need an axillary dissection

Melmcbee, sorry it took so long to get back to you as you are working out some very, very crucial decisions

The latest thinking about ALND is based on on the Guiliano study, where women with T2 (up to 5 cm tumors) had 1-2 positive nodes, and had "standard" care, and survival was no different, if they had ALND or not.

You and your doctors will need to decide the best course of action to get local control of this beast disease: but three nodes with extracapsular extension wouldn't fit that study.

So, the question seems to be, surgery vs. radiation--and my question is, will they want to do radiation even if they do surgery? I've seen that be recommended (I used to work for a radiation oncologist, and saw all versions of treatment plans.)

There is one very good study that followed women with ALND for >20 years and most who developed lymphedema, got it in the first 5 years, but then about 1-2% a year followed, so at 20 years, about half the women had lymphedema (LE)--but that would mean half DIDN'T get it--so always remember the odds are in your favor.

At the breast cancer cancer where I was treated, they now have a high risk protocol, where women with ALND are sent to the LE therapists immediately, for baseline measurements, to learn manual lymphatic drainage, lymphedema risk reduction behaviors and, if appropriate, to get a compression sleeve/gauntlet to wear if they're very active or having symptoms (like aching, subtle swelling, heaviness, tightness)

Ways to avoid LE: 

post op--don't raise that arm for 10-14 days, to allow the lymphatic collectors to heal. I know the nodes will be gone, but not ever single one of them, and lymphatic collectors have a narrow window to heal--so don't raise that arm over shoulder height for 10-14 days. No hanging from door frames.

Request a referral to a qualified lymphedema therapist to learn manual lymphatic drainage--how to gently massage the skin, where the superficial lymphatics are, to move it along

http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

Lymphedema risk reduction behaviors--and sometimes you have to fight, like with blood draws and blood pressures, as there is a move to call them "myths"

http://www.stepup-speakout.org/riskreduction_for_lymphedema.htm

Here is the one from the National Lymphedema Network--we have an on-going fight with them, as they decided to not support compression garments on air flight, based on lousy studies, but women at risk need to know that air flight is a risk to trigger LE, and make a personal decision, and a low compression sleeve can be helpful

http://www.lymphnet.org/lymphedemaFAQs/positionPapers.htm

You will never be able to get accurate statistics on your risk of LE, as there is no single diagnostic criteria, and somewhere Carol posted the ranges that are cited. I'd say, somewhere like 40-50%, but some of us get it with three nodes out and plenty of women with ALND and radiation never get it--lymphatic systems vary from woman to woman and some women are blessed with robust lymphatic systems and others of us, just don't have it.

I think the key, as you face these really hard decisions, is to treat the breast cancer the best possible way, be aware of LE and LE risks and prevention, but realize the biggest risk is the nasty ILC, and you want that treated.

Sorry again for the delay. Please let me know if you need more information, and sending hugs and hopes for healing as you face this.

Kira

Melmcbee--when they radiate nodes, they have choices--like just the axillary, or add the supraclavicular. Discuss it carefully with your treating doctors.

Is that gorgeous girl in your avatar is your daughter?--what a sweetie.What a great look between the two of you.

Right now, it's such a tough time, a woman hear described it as "feeling as powerful as a leaf in the breeze"--hard decisions, treatment---please know we're here.

Kira