Lymph Node Removal Decisions

I had neoadjuvant chemo. I had a lymph node that tested positive for cancer before chemo. I agreed to participate in a study that was comparing leaving the lymph nodes in and radiating them vs. doing a full dissection but to participate they first would do a sentinel lymph node dissection and test it for cancer. To be part of the study cancer had to still show in the lymph nodes and for me I no longer showed cancer in my lymph nodes so I wasn't accepted in the study. I had talked to my doctor before hand and had asked that if no cancer showed in the SLNB that she not do a full axillary lymph node dissection. This was somewhat non standard because my nodes had tested positive before chemo, but she agreed to it. I also had standard radiation to my armpit after surgery. She took 3 nodes and none showed any cancer. One of the nodes was the one that had been biopsied before chemo, which they knew because they had placed a titanium marker when they did the biopsy.

Viceroy,

Wish they'd placed a titanium marker in my lymph node! Could have saved some of the missing 20. But, I was told that they don't do that when they use a fine needle biopsy to diagnose.

Glad to hear that you were able to avoid ALND!

Hi, Sugar Cakes -

The short answer to your last question is that radiation is standard with lumpectomy. It's almost always done as well when ALND is done, which is something of a double whammy where lymphedema is concerned.

I had one known malignant node at dx. - it was seen on the same mammogram that spotted my (nearby) tumor, on ultrasound, and then was biopsied and found involved.

I am doing a 6-month neoadjuvant trial of Femara (an aromatose inhibitor) to see if we can lower my Ki-67 (it did) and clear the node. We put a marker in the node so that the right one can be removed. I had an ultrasound in Feb. and the report shows the node looking technically normal. It's no longer palpable, either. Both are really good signs.

I'll have a radioisotope injected prior to lumpectomy so that the sentinel node can be positively IDed. My surgeon will remove the sentinel node and, if different, the node with the marker. A frozen section pathology check will be done during surgery to see if they are clear. If so, she won't take out any others.

The plan is that if they have only minimal involvement she will make a decision as to whether to remove the rest of them or not. If she does remove them, she will first map the nodes that drain the arm in order to help avoid lymphedema. I still have heebie jeebies at the thought of removing the rest of the nodes and I MAY not consent to that last part.

You could ask your surgeon or oncologist about the possibility of placing a marker in your node soon so that it can be followed as you go through chemo. Then at surgery your surgeon could do something similar to my plan.

Remember, you don't have to consent to any aspect of treatment that you're not o.k. with. You can refuse to sign the consent for ALND or cross it off (and initial it) the consent form if it's presented as a package deal.

In your case, I think an ultrasound after you finish chemo would be a really good idea; you don't want to leave grossly malignant nodes in your axilla and it sounds as though you have several of concern. Getting a look at them after chemo might give you some guidance on which way to go.

Just remember that there are NO perfect decisions in this process. There are risks and downsides to ALL the options and no guarantees of success with ANY of the treatment options. So sometimes you have to do a lot of reading, a lot of asking, a lot of praying and then go with your instinct.

I am so sorry you're going through this. I really do know how horrible it is to be facing ALND. Two other surgeons told me there was NO alternative. When the 3rd one offered me this option, I felt as though I'd been thrown a life saver.

Good luck with all of it. PM me if you have any specific questions. Take care.

At diagnosis, I had 3 lymph nodes that were kind of clumped/matted together that showed on MRI. I had biopsy with clip placement. I had neo-adjuvent chemo and afterward the MRI seemed to show that the nodes looked more normal (and my breast tumor shrank down by half). During surgery, it appeared that the 3 lymph nodes still had some cancer in them and all were removed. No other nodes were removed at the time. I will be having radiation. I have been reading a lot about it since surgery and it sounds like radiation/surgery to remove more nodes have similar outcomes as far as recurrence but the risk of lymphedema is higher with surgery. I had some removed so I think I will still be at risk and I plan to watch closely. IT is really hard to decide what to do sometimes, isn't it?

In March 2011 I was stage 3.

I had a lumpectomy, and 2 and out 3 nodes with cancer. IDC with the tumor 6 cm.The nodes had extracapsular extension. I then had chemo AC 4 rounds and Taxol.I had radiation 30x. Six months later I decided on the bilateral mastectomy because they felt I had positive margins.They took 1 more node on the cancer side and it was negative.

