Paranoid about needlessly losing lymph nodes

Les ~

It depends on your initial findings but it seems protocol that surgeons perform the SNB and only remove the "hot spots" or main gateway if there is any "suspicion" my surgeon removed three and said I would most likely never have a problem w/ LE.  They used to remove them unnecessarily now thankfully due to the SNB prevents that. 

Surgeons only keep removing lymph nodes if they are positive until the "all clear" The SNB is done prior before your surgery and during the surgery the pathologist detects if there is cancer w/in the lymphatic system or not.

Make certain you ask about the SNB....

My Best to you and your surgery ask LOTS of questions and keep a list.

Much LUV

Downwinder ~

As Flalady stated...they don't just "stop" at the "hot spot" they do remove a few from both sides to make certain. Due to the SNB they don't just take it unnecessarily.

I want to clarify my post...My surgeon too was founder of this procedure...perhaps ((Fl.lady and I used the same ???Blumencranz ? ))

Make certain that this procedure is available first my best to you!

I had some sort of mapping done before my mastectomy. They injected radioactive isotopes around my nipple, 4 in all, and then the surgeon would be able to "map" the lymphatic system. I only had two nodes removed and both cancer free. i was peeing blue for 12 hours after surgery, kind of weird. My surgeon said this is the best way to map the path and to reduce the chance of taking too many nodes.

Hi thought I would add my 2 cents. My Sentinel node biopsy came back negative for both sides. During my mascectomy, my surgeon removed more nodes and found 3 positive out of 15.

The lymph system is so extensive that it is easy to miss the "one" node that can be positive.

LE is a valid concern and one that I have been fighting since my surgery. I opted for the most aggressive treatment I could get, I do not want to have any regrets.

Good luck on your journey - keep on the chat boards, they will keep you sane and you'll make some great friends!

Carolyn

Carolyn..what you wrote is what I fear. I had one node removed and it was negative. I didn't have rads to the axilliary and I do hope that no more were positive and we don't know. I'm over 2 and a half years past diagnosis and doing well. No LE, No nothing..and may it STAY THAT WAY!!!

By the way..I do wear a sleeve and gauntlet on plane rides and am careful what I do with affected side.

Carolyn..what you wrote is what I fear. I had one node removed and it was negative. I didn't have rads to the axilliary and I do hope that no more were positive and we don't know. I'm over 2 and a half years past diagnosis and doing well. No LE, No nothing..and may it STAY THAT WAY!!!

By the way..I do wear a sleeve and gauntlet on plane rides and am careful what I do with affected side.

Hi, Ravdeb,

No, I don't think the ARM will eliminate the SNB. They're two separate items. The ARM procedure allows the node(s) that drain the arm to be identified, so that no matter how many other nodes the surgeon removes, the crucial one(s) can be left. (The one study is trying to show that even if a positive node lies close to the arm-draining one, it doesn't mean the arm-draining one is positive, and it can be safely left.) Earlier they were assuming it was the NUMBER of nodes removed that made for LE worries, but now with more research and experience they're refining it to identify exactly WHICH node (or nodes) are crucial to preventing LE. The SNB will still track the spread of cancer, while the ARM is specifically for lowering LE risk by allowing the surgeon to see which node(s) are controlling the arm drainage.

And here's the best news: the reason this is such important research is that, with improved bc treatment, so many more of us are surviving long enough to worry about the long-term effects of LE. Yes!

Be well,

Binney 

I am 1 year post diagnosis and still regret that I consented to the axilla surgery. The SNB came back negative with some micrometasis (sp). All concerned w/ my care felt a full axilla was warranted. I gave in and 1 out of 17 nodes came back positive. Sitting on this end of treatment I would have refused the full axilla and let the chemo and radiation take care of any remainig bad guys.

That's just my opinion b/c I am obsessed about LE and really hate that I worry about overusing my arm all the time.

Just thought I would give you my experience.  I had a lumpectomy and sentinal node removed.   The sentinal node came back positive.  My surgeon recommended to go back and take more lymph nodes... I just had that done Thursday... he figured he would probably take 5or 6 as you have as many as 40 nodes.   I do have a drain, which he will remove tomorrow but I have full range with my arm and he felt that I should'nt have problems.   So the the sentinal node is the way to go and then decide if it does come back positive.  Good luck

I'm a very physically active person and was in the same situation.  When my sentinode came back positive I had 18 axillary nodes removed and all came back negative.  I had the drain under my arm and followed the instructions provided by my excellent surgeon.  I did the post surgery exercises when the painful cording was felt and so far have no problems.  There is minor numbness under the arm where the nerves were cut but I have no movement problems what so ever.  I'm back to lifting 50# feed bags and mucking stalls.  Actually I feel grooming my horses during recovery helped with the arm circulation and strength.

Downwinder,

You can assure that as few nodes as possible are removed during your surgery by refusing to consent to a full axillary dissection. The surgical consent form should indicate all the surgical procedures you're consenting to. For example - mastectomy or lumpectomy, sentinel node biopsy and if the possiblity of doing a full or partial axillary dissection has been discussed, then it should say something to the effect of " possible axillary clearance". If you want to avoid the possiblity of a full dissection should a positive sentinel node be found, then you as the patient have every right to refuse it.  if you see the possibility of a full dissection listed on your consent form when you go to sign it, simply cross it out and initial it. Be sure to tell the surgeon that you've done this if he's not already aware and also tell the nurses and the anesthesiologist when he/she comes to talk with you before the surgery begins. If you are willing to consent to node removal that is more extensive than just a SNB, but less than a full dissection, make that fact known by entering it onto the consent form yourself...and again, initial it and bring it to everyone's attention.

I did this with my own surgery. I told my surgeon that I would not consent to have any more than 1-3 nodes removed for the SNB procedure and that if a positive sentinel node was found (which in my case, was very unlikely anyway), he could take only up to 2 additional nodes, but ONLY if he could easily locate them. When the consent form was placed in from of me, it contained the possibility of  full axillary dissection - I crossed it out and make sure everyone knew I did not consent. I ended up with just a single node removed (which was negative) and that was the end of that.  

Hi ladies, I had some issues with my arm after surgery and had some "cording" under my arm. I went to Physical therapy for a while and it helped. I just take it easy and don't lift anything heavy

I have to pace myself and try to do things a little differently. I actually do not miss lugging all the groceries, laundry baskets etc. My kids have been great with some nagging lol

My housekeeping standards have dropped somewhat which is a shame because they weren't the best to begin with. I would just rather have fun with my family than be anal about dust.

Today my arm feels good, the numbness seems to have reduced somewhat and I make sure to stretch it every once in a while.

Have a great day

Carolyn 

My 2cents: I had a core biopsy before my mast/immed recon which showed non invasive, DCIS only. However, after the mast, the path came back as invasive. I didn't get the choice of a SNB because the mast was already done. So, I had to go back a month later and have a lymph node dissection, which took 18 nodes. I do have arm and breast and truncal LE daily. I'd fight for the SNB due to my situation if I had it to do over again...