Did you have sentinel node or axilla dissection?

thinkpositive · 07-18-2015, 11:21 AM

Hello everybody,

For those of you who had NAC with confirmed lymph node involvement prior to treatment, I'm wondering if you had SNB or axilla node dissection at time of surgery. I had extensive node involvement prior to chemo. Thankfully, I responded well to treatment and no cancer was found on the MRI or PET/CT scan I had after chemo. As a result, I only had SNB at the time of my mastectomy. My surgeon said that I had a complete pathological response.

I have a friend who had almost the same diagnosis as I did and her surgeon told her that SNB after NAC show a high rate of false negatives. So her surgeon said that she will need to have axilla node dissection at the time of her surgery in order to determine if she had a complete pathological response. Since I am ER/PR negative, having a complete pathological response has a pretty significant impact on my prognosis.

Please chime in and let me know what your surgeon recommended.

Thanks,

Brenda

tricia keegan · 07-19-2015, 09:55 AM

Brenda I had an Axilla dissection at the time of my lumpectomy and had three positive, I think at the time it was just my surgeons choice and he preferred to do it that way, I had chemo afterwards so just had to hope I had had a good response. I'm ten years out now so assume I did, but I remember at the time reading that some surgeons choose the axilla over snb and its really just a personal choice but that may have changed over the years.

thinkpositive · 07-19-2015, 10:16 AM

Tricia,

Thanks for your response. I am beginning to think that it may just be what the surgeon prefers. Being ten years out must feel absolutely wonderful. Hope you have many, many more years!

Take care,
Brenda

Tankweti · 07-19-2015, 03:02 PM

I am in a somewhat different position. I have Stage I BC, triple positive. Went to first surgeon and she wanted an axillary dissection. I knew that this could cause lymphedema and said to myself, "What am I doing this for when I am Stage I?" Found another surgeon who informed me that that was the older way of doing things and that now they so axillary sampling, taking from 2 - 12 nodes. She only took 2 from me and both were negative. (Sorry about the bold - I can't seem to get it to shut off.) However, my cancer is earlier than most of you posting here. If the cancer is more advanced, it might be prudent to consider an axillary dissection. I posted this to let everyone know that axillary dissection appears to be the surgeon's choice and an older method, which may still be appropriate in some cases (if that isn't confusing enough).

linzer · 07-19-2015, 05:18 PM

I had axilla because there was involvement prior to chemo. The surgeon said the same thing about false negative and urged me to do the ALND... that said, I had 9 total nodes in level 1 and 2 and three had scar tissue. All of the nodes as well as my tumor had PcR... in hindsight, I would have preferred to not have them removed, but I get why she said I should. I think that as NAC becomes more common, there will be workarounds to prevent ALND. I'm 10 months out from surgery and have not developed lymphedema. I do have some cording and my hand swells a little bit after running or walking but nothing outrageous.

thinkpositive · 07-19-2015, 11:29 PM

Thanks for your responses.

Linzer- Did you have a PET/CT scan or any other tests after completing all your chemo to see how you had responded? I ask because my surgeon said that because my MRI and PET/CT scan done after chemo showed no remaining cancer she decided to do only SNB. I'm glad your doing well and having no real side effects from ALND.

tricia keegan · 07-20-2015, 10:32 AM

Thanks Brenda for your good wishes and I look forward to welcoming you to the ten year club one day too

Becky · 07-20-2015, 11:07 AM

I am almost at 11 years and then, they did snb but if they found a positive one, they did more so my snb was 3, all tiny but one was positive so they went back in 2 weeks later and took 7 more.

thinkpositive · 07-20-2015, 12:46 PM

Becky - thanks for your response. Glad that you are doing so well 11 yrs out. Must be a great feeling!!!

lkc Gumby · 07-20-2015, 12:51 PM

hi there brenda. I had a PET prior to my partial mastectomy. and SNB. i turned out to have 12 nodes positive, my axillary and sentinel nodes were extraencapsulated, none of my nodes showed up on my PET. which I found out is not unusual since "normal' node size is up to 2 cm.
anyway. I went back for a full mastectomy as i had extensive duct, lobe and nipple involvement, but no more nodes.
my med onc,surgical onc and even the tumor board agreed with the proposed plan.

that all was over 10 years and I am well, and doing the happy dance every day.

wishing you a gentle ride.

thinkpositive · 07-20-2015, 01:04 PM

Linda,

Thanks for your response. Since you were ER/PR negative you must be super happy to be 10 years out. My onc said that the risk of recurrance is high in the first 5 years but after that it drops way, way down. Glad you are doing so well.

