Nodes removed How Many?Have you developed Lymphedema

ruthbru

and if my treatment means that I am still alive in 20 years....even if I have developed LE.....well, I'll be glad to take that deal

lago

10 nodes (level I nodes)  removed from left side. Diagnosed with mild LE (between stage 0 -1) after 4th chemo tx aprox 3+ months after surgery. Right side 4 nodes. So far no problem. BP every 3 weeks on that side (manual) no sticks either side.

No regrets.

----------------------------

When BS does a sentinel node dissection the plan is to remove as few nodes as possible. Usually 1 or two but it can be as many as 4 or 5. In my case 4 lit up so  he removed 4. The fewer nodes the less your chance but even removing your breast has risk of LE. Some people are just more likely to get it but they don't know who.

My neighbor, diagnosed after me, over 10 years older,  overweight (I'm not) same team, had 25 nodes removed. Last time I spoke with her she had finished chemo and still didn't have LE. (She's doing rads now so I don't know if she's still LE free).

pil

I have seen some here talk about cording. What is this?  Thank you

lago

Here's the link on cording. I had it on both sides but mostly on the right, the side I don't have LE:

linky

YamahaMama

Lago, I'm not sure if you had the same experience I did, but I found it incredibly reassuring when my therapist gave me some articles on cording...it was nice to know there was a real reason I couldn't move my arm without pain!  I was feeling like such a baby, complaining about the pain, and I feel like I have a pretty high tolerance level!

KS1

I had all of the risk factors -- complete Level 1 & 2 axillary node dissection (22 nodes), 6 surgical procedures to the axilla, radiation to axilla, bad cording, seroma, injury to hand -- and I did develop LE fairly early on. Given what was done, I am told that I am lucky that the LE is mild. The LE seems to have progressed over the past month or so for no discernible reason. KS1

lago

My cording wasn't painful. My first therapist didn't know what it was. I read about it on that link. When I finally was diagnosed with LE (my onc) I went to an LE MD and he talked about it with me. You can hardly see them now

YamahaMama

I'm glad you didn't have any pain with your cording, Lago.  My therapist recognized it right away, but said she'd only seen three cases in the years she been doing this therapy, and I think that's 10 years now?  I have a hard time straightening out my arm, especially if I try to raise my arm above my head, or to reach for something on the floor, where I have my elbow locked.  It pulls down the arm, into the forearm, and sometimes into my thumb.  I'm still hopeful it will eventually clear, once all treatments are completed!

faithandfifty

It's time for me to come out of the closet.

I am the cautionary tale. I have had no nodes removed and do indeed have LE in my arm and chest. I'm certainly in the shallow end of the LE pool -- I certainly recognize that truth & do everything I can to stay here.

Some back story. My first DCIS dx was just over 4 years ago. I had a lumpectomy followed by traditional rads (33)..... gratefully went back to skipping along my merry way, riding my bicycle all summer on serious hills -- averaging 20 to 35 miles a sunny day, receiving anew the memo that exercise is good.

Second dx of DCIS 1/10 which required a mastectomy to right side, which had already undergone the previous treatment. I chose to have a BILAT & no reconstruction. Recovery was going along in an upbeat manner, with the notable exception of a frozen shoulder to my right shoulder.

I started PT with trained LE therapist, who was suspicious that my chest displayed cellulitis. We were wintering in FL by then.... she referred me to 'new' BC surgeon in FL who dx my cellulitis and prescribed antibiotic. A week on first prescription saw no progress what-so-ever and I was given a higher level scipt. (PT took my first arm measurements ever & gave me pages & pages of precautions and began gentle LE drainage massage and manipulating my shoulder oh, so gently.)

That puts me about 2 months after BILAT. It was about that time that my arm started feeling like it didn't belong to me. Like I'd picked up the wrong arm in the coat check room.

I continued to see the PT, 3 times a week. We added kinesio taping to the story. My upper arm never passed that ol' gold standard of 2 cm difference. The most she ever clocked it was 1.8 cm bigger.

At about this same time, my hospital's Breast Cancer Care Nurse continued checking in on me by phone and I told her about the low-level LE and our treatment plan..... This nurse was the first medical person to tell me, "That's an impossibility!!! You had no nodes removed." (She was insistent by phone.... never having seen my arm.) Needless to say, I lost all respect for that woman and ultimately that hospital's care system.

From there my chest developed a hemotomaseroma. It was a huge knot protruding from my chest that limited my breathing. My original surgeon said that it would ultimately resolve over the coming 12 to 18 months. When I saw my regular PCP she said that response was unacceptable. She could only imagine my pain and could see the restriction to my breathing and together we "fired" the surgeon who had performed both my lump and my BILAT and I was referred to a whole new hospital and surgeon.

