Thinking of refusing SNB

waytooanxiousmommy...sorry you are going through this. You actually make a lot if sense. I'm sure anyone that has lymphedema would agree with you! Its probably the worst SE of treatment. Breast surgeons tend to underestimate the risk. You are right in saying the reason they do stage by the lymph node status. I'm very interested I knowing what your doc has to say about it. Good luck and keep us posted.

I had one positive lymph node that was found on US and confirmed with biopsy. I had a CT scan and only the one positive node was found. I had ALND and had 13 nodes removed and they found a second positive node. I am glad to have them out! It is only 6 months since my surgery but I have had no LE. Good luck, not everyone gets LE.

Waytooanxiousmommy:

That link is to a feature about the AMAROS trial (see 2013 Abstract; see 2014 full-length Lancet Oncology publication; and related NCI manuscript (caution: the NCI manuscript content may differ from Lancet publication and/or contain errors)).

My layperson understanding of AMAROS is that those who received ART (axillary radiotherapy) also received SNB. AMAROS does not appear to be a study about skipping axillary staging by SNB. It appears to be a study comparing [axillary lymph node dissection] to [SNB plus axillary radiotherapy] in sentinel-node positive patients (i.e., who received SNB) with T1–T2 primary breast cancer and no palpable lymphadenopathy.

Also, patients who received neoadjuvant chemotherapy were not eligible (i.e., none were included in the trial), so the results of this particular trial may only apply to those with a surgery-first plan and the clinical and pathologic features of the study population. Please ask your team.

I recommend that you discuss this study and any other outside materials that influence your thinking with the appropriate member(s) of your team to ensure applicability of the findings to your case, accurate understanding of the results, and accurate application to your situation (if indicated). At the same time, you can ask which studies speak to your case and for an explanation of the findings, [EDIT: and/or whether there are any relevant clinical trials enrolling patients that may be of interest].

BarredOwl

I get where you're coming from, but imaging and exams are not foolproof. Pathology always gets the final word and there seems to still be an advantage to removing any positive nodes vs irradiating them.

I looked into Proton radiation and my insurance would not cover it. Part of my reasoning in opting for BMX was being able to most likely avoid radiation in my case. My SNB was negative so no rads were needed. I've had no LE symptoms.

My recollection is that if my SNB had shown 1 or 2 positive nodes then they would have just gone with radiation, 3 or 4 would have led to an ALND. think it really depends on how many, how positive - how much total cancer.

Leesa, what a good point you make regarding the oncodx typing. Too much is put on the score in your case you had more positive nodes and therefore more belief cancer could have escaped. The score doesn't mean you won't recur. A coworker of mine was diagnosed with ILC one month after me. I had 2 tumors IDC and ILC close to skin, hers just 1 ILC spot near chest wall.

She got her oncodx score a 4, mine was 34. I was so envious. Not 6 months later she told me they found cancer in her hip and spine. I asked her how they duscovered it, she said she had pain and her radiologist did a biopsy.

I wasn't envious anymore. It is so important to look at all the information presented not just oncodx when making treatment decisions also trust your instincts nobody knows you better than yourself.

Hey waytooanxiousmommy, I was also thinking of refusing the SLNB at one point. My lymph nodes looked fine on MRI and ultrasound, and I told my surgeon that I really, REALLY didn't want a SLNB. Well, my surgeon was adamant that we do the SLNB, and I reluctantly agreed. It turns out she made the right call in my case - when I went in for my mastectomy surgery, the first node was negative, but nodes two and three were positive, and nodes four and five were negative. I am relieved that those nodes are out, because my cancer is extra nasty and aggressive. I can understand why you have misgivings about the SLNB though. I still live in fear of overusing my arm and causing LE, but many people never get LE, and I hope that's the case for you. If you let your surgeon know your concerns about the SLNB, he/she will probably take your preferences into account and err on the side of taking fewer nodes. Let us know how it goes and best wishes!

My layperson impression (which may or may not be correct) is that the idea of not performing SNB (no axillary lymph node surgery) in those who have specific types of invasive breast cancer AND who received neoadjuvant chemotherapy AND who achieved a pathologic response (as assessed in specific ways) may be "investigational" (the subject of on-going or planned clinical trials). If a suitable trial was underway and currently recruiting and one met the inclusion/exclusion criteria, one might consider joining the trial (subject to the caveat that the investigational approach may or may not be as good as current management, which is why such trials need to be conducted.) However, the literature in this area is complex and easy to misunderstand, so please ask your team what is known about it to ensure you receive accurate information.

BarredOwl