Refusing Axillary Dissection: what is proper legal paperwork?

there's been quite a lot of discussion about this of late.

here's a repost that you might find useful... 

my surgeon had said that i would have full alnd if the snb came back positive... but another friend of mine is wondering about these questions because she is a musician and very nervous about range of motion / lymphedema issues.....

Here's one paper that is relevant:

jco.ascopubs.org/content/29/34...

In conclusion, on the basis of the results of Z0011, a significant proportion of patients with one to two positive SLNs and BCS can safely forego ALND. The majority of these patients do not need to be subjected to the short-term and long-term morbidity of ALND. The multidisciplinary approach of adjuvant systemic therapy and WBRT is important in reducing the risk of locoregional recurrences. Until additional data are available, including analysis of the Z0011 radiation fields, it remains our policy to assess the risk of microscopic involvement in the regional nodes and to target nodes that are at significant risk in the radiation treatment plan. Table 1 summarizes a suggested approach for radiation field design. Using this approach, we will provide patients with excellent locoregional control and, in combination with surgery and adjuvant systemic therapy, optimize the patient's probability of cure. The data from Z0011 also give additional justification for the use of BCS for patients with positive SLNs. The potential for avoiding ALND, coupled with the high rates of locoregional control that are associated with BCS and WBRT, should make this approach more appealing than mastectomy for most patients. 

Later in that same paper:
The radiation oncologist, however, has historically relied on ALND findings in the design of the radiation treatment fields7; the number of positive nodes provides information concerning the risk of involvement of the level III/supraclavicular (SCV) nodes. When this risk is clinically relevant, radiation oncologists commonly treat the level III/SCV region with an SCV field.8 Typically this is used for patients with four or more positive nodes and selected patients with one to three positive nodes. With computed tomography–based planning, this involves contouring level I through III nodes, which ensures adequate radiation to the target nodes that are at risk. Although the combination of ALND and axillary radiation increases the risk of lymphedema,8,9 minimal morbidity is associated with radiation to the undissected level III/SCV region or to the undissected axilla.3,7


anyway, from this paper, it appears that the radiation treatment of the auxiliary nodes does not result in as high a risk of lymphadema, like radiation plus ALND does....and perhaps radiation can do the job....

definitely food for thought.

i feel so lucky that i did not have to face alnd... if i had to make a decision about it, and radiation could do the job, i would choose radiation over alnd, but only if radiation could indeed do the job.

best wishes...  i'm so sorry you two are dealing with this awful disease.

If you don't trust your surgeon, then find someone else...ask for references of other patients from your surgeon if need be.  A good Doctor will keep their word regardless of what is or is not on a piece of paper.  You have to have some comfort level that they will make the best choices available at the time.  If there is visible cancer, it needs to be removed.  Good Luck.  And, 1Athena1 is right.  Find out abt cancer first.  It's much more serious.  God Bless

Yes, I see that. But with or without insurance, their goals and energy have to be properly focused. There is a lot of strangeness about this situation. He said they had insurance but it wasn't accepted in some places. If it is accepted anywhere (which it is) then there must be a way by which his wife can get an exact status of cancer diagnosis. If it really is thought that his wife might have stage IV, then new avenues of assistance may well open up for them (including expedited SSDI and Medicare, importantly).

I almost wish this were in a different forum - like the "not diagned...but concerned", or even lymphedema (so that the sisters there can also tell them not to confuse the forest for the trees). Might get more responses of knowledgeable people (ie: not me) on both topics.

It doesn't really belong here and I am concerned that time is going by and these folks are going round in circles. Whatever they do decide to do is their own business - but they have to see the clear medical picture first and distinguish it from their feelings or surmises.

You may be right in that they are no longer reading. Insurance limitations place even more burdens on the patient to be judicious about what to focus on. No insurance status in the world would cause me to be concerned about the possibility of one illness while not knowling for certain about the existence of another, far more serious one.

(If they are still reading): she could try catholic charities and see if they will help re: tests to confirm staging. The American Cancer Society and others help people with insurance with copays and other things.

