Breast lymphedema vs inflammatory breast cancer?

brittandherboobs

hey all, my oncologist thinks I may have breast lymphedema (referred me to a specialist) but I’m worried it’s something more...

Any tell tale signs that can tell breast lymphedema apart from a recurrence? My right breast has a history of stage 1 IDC, had a segmental mastectomy/lumpectomy and sentinel node removed in March 2019 finished chemo and rads 1 yr ago and now breast is swollen, red, warm to touch. Just had a clear mammogram a couple weeks ago.

Anonymous

I have been through this Britt. Awful itching and then purple red color all through my breast. PLus sweling. Left mastectomy side. No axilla nodes. Thought it was IBC for sure but no. It was breast LE

Good luck with this. Let us know how you are doing.

Astrid.🌾

Harley07

I am very interested in your experiences. I had a lumpectomy on 11/20/2020 for stage1 IDC on right breast. I had a single 3-4" incision in my armpit to remove 5mm tumor and SNB. For the past week my breast has been very red and swollen particularly just below the incision. BS put me on antibiotics, but rads oncologist told me on phone today that due to a single large incision and my large breasts (38H) that I probably have lymphedema and I should have also had a breast reduction. At this point, the radiation therapy is on hold until the redness and swelling can be resolved.

I am suppose to follow up with the BS on Monday. I'm pretty down as well as confused. Any thoughts or suggestions are welcome. Thanks

Anne

Glendacog

Hi Harley and others experiencing red breast syndrome!

I'm going through a similar thing. Had a lumpectomy on 11/3/2020 with two incisions on my left breast - both about 3-4" (one for sentinel nodes near armpit and one about two-three inches below that for the tumor ) - they are like parallel lines. Everything seemed to be healing well, but about a week ago, I noticed a pinkish hue to the bottom half of that breast - no where near the incisions. It got progressively redder and is slightly warm to the touch. After a few days, it spread to the tumor incision and surrounded it. I have not had a
fever or chills, so was not very worried about infections. It sort of
looks and feels like a sunburn. By the way, I also have large breasts- 38DD

Saw the radiologist yesterday and he diagnosed delayed breast cellulitis and prescribed antibiotics. I'm hoping this is the right diagnosis and treatment. Like you, I am confused because it does sound like it could be lymph edema. My radiation is also postponed until this clears up.

I'll follow your progression and keep you updated on my situation. Wishing you the best of luck.

Glenda

Harley07

Hi Glenda. Thanks so much for sharing your info. MyBS prescribed the antibiotics over the phone so I'm thinking I need to see her to figure out what is going on.

I'll keep you updated. Good luck.

Anne

MinusTwo

Hoping the antibiotics work for both of you. Cellulitis sounds likely. Below is a link about lymphadema. LOTS of good information,

https://www.stepup-speakout.org/

Glendacog

MinusTwo - thank you so much for posting the link about lymphadema! That is a great site with tons of helpful advice and resources. That may not be what I'm dealing with now, but I was very ignorant on the subject and the ways to prevent or mange LE.

brittandherboobs

Thank you ladies for responding and sharing your experiences... and that link does have tonnes of great info, thanks for sharing.

An update from me... I have, since posting, had an ultrasound which came back clear... yay! But now I'm very confused about what's going on. I saw another doctor yesterday who prescribed antibiotics because they said it may be infected. So I start those today. Hopefully that will help. My breast is sore and so uncomfortable. So with a clear mammogram and ultrasound is there anything else I should do to rule out a recurrence

MinusTwo

Britt - GIve the antibiotics time. And you may even have to try a 2nd variety. Another option down the road might be to see your dermatologist for a skin biopsy.

Harley07

Just an update from my side. I finished the antibiotics and the redness has decreased but is not entirely gone. Still swollen around the incision and uncomfortable. Got an appointment at the surgeons today on my lunch hour. However the nurse neglected to tell me they were in a different office today (I wasn’t aware there were 2 different offices). Since I was on lunch hour and I had already driven 30 minutes to her office, driving another 30 minutes further wasn’t in the cards today.

I’ve been generally unhappy with this hospital system. It’s a long story but they have dropped the ball on a couple of occasions from imaging to follow up. Has anyone decided to change your entire care team between surgery and radiation ?

At this point I can’t start radiation until the swelling is resolved and I haven’t made another appointment with the surgeon. I guess I’ll take a deep breath and try to figure out what to do

Glendacog

Hi Harley07 (and others dealing with this issue)

Our cases continue to mirror one another to a degree. I've been on antibiotics for 8 days (10-day course) and while the redness and tenderness have improved, it is not gone and the radiologist postponed my treatments again. I read somewhere that the redness may linger for quite a while.

I'm sorry you've had problems with your medical team, it makes it really hard to trust them when they drop the ball. My humble opinion is that you should change doctors if that is going to make you feel more comfortable - you totally have my support in that regard.

MBEandQ

This is happening to me too!

Lumpectomy, then weeks later a SLNB, and was totally fine. I had a leaky seroma for a bit but that resolved weeks ago.