There was quite an argument about doing the ALND but I refused. You may wish to read the Z-11 study. The results were just coming out as I was being treated.My tumor is much larger but I just felt that my life is way too physical for me to deal with lymphedema and I was already not recovering well with just a few nodes out. Ironically it all cleared up when I started cross country skiing 3x a week during radiation and resumed daily exercise. Still, I really felt the radiation and the boost should be enough. I just hit 4 years and I exercise vigourously every day and feel great.

I question what quality of life I would have had with all the nodes removed. How much exercise could I have done and since exercise is a key to survival.... My oncologist felt the radiation should be enough.

The Z-11 study was ground-breaking and you may already have read it.If not here is the link. It was done by Giuliano

http://www.ncbi.nlm.nih.gov/pubmed/21304082

Best of luck with your decision.

I had a eecurrance in ONE lymph node. While it's not common, (I had no lymph node involement the first time) it happened to me.

For me, the surgery details did not firm up until I was done with with chemo. I had the same fear as you about the trial, but decided that it was the best way to go. Many people end up not qualifying for the trial because their lymph node responded to the neoadjuvant care, which is what happened with me. I still had standard radiation over the site. It was much more of a relief to know for sure that the nodes had cleared up rather than leaving in the sentinel nodes and never knowing for sure. At my hospital they also do a LE study along with this one so you would be observed for LE no matter which arm of the trial you were in.

sugarcakes....I so can identify with what you are going through trying to make the right decision. I too neoadjuvant chemo. I had 3 nodes lite up on MRI before chemo so they told me from the onset I would be having surgery, chemo and radiation. I chose neoadjuvant for 2 reasons - the dedicated breats surgeon at my hospital was on leave for several weeks and I did not want to wait. Plus I thought it made sense to know whether or not the Cancer even responded to chemo. My hospital,still only had general surgeons available to perform my surgery and they said that the "standard of care" (despite recent studies with neoadjuvant patients with positive nodes ) was to do the full ALND. I wasn't comfortable with this as my only option so I went to see 2 other surgeons (breast surgeons) both of who felt strongly there was not a need to decide on the full ALND prior to surgery. Mine removed the sentinel nodes - 3 out of 4 tested still positive in the OR so she then went and took all of my nodes at level 1. Since none of the level 1 nodes tested positive she stopped and did not remove any at level 2. She said that the chances of there being any Cancer at the level 2 area was very remote and since I would be getting radiation there was no need to go further. So far no problems with lymphadema. Of course my MO and even the RO both felt it still would have been better to at least go,to level 2, but my RO finally agreed that the chances are very remote that there would have been any Cancer found at level 2. Of course the weeks leading up to my surgeon was so stressful. I could not sleep and was sick to my stomach wondering whose judgement and recommendation to believe and take. I vacillated back and forth and read probably way too many studies. In the end I decided to go with my surgeons advice and now will just have to hope and pray it was the right decision. But either way - I was never guaranteed anything. No one can say with certainty that if we chose one option versus another option that we will never get BC again. You have to finally come to the place where you make the best decision for you and then NEVER EVER blame yourself for anything that happens (or may happen) in the future. You make the best decision at the time with the info you have and then move forward. Thinking of you and sending hugs. Candy

According to what I was told (and have read) - neoadjuvant chemo is done before the primary TX (surgery) and adjuvant is done after the primary TX. So TX after surgery is adjuvant. Both neoadjuvant chemo and adjuvant chemo are possible. Rads and hormone therapy can also be done neoadjuvant and/or adjuvant.

There may be 'usual' time between different TXs with different types of BC but nothing is 'set in stone'. We are each unique and not all Drs think exactly the same. My UMX was exactly 2 weeks after last A/C and Taxol started exactly 3 weeks after UMX. Rads started exactly 1 week after last Taxol. Femara started exactly a week after starting Rads. That is not the 'usual' TX plan (according to ones here) but was mine and it worked great for me. Is it what all should do? Of course not! There is no 'One Size Fits All'.

Noor46, I think that is so smart. Lymphedema is such a pain, it has changed so many aspects of my life