Refusing Axillary Dissection: what is proper legal paperwork?

I have to agree with Caryn.  Most of us don't get lymphedma.  I would definitely be most concerned about leaving cancerous nodes.  

my surgeon only checked one node but I have lymphodemia in my trunck area and actually wondering if my recent biopsy may have meant it has moved into my arm

it happens

I had all mine removed and I've had no problem upto now but I do need rads. My onco said " do you want the best chance of living"

Hi, I was 43 when I had large lump in arm pit and no family history of cancer. They did the test for me and it came back at 99. 06% for me not having cancer.



They thought I was stage 4 because of the lymph nodes being so close to my neck. I had chemo first and had a complete response then lumpectomy. I need to have rads for three weeks and I have started Tamoxifen.



I didn't want all my nodes out or have rads but I'm glad I did because I'm doing fine.

If one of the lymph nodes spreads to anther part then that's not good. I would do anything to have time with my three girls and DH.



This s so hard but do everything you can now as we don't get second chances.

I'm going to step in here, although I am a relative newbie and not Stage IV. I think it is unconscionable that a surgeon would say your wife would likely get LE from an ALND. I had 21 nodes removed and my surgeon, a top rate breast surgeon at an NCI hospital, told us I had a 40% chance of LE. So far I am free of the condition. 

Also, you DO NOT know if your wife is Stage IV until that is confirmed by scans and/or biopsies. I am horrified that it seems her medical team is writing off aggressive treatment on the SUSPICION that she is Stage IV.

Sorry if I offend but this thread is making me really sad for your wife. :-( 

I also decided I didn't want any nodes removed. I met with the surgeon specifically to discuss it. We agreed that at stage IV there really is no reason to. She did it anyway. I was told it looked suspicious, so she decided to remove them. 4 out of the 11 removed were positive.

I'm stage IV. It has already spread. I still don't see the point in taking them out. If I get lymphodema I'm going to sue the crap out of her, or something. Maybe just yell real loud, I don't know. 

But anyway, make sure you are perfectly clear there are to be no nodes removed, even if they look like they should be removed. Get it in writing if that is what you really want. 

Hi,

Yes, I had only a level one dissection . None of the nodes was positive, only a sentinel node. Thank you for explaining your feelings about the medical profession. I am sorry that your experiences have been so negative. We really do see the world through the lens of our own experience. Caryn

Sccs, I told my BS that I only wanted a SNB after everything I read about ALND.  My original paperwork said "SNB with possible ALND."  I read that ALND would be overkill for me and increase my chances of lymphedema.  My BS said that my cancer was too close to my axillary region and that he wouldn't do a full ALND, but that he would take a few nodes besides the SN to be sure.

I was okay with that.  Turns out my SN was negative, but 2 other nodes were positive for micromets.  I almost wish I never knew about those micromets as I would not have done chemo.  Newer research says that micromets should be considered negative nodes.  I had 2 opinions and both MOs felt chemo was giving me a better chance.  I'm a bit paranoid too and almost think that those positive nodes could have been from the tissue getting mixed in.  I haven't seen many ladies with a negative SN, but with other nodes positive.  This was additional information I wish I didn't have in retrospect.  Since I did have the info and have young children, I felt I had to do the chemo.

Also, LE can happen anytime.  Right now I have breast swelling that appeared 3 months after radiation.  The PT says it's LE, but the BS says it may subside.  Right now it's annoying, uncomfortable and just one more thing to deal with.  I had hoped after all my treatments I could pick up the pieces and try to resume a normal life.  So even with only 6 nodes out LE can happen.  I was trying so hard to avoid chemo and LE and got stuck with chemo and maybe LE too.  These decisions are life changing and you are right to consider ever alternative.  Good luck with your decisions.

I had a level one AND and I don't regret it. I'm LE free. Who knows if that will change? But your wife's situation has me thinking. If she is stage IV, why would they want to remove more than level one? what would be the point? Have they described some benefit to you? I am certainly NOT a doctor but I understand your dilemma.

If I were in your shoes and I wanted to ensure that only level one was removed, i would make sure it was clear on the pre-surgery paperwork before I signed. If its not there, I would write it in myself and have both the surgeon and your wife initial the change and then sign. Good luck!

ali68,

Please read all of SccS's posts to understand his family's limits on choosing doctors. They have seen 2 other surgeons for second opinions.He is not writing his wife off at all!

