Lymph node pathology still positive for cancer?

tae

I had a bilateral with axillary node dissection 2 weeks ago. Just got the pathology report back today, and it appears they were able to get all the cancer from the affected breast (8 cm mass down to 3 cm and all margins wide and clear), but of the 16 lymph nodes they removed, 13 still showed "cancer activity." Anybody else had this result with IBC? My radiation has now been moved forward, trying to get me in the end of this week, and pulling my drains tomorrow (I have 2 left). Should I be worried? Anything I should ask for? My family is clamoring for another PET scan, but I know they won't do that.

Kicks

19 of my 19 nodes removed were positive.  That was a bit over 4 yrs ago and as far as I know - as of today I'm still NED.

We are each unique and our Drs are also.  My TX plan was different than many/most.  I did 4 DD A/C neoadjuvant.  2 weeks after last A/C, I had UMX.   3 weeks after surgery I started 12 weekly Taxol with one drain still in for the first 2 infusions.  A week after last Taxol I started rads and a week after starting rads I started Femara.

Why is your family wanting another PET before you finish TX?

ibcmets

They will most likely do another PET in 6 months for status. I was stage IV from the start and I'm not sure how many lymph nodes were cancerous but they did not take them out since I was already stage IV. 4 years later no lymph nodes are showing up active, just a bit of bone mets showing active again.

Terri

Kicks

I'm Stage IIIC IBC, DXd 8/09 and none of my Drs has suggested a  new PET scan since the one in 8/09 before starting chemo

cider8

I had 10/28 positive after chemo/surgery. My docs were surprised by pathology and did do another PET right before starting rads just to be sure they couldn't see anything else. Nothing seen. For radiation I did 44 treatments going twice per day. I had my axilla radiated as well as the supraclav and infraclav radiated. I was also radiated to the bottom of my rib cage. Quite a wide range. I was pretty scared pathology wasn't better but I felt reassured when I found out other IBCers had similar results and rads kept them NED for years. I started Zoladex 1 week after rads to shut down my ovaries and arimidex 2 weeks after the shot.

tae

Just found all these responses to my questions.  Thank you!  I just completed my last rad two days ago.  No word on when my next follow-up will be, CT scan, etc., but I do know that is in the plans every 3 months because of the 13 out of 16 positive nodes.  Even among your responses there was a range of difference between those who got a PET scan and those who didn't, and a range of when, as well.  I'm always pretty paranoid that it's our insurance company (Priority Health) that determines what you get when, but other times, they're quite accommodating.  I just feel so much more reassurance with a PET scan.  Who wouldn't?