Refusing Axillary Dissection: what is proper legal paperwork?

Yes, I understand that chest/axillary nodes are not stage IV.Imaging shows more than nodes. The trachea is involved and they are unable to biopsy.

C

A "trachea thing" suggests lymph nodes in the upper chest and neck could be involved.  I think it would be a strange, and very wrong, thing for a doctor to limit tx based on assumptions alone.  I expect the doctor said something like "There is something in the area of the trachea lighting up on the PET scan.  It could be cancer but we don't know.  If it has spread to there it may be in other places and she could be stage IV." 

Very different statement from "She has cancer in her trachea and is stage IV and we now need to treat her as such."

Again, this discussion is based on a great lack of information and the belief that, not only is lymphedema likely with ALND, but also that it would be worse to deal with than removing the cancerous nodes.

Of course it is up to them what they want to do. I just worry that assumptions that are being made on less than pathological facts may cost this woman dearly. 

Clearly I have missed were his wife was actually declared stage IV.  I definitely understand the protocal for that stage, as I was considered a very possible IV from the get go due to chest node involvement.

I thought that it was only "suspected" that she may be stage IV AND that ALND would most likely result in lymphedema AND that that outcome would be tragic.

Obviously I have missed a post or misread the change since the first couple of posts by the op.  

The area of suspected mets, trachea, cannot be biopsied. Imaging is all they have to go on as is sometimes the case. This is also a recurrence. That's why he feels complete AND is not worth the risk of LE on top of mets. Truly, biopsies are sometimes not possible and you are dx with mets on the basis of imaging alone.

If they knew for sure that she was stage IV why would they do a mast?  This doesn't make sense to me.  Hmmm.

A lot of this doesn't make sense pip. First off, how could they know she is Stage IV? Apparently the trachea area, if it has mets, would not even make her Stage IV. No other areas have "lit up" on scans. I am baffled by this whole discussion.

And I m going to bow out as I feel uncomfortable discussing someone who rarely posts. We don't know these people nor undoubtably all the details. BTW, I had only one tiny area light up on my PET. The docs were pretty sure it wasn't a met, but it was. Number is not relevant.

Stormy, yes some doctor's do believe mx is appropriate for initial dx of stage IV but most still do not. I am glad that docs and researchers continue to evaluate their practice and explore changing tx protocol. C.

I had a bmx and 3 nodes removed. They turned out positive with extra-capsular involvement. My BS was frank and told me she didnt want to do the ALND but couldnt medically support that as being my best survival. The z0011 report just didnt apply to me.  I researched myself and it all came down in my mind to doing the alnd to prevent recurrence and mets. I am going in 2 days to do this because in my mind the more cancer that is left will only grow or spread.  I will be happy with my decision whether the nodes come back positive or neg. In my mind lymphedema wont kill me but this invasive lobular will. Also did I miss what type of cancer she has. lobular or ductal? Lobular hides really well. Didnt show up on my mammo that I had 6 months earlier. Hugs to all

I had AC x4 biweekly (dose dense) followed by Taxol x4 biweekly. I didn't find the AC bad at all. They gave me great drugs to ensure I had no nausea. The fatigue was bad but certainly doable. I worked every day throughout. The Adriamycin was a few large syringes pushed one right after the other. It took maybe 5 minutes to administer. The cytoxin was a slow drip over about 90-120 minutes. I've never heard of them being administered separately. But even if they could be, I would have opted to have them both at the same time. I did not enjoy hanging out at the cancer center. I wanted it over and done with as soon as possible. One tip....make sure your wife drinks lots of water the day before, day of, and day after AC. It helps get it out of your system faster. Also, I was given Emend for the primary nausea med. one pill on infusion day and two days following. I very rarely had to take anything else. However it's expensive. $700 for 3 pills. I hope your insurance will cover it. Good luck!

Sccs,

Good to hear how things are going and no need for thanks. Without people willing to listen and lend support, cancer would stink worse than it already does. I'm glad they were able to keep the node dissection to level 1 and, of course, I know you're well aware that LE risks till exist. I've never had chemo so can't help you there. My mets are being kept at bay by Arimidex and Aredia. Wishing you both the best.

Caryn

I read an information sheet on AC and it said the two drugs attack cancer cells in different ways and therefore are more effective when given together.

Whatever chemo your wife has, my advice would be to ask for the best side effect meds and take them "on schedule" rather than "as needed."  And if she still can't tolerate the side effects, there may be other options beside separating the drugs. With one of my chemo drugs (taxotere) the dose was reduced after the first cycle because of side effects (in my case, neurotoxicity). I don't know if dose reduction of AC is an effective option if necessary.

Best wishes to you both. 

I don't think you are crazy for doing everything you can to lower your LE risk. I have to say, I am constantly sad over the way LE has changed my life.

I am early stage so for me cancer was not the tragedy, LE is.