My cancer did show up on the PET scan prior to treatment but nothing showed up after chemo. I'm just hoping that SNB showing I had a PcR at the time of my surgery wasn't a false negative. It seems that many other women had axillary nodes removed. I didn't. It kind of scares me.

Take Care & keep on with that happy dance!

lkc Gumby · 07-20-2015, 01:46 PM

Hi again brenda. And yes I am extremely happy. I think you'll be ok. Having a pcr is a very positive thing. Also you made the wise choice to remove both breasts.Look into some things you can do to reduce your chance of recurrence, reducing body fat, exercise, and healthy eating.
Also, I swear by flaxseed and evoo.
Before you know it.. You'll be way on the other side and bc will be a memory, and you'll be dancing too!

KathyT · 07-20-2015, 08:23 PM

I had 2 positive nodes prior to chemo, I had bilateral mastectomy and lymph node dissection(only took 3 lymph nodes) and they were all negative. I did not have pCR though

I had 4mm area in my breast post mastectomy but my lymph nodes were clean!!
Gotta look at the positive��
I had no scans after the chemo...had a pet scan this past April(finished Herceptin in Feb) and it was clear so as far as I know I am NED and celebrated my 1 year cancerversarry on July 10th!!

Best wishes,
Kathy

thinkpositive · 07-20-2015, 11:02 PM

Kathy,
Thanks for your response. Congrats on recent 1 year cancerversery. Hope you celebrate many, many more. When they removed the three nodes at the time of your mastectomy, were they sentinel nodes? I had four nodes removed but they were all sentinel nodes.

Take care,
Brenda

Colleen · 07-21-2015, 09:29 AM

I also had a complete pathological response as a stage IV diagnosis, liver mets and lymph nodes. I did 6 cycles of Taxotere, Herceptin, and Perjeta; at the end of 6 cycles we dropped taxotere and have continued with the HER2 targeted therapies. I am ER- and PR-. Due to the complete pathological response we could not find any cancer to remove so we biopsied the original breast tumor location which came up negative for cancer. At that point it was, "what are we removing?!?" so no surgery and no radiation. I continue the HER2 meds every three weeks for infinity.....at least until I progress or have a recurrence. A lovely ball and chain for the remainder of my life however long it may be.

thinkpositive · 07-21-2015, 09:48 AM

Colleen,

That is great that you had such a great response to treatment. The "ball and chain" scenario seems fitting. Guess we just have to be thankful that there is treatment available that currently works for our condition.

I hope you continue to respond well for many more years!

Take Care,
Brenda

KathyT · 07-21-2015, 07:32 PM

Think positive,
As far as I know they were not sentinal nodes, there is no mention of sentinal nodes in the report. Hope that helps��

michka · 07-22-2015, 02:31 AM

Brenda, I had NAC. My onc and surgeon recommended NAC hoping it would spare me mastectomy and axillary dissection. Unfortunately it did not work well and there was no hesitation about having axillary dissection. As a result I have trouble raising my arm over my shoulder level, and I still have burning, stabbing episodes and pain in my arm more than 8 years later. The 2 first years it was so painful I took Neurontin. It is better now but I still suffer from my arm. It also made my breast reconstruction very complicated. Maybe I had a bad surgeon but if they use SNB now, it is to try to avoid extra mutilation. All this to say that if you have PCR and SNB is good, why go for axillary dissection? And I am lucky! Some women have horrible lymphedema.
Having done axillary dissection did not save me from turning stageIV 4,5 years after dx. There are a lot of discussions going on between surgeons about the real use of axillary dissection even for the bad cases but there is no clear conclusion.
I am not a doctor but my opinion is that you were right not to go for it since you had PCR and clear SNB.