Breast "Edema"

cheerful1

My radiation oncologist released me after telling me I have "edema". She was wonderful but only contracts with my insurance company. So that group is done with me. Who do I turn to now that treatment is done? I feel like I'm in limbo. There must be someone else out there experiencing this...I'm 2 1/2 months post radiation and have "edema" of the breast. My breast is swollen, itchy, painful and hot at times. I'm aware that I can take ibuprofen for the pain and put ice packs on for the heat, but what do you do about the rest? This is going on around the clock; I'm so uncomfortable. Any suggestions out there?

kira66715

Cheerful, what you're describing is breast lymphedema--very common after sentinel node biopsy and radiation. It will tend to get better over time, but should respond to lymphedema treatment--massaging the fluid out of there, and getting the correct compression garments. Here is a link to breast/trunk LE: you'll need a referral from one of your doctors to see a lymphedema therapist.

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

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

For now, avoid ice packs--but cool packs are okay, try and wear a bra or compression camisole that gives you some compression but doesn't cut off lymph flow. This is real, it's a problem and it should be treated.

Kira 

cheerful1

Thank you Kira. This site is amazing. I've been struggling with this for weeks and in a few minutes/hours I get help and the much needed support. Hugs to you all

kerrie389

Kira,

I just read these articles describing breast lymphoedema.

I have LO in my arm but now my new breast seems to be affected as well. 

I have recently had a bilateral Tram Flap reconstruction and initially my arm improved but 4 months on it is back to what it was before, maybe a little improved, and my breast is getting uncomfortable.

I have not been wearing a bra because i thought it would restrict lymphatic flow but the article suggests you should wear one.

any thoughts or suggestions would be greatly appeciated.

Kerrie 

Binney4

Kerrie, I'm so sorry about this latest development! It's discouraging to have this happen when you're finally finishing up with all the treatment and recon. 

The right kind of bra or cami is important. It should not bind in the straps or bands, and should not have underwires. If you have swelling in the axilla area you'll need something that comes up high in that area. Good coverage and support is what you're looking for, but nothing binding. I use a compression cami because it doesn't have bands so I don't have that concern. At night I use a Solaris or JoviPak night vest because I tend to swell at night. There are links to lots of options for bras, binders and camis at the bottom of the page that Kira linked to above.

Have you learned self-Manual Lymph Drainage? If not, that's an important tool for daily self-care. Also helpful for me is the Lebed exercise DVD:
https://www.gohealthysteps.com/store/

Does any of that help? Sure hope so!

Gentle hugs,
Binney

elimar86861

Areas of LE are prone to infection, and "painful and hot" can be symptoms of infection so if you have not already, make sure the docs rule out infection.

Agree about not using ice packs.  You don't want anything that will constrict circulation.

kerrie389

Thanks Binney, yes it certainly does help.

I do MLD and try and exercise as much as i can, swimming in particular i find to be very helpful.

I am wearing a firm fitting cami today and it does feel much more comfortable.

Thanks again Binney and elimar for your responses. 

j414

I also had breast edema, the affected breast was a C/D cup and the unaffected breast was an A/B cup.  The swelling began to subside around six months after radiation ended, and in about a year it was back to normal size and my breast are even.  My oncologist told me to massage my breast in circular, clockwise motions and I also cut down on salt intake - I think both helped. Hang in there, your only 2 1/2 months out, your body is still recovering. 

elimar86861

You Tube has some videos on self-massage for lymphedema too.

informated1

Dear Cheerful,

Sadly this is the normal the surgerys, radiation doctors, oncologist no one wants to take care of this side effect or admit how this came about or how to treat it. They are not unkind they are just all uneducated and need alittle help with information. Your statement they are done with you is extremely irrating to me. Here is the deal this appears right after radiation treatment so every thing you had done up to this causes this condition you need to be proactive call all your doctors and tell them you need help controling this now. 

informated1

Cheerful I don't know your history how many lymphnodes they removed but if you had surgery and lymphnodes removed and chemo or radiaton or both you are can develop lymphedma this needs to be addressed asap first for infections and for controlling it before it goes into second stage which means this chronic dibrating condition is uncurable causes much grief, pain, and getting it taking care of now is essential for your future.

informated1

cheerful one of these doctors needs to send you to occupational therpist who can help explain how your lymphedema works, what things you can do for yourself what bra is right for you, what things you should avoid doing, and teach you to do manual drainage at home. 

