Compression bra and radiation?

JulieSim

I had my unilateral mastectomy with expander six weeks ago and I will be starting radiation therapy soon. I am still swollen and can't see myself not wearing my compression bra. I am VERY concerned.. of course I was told that swelling can get better with rads, and not to worry. But I am looking for a practical advice. Thank you!

gb2115

Hmm...in my experience compression and radiation skin are not compatible. I couldn't even tolerate wearing a bra at all the skin was so sensitive. I guess you have to do what you have to do though.

JulieSim

My PS's suggestion was.. hm.. smth like 'if you still need compression bra wear it for now, and stop wearing once you begin radiation therapy '.

Spoonie77

JulieSim --> When in doubt, ask.

I followed my teams suggestions after my surgery and during RADs. In fact, up until this month, nearly 8 months after RADs ended, I finally got the ok from my PT to stop wearing my compression/front closure bras due to pain and swelling. Now, occasionally I can wear a regular bra when going out. But due to my breast LE, I still need consistent compression. That was caused from RADs. So, every case is unique.

IMO, if your breasts are still painful and swollen, talk with your RO about using your compression bra. Mine did not have an issue with it and in fact, said that compression can help decrease build up of lymphatic fluid and lower the general swelling caused by RADs.

This was one of the hand outs my RO team gave me prior to RADs:

JulieSim

Spoonie,

Thank you for your response- and for the handouts! Eight months in compression bra, wow.. Right now, since I didn't start radiation yet, my RO didn't say anything specific about the bra. (My visit summary also says they've discussed skin care and many other things with me, I probably stepped out when this conversation happened..) I was trying to ask PS, her assistant, her resident, my PT - all four believe that I won't need compression bra in a couple of weeks. I've been using it for 6 weeks already, and every time I am trying to stop I end up with swelling. I am doing my exercises, I walk a lot, I learned to massage the area in order to reduce the swelling, but the reality is that I know I won't manage without compression bra.

How did you manage? Did it irritate your skin? I would appreciate your feedback.. Thank you again!!

Spoonie77

JulieSim - What you said there, " Ive been using it for 6 weeks already, and every time I am trying to stop I end up with swelling.", does your team and especially your RO know this happens?

The reason I ask is that both my SO and RO had said that if after surgery, my breast was not ready for RADs (due to swelling/pain) they would need to delay treatment for a few weeks. I know every case is so unique and different, so I would highly suggest making sure that your team knowns that this swelling still occurs.

Have you been diagnosed with Lymphedema or is this residual swelling from still recovering from the MX?

The odds are suppposedly small, but it happens. In my case, even though I only had 3 lymph nodes removed, that was enough to cause LE for me, though it didn't show up until RADs.

First off let me say, in regards to my compression bra, this may be different than the kind you are referring to. Sorry for the confusion if so.

I had a surgical compression bra for the first few days, and then my team had wanted me to avoid my normal underwire bras for a few months. They told me this prior to surgery, so, I had purchased these from Amazon. They were super comfy, supportive (important since I have Cs), and gave enough compression to reduce the amount of swelling I was experiencing if I went without (say in a tank top at home). Also, I think in this RADs thread "List of what to do/get/pack to prep for Radiation Therapy" there were some other options ladies had mentioned. This just happened to be what worked best for me.

Honestly, I didn't have any issues with my skin being irritated during the past 8 months. It was the only thing that helped ease the pain in my breast. I missed wearing a regular pretty bra that you know, gave me shape and whatnot, but any time I tried to put one on, like you, the swelling returned at speed, and my pain was intense. So, I settled in for the long haul and just ordered a few more.

Obvioulsy, my case is a Lumpectomy and you are dealing with a MX so things will be a bit different, but since you are still experiencing so much swelling, I would really suggest asking perhaps if an evaluation with Cancer Rehab/PT for LE is appropriate before heading to RADs. That's just me though.

If I can help with anything else, just let me know. Sure hope your team will show a bit of understanding for your continuing SEs, it's not like we just make this stuff up to annoy them, ya know?

JulieSim

Spoonie, you have no idea how helpful you've been, huge thank you for that!

Here's the thing about me, when I first realized how things work I got swollen (and scared) a lot, and I slowly learned to pace and adjust my activities, plan and take breaks. I also googled how to do massage and get rid of swelling. Plus I clearly see the connection between compression bra and my symptoms.

Long story short - when I see the docs there's no obvious swelling because of all of the above, and they probably just think I am crazy. And as you said, in their mind three nides is not a big deal, and I had also three taken.