For more information on paying for care, this web site is as good as any other:

http://www.breastcancer.org/tips/paying/

Hope they do see that.

There is also an "insurance and financial issues" forum here.

2 hours ago J9W wrote:

"I don't really understand why they need the nodes? If they are planning to 'throw the kitchen sink' at you anyway, why not leave the nodes alone?"

J9W it is a matter of degree of known involvement.  As the recent medical literature indicates (See BikerLee's post above) patients with 1-2 nodes involved do not neccessarily benefit from ALND. With my first dx in 2000 I had micromets to 2 sentinel nodes and refused ALND since I was going to have chemo anyway.  My new primary in 2005 was a different situation with very locally advanced disease and total nodal involvement.  Each one of those 23 nodes removed were malignant tumor sites. I did not worry about LE at that point since my first goal was to reduce as much cancer load from my body as possible and hope to survive the disease itself. While radiation and chemo can be very effective, surgically removing known tumor sites also increases the odds of a successful outcome.  The combination of multiple treatment modalities gives the best results when you are dealing with a heavy cancer load.

As I have stated before, Lymphedema is certainly manageable and in no way do I regret making the decisions I did to treat my cancer aggressively. I too hope that the OP and his wife can make fighting the cancer their first priority. 

Note please, that the paper BikerLee posted and the other new information only applies to positive nodes found through SLN testing and not to positive nodes (usually larger) clinically evident beforehand. Big difference.

Why not do chemo first?  It's called neoadjuvant chemotherapy, and is quite common.

If you do that, you and your wife will see how her tumor responded to chemo.  If the chemo works on her specific pathology, then great - a SNB may be all you need to confirm that.  There may not even be any lump left to remove.  If it doesn't respond, then the only safe thing is to allow the surgeon to use his best professional judgement in how to proceed.

Let's be real here...lymphedema is inconvenient.  Cancer left behind in the lymph nodes can be fatal... is that really a gamble you and your wife are willing to take?

I didn't see that when I skimmed - thanks.  THen to me it's a no-brainer - either it worked or it didn't, and if it didn't, how could anyone consider leaving cancerous nodes to spread more?

I was Stage IV from the onset also. I did the neo-chemo and got great response. I also had tracheal involvement as well as lung and liver mets. I was insistent from the start there would be no axilla removal. I did have a BMX last Aug but no nodes were taken. I did have extensive talks with both the surgeon and onc and they agreed to my wishes. I had encounters with two people with bad LE in the chemo room and I said I would rather risk the cancer than be disabled from doing my job and the hobbies I love. It had already passed thru there so what was the point? They were not going to take out the lung and liver mets either-so again what was the point of risking it.

   They have never lit up on any subsequent PET-and I am contenet with my decision. As a Stage IV I think it is all about quality of life and without being able to do my job and garden and be active---that is NO quality to me. I also did Rads but didn;t allow them to do the axilla there either. Rads was totally an extra step-they tried to get me to say if I didn;t remove them I would allow them to radiate them but I stood my ground.

  Always a difficult decision but I don;t look back and regret any step i have taken.

SccS~ The surgical consent form will likely have a line that states the procedure that is being done.  Don't sign it until it reads the way you want it to.  Good Luck!

In Canada you are always given a consent form before surgery and on that form you can write whatever you feel is appropriate and THAT is legally binding. Don't know about U.S.

Unfortunately, scans and tests are not as accurate as you would like.  There are MANY of us here that had significantly more cancer than any of our pre surgery tests indicated.  I went into surgery dx by scans as a stage I.  Woke up being a stage II.  Pathology put me at stage III.  Lymphedema, as problematic as it is, is not the main concern here.

Cancer in the nodes of your chest and neck do not make stage IV. Otherwise, I too would be stage IV.

From my understanding, they have nothing to go on to say that she is stage IV and should therefore have a different tx plan.  These chest nodes are difficult to get to which is why they don't normally do surgery for them.  That is what the chemo and rads is for.   Unfortunately, the axillary nodes are a question until they get to the pathologist.  Niether should they eliminate tx decisions because they "think" she may be stage IV.  A lot us stage IIIs live on that edge.