WTF!!!!!

Birchbeer6

Today is 2 weeks, since I had my BI mastectomy with TE, I dont know how I should be feeling, Dr, took out 7 lymph nodes on left side and I am still feeling sore, stiff and numb, started therapy at the PT tells me I now got to look out for Lymphedema..WTF, can someone please explain what this is in simple english terms, cause I dont understand it...I went on the lyphedma board here and I dont find any answers, just more confused.....

JAT

Hi-- You don't state your diagnosis, but if it's DCIS, I'm assuming you had a sentinal node biopsy. I had a bilateral as well, with TE expanders, and 5 sentinel nodes removed.  This is to avoid the axilliary node dissection (only done when invasion ios confirmed) which runs a much greater risk of lymphadema.  My surgeon completely downplayed the risk for lymphadema, as do many, but just having even one node removed puts us at risk.  This involves swelling in the arm, hand, chest, and trunk--all are connected by the lympatic system.  You may never develop it at all, but once it starts, it remains a chronic condition that has to be dealt with, because severe swelling is painful and we become susceptible to infection like cellulitis.  The LE site offers great advice on risk prevention-- wear gardening gloves, avoid cuts and trauma to the side where you had nodes taken out, bug bites (I live in MD where mosquiotoes reign, but if I get bitten, don't scratch to prevent infection); absolutely NO blood pressure cuffs or needles on that arm!  I would have your PT do a baseline measurement of your arm and hand, so if you notice changes, you'll know just how much. I was fitted for a sleeve for when I fly (flying long distances is another risk)-- if you have lymphadema, you definitely need the sleeve for flying-- the jury is out on if it makes a difference for prevention.  Some argue to avoid weight lifting-- others say it helps. I stopped lifting weights after my mx, but swimming is good for the area.   Your PT should be able to explain more.  -- Julie

sweatyspice

I don't have lymphedema, I didn't have my nodes checked at all, so I'm probably not the best person to answer....I'm sure someone will come along who can fill in the blanks/correct any misstatements I'm about to make ....

That said....

Removal of your lymph nodes may interrupt the flow in your lymphatic system, a system in which fluid circulates throughout your body helping to remove toxins (I think that's what it does, anyway). 

So, because you had some lymph nodes removed, there may now be blockage in the lymphatic system preventing the fluid from circulating properly in that general area.

This is always a risk whenever nodes are removed; the more nodes removed, the bigger the risk is. 

So, what can happen?  What does this mean?  I think mostly your arm on that side can get swollen.  There may be other things.

What can't you do?  You shouldn't have blood drawn from that arm any more, I don't think you're supposed to have blood pressure tested on that side either.  

What should you do? There's a physical therapy technique called "lymphatic drainage" - I think it's a massage thing to get the fluid flowing.  Women who unfortunately do get symptoms of lymphedema often wear compression gloves or gauntlets on their hand and/or arm to keep the swelling under control.  I think you're supposed to wear them when on an airplane - something about the air pressure....

Again, I'm not even close to being an expert about this.  You should definitely learn as much as you can, because you are at risk.  Hopefully, you'll escape this nasty! 

DesignerMom

If you have had any surgery involving or removing lymph nodes you are forever at risk for developing LE.  Prevention is the key.  Once you have it, it is very hard to get rid of it.  There is a very active thread here on BCO where you can learn lots.  Just put GRRRRRRRRR I HATE LE in the search box.  There are some wonderful women there helping with lots of good information.  There is a website that I believe is called  standupspeakout.org that is excellent for LE info.  Best of luck.  Hope you never develop it.  I don't want to either, so I was fitted with a sleeve for flying and follow other preventive measures.

identtwins

Lymphedema+  lymph nodes drain extra circulating fluid out of our bodys.  When lymph nodes are removed they are not there to empty the extra fluid out of your body.  therefore you can have lymphedema which is a fluid collection in arm, armpit etc.

