Is it now possible to refuse removal of nodes?

Ask about Axillary Reverse Mapping or Reverse Arm Mapping.  Basically, they put a dye in your arm that makes all of the arm lymph nodes in your armpit turn blue.  When they go in for the surgery, they don't take the arm lymph nodes  because they can distinguish them from the breast lymph nodes.  It's a new procedure, so there aren't any long term studies, but preliminary follow-up reports have been VERY promising.  

... I wish I had refused removal of my nodes... They did all come back clear after chemo - but did show changes from the chemo where cancer had been. Who knows... maybe I wouldn't have lymphedema today... or maybe I still would from rads... Could have, should have, would have: the three worst phrases in the English language because you can't change the past!

The recent study that has everyone talking about "don't need to remove nodes, won't get LE" is only one study.

Some things that need to be pointed out - the study concluded that survival was not affected. It didn't say whether more women got mets without the node removal. Since it was (I think) 5 year survival that's an important distinction. It also said that it was only women with a small tumor and whose nodes appeared clear .And the most important - it assumed that the women who didn't have nodes removed did have rads. Rads also increases the risk for LE.

Leah

Rianne, this study is not saying that an SNB is not necessary. Although the wording in the article isn't overly clear, I believe that this study is talking about women who had a SNB and were found to have positive nodes.  Here is a quote from the article; I have italicized the words that lead me to conclude that an SNB was done:

"After the initial node biopsy, the women were assigned at random to have 10 or more additional nodes removed, or to leave the nodes alone. In 27 percent of the women who had additional nodes removed, those nodes were cancerous. But over time, the two groups had no difference in survival: more than 90 percent survived at least five years."

The women in this study all had relatively small (<2cm) tumors.  Each woman had 1-2 nodes that were tested and were found to be positive, and as a result, all the women were given chemo. Therefore what the study seems to be saying is that if you are going to get chemo, then taking out additional nodes isn't necessary.  But to find out if you need chemo, you still may need to have the SNB.  If you are going to get chemo regardless of your nodal status, then perhaps you can forgo even the SNB (but that conclusion is a bit of a stretch).

If it appears that you may not require chemo, then having an SNB remains critical to determine if there is any spread of the disease into the nodes, in which case chemo would be required.

I think the study is good news in that it suggests that a full axillary dissection may not be necessary for those who have a positive SNB but have smaller tumors (again, assuming that they will be getting chemo).  But, as Leah pointed out, this is just one study, and at this point it measures only 5 year survival rates.  The fact is that for those with early stage BC, 5 year survival rates are high and one would hardly expect to find a significant difference in survival at the 5 year mark. We can hope that the "no difference in survival" continues to hold after 10 years or 15 years but at this point we just don't know this.   

 

I have mild LE in one arm ( 10 level 1 nodes removed). The other arm (4 SNB nodes) seems to be fine so far.

They have no way of really know who will get it. They say women who are heavy are at higher risk. I'm not heavy but I did get it. You are also at risk even with a MX or radiation to the nodes.

I do not let them stick either arm. I've had IV's in my foot as well as dye injected for CTs in my foot. Right now I still have my port from chemo so that's where they take the blood. In the future they will be taking from my foot. Don't let them tell you it's OK. You need to insist. Some places just like to do what's easier for them.  I find getting stuck in the foot no difference from in the arm as far as pain.

Risk: the numbers are all over the place. I think it's difficult to know because some women get LE 20 years later. I was told my risk was low yet I got it very soon after I started chemo (few months after surgery). Granted it is mild. It is much better now but here is a picture of what it was when I reported it: photo link Now you can see viens and tendons in both arms.

Risk reduction link   

My case is mild. I wear my sleeve at least 6 hours a day and while exercising. I feel that once the chemo is out of my system it should get better. I am retaining lots of fluid and my finger nail beds are a mess. I believe (as well as my PE and LE MD) that this could be aggravating it. I only saw the PE for a couple of months.

You will be able to dance and lift weights but gradually get back into it. There may be a limit as to how much weight you should lift but check with your MD. You might want to wear a sleeve when you work out. The studies from the recent San Antonio conference actually support weight lifting as prevention. 

I would ask to see a LE PE and have your arms measured before your MX. At that time s/he can give you all kinds of good advise regarding exercise and weight lifting.

I should also add that when I declined further lymph node disection, the radiation oncologist had to adjust his radiation plan so that the treatment would be more aggressive.  I was also told that if cancer were to reoccur in the future in the lymph nodes treated by radiation, the scars from the radiation would make the surgery and recovery more difficult.

Lianne, not to freak you out, but to be honest, even with a sleeve on, I swell when I am active.

Now I have had a really atypical presentation, and I am re starting LE therapy, but I am mostly fine except when I dance or exercise or walk a lot. So it does make me re think doing almost everything.

 And yes, if I knew for sure that rads=LE and I could have avoided it with a mast, just maybe I would have gone that way. Hard to know though. With my body type it would have been really hard to match a uni. Even with a reduction I am still DD..I would have needed one humongous implant or foobie,

Here's the thing, at the end of the day my disection did not effect what treatment I chose. I wonder could I have just had the tumor out, done the oncotype, and gone from there. Turns out I had one pos node and declined chemo. Once I knew my one node was positive, I kind of needed to know that my others were clear.

On the other hand I highly suspect it was rads that did this more than 8 nodes out, and my PS agrees. (Heck my BS seems to regard LE like its snuffleupagus, and he can't see it).

So here is the problem, most of these <2cm tumor ladies will probably have lumpectomy+rads, so it's really hard to gauge if skipping the disection will spare them LE if they have rads.