I met PT, same idea, I presented with good range of motion and strength and no swelling, so she basically said I just wanted too much six weeks post op. I don't know what's too much, it's my first MX Haven't done more to compare:) but I am off work still, I do manage with house and little kids, but many things make me swollen and uncomfortable even with the compression bra.

I will follow your advice, will purchase this one from Amazon (I am size C as well, and my healthy breast needs a good support too), and will definitely bring my concern to RO.

It might sound like I am maybe just complaining too much, but i do know my body and i don't want to push till this situation turns into real problem..

Spoonie77

I'm glad I could help.

One thing I might suggest, since like you say, your team/PT etc only see you WITHOUT the swelling, is to take picts at home of the swelling that DOES occur when you do not wear the compression for a day or whatever you can handle, and pictures taken after a few days of wearing compression. Just to get documentation.

The other option you might have, is to go without wearing the compression for a day or two before your next appt so they can see it. Ugggh, sometimes we do have to jump through hoops sadly. I'm not fond of the fact that some medical staff have to see a thing for themselves to believe we aren't making things up, but if they won't believe pictures or their own eyes, maybe you need to find a second opinion.

I think what also comes into play, is that most medical staff are on the high alert for ARM LE, but not BREAST LE. In fact, I was not even TOLD that I could develop this. Now I'll have it the rest of my life. Wondermous. <eye roll> So, one thing I tell many people here, is to be your own advocate, always. Speak up and if they won't listen, find a team who will. Also, it can be helpful to bring them studies, as I've found they respond a bit more positive if I say "here is a 2018 study on Breast LE. could you please give me your thoughts on whether this is what I'm dealing with?".

There's a great research study, which I have bookmarked, it helped me understand the much about LE in general, and risk factors, development, treatments, etc.There's also another study on specifically Breast Lymphedema at as well. Hope these might be helpful to you.

Breast cancer-related lymphedema: risk factors, precautionary measures, and treatments

"Axillary surgery type largely determines an individual's risk for developing lymphedema. Both ALND and the less invasive sentinel lymph node biopsy (SLNB) put patients at life-long risk for developing lymphedema due to the removal of either many axillary, in the case of ALND, or few sentinel, in the case of SLNB, lymph nodes (10,11,13-18,32). However, a recent meta-analysis of BCRL incidence in patients with unilateral breast cancer estimated that patients who receive ALND have a lymphedema incidence four times higher than those who receive SLNB [19.9% (95% CI: 13.5–28.2) and 5.6% respectively] (10). Thus, SLNB is an effective option for staging the axilla while minimizing the risk of lymphedema in patients with clinically node negative breast cancer (33), including a contralateral SLNB for those patients undergoing contralateral prophylactic mastectomy in conjunction with therapeutic mastectomy (24). These results are supported by Kilbreath and colleagues, who prospectively screened for lymphedema and found similar incidence rates when they stratified their data by number of nodes removed. For patients who have had more than five or more nodes removed, the incidence rate was 18.2%; for patients with less than five nodes removed, the incidence rate was 3.3% (18). This suggests that BCRL risk associated with axillary surgery may depend on the number of nodes removed, a metric that is generally accepted as an approximation for overall surgical damage to the lymphatic system (32). Indeed, Kim and colleagues showed that BCRL incidence rates in patients with 10 or more axillary lymph nodes removed were significantly greater than in patients with less than 10 dissected lymph nodes (27% vs. 6% respectively; P<0.001), and McLaughlin and colleagues found a significant difference in the number of axillary lymph nodes removed for patients who did not develop BCRL compared to those that did (19 vs.22 respectively; P<0.0001) (16,32). Together, these data remind clinicians and researchers that the extent of axillary surgery may be an important prognostic factor for BCRL development, one which may be modified with the advancing surgical techniques outlined below. Moreover, De Groef and colleagues cautioned against the assumption that SLNB does not substantially affect arm morbidity irrespective of BCRL. In their prospective study, 50% of patients who underwent SLNB reported pain and 49% of patients experienced impaired shoulder function 1 year after surgery (25). This, and the fact that SLNB itself poses a risk for LE development, must be considered during the development of new treatments and protocols for patients undergoing treatment for breast cancer."

--- so even though patients with more than 5 nodes removed have a higher incidence rate, there is still that 3.3% with less than 5 nodes removed that will develop LE. Guess we may be the unlucky 3 %.

