Nodes removed How Many?Have you developed Lymphedema

pil

Bacon800,

you said
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.

I have some idea what a positive sentinel is but not really or how you find out if there is one.  Can someone explain.

 My surgery is supposed to be on Wednesday.

Omaz

pil - This is my undestanding of what my surgeon did.  He used two things to find the sentinel node(s).  My lump was on the right side upper area near the armpit.  2 hours before the surgery I had an tiny injection of radioactive material near the nipple on that side.  They numbed it first.  Then during surgery he injected blue dye and he then used a geiger counter to find the node(s) draining that part of the breast where the tumor was and where the radioactive material was injected.  Once he got that area he identified the actual nodes by the dye.  He then removed them and the pathologist examined them while I was in surgery.  I hope that is helpful.

My understanding is that the sentinel node or nodes are the first ones that 'drain' the tumor area.  If any tumor cells 'left' the main tumor presumably they would end up in  the draining lymph node(s) first.  However, tumor cells can also get out through the blood unfortunately so there's that to worry about too.  Basically we don't want any tumor cells to leave the main tumor.  Checking the sentinel node is one way to see if any of the cells have left and gotten that far.  Chemo helps to kill any cells that may have gotten out.  Radiation will also kill any cells that remain in the breast or nearby areas.

beacon800

Pil, as Omaz said, they look for the  node most likely to receive any stray cancer cells.  They remove this node.  Usually while you are still under they examine the node to see if it is cancerous.  If it has cancer cells it is considered "positive".   If so, they often remove a bunch more nodes to see if any others have cancer.  This is called an auxillary node dissection.  Lately there is research indicating that it is not totally necessary to remove the additonal nodes, even if the sentinel is positive.  This research varies depending on what kind/size of cancer you have.  It is very new research and doctors are just now taking in what it may mean to their practice.  For us, it means that if we don't have to have those nodes out, please leave them alone!

Suzi1

Hi all.  I had DCIS 5 years ago and my surgeon took 8 lymph nodes, when I had mastectomy, which were all clear.  I've now had a recurrence and my new surgeon wouldn't take anymore when he did the lumpectomy due to the risk of lymphoedema.  He said my previous surgeon should only have taken 2 or 3 (that 8 is a strange number to take).  I haven't had any lymphoedema in 5 years.  Now having chemo and radiotherapy. x

Binney4

Pil, we have all thought as you do -- we have all wanted so much for there to be some way to escape from the breast cancer treatment and all its possible side effects. We want something simple and natural and not so full of unknown dangers. We want our life back!

You're so very close to your surgery date, and those last-minute thoughts of backing out are as natural as breathing. That kind of thinking is a part (even an important part) of coming to grips with this very hard and scary situation.

But in the end we can't make decisions based on fear, because we have to live with ourselves going forward. Stand tall, pil -- you can do this! We're here for you. You're in our thoughts and prayers. Tell us how we can help you move forward though this scary time, because we've all been there and we can feel your fear in the pit of our stomachs.

Hugs, prayers,
Binney

rianne2580

I told my PT that both drains were removed in less than a week from surgery. The chest drain 3 days after and the node drain 6 days after. She said that's a good sign for escaping lymphedema. She thought my drainage flow did not have a lot of fluid so it may be to my benefit in the future avoiding lymph.

Has anyone heard this theory? I was upset with my surgeon who knew I did not want a lot of nodes taken and she did anyways. My Onco score was 15 and my tumor so small. Why rip all those nodes out?

Rainne

lago

Pil I know surgery is coming up for you. I wish you good luck. To be honest after surgery I stopped crying. I was so happy that the cancer was out of me. My BMX was late on a Tuesday. Came home on Thursday. Was freaking people out that called on the phone… because I answered the phone and sounded perfectly normal. I was even considering going to an art fair that Saturday but just didn't have enough energy to walk around for hours.

Never took any pain meds because I never needed them. Not even a Tylenol. I'm not saying you will have the same experience that I had but you will find that most women here found surgery easier than they thought… and you end up feeling so much better every day.

Let us know how all works out.

NatsFan

Doc - the advice you're being given (no precautions necessary after your SNB heals) is wrong.  Unfortunately too many of us were given the same advice and went on our merry way, taking no precautions, and ended up with LE.  The unfortunate truth is that even a single node removal puts you at higher risk for LE.  It's an easy matter to avoid blood draws, IVs, etc. and take other simple precautions to protect the affected side. I urge you to read up on LE and take those simple precautions.  

