Can I get lymphedema 15 years after SNB

suzopedia

I had 2 lumpectomies and 1 SNB in 2005 in my left breast. Then chemo and radiation. I was always careful to use my right arm for blood draws, IVs, blood pressure, etc. Now I have had two lumpectomies for a new cancer in the right breast. For both surgeries we used the left arm for IVs. The surgeon said she didn't think I needed to worry about LE since my surgery was so long ago. I want to schedule more surgery (a mastectomy) since there were surprises in my pathology report. I think taking SNB would be a good idea. But then I have no arms left for blood pressure, blood draws, etc. Is taking blood from another areas of my body realistic? Are there any alternatives? Has anyone started using their arm where they had SNB removed. It seems like my drainage system would have found a way to compensate for the loss of that one node in 15 years.

Spookiesmom

I have LE in both arms. I’ve had BP done on foot. It’s not as accurate for me. I’ve heard they can do blood draws on your foot, most nurses can’t. So depending on who has the needle, I let them use my right arm for both, or if it’s a chemo nurse, my port.

Beesie

I think it's possible to get LE after that number of years but it's most unlikely. I remember someone who used to post in the LCIS forum who's mother developed LE quite a few years after surgery, but I don't think it was nearly that long.

Since the likelihood of developing LE after an SNB is pretty low to begin with - 5% - 10%, I think - I would think that after 15 years, the odds would be tiny.

And yes, I'm 15 years out from my SNB and after being super cautious for years, I've recently had blood draws and blood pressure done on that side, with no problems. It started a couple of years back when I was getting a flu shot and a shingles shot on the same day, but the shots had to be in different arms. The nurse told me that the Shingles shot would be easier, so I opted for that one on the SNB side. Turned out that my arm was sore for weeks and I was really worried, but no lymphedema. So I've been less careful since then.

suzopedia

Spookiesmom, thanks. It sounds like you do what you have to do! And your dog is just adorable.

Bessie, I will probably start using my left arm and hope for the best. Avoid it where possible of course. I just got my flu shot and my arm is killing me 3 days later.

fifthyear

one can develop lymphedema years after treatment. A dear friend developed lymp in her arm 21 years after surgery. Came out of nowhere. After 20yrs she started doing pottery, and a few weeks into the new hobby, her arm became swollen and LE became a permanent thing in her life. She tried everything. My breast surgeon told me do NOT USE my arm, never. My MO said oh it’s ok use it. I am listening to my surgeo

suzopedia

That's interesting. My surgeon is the one who said it would be all right. I will avoid it when I can. Thanks.

MinusTwo

Surgeons cut. In addition, most docs don't know much about LE. A Stanford expert said their total education during 7-12 years of med school was approximately 15 minutes. Yes, you can get LE anytime until you die. I had ALND on one side but only SNB on the other. I have breast & truncal LE. I allow blood draws only from my ankle. I allow shots only in my hip or my thigh. I sometimes let docs do manual BP on my less effected arm, but for even minor procedures like a colonoscopy, they have to put the BP cuff on my calf.

Here's a link to an excellent reference site. Also there are a number of good LE threads on this site. https://www.stepup-speakout.org/

SummerAngel

I second the stepup-speakout site, it has accurate information. It used to be that breast cancer patients were told to never use their "bad" arm again, but that is outdated information (as well as detrimental to a person's life!)

I do nearly everything I used to with my arms, including weight lifting and hauling heavy loads around. I have blood draws taken on my arms as well as blood pressure. IVs for surgery, though, I have placed in my foot as a precaution - IVs are in place a lot longer than blood draws and blood pressure.

It is possible to get LE many years after surgery, but like others have said it's rare.

fifthyear

You all can say what you believe, but in the end, the person that develops LE suffers, not the one that gives advice. I am sticking with NOT touching my arm. All it takes is one incident and you are with it for life. So do your thing and take care of yourselves ladies.

MinusTwo

Fifth Year - That's exactly where I am. I will take any & every possible precaution to avoid spread of my mild breast & truncal LE to my arms. It's just not worth it to me to take a chances.

But we all have to identify our own risk tolerance - so others may do differently & they may be lucky.

SummerAngel

My risk tolerance is high, but I also had nodes removed from both arms so my situation is different - to not let anyone touch my arms would be very impractical. I did try to have blood pressure taken on my leg a few times by a few different health care pros and no one was able to do it. Getting blood draws in the foot requires a specially-trained person as well, and I was told I would need to go to another health care facility to have it done. As for exercise, there is evidence that working out and gaining muscle - slowly - reduces the risk of LE, it doesn't increase it. Not to mention the fact that regular exercise is great for you in general.

suzopedia

I appreciate hearing from all of you. I will need to find someplace for an IV for my next surgery. I'll ask in my doctors office about alternate sites for blood draw.

MinusTwo

Suze - most anesthesiologists know how to start an IV in the foot/ankle. If not, most surgical nurses know how. Just make sure you talk to the anesthesiologist & specify your request ahead of time - and then right before the surgery. Most hospitals now have "limb alert" bracelets that you will get if you make it clear. I also wrote all along my arms with a sharpie - no sticks, no BP. The OR team got a kick out of that.