SccS, I am sorry that you and your wife are having to go through this difficult time.  The central issue is that no one can give you any guarantees.  Your wife's outcomes, whether she will ever develop lymphedema or whether her cancer is fully curable, is an unknown at this point.  So yes, we try to play the odds by making the best decisions we can, based on current medical knowledge and often on our gut instincts.  Unfortunately, in the area of lymphedema the statistics are widely variable and poorly understood.  No one can tell you what will be your best choice, but we can all certainly understand the frustration, stress and anxiety these types of situations present.

I would like to offer you a few of my personal thoughts, hopefully to add another voice and perspective that might be helpful.  I ask your forgiveness in advance for the wordiness of my reply.  I have never been very good at being concise!

I have had 2 separate breast cancers.  The first in 2000 on the right side, an invasive Ductal cancer treated by lumpectomy, SNB (micromets found in 2 of the 7 nodes removed), chemotherapy x 6 months and radiation x 7 weeks. Five years later in late 2005 I was found to have a new primary breast cancer, unrelated to the first.  This time in the left breast, an invasive Lobular cancer and pre-surgical scans indicated the axillary nodes were most likely already involved.

At this point, given my prior history, I opted for bilateral mastectomy but discussed with my surgeon beforehand my desire to initially start with a SNB on the left, just in case the scans were wrong.  She agreed to do this, but we both agreed that if there was obvious nodal involvement she would continue to remove nodes based on their visual presentation and her experience at detecting abnormalities.  My goal was first to remove any sites of known cancer and second to minimize the collateral damage from the surgery.

As it turned out, the SNB nodes, the first level nodes, the second level nodes, and even the few 3rd level nodes my surgeon could safely remove were all positive.  All 23 nodes positive and many with extracapsular extension (meaning the nodes had already burst into the surrounding tissue due to the cancer cell growth).  When I was given this news post-operatively I was crushed, and later when all the final pathology reports confirmed the extensive local spread in the nodes, both I and my oncologist felt I was most likely already Stage IV.  My oncologist did not give up on me, however, but rather threw the proverbial "kitchen sink" at me.  I again went through a full 6 months of chemo, 6 weeks of 3-field radiation which blasted my chest wall, full axilla and supraclavicular region to hopefully kill any cancer in the local area. I had IV Zometa for 5 years and have been on Aromatase inhibitors now over 6 years.

Did I develop lymphedema? Yes, I did on the left side. In fact my lymphedema occurred 8 weeks after surgery and during my second round of chemo. I continued through my full rounds of chemo and my 6 weeks of intensive radiation with lymphedema already present and being dealt with.  I continue to deal daily with lymphedema. I have endeavored to fully educate myself on the subject and also attempt to contribute back to my local community by helping to run a lymphedema support group. My lymphedema on the left is stage 2, which requires compression garments 24/7 and daily maintenance.  I have just recently developed early stage lymphedema now on my right side after having to lift a heavy weight in an emergency situation.

All of this for me to make a few simple statements I hope you may find helpful.

• In spite of the advanced local spread of my disease, I am currently still NED (no evidence of disease) almost 7 years out from my diagnosis in November 2005 
• I have learned to live with lymphedema.  Is my life miserable because of this condition? Absolutely not. My life is full, active and not revolving only around cancer or lymphedema
• Is my cancer cured? That still is and always will be an unknown until it's not. In fact I get blood drawn today to repeat a tumor marker test that was ever so slightly elevated a month ago.
• Would I do things differently if given the chance?  No I would not.  I am at peace with my decisions, knowing I did the best I could with the information and understanding I was given at the time.

As with all life, once we make a decision and head down a particular path, we can never know how things might have been had our choice been different.  We really can never know for sure that our actual outcome was a direct result of the choices we made either. There is no question that some patients are over-treated and suffer adverse side-effects unnecessarily. Given that we must live with whatever decisions we make when surrounded by all this uncertainty, it is my opinion that there are 3 basic elements that must be present.

1. Surround yourself with the best medical professionals possible, given your insurance, financial and regional constraints.
2. Inform yourself and become an active participant in your treatment decisions, knowing it is your right to have your voice heard and your opinion respected.
3. Give yourself the grace and peace of mind, of knowing that you made your decisions to the best of your ability.

Please understand that your wife's own cancer presentation is unique and cannot be compared with others, even though we do often gain insight and information when reading personal experiences here on these forums.  I only hoped to offer the concept that whatever the outcome of our treatments, Life can still be productive, rewarding and precious to us.

SccS, I wish you and your wife the very best during this most difficult time.  I believe you have already accomplished steps 1 and 2. Take one day at a time...prepare to the best of your ability for the future...and cherish each moment you are given.

Hi. Likely you know this already from your research - but there are no guarantees to avoid lymphedema. Even if your wife had NO nodes removed. Lymphedema can occur just because of cancer messing with the lymphatics.