It's hard to acknowledge the possibility of LE.  We've been through so much crap with b/c treatments, and the last thing in the world we want to deal with is yet another issue, another restriction, another reminder of how our lives have changed with b/c.  I know I wanted so much to believe my doctors when they minimized the concerns I had about LE, so I went along with what they said.  I wish now taken more precautions with my affected side.  I may have gotten LE anyway, but I feel that I was never even given a fighting chance to avoid it. 

Enjoyful

I had 14 nodes removed 6.5 years ago and no lymphedema.  I had some mild swelling in the infected breast and arm when I developed an infection after implant surgery.  Once the infection went away, the swelling went down and no problems since.  I do weight training and other exercise regularly to keep the fluids moving.

Wrapping and sleeves aren't an option for me as it made the swelling worse.  

kira66715

Pil, 

I hope you've come to a decision and are going forward with your surgery on Wednesday.

The sentinel node biopsy is taken after identifying the sentinel (draining) node by a combination of a nuclear medicine injection, with or without blue dye. Quite often there are up to 4 nodes that "light up".

Please take the long term view and treat the cancer: LE isn't enjoyable, but I'm so glad I'm here and able to enjoy my family, and dealing with LE is just what happened.

Unfortunately, asking your surgeon what his/her incidence of LE is may be inaccurate, as many don't recognize LE, but they should all be aware of it.

As you're read, applying statistics to the individual is fraught with danger: I had a 93% chance, as did Faith, of NOT getting LE and we did. And other women had a 50% chance and didn't.

And for Doc: LE precautions are forever. There is a big movement to debunk them as myths: and to what end? So women can be put at risk unnecessarily? It's not that hard to protect the at risk arm, but you may have to insist, and stand firm.

Pil--another woman on this forum had surgery recently--and did great--and her affirmation was "May all the hands that touch me be healing hands"--and I wish that for you.

Kira 

Suzybelle

You know, the only thing that I know for sure since I started the whole bc/le journey, is that when it comes to my options, they usually all suck.

But as lago says, there are worse things.  Hang in there, pil.  Even with sucky options, life can still be good. 

lolita85

Hola! I have removed 18. No lymphe!!! And I do exercise every day (taking care of course of my arm)!

Lunakin

I had 3 removed and got lymphedema several months later. May have had to do with the extensive stretching I did right aftert surgery, or with the bilat arm strengthening and stretching exercises a PT had me do for a rotator cuff problem on the (non-surgery) side. Or with getting a seroma post-op. Who knows? Anytime you get cut, you're at risk. My BS said: But you're not overweight, you're not supposed to get seromas!

 And now it looks like maybe removing the extra nodes doesn't make a difference in recurrence: 

The Phase III study was conducted at the John Wayne Cancer Institute in Santa Monica, California. It enrolled 991 women who were scheduled to have a lumpectomy followed by radiation and whose sentinel lymph node biopsy identified a positive sentinel node. The women were randomly assigned to one of two groups. One group went on to have an axillary node dissection with removal of 10 or more additional lymph nodes (the standard of care). The other group had no additional lymph nodes removed. Both groups of women had radiation therapy to their breasts and axilla. The researchers then followed the women to see whether those who had limited surgery had a greater chance of local recurrence.

After six years of follow up, the researchers found that, as a group, the women who had no additional surgery did the same as the women who had gone on to have the additional lymph nodes removed. Specifically, the five-year overall survival rate in patients undergoing axillary lymph node dissection was 91.9 percent compared to 92.5 percent for those who only had a sentinel node biopsy. Disease-free survival was 82.2 percent among the women who had the axillary lymph node dissection compared with 83.8 percent for the women who did not. The rate of local/regional recurrence was 4.3 percent among women who had an axillary lymph node dissection and 3.4 percent among those who had only the sentinel node biopsy. None of these differences was statistically significant.

Currently, many surgeons routinely do an axillary node dissection in women who have a sentinel node that tests positive for cancer cells. While these results are very encouraging not enough women were enrolled in the study to make it definitive. However, it is the largest study of this type done to date, and it's important because it suggests that this additional surgery may not be necessary. And not doing the additional surgery would mean there were fewer women who were at risk of going on to develop lymphedema, numbness in the arm, and other side effects.

Is an axillary lymph node dissection ever necessary? It may still be needed if a woman has nodes that are palpable, a very large cancer, or a lymph node that is obviously positive. Nonetheless, this is one more study showing that more is not always better in treating breast cancer. 

http://www.dslrf.org/breastcancer/content.asp?CATID=0&L2=3&L3=5&L4=0&PID=&sid=130&cid=1979

Which makes me wonder if removing ANY of them is necessary, since current thinking is that by the time of detection any metastasis -- if it's going to happen -- has probably already done so in most cases. 