6 hours after 1st rad treatment, breast got pink, warm, swollen. RO sent me to surgeon who said looks like cellulitis, do 10 days of abx. She said it was caught early, and to continue rads so I only skipped one day of rad, then did days 2 and 3. I’m still swollen, tho less pink and still a bit warm. I also have large breast and am doing prone radiation.

I see RO on Monday, will be curious if he sends me back to surgeon. I have not had a fever but I do feel really wiped out like when I had mastitis while nursing.

I hate that there’s no quick or clear answer

Harley07

MBEandQ - sorry to hear you are also dealing with this.

Glendacog - thanks so much for your support. I hope your redness and swelling continue to improve.

I’mallergic to sulfa drugs, so the BS is limited in what she can prescribe. I'm on a 2nd round of antibiotics for 5 days and it seems to be doing the job (fingers crossed). The surgeon says it's is not lymphedema.

As for my care team, I've taken a deep breath. I like and am comfortable with the BS and MO. The nurses are wonderful. While I've been told the RO is highly regarded, I was very upset after the tele-health visit last week where she told me I needed a breast reduction, I must go on endocrine therapy (I don't plan to), my ovaries need to be removed due to a RAD51D mutation and I likely have lymphedema due to my large breasts and where the lumpectomy incision is placed. She finally got around to telling me I would have 5 radiation treatments scheduled every other day and to call her when the BS cleared me for radiation. I was stunned and humiliated. At a time when I already don't feel good about my body, I didn't need the RO to add to it. I had discussed the RAD51D mutation with the genetic counselor and the endocrine therapy with the MO and want to focus on only radiation with the RO.

Since I only need 5 rads treatments, I plan to suck it up and stay with this RO so as not to further delay treatment. I'm not so worried about the actual radiation as I am about having to interact with the RO.

Good luck to each of you.

brittandherboobs

Well, brief update. Today is the last day in my course of antibiotics and I’ve seen no improvement... feeling extremely anxious and confused. Clear mammogram, clear ultrasound... what the heck is going on? My onc didn’t seem concerned at all about IBC, he said that if it was IBC, it would have initially presented as IBC, but it didn’t. I had IDC... I’m confused and seriously starting to lose my mind about thi

MinusTwo

Britt - did you make an appointment with your dermatologist yet? That would be my next step.

brittandherboobs

I don’t have a derm so I’ll have to call my MO (the only doc I’m followed by) to ask for a referral... I guess skin biopsy here I come :

Harley07

Thanks for providing an update Britt. Good luck with the derm visit. I hope it clears up soon.

amanda6

i had breast redness & swelling after a lumpectomy 10 years ago. After lots of dancing around by the docs & panic on my part, it turned out to be " fat necrosis." Sounds terrible, but it's a harmless thing - I have redness on my breast still, but no longer any swelling. Wishing you all well!

Veronika2021

How long did the swelling take to go down? I had a left mastectomy almost 3 weeks ago and my chest it’s so swollen it hurts

Glendacog

It took over 2 months for my swelling to go down and I only had a lympectomy.

MinusTwo

I'd say a minimum of 6-8 weeks. Could be 3-4 months. The 2 months posted for a lumpectomy is not at all surprising.

doxie

I had what turned out to be bug or spider bites on my previously radiated breast (2012) and for the first week freaked out about IBC because I couldn't see the bites. Previously after a nipple tattoo, I had a really bad infection and breast LE. That took about 8 weeks to clear. This silly bug bite took about 6 weeks for the redness and LE to mostly clear out of my breast. Now dealing with LE in the arm and trunk. Returned to my breast surgeon and had a mammogram, so am fairly comfortable that was all it was. Just really sad I'm dealing with LE again after so many years w/o it.

Lainey64

Hi everyone, I went through something very similar recently and wanted to share. I had a lumpectomy in 2008. Over the course of 12 years I have developed some significant scar tissue in that breast and lymphedema in my left arm. This past December I noticed that my lumpectomy breast was very tight and swollen. There was no redness but the skin was taking on the orange peel look and I started to panic. I made an appt with my BS. I had a mammogram, ultrasound and venous doppler ultrasound. The ultrasound showed a lot fluid in my breast. My BS did a skin punch biopsy to rule out IBS. Came back negative. They determined that the LE moved into my breast. I've been seeing a LE therapist for a few weeks and it's helped a lot but it's a work in progress.

MinusTwo

Thanks Lainey. I started out with breast & truncal LE so I didn't have to wonder. But a great post.

Anonymous

Hi Britt

Not responding to anti biotics might mean you do have LE in the breast.

I went through this too although many years out from tx.

I was so scared I might have IBC. They rulwd it out methodically. Checked with u/sound to see if burst implant there...no.

So itchy and purply red for weeks then started to hurt. Breast was swollen. No impact after 2 weeks with antibiotics. That's when they confirmed LE. I got some new exercises and a special bra. Seems my left arm which has no, or few nodes now, plus LE... hadn't coped and it tipped into the breast.

It is still there mildy and gets full and itchy sometimes. Not too bad for long term management.

Try not to freak out. It might still be just your body reacting to surgery.

Lainey64

Astrid, I just read your post and you mentioned that your breast was red and purply. My breast itself is not red or purple, but the skin beneath my breast is light purple, almost looks bruised. It's very weird. Did you get any redness or purply coloring outside of the breast itself?