Anyone experienced a false negative SNB.

DianeKS

Anyone experienced a false negative SNB.

DianeKS

I had bilateral mastectomies with immediate reconstruction in 2006. SNB at the time was negative. Followed that with 6 cycles of FEC and bilateral oophorectomies as am also BRCA 2+.  Have been on Tamoxifen and now Aromasin.  Just recently diagnosed with recurrence in lymph nodes only,  9/23 +, so will need radiation at least. Awaiting advice from oncologist about additional chemo or just a change to a different AI.  It has been explained to me that this is probably a false negative result from sentinel biopsy in 2006.   Frustrating and disappointing to say the least.  ER+ same, PR changed from + to negative ( HER 2 pending).

Has anyone else experienced a false negative SNB, and if so what was the treatment recommended.  Apparently this is not a well studied area,  as thankfully not many are missed so it does not happen very much.  Any advice appreciated.

carcharm

Hi, unfortunately the cancer can bypass your sentinal nodes and spread to lymph nodes beyond those nodes. SN's is not an exact science only a good indicator of spread. How many nodes did they remove in 2006? 1 or 2? My guess is that the cancer skipped these and spread to those beyond your SN. I have a similar situation ... I only had 2 nodes removed ... neither showed mets or micromets but one showed atypical cells. My first onc said this is the same as being LN positive even though I am staged I. So I asked the surgeon if he planned on another resection of the LN's beyond the SN and he said no since there were not micromets found. I have read other postings here where the chemo has eradicated the spread to the LN's that were not removed surgically. Was your surgeon onc doing palpation of your axilla/breast post your first surgery to see if there was swelling? Did you have any followup scans like pt or ct to see if any were involved? I worry that I have more positive LN but noone is willing to check  it. I can't get my onc to get me a pet. I am sorry they found this now. The fact that you are BRCA + does not help. I am HER 2+ so I too have a poorer prognostic outcome with this damn disease. Did you have chemo after your first dx?

DianeKS

Hi carcharm,

  In the original surgery they removed two nodes, I had follow up with the surgeon two weeks post, then six months and then I did not see him again till the recurrence.  The medical oncologist did not feel the node two weeks before I found it. I never had any scans as routine follow up, although hindsight that would have been something to consider. Not that I thought it could not happen,  but having the SN neg gave me a sense of security so it shocked me.  A lot of studies I have found online claim that SNB is still the prefered treatment.

  First time I received FEC 6 cycles.  This time mostly because the recurrence happened on AI's, they have recommended Doxetaxel 6 cycles,which I will start once a PICC line is placed later this week or early next.   Then radiation treatment.

 Certainly disappointing, but I'm just taking it one step at a time.  It would be great for you , just for piece of mind to get a scan. Worrying about the unknown is really hard to cope with.  Hang in there, keep asking and see what your caregivers say.

Did you have chemo?

Ohbother

Hey DianeKS,

 I had a false negative SNB.. First one in something like 1400 my BS had done.. LUCKILY (?) my path did not demonstrate clear margins so I opted to go back for a mastectomy... Path there found 3 positive nodes... Bottom line, is that you have taken the appropriate treatment any way... My problem would have come had I not opted to to the CHEMO based on No Positive Nodes...  You took all the encessary treatments so don't worry about it.. move forward ... Get well...

carcharm

Yes I have had 5 of my 6 tch chemo txs. I still have 1 yr of herceptin to go. I found out that the insurance will not pay for a pet scan unless I have symptoms or have a lump.

DianeKS

Hi Ohbother,

   Yes, I guess I was just glancing backward trying to make sense of what I am going through again, but am trying to move forward.

   First cycle of six  Docetaxel started yesterday, so far so good. Then radiation, most likely hormonal tx after that.

carcharm:  that is too bad,  they won't consider it as a follow up after your sixth cycle?  Can you go to a private clinic and get one done?  I am not familiar with the American system, but in Canada you can pay for one if you want (mostly due to wait times )and then if a doctor supports the need for one you can get the cost paid for by the gov't if your lucky.  A friend of mine did that , her scan was clear but she sure felt it was worth the money and she was a lucky one and finally after some letter writing got it paid for.

Diane.