Anyway,here's wishing you the best of luck with everything.

ruthbru

If they find cancer in the lymph nodes, then you are going to need a much more agressive treatment plan to make sure any cancer cells out there are KILLED. They do need to know what is going on with the nodes so that you are neither overtreated nor undertreated.

Christine5

I had 13 on the right- my bc side and three on the left. Developed lymphadema immediately on the right. I also had cording within a few days of my surgery. Just got fitted today for a compression bra and waiting on my sleeves and gauntlets.

elmcity69

I had 15 nodes and have had lymphedema on and off...has worsened a bit last month, which i attribute to a 6 week ban on yoga and weights after a preventive MX (original MX 10/09). now that i'm back on yoga, etc, it is improving.

the lymphedema therapist i saw last summer during my radiation tx - which definitely made my arm swell more-- said i had very little, considering the number of nodes. 

haven't flown again since the original mx, and try to think ahead about cautionary measures when i do. might be heading to Vienna next year.

anyway, good luck to you. the node dissection/extraction is clearly controversial, but there is solid reasoning behind it. i think a good surgeon will proceed with caution and be mindful of taking unnecessary numbers.

j

kira66715

And--very important post op:

Do not stretch overhead for the first 10-14 days. The delicate lymphatics are trying to heal and reconnect, and stretch can cause seroma and not allow them to heal.

Jodi Winicour PT from Klose training has solid evidence for why you shouldn't stretch or lift your arm above shoulder height for 10-14 days post op.

I'm a cautionary tale: Like lunakin, I stretched like crazy, got a huge seroma and tons of axillary web and got LE in the third post op week. I had no post op instructions, so I just did what I thought I should do. In retrospect, it was wrong. Binney's first surgeon also told her not to use the shoulder at all for the first 10-14 days and she healed ver well. It was the second surgery that set her off.

Pil: wishing you healing hands and comfort in your decisions.

Kira

KS1

Kira - Just 2 years ago at one of the top cancer centers, I was told by my BS to start vigorous over the head stretching and exercising within 24 hours of my lumpectomy + SNB, and within 36 hours hours of ALND because doing so promoted healing. I was told to load up on pain killers if I needed to, but to do the stretching and exercises. Being a good patient, I did just that. With the first surgery, I had terrible axillary web syndrome with the lumpectomy, and a huge seroma (150 ml) that had to be drained repeatedly. With the ALND + reexcision, the AWS got worse, the skin split open and the drain failed. So much for being a good patient. KS1

Omaz

I agree that the stretching and exercise exacerbated my issues as well!  Someone needs to do a study on this, ie, what is the best way to reintroduce exercise and stretching after treatment.

kira66715

Omaz, Jodi sent me a few studies, let me see if I referenced them:

From the Essential Page on StepupSpeakout, there are links:

Peri-operative and Post-operative Management:

--Handle the tissues gently during surgery: Janice Cormier, M.D., NLN lecture 2010, Physicians' Intensive

Lecture slide: Critical Surgical Technique 1) Gentle handling of tissues, 2) Orientation of incisions (extremities) and 3) Hemostatic control at time of surgery

--Treat seromas promptly: from San Antonio Breast Conference 2010, "Seroma usually leads to prolonged wound healing, tissue inflammation and subsequent fibrosis and necrosis. It has been hypothesized that seroma formation is one of the main risk factors for post-breast cancer lymphedema." Seroma Formation Is Associated with Lymphedema-Related Symptoms.
http://www.abstracts2view.com/sabcs10/view.php?nu=SABCS10L_478

---Consider limiting stretch on the axillary area for 10-14 days post-operatively, as lymphatics have limited time to regenerate: NLN Conference Lecture, 2010, Jodi Winicour PT

From Foldi Textbook of Lymphology: Lymphatic regeneration occurs as the stumps of the afferent or efferent collectors of a removed node connect as the result of proliferation of the endothelium at the terminal portion of the damaged vessel. Regeneration of superficial vessels in dogs takes 4 days, and deep vessels in 8 days.

Have your patients limit their arm movement to shoulder height for the first 10-14 days post-op-to allow the efferent and afferent vessels to connect during the limited time of lymphatic regeneration.

