lymph node surgery without confirmed diagnosis of ILC?

Many doctors routinely do the SNB (sentinel node biopsy) before they have pathology of invasive cancer. I don't have an answer for you, but can share some experiences to help as you weigh the pros/cons of the two approaches.

At my first surgery, the doctor suspected DCIS, so did a lumpectomy without SNB. This surgery required general anesthesia. Pathology diagnosed ILC and margins were close, so I had a second lumpectomy with a SNB. I actually recovered faster from the SNB+lumpectomy than from the lumpectomy-only. 

Whenever lymph nodes are removed, patient is at risk for lymphedema. My doctors tell me this is rare when only one or two sentinel nodes are removed. Risk increases when many lymph nodes are removed. But, this is a concern to discuss with  your doctor as part of your decision process.

Best of luck to you. I hope whichever procedure you choose goes well and pathology shows no invasive lobular carcinoma.   

Hi I'm sat at the computer trying to find some relief for the lymphedema I am suffering at having lymph node surgery. After op (all lymph nodes) I was realy well back to playing badminton 3 times a week. then had 3 week radiotherapy and have not been right since (18 monthes ago)

in constant pain have to have regular mld which I have to pay for myself as not recognised by the NHS but at least this gives a little relief

am now considering replacement lyph node surgery but am scared in case I end up worse off (lymphedema in leg)

so make what you will of this info and I wish you the very best good luck

Soop, I don't know who told you the NHS doesn't recognize lymphedema, because they do, but it doesn't sound like you're getting the kind of care you need and deserve. You might want to check with UKLymph for help in locating resources in your area:
http://www.uklymph.com/

Information about the treatment you should be receiving here:
http://www.stepup-speakout.org/treatments_for_lymphedema.htm
And here:
http://www.lymphnet.org
(see their Position Paper on diagnosis and treatment)

Hoping you get great care soon! Be well,
Binney

Confused, I hope you will think long & hard about this. SNB isn't a big deal to the surgeon but he doesn't have to live with the consequences. It still looks to me like an unnecessary surgery. Since you've said the lumpectomy wouldn't be under general anesthesia unless the SNB was done than you're not only risking LE but also any problems that can arise with the general anesthesia.

Also, a lot of surgeons and other docs minimize both the risk of LE and the problems that it causes. I have it and, even though mine is mild, take my word for it you don't want it.

Best of luck.

Leah

Completely understand your concerns, same as mine; however, after lumpectomy and SNBiopsy last Tuesday, completely agree with my surgeon who simply stated She would perform a lumpectomy only if I'd consent to the SNB at the same time.  At first I was a bit miffed, although when I realized for my day-before-surgery appointment to finalize procedures she mentioned her sensitivity to my concern about the SLBiopsy, and I felt much more comfortable going in.  Results:  tiny, half circle 2 1/2" clean lumpectomy scar @ 11:30 with an 8mm tumor removed; no ca cells in the lymph node biopsy; no pain post-op.   Glad I trusted my surgeon.  When everything is out of control (as it is with BC), we want the illusion of control anywhere we can get it.  I understand your concerns; however, I encourage you to gather your courage, take the hand of God, and jump off into the abyss of the unknown.  You too have promises to keep and miles to go (Robert Frost poem).  My arms are around you with a hug.