SLNB on both sides

anneoftheforest

I have become rather worried about developing LE so I thought I'd post my question here.  I had SLNB on both sides.  One lymph node removed from my right and
three from my left. I am right handed. I was thinking of using my
right arm for my draws and blood pressure since only one was removed and now I wonder if I should
go with other places on my body. I feel guility/horrible for allowing the SLNB
on my left prophalactic side especially since three came out instead of just one.  My DCIS with microinvasion on my right breast was not seen on
mammogram but was found because I had bloody nipple discharge.   At the time I wanted to be sure there wasn't something lurking in the left breast that would require more lymph nodes coming out.  I guess hindsight is 20/20. How do you decide
what to do? Should I see a LE specialist just for recommendations?

Ridley

hi elilacs -  no advice other than not to feel guilty.  I'm in the same spot, with one node removed on the right side and two on the left side.  I feel I made the best decision I could at the time, and I'm sure you did too.  I haven't had to have a blood draw or blood pressure done since my last surgery where they removed the node on the right side, so I'm not sure what I will do.  I have read to avoid using the machine for taking blood pressure.  

I will be back to read what others advise.

Ridley

PS - found my cancer as a result of bloody discharge as well.  Had a mammo and ultrasound callback 8 months earlier that didn't find the invasive cancer on the discharge side or the DCIS on the other,

cinnamonsmiles

I "only" had sentinel nodes removed from both sides (one axillary on the right).

I got LE in BOTH arms and hands, and trunks areas.

I do NOT take a chance of making it worse by letting blood draws or blood pressures on the hands or arms.

I get all blood draws in the foot (Mayo Clinic now recommends that the foot be elevated for two hours after).I

I get all blood pressures in the lower leg.

It is much easier and better to prevent LE than controlling it after you get it. 

Getting needle sticks and blood pressures in the arms/hands after ANY type of node removal is like playing Russian roichulette....you never know which stick or blood pressure will bring on LE.

anneoftheforest

Thanks cinnamonsmiles for sharing. Why elevate the foot?  Blood clots?

Binney4

cinnamon, thanks for the update from Mayo! Do you by any chance have a link to that? I assume it would be a blood clot problem they're trying to prevent. Nice idea, though--grab a good book, sip a cup of cocoa, and put your leg up!

Heh, heh!
Binney

anneoftheforest

Thanks Ridley for your post.  I will try not to feel guilty  Hearing your story makes me feel better.  I do feel very fortunate that it was all caught early.  If I hadn't had that bloody discharge I wouldn't of known.  I had just weaned my youngest so I was hoping against hope it was just something weaning related.  But my mother's breast cancer at 44 alerted me otherwise.

I think I am going to get a referral to an LE therapist at the cancer center in my city.  I think it won't hurt to get my arms measured and to just get educated on my risks.  Maybe that will reduce my anxiety a bit.

Ridley

Cinnamon -- sorry you ended up with LE in both arms and your trunk from SNBs -- you really beat the odds unfortunately.

I think I'll do the same as Elilacs and get a referral to see an LE specialist so I can get better educated.

I also think I'm going to have to be a better advocate for myself in this area.  I was at an appointment with an oral surgeon the other day, just for a consult, and his nurse wanted to take my bp.  I asked her if it was really necessary given what I was there for, and she got her back up a little and asked me if I had nodes removed on both sides (um -- yes -- otherwise, I would have let you take it).

Ridley

cinnamonsmiles

I don't have a link from Mayo Clinic regarding foot elevation because I heard it directly from the person who drew my blood. Due to time constraints and the fact that my Pulmonologist from Mayo would have to be contacted for a foot draw order, I let them take blood from my left hand.

The per on who drew my blood told me that Mayo requires all patients who get foot blood draws have their foot elevated for 2 hours afterwards.She told me that if I had gotten a foot draw, I would have had to stay in a wheelchair for 2 hours and that they have people who would wheel me from appointment to appointment.

I told her that my local clinics never mentioned that and her direct quote was,"I'm not surprised." 

I assume it is for blood clots, but I had other things on my mind like hurrying up and getting to my next test in time that day.

Binney4

Cinnamon, thank you--really interesting! And wow, what a day you had! Hope it all went well.

Hugs,
Binney

cinnamonsmiles

Ridley (and others)....

You can always get your blood pressure taken on your lower leg!

I also highly recommend going through the whole website called http://www.stepup-speakout.org/

inks

I assumed the avoiding BP and blood draw applied only if you had a full axillary dissection. I only had SLND on both sides and they told me I could use either arm for chemo and I went through chemo without a port just fine.

cinnamonsmiles

That is not true. Those with "only" sentinel nodes are also at risk for LE. I had sentinel nodes removed and have LE on both hands and arms and trunk.