Systematic review of early vs. delayed exercise has shown delayed exercise decreases seroma formation: http://www.ncbi.nlm.nih.gov/pubmed/15830140

A study in 2008, published in Physiotherapy, showed higher risk of development of lymphedema in women who had axillary node dissection and performed early vs. delayed exercise: http://www.lymphoedemaleeds.co.uk/Pages/Research.aspx

---Axillary Web Syndrome is a risk factor for lymphedema: In a study of early PT to minimize lymphedema, a subset of patients who developed axillary web syndrome at 3-4 weeks post-op had an almost universal development of lymphedema, despite intervention http://www.ncbi.nlm.nih.gov/pubmed/20068255

BMJ. 2010; 340: b5396. Published online 2010 January 12. "We also found that 12 of the 18 women who developed secondary lymphoedema had axillary web syndrome during the second and third week after surgery. The axillary web syndrome is a known but poorly studied complication of surgery. No study has shown any link between the axillary web syndrome and the onset of secondary lymphoedema. We and others suggest that the axillary web syndrome may be a sign of injury to the lymphatic system and it could produce a lymphatic overload as a result of failure of the lymphatic system. This overload, together with other factors, could be responsible for the onset of secondary lymphoedema"

Learn about axillary web syndrome: http://www.stepup-speakout.org/Cording_and_Axillary_Web_Syndrome.htm

Here's the link to the page:

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

On the page, the articles are linked. The studies are out there, but no one is reading them...

Kira

Omaz

Thanks Kira - I'll look through them!

Binney4

Pil, how are you?!! Thinking of you today and hoping you're finding some peace as you settle your decisions for tomorrow. Tell us how we can help.

Gentle hugs,
Binney

Member_of_the_Club

pil, keep in mind that by posting here you will have responses skewed toward those of us who got lymphedema.

I had 17 nodes removed and developed mild LE 4.5 years later.  I run and lift hand weights (wearing my compression sleeve and glove, of course). 

dogsandjogs

I had 17 nodes removed during a mastectomy 28 years ago. Absolutely NO lymphedema. In fact the subject didn't even come up. This time I had a lumpectomy with only the sentinel node removed. No LE either. 

I am very active and I think that makes a difference - use my arms a lot in jogging, walking my dogs, weight training etc.

hymil

Yeah, I was too keen to get mobilised too, needing to self-care as I live alone, and very aware for the need to be able to "do the position"    for radiotherapy. They said to pile on the painkillers and get on with it...  Isn't hindsight a wonderful thing. So pil, go very gently post-op and let time do its healing. But like others have said above, pil, do think about treating and beating cancer before you worry about side effects. Good luck.

duckyb1

Pil..........you remember me, I'm the one who is going to come in the night, and snatch your baby........Hahahahaha.

Please Pil so whatever it takes to save your life...............I had SNB, but the dye didn't take, so my surgeon removed........8.nodes...............all were negative.............I did get LE, mild, not really bad.   I hate it, but I hated having cancer more, and the thought of it coming back.

I saw a Board Certified LE specialist last week, and will begin with her next week.  She told me this is not the end of the world, caught early it can be controlled.................I am on my final 11 Rad treatments, and have had just a minor rash, and I am having 33 treatments.

My surgery was nothing to even talk about, and my recovery was a couple days, the biggest pain in the ass was the drain, and even that was not bad...............My only fear is the hormone drug they want to put me on.............and possibly I may do well on that, but time will tell.

Please do whatever you can take all the treatment they tell you, that you need............your life is in your hands............Don't let fear stop you from doing what it takes to survive.......Good luck whatever your choices are, but truely don't turn away from LIFE......hugs.

LtotheK

It was my PT who told me there isn't a proven relationship between web syndrome and LE.

Weirdly, mine started during radiation, nearly four months after surgery, not directly after surgery.

I am curious about all of this.  First, my understanding was scientists actually are not completely sure what AWS is.  Also, whatever this AWS is, I have, and always have had, what seemed to me to be tendons, not veins, and it was this that flared up on my left side.

In any case, I have not developed LE yet.  Doesn't mean I won't, that is for sure, but I'd like to keep the faith.  This has all been too hard.

Chocolaterocks

hi I had 2 lymph nodes removed and have not developed le at this time. The scar is 2 inches, and I still feel pain / stretching when I lift my arm from either the masectomy or from the lymph node removal. I did have a dozen pt visits with a great lymphodema specialist which may be the key to preventing le and I started 2 weeks after surgery.

good luck

chocolate

Binney4

Pil, hugs and prayers for a safe journey today!
Binney

yizbieta

Ihad three lymph nodes removed and have 'cording' that is getting worse. My doctor told me to do my own exercises for it on the wall at home- both straight up and to the side. She has not mentioned therapy. Wonder if I should request or just try to make this work at home. It is starting to creep down my arm more, from my armpit and it hurts at my elbow. Hard to reach for anything, string looking thing in my armpit when I reach out or life my arm. Very painful.

Any suggestions?