A Prospective Study of Breast lymphedema-Frequency, Symptoms, and Quality of Life

"Clinical and surgical baseline characteristics are summarized in Table 1. Mean age was 59 years (range 36 to 85 years). In 92 patients (74%), surgery was performed for cancer, with the remaining 32 patients undergoing an excisional biopsy of benign tissue. Of the 92 with cancer, 85% underwent an axillary procedure (either SLNB or ALND) in conjunction with wide local excision (WLE). Among patients with SLNB, a median of 3 lymph nodes were removed, while the median number of lymph nodes removed for ALND patients was 20. Ninety-one of the 92 patients with cancer (99%) underwent radiation therapy, 61 (66%) received endocrine therapy, and 29 (32%) received chemotherapy."

"Frequency of breast lymphedema

Among the 124 analysis-eligible participants, 38 (31%) developed breast lymphedema. Only two subjects qualified for breast lymphedema with moderate/severe signs at a single visit, while 36 had milder signs of breast lymphedema observed at more than one visit. All women who developed breast lymphedema underwent either a SLNB or ALND; conversely, breast lymphedema was not observed in any subjects who underwent breast surgery without an axillary procedure. Among the 78 patients who underwent SLNB or ALND, 38/78 (49%) developed breast lymphedema. The incidence of breast lymphedema was not associated with the extent of axillary surgery, since the frequency of breast lymphedema was similar among women who had WLE+ SLNB (33/67, 49%) compared to those with WLE+ALND (5/11, 45%), p = 0.82. Clinical impression of breast lymphedema was first noted at the 3 month visit in 18 patients (47%), at the 6 month visit in 15 (39%), and at the 12 month visit in 5 (13%). Among the 38 breast lymphedema cases, 8 preceded any radiation therapy, 4 occurred during radiation, and 30 occurred at least one month after completing radiation."

--- > so you can happily tell your team that in this study Breast Lympehdema was not at all associated with the extent of nodes/glands removed, it just happens if it's going to happen.

Spoonie77

Oh and I will say, just to give you an idea of what I was dealing with during my RADs....this was me a week and a half in. Pictures really don't do it justice. (SLNB scar near armpit, lumpectomy scar near bottom of pict at left)

I had 4 weeks total. My skin was not happy from Day One. Neither was my breast, ribs, armpit. In fact, one positive is that I still don't have to shave my L armpit. LOL no hair anymore. Guess I got free hair removal in the process. My RO said I broke the mold as I had crazy things happen that she hadn't ever seen in her practice. I'm a Zebra/Spoonie so I was prepared for it. It's just how my med history has gone. It was not fun in the least, BUT not wearing my compression bra made things even worse for me. I felt better wearing mine.

Again, everyone is different. What works for me, will not work for everyone. Sure hope you sail through RADs.

JulieSim

I am sorry that BC borrowed another spoon or two from you.. Your RO's response is not uncommon, I wonder if we all really break the mold, or they just don't want to surprise/scare us too much??

I am going to read the links you posted tonight (and as far as I know myself search for more after). I was always thinking myself that LE means swollen armpit or arm, not just breast. After filling the expander again this week PS said I will only need one more visit. I inquired how they can even know how much saline I need if my breast is swollen, and of course I was told that it's not swollen and looks perfectly fine. On my bad days when I overdo things, my husband clearly sees the difference, so he is there to remind me I should take it easy.

I guess it's time to find a good lymphedema specialist.. so glad you saw my question. Hope things will be getting better for you!!

Spoonie77

Thanks for your kind words about the stolen spoons. I honestly think if I hadn't been a Spoonie for the last 20 odd years, cancer would have shattered my world into a million pieces. I learned long before BC to find meaning in the small moments and to live as if today is the only day we have.

Good luck in your search for a LE specialist. I'm not sure what is located in your area, but I had great luck with Penny George Institute/Courage Kenny Centers. That's where mine is located and she is such an angel. It's like going to visit a friend who takes away 80% of your pain (in the long run of course).

Also, since your hubs sees the difference, have him take pictures of it to take to your team. Picts seriously can help. That's how I got much of the help I needed with my RADs rash that appeared 4 weeks AFTER finishing RADs.

If you need anything, don't hesitate to PM. Wishing ya much smooth sailing in your next steps and oodles of healing as well.

PS - these are the credentials my LE therapist has, just for reference in your search. Best of luck!

