Swelling in breast comes and goes - Doc says don't worry

TwoForOneSpecial

Hi Everyone,

I had a lumpectomy last October and had only one lymph node removed, followed by radiation. My oncologist told me that I just didn't have to worry about lymphedema, so I didn't.

A few months ago I noticed that by bedtime each night my breast was quite swollen and hard right along the incision line (outside edge close to my armpit), but in the morning it was back to normal. I mentioned this to the oncologist at my last appointment, and he said it's probably lymphedema, but since it goes down every night I shouldn't worry.

I feel like he just keeps telling me not to worry, but I'm starting to anyhow.

Last night I noticed that I have real stretch marks right where I see the swelling each night. To me this indicates that it's some serious swelling and perhaps I should pay attention to it...

So, what do all of you experts think? I don't want to make a big deal about it - if for the rest of my life one breast swells up gradually over the course of the day and then deflates at night I don't care that much... But if this might be the start of something more serious that I should deal with now, then I would like to seek out some treatment.

Thanks for any suggestions,

Rachel

NorCalS

Hi. I had sentinel nodes and axillary nodes removed and about 6 months after radiation, I noticed numbness and swelling in underarm and breast on the surgery side. I was referred to a physical therapist that specializes in lymphedema and she showed me how to do deep massage in the area along with exercises. I had three sessions with her and there was a noticeable difference after. I have not noticed any swelling, so I think the massaging and exercises helped. Do you think your doctor would refer you to a lymphedema specialist

Trishyla

I have moderate truncal lymphedema. I was concerned, so I consulted with one of the top experts in lymphedema bypass surgery. He told me that truncal lymphedema is nothing to worry about since there are so many pathways for the lymph to drain. It's at most an annoyance.

What they do worry about is lymphedema in a limb, because there are limited ways for the lymph to escape the limb. That's what causes the uncontrolled swelling.

I get lymphedema massage whenever it flares up and I have learned to use dry brushing to help with minor swelling.

Good luck.

Trish

Binney4

TwoForOne, breast lymphedema can be a big deal, for sure, and I'm sorry you're dealing with it. For one thing, lymphedema is an inflammatory condition, and over time if it's not treated the affected tissue will respond by becoming fibrotic. In other words, hardening and further blocking lymph flow, as well as then being impossible to reduce. Also, any time there is lymph fluid stagnating in tissue, there's a high risk of cellulitis, because bacteria love the warm, protein-rich conditions there; and that is something you do NOT want to deal with! Also, unlike most arm lymphedema, untreated breast lymphedema can become quite painful, and the inflammatory condition there can result in reddening of the skin, which will first be treated with unnecessary and ineffective antibiotics (ineffective because it's not an infection at that point). Progressing breast lymphedema can also result in changes in the texture of the skin over the affected area, an "orange-peel" effect that mimics inflammatory breast cancer so will result in diagnosis confusion and unnecessary testing and fear. And finally, progression to the arm is certainly possible if the area is left untreated.

It's easiest to reduce lymphedema swelling and keep it that way if you act promptly to get treatment from a well-qualified lymphedema therapist. There's more information here about breast lymphedema and how to get it under control:

http://www.stepup-speakout.org/breast_chest_trunck...

Do get a referral from any doctor on your team for lymphedema evaluation and treatment and get on top of this now. There are many of us here with breast/truncal lymphedema, and I for one can assure you this can be managed with grace and relief, but you do need to take action on it.

Please let us know what you discover! Gentle hugs,
Binney

johnsmom68

Hi two for one,

I am sorry you are dealing with this. When I still had my left breast I developed cellulitis in it from my lymphadema. It can be very serious and hard to get rid of. It took me several months.

It can't hurt to be evaluated by a lymphadema specialist. I learned to do lymphatic drainage on myself. It is relaxing and not hard to learn. It really works.

Wishing the best for you!

TwoForOneSpecial

Thanks everyone for your responses. Based on advice I will call my MO and try to get a referral to a Lymphedema specialist. Seems like there's no reason not to get it evaluated. If it's nothing then good. If it's something, better to deal with it.

Today is my one-year anniversary of Dx... Things have gone so much more smoothly than I imagined possible a year ago. Hopefully this lymphedema thing will be no biggie.

-Rachel

Trishyla

I stand completely corrected, Binney. I'm really angry that I got such wrong information from Dr. Patel at USC. He's one of the leading surgeons for lymphedema related issues. He basically laughed at my concerns about my truncal and breast lymphedema. That really ticks me off.

Fortunately, my case is relatively mild, and is helped by massage and dry brushing. I'll continue to monitor it, and if it worsens, I'll see someone, just not Dr. Patel.

Trish

MinusTwo

Trish - It's not just you. I had to find my own way. Many docs - including my surgeon & plastic surgeon - say pooh pooh - no big deal.

TwoForOne - I also have mild/moderate breast & truncal LE. My radiation oncologist is the one who diagnosed it. Be sure you see a certified, trained LEPT. There are references on the StepOut site that Binny posted. I learned massage techniques. Also I wear a mild compression bra 24/7 and sleeves & gauntlets when I fly. No way do I want it increasing or migrating.

Trishyla

What makes me so angry, Minus Two, is that I was advocating for myself. I went to the premier doctor at one of the finest facilities in California. Dr. Patel is a Lymphedema surgeon. He should be an expert in all things lymphedema.