Letting blood draws and blood pressures on arms where sentinel nodes were removed puts a person at risk. I say it is like play russian roulette if someone with sentinel and/or axillary nodes are removed lets blood draws or bps on the arms or hands. You very well may not get LE, but then again you might. There are many of us on here that have LE from sentinel node removal.

I am not a doctor, but from what I have learned, your medical clinic gave you less than accurate information.

I think it is easier to prevent LE than it is to live with it. I wish I would have been informed and taken LE preventative precautions right from the start and I may not have gotten LE and it stinks that I COULD have prevented it had my medical team explained LE precautions.

http://www.stepup-speakout.org/ is an excellent website for LE.

I am glad you went through chemo without gettting LE. You got lucky . But like I said, one never knows what blood draw or bp will bring on LE.

anneoftheforest

I met with an LE therapist and she evaluated me and took arm measurements. Since I had SLNB in both arms she said I am low risk for LE (around 4-8%) but it is a lifetime risk.  We talked about things to do to prevent LE like taking the blood pressure on the leg if possible or using the arm with less nodes removed if the leg isn't possible. She said to ask for the smallest needle and the most experienced phlebotomist if I have to do it in my arm.  I can just imagine that would go over well   She said even if I don't follow all the recommendations at least I know the risks. It was very informative and at least she has my baseline measurements if something comes up.

Thanks cinnamonsmiles for the website reference. Inks, I'm glad you had no problems with LE.  My surgeon said I was low risk and not to do anything different but I'm already a worse case scenario kind of person and wanted to know ways to prevent LE.

Thanks for answering my questions. I know I don't have LE but I appreciate your time.

inks

elilacs - that is the estimate I was told too. I was told that my chance of LE is 5% but since I have my axilla radiated too it rises to 15%-25%.

cinnamonsmiles - so sorry that you have LE. Your chance of getting it was small but you are proof that it can happen. Do you know specifically if yours was brought on by blood draw or BP? My grandmother also has LE, she's a 4 year BC survivor and says that she will continue working until she's 82.

I read that starting a very gradual weight training could help prevent LE. So that's what I plan to do since rads raises my risk of LE. I already lug a 25lb baby around all day so I wonder if that counts as weight training?

anneoftheforest

inks - I have a two year old that likes to be held as well   I asked the LE therapist if I could use my rowing machine and she said yes but to take it very slowly and gradually build up.  She also recommended I get compression garments for when I exercise.  I met with her once to be evaluated and she wants to see me two more times to go over education and prevention in more detail.  I had my BMX 12 weeks ago and my exchange surgery is next week so she wants me to wait until after my surgeries to start slowly working on exercising.  Plus I have some range of motion limitations that she wants to follow me on as well.

I am glad I saw her even thougha sometimes I feel as though it is a bit overkill.  I didn't have radiation.  But I'm only 37 so I feel like I need to be proactive.  A PT friend of mine and someone on the FORCE website mentioned getting evaluated by an LE therapist.

inks

elilacs - that's too funny, I'm 37 as well and have a 2 year old and a 13 year old. My PS told me to hold off of any upper body exercises until I get to have the exchange too. My range of motion is perfect, I just did the exercises at home, they wanted me to go to PT but it's so hard with a little one at home and so many doctors appointments already. It's good to know about the rowing machine being OK, but I'll check with my PS just in case, some of the upper body things feel so weird now that I have the TE under the muscle. I used to hate any upper body exercises at the gym and my arms have always been like spaghetti. I hope your exchange surgery goes well and that you avoid the LE!

anneoftheforest

Inks - Thanks for the well wishes. I'm BRCA2+ ... I noticed you were BRCA1+.  I hope you get your expanders out soon. They are like boulders Did your PS give you excercises to do?  I thought my range of motion was fine but the therapist moved my arms in certain ways that I had limitations. She said I had functional movement but I could improve in other areas. Always something!  I'm supposed to get my ovaries out soon. Either I'm reading about reconstruction, surgical menopause or LE.  Oh well, one thing at a time or I'll go nuts

inks

I will have to let my skin heal at least 3 months after radiation and then I can have a exchange surgery. I'll probably have the oophorectomy while I wait for the exchange surgery. There was a large Canadian study published in February about BRCA mutation and the timing of oophorectomy and the recommendation for BRCA2 was to have it at age 40, since only 1 woman in the study with BRCA2 had ovarian cancer before age 50. It sure is a lot of important decisions in a very short time.

I got my exercises from the breast surgeon, they are just the regular ones found everywhere. But he told me to do them in the shower or right after shower when everything is still warm. I am sure your LE specialist will set you on the right track.