Lymhpedema precautions? Risk?

soscaredhubby

Hi everyone.

My wife recently had a double mastectomy with nodes taken on both sides. The right side was negative, so they didn't take very many nodes. The left side was positive, so they ended up taking more than they originally planned. Obviously we are concerned about lymphedema. I know she could get it on either side, but is it safe to have blood drawn/shots/blood pressure given on the right side? She is right handed so it concerns us, but the left side is more at risk. I was also wondering what the statistics are that she will develop lymphedema? Is it likelihood that she develops this high for the left side? Thank you for any comments/advice.

AmyQ

You might check out this website for more information about lymphedema - Step-up Speakout

Even though precautions were in place on my right arm immediately following surgery, including no blood draws, blood pressure checks etc. I still developed LE. I don't really know what if anything could have been done differently. It's one of those sneaky diseases, unfortunately.

Amy

ksusan

You'll want to ask her surgeon. I'm getting anything that needs doing done on my DCIS, node-negative side (even though it's my dominant arm) at my surgeon's instruction. I'd encourage you to find an LE specialist in your area so your wife can learn some proactive strategies.

Itzy

I am just 3 months out from BMX with bilateral SNB. I was sent to the LE therapist both before and after surgery, and she instructed me in the American Cancer Society booklet, link below. She advises using other areas of the body for blood draws, injections, and IVs. She also told me though that there is little in the way of scientific evidence that any of these practices can actually protect anyone from lymphedema. My BS told me I have a 3% risk of lymphedema on either side, but the LE therapist scoffed at that number, saying there really is no number accepted, as the risk is a lifetime risk, and the SNB does not have that long term track record yet to accurately find risk percentage. She told me my risk is probably 10-70%!! (Thanks you) However, my BS does take my BP in the arm when I visit her office.

Unfortunately, it seems this is not an area where easy answers can be found. There is a lot of anecdotal evidence and a lack of scientific evidence.

Itzy

ACS Lymphedema booklet: http://www.cancer.org/treatment/treatmentsandsideeffects/physicalsideeffects/lymphedema/whateverywomanwithbreastcancershouldknow/lymphedema-what-every-woman-with-breast-cancer-should-know-toc

BarredOwl

Hi:

For some basic introduction to the risk of developing lymphedema and the condition itself, please see:

http://www.breastcancer.org/treatment/lymphedema

Here is another excellent resource:

http://www.stepup-speakout.org

I have had arm blood pressure readings while in recovery after the bilateral mastectomy with sentinel node biopsies (SNB (1 node, 4 nodes), as well as during the overnight stay after the surgery. That kind kind of surprised me, since they are experts. They now take blood pressure at follow-up visits on my leg, because I ask them to.

When I can insist, as with routine blood pressure, they can take it from my leg or not at all. I just say, "I am at risk of lymphedema on both sides, can you please use a leg?" The calf gives higher readings. The last time, the nurse at my PCP did not know how to take a leg reading, but the PCP found a thigh cuff (used for people whose arms are too large for the arm cuff). She put the stethoscope thingy behind my knee and got an accurate read from the popliteal artery. Yeah! She was worried it wouldn't fit me (105 lbs), but it did and worked. I'll know next time to ask if they have a thigh cuff.

I was not happy about it, but had a hand-IV and arm blood pressure readings on the left (1 node) for a colonoscopy at a hospital that had a policy that foot IVs are only used after axillary dissection, not sentinel node biopsy. Luckily, nothing bad happened.

If it is argued that there is no evidence that x causes LE, note that is not the same as definitively saying it is safe and does not cause it. Lymphedema can occur in some cases with SNB, the risk of it showing up is a life-long risk (it may appear years later), and once it appears, it is a life-long condition. Your wife should inform herself about the risks, unknowns and types of precautions so she can make informed decisions.

BarredOwl

glennie19

Hubby: BarredOwl gave you great links. You can't know how great the risk is for your wife. Yes, the more nodes, the more risk. But some have many nodes removed and no issues,,, others have 1 or 2 nodes removed and end up with LE. It's good to take precautions as the above linked websites suggest. Some will say, use the arm for IV's and BP's that have had the least amount of nodes removed. Others want to use the legs. Your wife will have to go with her comfort level on this after reading up on it. And I would definitely read up on prevention tips. Most doctors know very little about LE and hand out bad advice. **oh I only took 6 nodes and you are slim, you are not at risk.** Yeah, right,,,,

BarredOwl

Hi Hubby:

I actually had my arms measured by a "perometer" prior to surgery. Afterwards, they were measured at each follow-up visit to monitor for signs of lymphedema (LE) as a part of a clinical trial. This is a completely non-invasive test:

http://www.massgeneral.org/cancer/news/multimedia....

If your wife has not yet had baseline measurements of her arms, she should inquire about it. This can be helpful for monitoring/comparison purposes. Early identification and treatment is very important, should LE develop.

Others in the threads have recommended asking for a referral to a certified lymphedema therapist (CLT). Because of range of motion problems and axillary cording, I sought a physical therapist (PT) with experience treating breast cancer patients and found an excellent PT, CLT-LANA.

BarredOwl

soscaredhubby

I wanted to check back in with this thread and thank you for all of your advice. We do have a LE certified physical therapist. She has been great but wants to see my wife weekly and we aren't able to do that during chemo as well. Unfortunately, my wife has developed cording on her left side, we are still hoping to avoid LE, but have heard that cording isn't a good sign. Does anyone know anything else we can do? We are trying to be careful.