It took 6 weeks to get in to see her. After about 3 minutes in her care she drained the hemotoma/seroma w a HUGE needle and I could breath!!!!!

Meanwhile my arm continues it's journey w LE, my shoulder is resolving/thawing and my arm is definitely not returned to it's former glory.

I could ramble further. I've hesitated being so specific here -- because I don't want to "freak" (clinical term) anyone out. The truth is, we are each uniquely our own story. My journey is different that everyone else and vice versa.

My own 2 cents to every BC survivor? Do absolutely everything you possibly can to take LE precautions!!! Absolutely everything. Become knowledgable and be your own advocate.

Yes. I do intend to raise my voice.

Hydrate. Get in shape. Lose weight if indicated. Get compression garments for flying and wear them. The whole ten yards. [That is not meant to be the exhaustive list.]

I don't think that there is a thing I could have done differently to have effected my life's outcome. I don't want to imply that it's "all a crap-shoot" either. Being pro-active and informed is always a good plan. There are brilliant and compassionate -- and hilarious women who will be here to help pick up the pieces if that becomes necessary.

All I know is that it, LE, can happen, period. I don't know that there is any formula or number of nodes that can assure you of not experiencing this continum. We each need to make the very best choices we can when making them.

There are gazillions of people here at BCO with medical expertise and access to studies with statistics and the understanding of how to interpret that data. I am neither.

I am just the exception to the rule.

Sorta like when that woman told me it was an impossibility for me, a brown eyed woman, to give birth to a blue eyed baby. She was uninformed. It was only her experience not to know any brown eyed moms of blue eyed babies. It's possible here on earth.

So is having no nodes removed and having a life-time of ramifications from LE.

I wish you every best possible outcome as you move forward in your decision making.

xx00xx00xx00xx00xx

Strength and courage.

Strength and courage.

Strength and courage.

LtotheK

"With PE it went away, but after the LE my PT told me that getting bad cording after surgery is an indicator that you are at higher risk for LE. "

One of the things that drives me bananas about this disease is the contradictory information.  My LE therapist told me there is no relationship between cording and lymphedema.  They aren't even exactly sure what cording is.

I had cording moderately.  It cleared up.  I had six nodes removed, no sign of LE yet.  I wear a sleeve flying.  I also keep my weight down, exercise, and take other precautions.

They really don't understand why some get it and others don't, but I will say this, you can't dictate to your surgeon how many they take.  In my case, six were clustered, so even though he wanted to take 2-3, I ended up with 6 out.  Which sux.

ruthbru

People can also get LE from an accident, a fall, a blow to the chest in a sporting event etc......it is absolutely not just BC related....in fact, we are 'lucky' (using the term very loosely, indeed!!!) because at least we know what to look for and what we can do to be careful.....other people at risk for it don't even know that they should be taking precautions, and if something does happen they are often misdiagnosed or undiagnosed.

Fearless_One

I had axillary node dissection (3/4 of all my nodes removed).   I never developed Lymphedema.   

kira66715

Faith--thank for your heartfelt and honest accounting. I was struck by all of your post, but ths stood out to me:

All I know is that it, LE, can happen, period. I don't know that there is any formula or number of nodes that can assure you of not experiencing this continum. We each need to make the very best choices we can when making them. 

How eloquent.

I got it shortly after surgery with 3 nodes out, a seroma and extensive axillary web.

For all the women who've posted that they haven't got LE, I would quote Lago's earlier post: the risk is forever. You are not out of the woods.

And Faith, why do health care professionals cling to myths, created from their lack of information. I"m sorry, but if you deal with patients at risk--or as Dr. Cormier (a surgeon) said at the last NLN conference--"I don't treat LE: I create it."--if you are dealing with patients at risk, you need to know the facts.

That's why we put up the page for health care providers:

http://www.stepup-speakout.org/essential%20informat%20for%20healthcare%20providers.htm

And Ruthbru, you're so right--at least LE is eventually acknowledged in breast cancer patients: I've treated patents with LE from ovarian cancer, head and neck cancer, melanoma--the man with head and neck cancer was literally suffocating, and no one else made his LE a priority. Luckily, I'd been to the NLN conference, and referred him, and he got tremendous relief.

So, yes, you can get LE with no nodes out, and you can have a complete axillary dissection and not develop it (although the best study I've seen says that 50% of women with ALND will get LE by 20 years out), but we all need to be aware and act accordingly.