Fury707

I have been diagnosed with LE, unfortunately for me all of my lymph nodes tested positive 9/9 removed. My LE symptoms showed up prior to my BC diagnosis, my arm and hand swelled up from the biopsy, rare I hear and so far I have not found one other person that had this happen. I too was not informed that the breast could develop LE after RADS and feel I would have underwent a different procedure like mastectomy had I known. It has been 9 months since I finished radiation, and my LE breast still looks like a pitted orange. I do recommend an LE specialist mine has been wonderful. She not only taught me the proper way to drain but she instructed my family as well. I recently started message as well with a trained LE specialist. Be careful with lymph message if you press too hard you can collapse the lymph area which will cause a damn of fluid. Thank you both for the information about the compression bra I didn’t know that was an option to try.

edj3

Two things--first, Spoonie I am very slightly jealous of your SNLB location. Mine is up IN my armpit and it's so annoying. My normal bras (which OK I can't wear yet) and any tank top I own just dig right up into that ropy scar. Don't get me wrong, this is a totally minor thing and I realize it's a first world breast cancer problem.

Second, I had just one lymph node removed so I should be the lowest of low risk. I still saw the LE therapist both pre and post op because my chances of LE, while small, are still a number great than zero. I'm not the spoonies of spoons (sorry, Spoonie, I'm afraid you have that one covered) but I still have spoonie-esque side effects etc. So I don't want to play around with LE.

Oh and, I'm starting the last week of rads (15 done, five to go), and it's swollen city here in Kansas. I wear the softest bras that gently hold me still. I cannot imagine going without a bra, even the touch of my super soft cotton tee shirt on my scorched nipple was just awful. Bras until this is done and I'm no longer scorched for sure.

Spoonie77

Hi all -- While was changing out of my Komprex, I remembered that this company might be helpful to you ladies.

My therapist recommended this site for a few of the LE products I use daily/weekly. My insurance covered most of them, and the Komprex I do have to buy on my own, but it lasts FOREVER. My LE PT had me get the Solaris Breast Swell Spot and like I said I also use Komprex. Layering that between my breast and my compression bra/sports bra. Both of these items help circulate lymph fluid and at the same time, since I have Fibrosis from RADs as well, it helps break that down too. If anyone has questions on how I use them, etc, feel free to msg me. I won't bore everyone with the details here.

Not sure if these products, or others they have would be helpful in your cases, but the people at this company are very kind and they will even make custom garmets if needed. They follow up with you as well. I would recommend trying them if you are looking for reliable LE products. So far, for me, they've been life savers.

https://www.lymphedemaproducts.com

Spoonie77

EDJ3 - Thanks for the laugh "first world breast cancer problems" My scar is basically right above where most of my sports bras lay, so the healing portion after surgery was a bit rough. Now adays with the work my PT has done on it, it's much better and less annoyed by clothing. Hopefully your scar will take a similar path too. My SLNB was more painful than my Lump scar. In fact after surgery that was the one I was complaining about the nurses immediately upon waking up. It was like someone had stabbed me. My Lump site barely hurt and healed up to the point now, I think most people would not notice it unless looking for it. Thankful for little things!

I think that's awesome that both pre and post you were evaluated for LE and made aware of the risks, no matter how small. Drs have lots going on, I get it, but seriously, being proactive with so many things in regards to medical issues can be life changing. I wish more centers followed the path that you did. Happy that so far you have not seen LE and I hope it stays that way. Fingers crossed!

And like you, I was in agnony anytime anything touched my RADs breast, other than my compression wear. I tried a few times to sleep without it (as I was used to sleeping mostly in my birthday suit) and welp, that was a disaster. In fact, I couldn't even lay on my stomach without pain, like incredible pain, up until about March. I cried during my MRI when I needed to lay on my stomach to do some scans...ugggh. Happy to report that recently as of last month I can lay on my stomach a bit here and there if I'm careful. Slow and steady wins the race my PT says.

Fury707 - Wow, that is something I have not heard of. How scary that must have been for you! Hearing that your breast is still pitted after 9 months makes me cringe in pain. How do you deal with the pain the LE must cause at that point? I had pitting in the beginning days but thankfully after about 2-3 months of seeing my PT biweekly/weekly, and doing my own manual lymph drainage massage for 30-45 mins a night, it became more manageable. Now I only have to wear my compression and Komprex daily, and alternate days with MLD and my PT range of motion therapy. That seems to have kept it manageable. Do you still see your PT Fury? Have you tried Acupuncture? I was surprised to find out my insurance covered 24 visits without prior auth so my PT rxd me acupuncture to help with the pain. It was a godsend. Maybe that could help you too? It reduced my pain and the swelling in my case.

Sorry for the novel, ladies. I used to have a job where I relayed convos between the deaf/hard of hearing communities and hearing customers, so I needed to type fast. I used to be able to type over 150 wpm, so my posts can get a bit long sometimes. Hopefully something in them is helpful.

edj3

I for one love your posts. Keep blazing away at the keyboard