Someone mentioned the mapping they can now do to figure out which nodes to radiate, there was a study at Mayo. That sounds like an excellent excellent idea.

Cookie - You are so sweet. And I am in agreement and truly believe that rads sent me over the edge as far as lymphedema. In fact my arm was great after surgery, but started feeling heavy during rads.

Rianne- I am in agreement for exercising with a sleeve... or atleast start very slowly and see how you do, then go from there. I didn't have a real flare of LE until I took a step class one day without a sleeve... My hand and forearm got full of fluid - and I had never had it there prior to that day (it had always been in my upper arm). And on the note of exercising... LE has not stopped me. The only thing that I don't do is carry a heavy pack for hiking - so no long hikes into the wilderness carrying food for several days for me. I DO still carry my daughter on my back when going hiking but now use a glove in addition to my sleeve and a walking stick to keep my hand/arm elevated. Other than that, I am just as active as before... maybe more so. Last summer, I participated in 3 triathlons, 3 century bike rides (100 miles) and a half marathon. In my honest opinion, with a little compromise (like a sleeve, maybe some extra MLD and elevation) there is nothing you can't do. Everytime I do one of those long rides, my arm gets a little bigger. But I love it, so I refuse to stop. I just buck it up and take some extra steps in the day of and a couple days after the ride to get back to where my arm normally is. And I do wear most anything I want with the exception of shirts that have super tight long sleeves!

Also - I think I mentioned it on one of the other threads, but many LE professionals feel that in addition to the treatment (surgery and rads) that some women are predisposed to LE. My LE therapist used to have a questionaire and could pretty much foresee who would end up with LE  by which questions they responded positively to. I think the list included things like edema with pregnancy, hemorrhoids, vericose veins, pre-eclampsia, extreme swelling of hands and fingers in the heat, etc. She wanted the docs to send the patients to her PRE surgically so that she could evaluate their risk and make sure they were well educated in reducing the occurance of LE. But neither the docs nor the insurance companies felt it was necessary... so it never came to fruition. Very disappointing! 

Nordy and others, Hello! I only had 3 removed (1 sentinel and 2 others close by - which makes me crazy now). I was told I would not get LE with so few removed. Well, My arm is pretty good, though I do wear a sleve for exercise for sure, but I am bothered all the time by trunctal LE. If I routinely do weight machines, it seems to stay under control.

I would have loved to be evauated PRE surgery. edema in pregnancy, hemorrhoids. If this was known, maybe she would have only taken one. All were clear. It KILLS ME to think I had healthy nodes removed and now have to deal with this.

I look forward to a day that they don't take nodes as a matter of course. I used to think, or only take nodes if they have cancer. But after skimming that article, it seems like maybe soon it will be a thing of the past? 

Rianne, let us know what you decide to do... 

I used this study back in Sept/Oct to refuse Axilla dissection because nothing about my treatment would change if there was cancer in 1 or 10.  (I was getting chemo and Rads if it was in my SNs).  I only consented to a SN biopsy which entailed 4 nodes (all positive).

That was enough to stage me (for what that's worth), and the lifetime risk of LE to radiated lymphs is 5% (per Radiation Onc) as opposed to 40-70% with complete removal ten years out. 

Another reason I refused axilla dissection is because it isn't WORTH it imo.  If cancer could only spread via the lymphatic system, I'd be on board...but it's not.  So I am going to get LE for what?  Half a guess?  I can't tell you how many women I've met who have mets now (along with LE), that had CLEAR axilla lymphs...I'd rather keep the use of my arm, and my QOL as much as possible.

I questioned it before the study so was really happy when it came out.  There are also studies that show survival/recurrence is not statistically significant between women who leave nodes with cancer (and treat with Rads/Chemo) and those that have them removed.

Day,

I was given several studies by my Rad Onc. for this and some other things at the beginning of treatment, on top of what I found on my own, but as I've finished each part of treatment, I put those away and start researching the new leg of the journey.  Now of course I can't find anything, but I'm not looking overly hard either.  You can google scholar this topic and read for yourself.  Rads has a much lower risk of LE than axilla dissection.

I do remember the 5% though, because I had to literally fight (have 3 meetings) with my surgeon to keep him from touching my axilla...finally he READ the studies I gave him, and he agreed Rads was a much much lower risk.

A woman in my cancer center refused to let them remove ANY of her lymphs..and she had a 5mm tumor, triple pos.  She had the MX, and they used a fine needle to sample 4 of her SNs.  It was in all of them.  Her surgeon never recommended taking them out.  She is a week behind me in treatment and has all her lymphs.

Springtime my BS took 4 nodes for the sentinel node biopsy on the right. Sometimes they don't have a choice. They are clumped together. My BS told me all 4 lit up. Sentinel node biopsy can be anywhere from 1-4 nodes.

TonLee, that is weird.

My BS has shown me studies that showed the opposite (a few done by himself). You can google William Dooley, he is pretty much one of the "big guys" out there when it comes to breast cancer (used to be the Director of the Breast Cancer Center of John Hopkins and now is the Director of the Breast Cancer Center of OU), has developed a diagnostic method and now is in trials for a breast-conserving micro-wave treatment.

Here's his CV:

http://www.ouhsc.edu/surgery/Faculty/CV/DooleyCV_2008.pdf 

I have to confess that for me he's something close to a God lol.

He was the one that fought nail and tooth for me not to have radiation so I wouldnt' have very high risk of lymphedema. Maybe it's also depending on WHERE they are doing the radiation?