Kira

LindaKR

I had 18 nodes removed, 5 positive, and have mild (Stage 0-1) LE in my trunk and arm.  My OT wants me to do lymph drainage self massage daily, wear a sleeve when I exercise, do housework and fly, also had me get a JoviPak and compression bra for nighttime (this is supposed to help with the adhesions on my chest too) and a daytime compression bra. I can tell the difference if I don't follow the rules.  I had chemo, also had radiation to the chest, axillary area and the clavicle.

BeckySharp

When I first suspected I had LE I ordered an ebook on my Kindle by a Kathleen Lieu.  It is titled What You Should Know About Lymphedema.  She is a licensed doctor of physical therapy and a certified lymphedema therapist.  This part of the book stood out to me and I quote:

Anyone who has had lymph nodes removed is at Stage 0 of lymphedema.  They can always develop lymphedema if triggers occur.  Triggers include the following: stress, heat, exercising, low cabin pressure such as in an airplace or higher altitudes, injuries, etc... As a lymphedema therapist, I believe all patients who have had lymph nodes removed should have lymphedema prophylaxis treatments, including screening for lymphedema every three-six months to a year and having a well-fitting arm sleeve (compression garment) handy.

This is a short little ebook, very informative, and only $.99.  After reading it I immediately got a referral to an LE therapist.  I wish I were in NY so I could go to her.

Becky

pil

well, its too late. I am extremely worried.  I am almost at the point of no surgery and just go the alternative route with essiac and cannabis oil treatments.  

I first need to know the results of the body and bone scan.  I do not want radiation. I think I may refuse it but not sure yet.  I just dont know. I want no nodes removed at all.

I have changed my food choices.  No I am not on a diet I am choosing different foods.  Like lots of greens and raw foods, raw almonds, walnuts and lots of green tea, and organic milk in moderation.. No sugar, no white bread no beef, packaged food either and more.

Chicken in moderation as well as fish.    I had buffalo tonight a very small patty with a bowl of mixed greens, turnips and carrots.   Its amazing the government says no chemicals and hormones to buffalo but says okay for beef.

Can I do this myself, I think there is a good chance.  

I think of the possibilities and choices then I start hurting in my chest wall and under my arm.    I dont know.

Omaz

pil - I don't have an answer for you but I want to say that you just don't know if you would get LE and if you did you would catch it early and learn how to manage it. There is so much support here and advice and with the help of the women here and my rad onc I am getting along alright.   The treatment for cancer is tough.  We have to be tougher.  (((hugs to you)))

kira66715

Pil, It sounds like you're really worried: I'd go back to your initial question--can you get LE with no nodes or just a few nodes out? Yes, but the odds are in your favor that you won't. Especially if you learn the risk reduction facts before surgery.

The stakes are just too high, IMO, to let the fear of a complication that hasn't happened and likely will never happen dictate your therapy decisions.

LE is not trivial, but not getting control of breast cancer is far, far worse.

Kira

ruthbru

Please do not let the possibility of LE rule your choices. Get a medical team you trust and follow their advice. You are talking about your very LIFE!!!

faithandfifty

Pil. I, too, echo the other voices above. That the specter of LE can not be in the driver's seat of making decisions of your treatment journey.

I so hesitated to share my shory -- I am such the exception. Read back thru how many, many, many have had numerous nodes out & no LE for years & years & years.

This is a very frightening time.

So many decisions to make & they all come with ramifications & unknowns.

All the best.

Strength and courage.

Strength and courage.

Strength and courage.

xx00xx00xx00xx

beacon800

Pil, I totally understand your feelings. LE is one of my big concerns too. So much so that I researched the heck out of it prior to surgery. Having LE with no nodes out and no radiation is rare. Very rare. Remember, many women who had nodes out and did not get LE are not posting so much on the lymphedema forum so they are not here to tell their story.



My mom had 18 nodes out in the late 1980s. No LE. The cancer got her five years later but she did not get LE. Her aunt had mastectomy in the 1960s. At that time they took everything, very invasive. She died 30 years later and did not get LE and she continued to play golf til she was very old.



Make sure your surgeon is very experienced with sentinel node biopsy. Ask about his incidence of LE in his practice. Ask his nurse too as they often know more than the surgeon about what happened to the patients. Talk to him up front about if he takes all the nodes if you have a positive sentinel. Current research shows this is not always necessary. There are many posts about this new research, so check them out.



Dying of cancer is about a million times worse than having an increased risk of LE. Don't let that worry hold you back from treatment that can save you.