Instead of helping me, he derided my concerns, as if I were overreacting to something completely innocuous. Urghhh. Frustrating, to say the least.

I'm so glad we have Binney and all the other wonderful people who research and advocate for all of us dealing with lymphedema. Kind of a sad commentary that our best information comes not from the medical community, but from other breast cancer survivors.

Trish

Binney4

Trish, I feel your frustration. Just know that the lymph system has long been a mystery to the medical community, even thought of for eons as insignificant. In the last decade that has changed dramatically as some important research has been funded, and the findings indicate it has a much larger role in keeping us healthy than anyone expected. Our doctors (and other medical professionals) have suffered from a lack of training in the lymphatic system as a result of the long lack of understanding, but that too is shifting, and hopefully those now in medical training will graduate with a better understanding and respect for the wonder that is our lymph system. And the struggles we face when it turns renegade!

Here's a page with three brief articles about the history of lymphedema awareness and treatment. I've found the subject fascinating, and it does help explain why we're still grappling with a lack of awareness:

http://www.stepup-speakout.org/History_of_Lymphede...

In the meantime, I feel really fortunate to have this forum here at BC.org where we can support each other and share our experiences. Please do let us know what you discover!

Gentle hugs,
Binney

Rah2464

Trish I agree with you on the lack of awareness or concern from parts of the medical community. My MO was very responsive when I described my arm pain to get it evaluated. My breast surgeon, when I asked about implementing prescreening activity prior to surgery, was less responsive. I am going to keep speaking to her about it, along with my PS and MO every time I see them to see if I can begin to move the needle on proactive care. I have a friend who is just beginning her breast cancer journey and she will not only be measured prior to surgery, she will be evaluated monthly for a year to watch for any lymphatic changes. So if we can only get that focus to gain momentum for all the other patients coming along. Maybe if we from the patient community push we can begin to change the approach.

TwoForOneSpecial

A month later, here's the update: I had an appointment with a DPT at the "Lymphedema Clinic" that's part of our cancer center (is this a common thing to have? I feel lucky to have access to it!) The therapist heard my story, took one look, and said it is absolutely lymphedema. It's not just the swelling, but some discoloration and also something about my pores... She was not happy to hear that my oncologist, despite identifying it as probably lymphedema, just said not to worry about it. It was only after posting here that I called him back and asked for the referal.

So, good news is that it really is pretty minor, but of course the goal is to keep it that way. I will be getting a compression bra (she said that since the swelling goes down at night it's probably OK to take it off to sleep, but other than that it's an all day - every day - for the rest of my life - kind of thing. What a bummer. I'm coming up on a year post-op, and it seems like I should be able to relax a little and start to feel better about the situation, but no such luck. I literally had one lymph node removed so thought I'd never have to deal with this.

And those friggin' compression bras are expensive! She's talking to my insurance to see what they'll cover. She showed me two options, one of which was $80, and the other (much more appealing looking bra) was $188! I'm actuallyl thinking about bringing in all my sports bras next time I see her to determine if any of them might be an acceptable subsitute, at least part-time.

So, now I have appointments to come back once a week for 6 weeks for treatment - massage, and I don't know what else. I scheduled all of the appointments for 9:45 AM - that way there's no point going into work for 45 minutes and then leaving again, I'll just take the morning off... might as well get some tiny benefit from this.

Well, on the plus side, my arm measurements have a 0.0% difference, which she said is really unusual for anyone, even in the general population.

So, thanks everyone for chiming in and telling me not to ignore this.

Rachel

p.s. - just got a call to tell me that my insurance will cover 2 bras/year with a 20% co-insurance, so that's good news too.

MinusTwo

Rachael: It's great that you're on top of it. Good news about the insurance covering the bras. My LEPT said most sports bras don't come up high enough under the arms or up the back, but I'll be interested to see if she likes any of yours.

I wear an expensive Belisse Bra when I fly. But for every day I wear a Sydney Bra from Wear Ease 24/7. This bra actually looks "normal" and is cut so I can still wear most of my clothes and is VERY comfortable. They often have sales - buy one get one 1/2 off, or maybe free shipping. Wear Ease is a woman owned & US company and they are very helpful if you want to call them. https://www.wearease.com/products/sydney-bra?varia...

navy1305

I only had 2 nodes removed and also ended up getting lymphedema that did not start until 3.5 years after my mastectomy. I did not have any radiation or chemo. I use this compression bra and wear it 24/7 and love it because it makes me feel so much better: https://www.prairiewear.com/collections/lymphedema...

I found that sports bras made my issues worse because the band was somewhat constricting (or maybe I'm just too fat 🤣😬). Like MinusTwo mentioned, the compression bra goes up higher on the sides and back, so it does a better job in those areas, which is helpful for me.

MinusTwo

Thanks for that link Navy. I'll look into that. The PrarieWear bra looks a lot like my Belisse Bra https://www.jovipak.com/upper-body/bellisse-produc...=32.htm

While I like the heavy duty compression, I find it too hot to wear in Texas most of the year.

navy1305

I was stationed in Corpus Christi when I was in the Navy, and the humidity along the Gulf Coast was pretty terrible in the summer! The Prairie Wear material is not that thick and also is similar to gym clothes in that it wicks moisture, so even though it covers a large surface area, I have not found it to be uncomfortably hot when I exercise. However, I do not live in a humid area so I can't say how hot it might feel if worn in TX.