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katym's avatar
katym
Member
8 months ago

My ALND was a bust..

Hi everyone, this is my first time posting. 
I discovered my lump in late May while breastfeeding my bub, and am now two weeks post surgery for hormone positive breast cancer. Not the clogged duct I had originally assumed it was. It’s been an awful shock, as I know everyone will understand. 
So, I have just had a lumpectomy, a LICAP reconstruction on the boob, and level 2 axillary clearance. 
I’m looking for advice from those who have had an axillary lymph node dissection.
I just had my post-op and it was a real mixed bag. Breast cancer out with clear margins (great) BUT seven nodes removed and … none cancerous.
While that sounds like great news the problem is that they had biopsied one suspicious node prior to surgery and it had come back positive. So it appears that this positive node was missed. I’m now headed for a second surgery.  
My question is - for those of you who have undergone ALND- is it normal that they didn’t mark my positive node in any way so they knew where it was during the biopsy or prior to surgery?
The doctors are saying they will mark it for the second surgery with magseed and it seems completely ridiculous to me that this wasn’t done initially, when my breast tumor (which was palpable so very obvious) was marked during biopsy. It just seems very slap dash to presume you don’t need to mark as you’re taking everything out anyway. 
I am wondering whether not marking or targeting when a clearance is planned is just normal procedure and I should just roll with this situation, or whether my hospital or perhaps the surgeon has not done something they probably should have ie mark the cancerous node. 
I have an appointment on Friday with the surgeon, and I feel knowing others experiences prior to that conversation will give me some peace of mind, or perhaps the gumption to at least push for a second biopsy alongside the magseed. I want to be really sure this time that they are targeting and marking the right node before I go for another surgery. 
Any shared experiences or thoughts from those who have walked this road ahead of me is appreciated. You are all so brave. This whole situation is very frightening. 

biopsy
lumpectomy
lymph-nodes
surgery
  • Mareealso's avatar
    Mareealso
    Member
    8 months ago
    Hi Katym, I think it really depends on the individual surgeon as to the degree of removal as I suspect others on here will all have a different story on their surgery and follow up treatment. With my first experience with breast cancer, I had 12 nodes removed  (followed up with a mastectomy and chemotherapy...but that was nearly 30 years ago). My second experience (last year) entailed radioactive dye injections around nipple, then waiting for the dye to move from that point to a sentinel node (only one as that showed the quickest and greatest dye uptake). This one was marked and during my second mastectomy (clear margin) only this one was removed and tested. The surgeon was in close communication with my oncologist who was part of the hospitals oncology team so decisions were made by a group discussion of this team. My surgeon and oncologist both said that removing more than the sentinel lymph node this time (this node could be a cluster or just one or two) left the patient at a greater risk of life changing damage (lymphoedema). They felt that the mastectomy, chemotherapy and follow-up oestrogen inhibitors was the way to go. Some people I know also had radiotherapy as part of their treatment. One thing I have learned is that you are your own best advocate...if you want to know why something did or did not happen, speak up and request clarification if you are unsure or confused. Feel free to continue to refer to this site for knowledge or confirmation of your thoughts. Wishing you  the very best!
  • katym's avatar
    katym
    Member
    8 months ago
    Thanks for the reply @Mareealso. Yes I think that they are commonly marked during a sentinal node biopsy.
    I still wonder if anyone has had a cancerous lymph node marked pre-surgery (a node known positive after a pre-surgery biopsy) who has been recommended for a full clearance. It seems like this is what should have, but didn't, happen in my case. But maybe they just don't do it as a routine thing.