AnnetteS

I had 22 nodes removed on my stage 2 side and only 2 nodes removed on my stage one side.  The side with 22 nodes out developed cording before I left the hospital (although my BS said it was sore from not moving it for a couple days) . I developed mild LE on that side 4 months after surgery.

My arm with only 2 nodes removed has been through hell since bmx. 8 IV pokes for 6 chemo treatments.  IV for a debridement (sp?) surgery and ten days of IV antibiotics.  Additionally I've had another 30 or so pokes for blood draws.  I am so afraid I will get LE in this arm too, but so far, no LE there :-)

ruthbru

I am so thankful that I live in a time where there are tests and treatments that give me the best chance of beating cancer. I've had lymph nodes out, chemo, radiation & am on Arimidex....and grateful for them all because they were what I needed to do to be cancer-free. The list of wonderful experiences (big and small) I've had since treatment would take pages and pages......

lago

I was so scared of LE when before surgery. I even questioned my BS. We discussed why he needed to take the nodes. I had read about LE on this site and was so frightened. So now I have LE. Granted I don't have the worst case but I've got it. No it's not great but really not horrible as long as I do what I need to do to manage it. Right now that pretty much means wearing my sleeve avoiding sticks, BP, bug spray etc. Not too horrible. Like I said I have no regrets. All treatments have SE. It's not a perfect world but this SE so far I can deal with.

TokyoSing

Ruthbru, I agree with you.  We are fortunate that we have an arsenal of treatments to beat back this horrible disease.  

I had 3 nodes taken out, and thank God, did not develop lymphedema. Still, we have to vigilent.  Lymphedema can occur years after surgery. 

ruthbru

Once I knew what I needed to do; I had to quit reading stuff on the Internet and just DO IT. Some people have horrible reactions/SE to anything and everything.....but most do not.

SpunkyGirl

Faithandfifty, your post was just fabulous.  Pil, I totally can relate to you because I was so terrified of getting LE when I was diagnosed that I couldn't see the forest for the trees.  Honestly, the most important thing you can do right now is do what you need to do to be cancer free, and an axillary dissection is critical to make sure the nodes are checked.  I'm almost five years out, and so far I've had a few minor run-ins with LE.  I've seen a therapist, was fitted for sleeves, I wear them when I need to (exercising, when my arm feels off, etc.) and I do what I have to do.  I'm thankful that I'm still doing well.  If you feel like you need a second opinion, get one.  But make sure you put your long-term health first.  Good luck to you in your treatment decisions.

beacon800

Pil,  I want to answer some of your questions to the best of my ability.  here is what I was told:

Chances of LE are higher when greater than 5 nodes are removed.  Heavier women get LE more often then thin ones.  Chances of LE from sentinel node alone are 3-6%.  I do not know how long the study ran that gave that last number so I cannot say that is a lifetime risk.

Sometimes your surgeon wants to take one or two nodes but cannot as the architecture of the node structure does not allow them to be separated.  That is why you cannot be exactly sure how many nodes will come out in your sentinel biopsy.

I want to mention the reason I was so fearful of LE:  at that time and for months prior to surgery I had chronic hives and swelling.  All day, every day all over my arms, hands and torso.  My condition was such that if I developed LE I would not be able to tolerate compression garments.  I was scared.  If anyone was going to get LE, it was sure to be me.  I pulled every research that Stanford Hospital had and consulted with some of the best LE experts in the US.  I interviewed radiologists, LE therapists, surgeons and the wonderful women of FORCE, who all have BMX.  I learned what I was up against and based on that I  proceeded.  After surgery my hives and swellings continued for almost one year.  (it was the definition of hell).  But I did not get LE.  I still worry about it though.

I will fly for the first time next week.  I am taking sleeves with me. I am nervous but hoping for the best.   I have never had BP from my arms since surgery.  I have had 3 blood draws from my non dominate arm, infant sized needle, no tourniquet.  It's been ok; no LE. 

Binney from this board gave me and continues to give me wonderful advice.  May I say, that to my joy, the hives are gone!!  That is a blessing to me.  Hang in there Pil, even when it seems like everything is against you, sometimes it works out ok.

sundermom

I had 32 nodes removed in December and have had no signs of LE.  I have flown in a plane since then, but I did wear a compression sleeve.  I adhere to the usual precautions of no BPs or needle sticks on that side.  I start radiation tomorrow, so I'm hoping to continue to avoid signs of LE during that process.

Tammy

DocBabs

I had sentinel node removed during mastectomy last week .So far no problems.In the hospital there were signs around my bed warning  no b/p, IVs or blood drawing from right arm and I asked if this was forever but was told only till I heal up then no restrictions.