologist said that the breast contained some microcalcifications but these were skin necrosis.

Does anyone out there know what all this means?   Is anyone in great pain constant pain like me?  I am thinking about chopping the dang thing off.  But they lymphedema therapist says that I could still have problems.  Crap ... sorry for dumping this but I don't have anyone to talk to that understands the agony we all go through .... mental, physical ...

Thanks for listening/reading.

Kay

ananda8

 You are in constant great pain and that does not seem normal.  It might help for you to talk to your original surgeon.  The surgeon may be able to reduce the scarring and that may help with the pain. 

Best wishes. 

sushanna1

Kay, 

Try posting on the lymphedema thread.  Binney and others have good advice for dealing with truncal lymphedema.

Good luck.

Binney4

Hi, Kay,

I sure hear you on this. Breast or chest lymphedema is VERY painful - just about drove me nuts.  And no over-the-counter pain meds even touched it. And it's true that a mastectomy would be unlikely to change it because the problem comes from damaged lymph vessels and missing nodes, and no surgery will fix that. I finally found an experienced lymphedema therapist who knew how to treat breast/chest lymphedema. Once the swelling was reduced and I was able to keep it that way, the pain subsided. Now I can tell when it starts to swell because the pain returns, so I do keep it in good control.

Two things are important with lymphedema: lymphatic massage (called Manual Lymph Drainage, or MLD), and compression.

The MLD should be done by a well-trained and experienced lymphedema therapist, and she should also teach you to do it on yourself. The amount of pressure, the hand positions, and the order of the massage strokes are all important, so it's not something you can learn on your own. Once you know how to do it and the swelling is reduced, you'll want to do it daily to keep control. Good news: it's gentle, and it can give you time each day to relax and take care of yourself.

Compression doesn't come from bandages like it does with arm lymphedema, but from special bras or camis. There are lots of options, from bras specially designed for lymphedema to regular bras, sports bras, camis and body-shapers that provide the kind of compression you need in the places you need it. Another help, if there are specific areas of fibrosis or extra swelling, is a specially made pad called a "swell-spot" that adds extra compression and encourages lymph flow out of the area. They come in a variety of shapes and sizes to help with whatever odd-shaped area needs compressing, and your therapist can help you find one if you need it. There are loads of ideas for breast compression on the "Step Up-Speak Out" website here: http://www.stepup-speakout.org

From the menu on the top of the home page, click on "lymphedema garments" and scroll down to the bottom of that page for bras, camis, binders, and body-shapers. Also from the home page menu, do check out the page about finding a qualified therapist in your area, unless you're satisfied that the therapist you saw can help you get the treatment you need.

One other treatment method that some women find helpful for breast and back lymphedema is Kinesio taping, also done by a well-trained lymphedema therapist:
http://www.stepup-speakout.org/kinsiotaping_for_lymphedema.htm

In the meantime, sometimes a tight sports shirt (like BodyArmor, y'know?) or tight leotard can help contain the swelling (it won't reduce it, just keep it from getting worse - you need the MLD massage to reduce it).  Buy it in a size smaller than you'd normally wear and turn it inside out so the seams don't irritate your skin. Stay well hydrated (that will help dilute the lymph fluid) and take a few deep abdominal breaths throughout the day (that stimulates and helps "pump" the lymph throughout your body.

You need and deserve answers and solutions to the pain problem, and I just want to encourage you that there are things that will help. Unfortunately it's not at all uncommon for our doctors to fail to diagnose breast lymphedema, and way too many of them don't know what to do about it anyway. So make sure to follow up with a therapist who's experienced and knowledgeable.

Feel free to come join us "swell" gals over on the "Lymphedema After Surgery" board for information or encouragement. Prayers for real solutions and real relief,
Binney

Binney4

Hi again, Kay,

Just went back and read some of your other posts, and noticed you're wanting to do a bilateral in the near future. BEFORE you do that you really do need to get the swelling completely under control. Lymphedema is stagnant lymph fluid in the tissues, and lymph fluid is unfortunately protein rich and an excellent growing medium for bacteria, so surgery in tissue that has uncontrolled lymphedema has a greatly heightened infection risk. Reducing the swelling before surgery will lower the risk and make recovery quicker and less painful. Just a thought...
Binney

KPolasek

Binney,

FINALLY someone who hears me!!!! 