Binney4

http://www.StepUp-SpeakOut.org

Has information about risk reduction; proper fitting of compression garments for exercise and travel; how to find a well-qualified lymphedema therapist; truncal lymphedema (in the breast and chest rather than the arm); cording, or Axillary Web Syndrome; plus essential information for your doctors and nurses (who unfortunately often don't have a lot of training in diagnosing or dealing with this).

Knowledge is a good thing, and knowing how to reduce your risk and what to look for so you can act quickly if it should develop can reduce the fear and frustration of living with this possibility hanging over our heads.

Be well!
Binney

Birchbeer6

I had DCIS......I was so happy that after my surgery, that I got  all my test results back and Im cancer Free......I was just taking one day at a time, trying to regain strength in my arms....Now I have to worry about this!!!!! my goal was to work on picking up my 3 year old twins, now i wont be able to do that???? It just kills me, now Im back to being depressed, when I was actually happy after all of this!!!!

I still dont get , How will I Know if I have it or not, my PT said I was borderline, today has been exactly 2 weeks, since my surgery and Im still numb and feel like my skin is swollen and sunburned (on the side the nodes were taken out) is this normal

Binney4

Birchbeer, what you're describing sounds normal to me for two weeks out. And there's certainly no guarantee you'll ever get lymphedema. Most women DON'T.

I'm not sure what "borderline" means -- that's not part of lymphedema vocabulary. Is your PT specifically trained to evaluate lymphedema? That would mean s/he has had 135 hours of lymphedema training beyond their PT certification, and you should feel free to ask. If not, you might want to see someone who is for evaluation and personalized risk reduction strategies.

There IS something called sub-clinical or Stage 0 lymphedema, and if that's what your PT meant it's something you can treat NOW to be sure it doesn't progress. In that case, treatment is limited and simple, so it's well worth looking for help now. You need a referral from any doctor on your team. S/he can help you get properly fitted for a compression sleeve and glove or gauntlet (fingerless glove) for use when you're traveling, exercising, or hefting any sort of weight.

As to picking up your twins, of course you'll be able to pick them up! But working up to that slowly will be a really good idea, starting with gentle stretches. Good body mechanics helps, using both arms and keeping any weight close into your body. Three-year-olds can throw amazing fits, so you might want to get down on their level to calm them rather than picking them up when they're flinging themselves all over.

Considering that our doctors and nurses too often neglect to tell us anything about this (breast cancer's dirty little secret), it can be a real blow when we start to learn about it. But with some good information and guidelines to go by you'll do fine -- honest! Please tell us how we can help.

Gentle hugs,
Binney

Birchbeer6

Thank you so much for the helpful information......Its just driving me nut.....that my skin feels like I have severe sunburn and the slightest movement irritates it.....its making it so hard to do my exercises since Im so uncomfortable.....I am just so frustrated!!!

kathleen1966

I have lymphedema, had the full node dissection after the discovery of four "surprise" nodes while in surgery.  My lymphedema is mild.  I still have to go to a therapist, still had to put  my arm in a very constricting wrap for almost 6 weeks and I am now finally fitted with a custom compression sleeve and glove (hate the glove, but this is where my problem area is).  The lymph system is a fine tuned machine.  Remove ANY node and you can mess this filtration system up.  Lymphedema was mentioned several times to me by both surgeons I went to see. I had no idea what a pain  in the ass it would turn out to be. I hate it more than my missing breast.  I'm curious as to why you had soo many nodes removed (7?) with DCIS? Did you have 7 sentinal nodes? Five of mine removed were labelled sentinel nodes.  There were a total of 15 removed.  I hope you remain lymphedema free! 

Moderators

Birchbeer6, as well as insights and information you'll find from other members here on the discussion boards, there's a large section about lymphedema on the main Breastcancer.org site.

Judith and the BCO team

Birchbeer6

@Kathleen, yes I did have the sentinal mode biopsy......