when it returns....

Can anyone tell me, if the cancer reoccures, is this usual in the breast or can it also be in other parts of the body, even when you have a full response to chemo and no involved nodes?

Will they discover distant re-occurance in standard check ups?

Is there a big difference between people who did radiation and those that did not?

My surgeon told me right at the beginning, on giving me my diagnosis, that I'd have the op, the chemo and the radio.

I questioned him about the radio and his reply was, well I don't want you not to have radio and then come back with metastases in a year or two's time.  He said the radio was a belt and braces scenario, to make as sure as we could, that any stray cancer cells would be wiped out and make recurrence LESS likely.  Note he didn't say UNlikely, just less likely so.  Take whatever comfort you can from that because there really are NO guarantees with this as with everything else in life.

GeriC,

It is frustrating.  Why wait until symptoms present and then there is little to no hope of stopping it?  It is the general practice and guidelines to not do routine scans.

I'm so glad my first onc didn't agree with this practice and had her TNBC patients scanned each year for the first 3 years.  I had absolutely no symptoms, normal blood work, normal tumor markers, etc.  The PET scan one year after chemo found the recurrence, which at that time, was a regional recurrence (Stage 3) and not Stage 4.  If I had waited until symptoms, the outcome would have been much worse.  If you look at my stats, I was early stage 1, bilateral mastectomy, clear nodes, good margins, etc.  What I learned is not all tumors drained to the sentinel nodes.  Most, but not all.  I was in the 4 to 5% that drained elsewhere.  I thank my first onc every day for still being here.  (just my two cents)

Donna

Your wife and I were Dx a month apart.  I was Dx in June 2018 and had IV CHEMO, Lumpectomy , then Surgery,  then 6 weeks of Radiation then 6 months of Xeloda .  I had PET scan in June 2019 it was clear and MRI of Brain in February 2019 and it was clear but had recent CT OF CHEST that show small lung nodule that they don’t think is cancer but I ended xeloda on September 12, 2019’ and I very concerned about recurrence and I am planning to ask for another PET SCAN and MRI OF BRAIN.  My CT OF CHEST on November 6, 2019 was clear per MO and she said the Lung nodule was unchanged and she has ordered another CT OF CHEST IN 4 months in March 2020.  I am very scared .

As for Xeloda, the pills did not work for us.  Knowing how aggressive TNBC is, we know that when it sees chemo... there's a chance it can spread and do more harm.  Nonetheless,  I do think Xeloda was worth the try.  But when all  attempts failed and doctors wanted to do more conventional chemo with unfounded clinical trials and a brand new immunotherapy pill - we opted to do different.  

There's something truly scary about being a lab mouse for these doctors.  And this is where self advocacy is so important.  You can call the shots at any time!  Even if you choose to look for treatment elsewhere. My wife is being treated at one of the top cancer centers in the country and still - we're going another route!