Newly diagnosed. Lymphedema prevention question

ozma32

Hi, I am new here. I am having a sentinal node biopsy done prior to my unilateral mastectomy. I am wondering if/ when I should use a compression sleeve after either or both procedures to help prevent lymphodema? I have read some medical studies that show it helps with prevention. I know about the care of the arm in prevention by avoiding hurting or puncturing that arm, and I know to wear a compression sleeve if I fly or travel regarding altitude and pressure. What I don't know is if I should wear one more often than that as a preventative measure? If so, how soon should I start wearing it after the surgeries? One of my Dr.'s seem to poo poo the need, but I don't know if I agree based on what I've read.

kathabus

Has anyone talked to you about taking your L-Dex score before and after your surgery?

ozma32

No, but maybe because I haven't had the surgery yet? Should they do a before and after? They seem very unconcerned about lymphedema. My mom had breast cancer and developed LD and it was very painful for her.

ozma32

I found something about measuring my arm before surgery. I will ask my PCP about it or perhaps do it myself. I am still wondering about the sleeves too.

• Have the circumference (distance around) both arms measured before surgery. Although lymphedema can affect the breast, chest, and underarm areas, it's more common in the arm or hand on the same side as the breast cancer. Early swelling in the arm can be hard to notice. Ask your doctor or nurse if baseline measurements can be taken around your hands and at various points along your arms (every few inches from the wrist to elbow to upper arm), followed by regular measurements at the same points after treatment. If this service is not available, ask to be referred to a physical therapist who does offer it (see next item — this is your best bet). You also can take measurements at home using a flexible vinyl spring-loaded tape measure or a paper or plastic tape measure — the kind you might see a tailor or dressmaker use. (The stiff metal tape measure that homebuilders and remodelers use won't give an accurate reading.) With these baseline measurements, you'll be better able to judge any changes in your arm and hand over time. Measuring both sides is important, too, for telling the difference between weight gain, which would increase the size of both arms, and true lymphedema, which would affect one.

kathabus

Yes—before and after. This is one of the ways my lymphedema was discovered. And it is a helpful tool to see how the treatmentsare helping it.

The first L-Dex score should be taken before your surgery. Then you will have a baseline to work with. L-Dex can pick up an issue before you can visually see anything.

I was told to wear a sleeve when my “after" score was up more than 6.5 points. I have not been able to get my score low enough so I wear my sleeve on a daily basis. Everyday.

ozma32

Kathbus- Thank you so much. Do you mind if I ask if you also wear the glove? Or is only the sleeve needed? How do you know which compression level to buy? Do you wear it during the day or night? Sorry for all the questions, but I cannot seem to find the answers in online searches.

SpecialK

ozma - I too endorse having before/after measurements done, preferably by a certified lymphedema therapist. Ask your surgeon for a reference, or find one yourself. This is the person most proficient at this type of measurement, and will be the one who would supervise you in the event of a lymphedema diagnosis with education, exercises, MLD therapy, etc., and who determines level of compression and need for additional items such as glove or gauntlet. I was diagnosed with bi-lateral lymphedema after surgery and chemo and have been managed by certified therapists. My actual fitting and garment ordering is done by a medical device company that specializes in limb prosthetics and garments. I would not advise you to measure yourself and order your own garments, this is an area that requires supervision and expertise. Here are some links:

https://www.breastcancer.org/treatment/lymphedema/therapist

https://lymphaticnetwork.org/living-with-lymphedema/find-a-lymphedema-therapist

There is also a website called www.Stepup-Speakout.org, but I am having difficulty linking it. If you use the search function on this site you can see other threads where that site content is discussed.

Here is a link from Memorial Sloan Kettering with a lot of good LE content.

https://www.mskcc.org/cancer-care/patient-education/common-questions-about-breast-related-lymphedema

kathabus

A lymphedema specialist could help you. You can get some personalized information for your own situation.

I do wear a gauntlet and a compression sleeve (20-30 compression).

If my L-Dex score didn't change, I honestly wouldn't need one. But it did and I wasn't able to get the score down after working with a specialist for a few months. So I use the sleeve to prevent my situation from getting worse. If it doesn't bother you to wear one, I'm sure it doesn't hurt to proactively wear one!

Rah2464

I echo the recommendation to get measured before surgery. It should be the standard of care, but you will have to push for it. My surgical (left) side was always thinner than my right dominant side. So when the lymphedema appeared, the swelling was just enough to make both sides match. I have the pain and sometimes visually you can see it, but the therapist could only record as mild since my left side wasn't larger than my right and she had no pre surgical measurements. She did recommend wearing a properly fitted sleeve for the first year post surgically as a preventative measure. She alluded to some research on this but I have yet to find it, so curious if anyone else has been told that.

NotAsCalmAsILook

I'll third the suggestion to get pr-op screening with a certified specialist. None of my doctors have weighed in - it's been all the PT (LE). That includes exercises, manual drainage massage, compression garments and usage instructions.

Also, my health insurance covered the garments with zero out of pocket which wouldn't have happened if I bought them on my own.

MaiMastectomys

I too have developed lymphodema in my breast cavity after a double mastectomy & removal of sentinel lymph nodes on both sides. I am having reconstruction & the surgeon tells me the swelling is due to my being too active. Everything I’m reading says to stretch & be more active. I’ve been walking a mile or two each day, but it’s clearly not enough to get the flow going away from my breast cavity. I don’t want to be scolded anymore for what seems to be a typical side effect. I have found a tea that I just ordered that helps to cleanse the lymphatic system. Maybe that will help.

mamacure

I was told to wear my sleeve & glove everyday for 12 hours starting day after surgery (for 30 days) to help prevent L. I feel like I'm the only one. I'm glad I got my arm measured before surgery.

Rah2464

I think there is a glaring hole in post surgery treatment protocols not to address some attempt at preventing lymphedema from starting beyond what they currently do. My Lymphedema therapist who measured me 1 1/2 years post surgery stated that she thought wearing a sleeve for a year post surgery reduced chances of developing it. I have not been able to find a study that supports that theory but I cannot imagine the sleeve support doesn't help.

Mamacure I am glad you were measured pre surgery, hope they continue to measure you with some frequency the first two years post operatively. While I have a mild case, it is a bother because it flairs up anytime I do anything remotely physical so prevention is key.

mle42

ozma, thanks for asking the question, and thanks to everyone for the replies. I’m scheduled for SNB in a couple weeks and at none of my three pre-op appointments did my surgeon even mention lymphedema as a possible complication, let alone offer suggestions for prevention or take pre-surgical arm measurements. I realize the risk is low compared to ALND, but still…. We shouldn’t be left on our own to do all the research!

AliceBastable

I had a lumpectomy and sentinel node removal. I've never had a lymphedema problem. I did get a few weird arm sensations, but no swelling, the first few months after surgery. Slow overhead fist pumps took care of it. I don't think there's a way to predict who will get lymphedema, but I wanted to let you know it's not everyone.