THANK YOU, THANK YOU, THANK YOU!! 

I called a psychiatrist yesterday to try to get in for counseling.  My sanity is being threatened by this pain. I will visit the sites you suggested, including the lymphdema thread.

Blessings,

Kay

Binney4

Kay, yes, it's a mind game they play with lymphedema. I went through that too -- many of us do. They act like it's nothing and you start to wonder what's the MATTER with you, why you're experiencing pain no one will acknowledge or give you a name for. One of the questions we get way too often on the lymphedema board is, "Am I crazy?!"

There are even studies that have shown that women with lymphedema feel abandoned by the medical community because the doctors and nurses dismiss us, especially our pain. We get nutty statements like, "Aren't you just so glad to be alive?" And that's apparently supposed to fix the problem!

When I finally found a well-trained and experienced therapist I still couldn't go to her for a while because she was out of network, so I had to appeal my insurance company. I went into her office once even before it was approved just to talk to her a minute between patients. I said, "I think I'm cracking up." She said, "You're not. You have lymphedema. You're in pain from it. We can help you." Just that reassurance held me together until I could get in to see her. But even on my way to my first appointment I kept thinking, "She's going to tell me there's nothing wrong with me -- she's going to laugh at me and send me home." I swear, lymphedema is "breast cancer's dirty little secret," and if you have it you begin to wonder how you can be making the whole thing up, because nobody else thinks it's a big deal. I have no idea why this is so difficult for our healthcare teams, but it is. Mine was -- and still is -- superb in every other way, but with the lymphedema they just about lost me over the edge. Once you start treatment it's SOOOO reaffirming!

Sorry to rant that way -- I usually don't! But I'm really feeling your pain and I hate that you've been hung out to dry like this. Hope the relief is swift and sure!

Prayers!
Binney

KPolasek

Binney .....

Do not appologize for ranting ..... thank you for ranting!!!  I have been looking for answers to my pain for months ... the onc says the lumpy area is scar tissue ... the pcp says same thing .... radiation onc says let's do the tests and make sure it is not a recurrence.  I finally found a female breast surgeon who seems to know her business.  She has actually prescribed Trental for me.  I see her on Monday ..... I plan to take her the information that I have received.  It actually was a "God thing" that one day it dawned upon me that maybe I have lymphedema .... but, I thought, my arm isn't swollen ..... but my boob is .... and the back of my shoulder hurts.  I FINALLY asked my onc's office to refer me to a lyphedema therapist.  I am actually SO EXCITED that I cannot wait to start treatments.  And, now, I have confirmation that I am NOT CRAZY and people do have it just in the chest area.  This therapist said that she has been to training ... something about the German method .... not sure ... but she seems to be on top of things.  However, she hasn't had a patient who has had lymphedema only in the breast/back of shoulder.  So she said that she needs to do some research about compression garments that would be suitable. 

Just knowing that someone else has been down this road is comforting .... that is kind of sick in a way .... Binney, if you were here I would HUG you!!!!!!!!  You have given me hope.  The main reason I was thinking about "chopping" both sides off was I thought that it would help with the pain (I have large boobs) and also that I would not have to "worry" about it coming back in either breasts.

Over the last year I have felt like I am a rat in a maze .... I was never sure which doctor to go to ...   no wonder cancer patients just give up the fight ..... no one should have to fight the "system" and worry about anything but getting well.  I have been doing some ranting of my own with my local healthcare provider.  I am ready to punch someone in the nose ..... and that is not like me.  I am a pastor and a Chaplain for a non-profit Hospice and when I am not working ... it is a struggle to keep myself together lately ... I live in Texas.... kind of central.  Where are you?

Thank you again .... thank you .... thank you .... thank you ...

Praise the Lord!!!!

K

FloridaLady

I have lymphedema issues in my chestwall, back and right arm. All areas of skin mets also.  I have new areas of problem with right hand and right leg. My pain has been so intense that I've had to move to a morphine based pain killer for the first.  I don't think anyone knows how painful this can be until you live with it. I have been around the block of cancer in every direction and more than once in the last three years.  Lymphedema is the worst thing I've had to deal with so far. 

Kay- I hope you find relief from you pain and learn how to better control this.

Flalady

tibet

Floridalady

my doctor told me I had no vascular invasion. Does it mean there is no bad cell in my blood stream?