FireKracker

I had edema....went to PT for 6 tx.wore compression bra like forever and between binney and kira i got throu it.My PT told me the two are cousins except that LE is forever and edema is treatable.Insist that one of your drs give you a refferal for PT.good luck.huggggggggggs K

cheerful1

OK, so not so Cheerful anymore, but I'll get over it  

I first posted 11/3/2011. After reading the much appreciated responses I made an appointment with my PCP regarding the symptoms. He agreed there was a problem and requested a referral for lymphedema therapy. Someone mentioned earlier that the medical profession is not always educated to what we are going through or how to recognize symptoms. I feel if my doctors had really paid attention the following could have been avoided.

 While waiting for the referral process, my breast expanded to more than twice it's size, became even redder, thick and more painful. The Sunday following Thanksgiving, I became extremely ill; Fever 102, chills, vomiting and extreme pain in the breast. I told my husband to take me to the ER where I was admitted for Cellulitis of the breast. I remained hospitalized for days to get the infection under control and have been getting treated by IV infusion of antibiotics twice daily for the past 11 days. One more treatment to go. Whoo hoo!

 I have been to hell and back and I feel like it should never have gotten to this point. I tried to get help and saw two doctors prior to my hospitalization they couldn't recognized the problem...

What I want to say is to TRUST yourself. You know your body better than anyone. Granted most of us haven't had some of these experiences before, but you do KNOW when something is off. Something is WRONG. You have to be your own advocate and fight for yourself even when you're feeling weak. Don't let them put you off when you know something is wrong. We shouldn't have to fight so hard during such a difficult time. The options are not so great.

I certainly can't be alone in this. It angers me that the medical profession drops the ball. My symptoms aren't new. We need to fight for a system of care that follows us beyond the last "treatment". One that follows up and makes sure that we really are ok. 

 Some have wondered what my diagnosis and treatment was: Stage 1C IFDC. I had a lumpectomy with sentinal lobe biopsy (3 nodes removed) and 33 radiation treaments; including 8 boosts. So regardless of how "bad" it is, issues can and do arise.

 I didn't really understand why the term "Survivor" has been used until now, because there are times when I don't feel like I can handle one more thing, but survive we do.

Bless you all and I hope that each and everyone reading this finds tomorrow and each day after a little easier. Hugs and Happy Holidays.

FireKracker

I have learned through this BCO that most Drs. only know what their specialty is.My BS just said watch your salt.My internist said they both look the same BUT my RO saw as soon as I took my compression bra and i was already in PT that i did have slight edema.not LE.It like they have tunnel vision.Damn those white coats.

Thank God it is ALL treatable but it would have been nice if we were warned!!!!!

Thank you once again sistas.Where would we be without all of YOU.God bless.huggggs K

kira66715

Oh Cheerful, what an ordeal. And all too common.

There have been some recent threads on cellulitis, and all the women who've had it have talked about how lousy and actually irritable they've felt.

And to raise the concern, and not have it treated until you're so ill--that's infuriating.

I have a photo from New England Journal of Medicine--it's actually a free link I think that shows doctors what breast cellulitis looks like.

http://www.nejm.org/doi/full/10.1056/NEJMicm065836

Here's the text for the pictureA 54-year-old woman presented with a sudden onset of fever (temperature, 39.3°C) and erythema on the right breast and right arm (Panel A) and on the right side of the back (Panel . There was no history of trauma. Eleven months earlier, she had undergone a wide local excision with axillary lymph-node dissection for an invasive ductal carcinoma (T2N0, 2.5 cm in diameter) of the ipsilateral breast. The postoperative course was uneventful, and she did not receive perioperative antibiotics. Surgery was followed by six courses of chemotherapy and 50 Gy of radiotherapy on the right breast. Examination of the breast revealed erythema, tenderness, and warmth, none of which crossed the midline, but no masses or lymphedema was palpable. The white-cell count was 13,300 per cubic millimeter. Ultrasonography showed no evidence of a soft-tissue abscess. The diagnosis of cellulitis was made, and the patient received oral antibiotics, with complete resolution of symptoms. A follow-up mammogram 6 weeks later showed no evidence of recurrent cancer.

Gheorghe Peltecu, M.D., Ph.D.
Carol Davila University of Medicine, 010455 Bucha

rest, Romania

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