Contralateral axillary mets after BMX

DD- You are not the only one. This was the case for my DH and he was less then 2 years out from original DX. It was a real blow as it seemed we were just starting to relax and he was feeling so well again and when the MO found the mass it was devastating. It was hard to see him go through the treatment all over again. Our MO felt it was good that he couldn't find any sign of cancer anywhere else and was aggressive with treatment. It's hard to know what to think. Hang in there, I feel for you.

It can be overwhelming to deal with a recurrence. Mine recurred 17 months after BMX, so I do get where you are coming from. It can be helpful to get a couple opinions. There are not many studies on how to best treat local recurrences. Most are on newly diagnosed or metastatic. It makes it tough. The opinions for me were opposite ends of the spectrum as far as what was recommended. I found treatment the second time around a little easier physically, because I had done chemo before and knew what to expect and how to manage it, but more challenging emotionally because it came back so quickly after treating it aggressively. What I can say is that it was much easier once my plan was in place. Hoping you both get a plan soon and plow forward. Sorry you have to deal with this crap again.

One thing I learned after my recurrence was to not focus on survival stats. According to all stats, I never should have recurred. I had a 1.8cm tumor, node negative, oncotype 16, blah, blah, blah, and we threw the book at it with BMX, chemo, and Tamoxifen. It came back anyway... 14 months after finishing chemo, and in 2 spots. I eat healthy, exercise daily, etc. I caught these early; they were both small, but I know recurring soon, in 2 spots, etc is pretty high risk. If I focus on that, I would drive myself crazy. This sounds ridiculous, but I have finally decided that whether they tell me I have a 10% chance of recurrence or 95% chance of recurrence, really, my chances are either 0% or 100%. If I do not recur, it's zero percent. If I do, it's 100%. Someone is always going to be in that minority percent whose tumor does not behave. I treated it aggressively again, take my Letrozole daily, and continue to eat healthy and exercise. I do stress about aches, pains, and such; I would be lying if I said I didn't. I do however, try to stay distracted and just live my life.

The sentinel node biopsy is correct about 95% of the time. The other 5%, there may be cancer cells in other nodes. It does not take a big tumor to recur; just a couple cells. With surgery disrupting things, blood flow to the area may not be perfect, so the drugs may not work as well there. That's why I think they're aimed at systemic control, whereas radiation is aimed at ridding the body of any local cancer cells left behind. I am guessing they will add rads for you this time. It is very possible a couple cells were there before, but they'll never know 100%. It is frustrating. My oncotype was lower than yours and mine came back despite adding chemo to the mix. It's such a crap shoot. My MO was not sure insurance would cover oncotype the second time, but they did. I hope you have a plan in place soon.

When I found my recurrent tumor, they were "sure" it was not cancer. They sent me to my PS to see if it could be related to reconstruction. He said that it's right where he splits the pec muscle, and he was 99% sure it was scar tissue because it is common for it to develop there. My gut told me otherwise, and I told him I needed to sleep at night, so I said I'd like it removed, and he was happy to do that, and even scheduled it 3 days later. We were both pretty shocked when it came back positive. He took it out in 3 clumps, because it did not look at all like cancer; we do not therefore, even know it's true size. Once it came back as cancer, they did an MRI. It showed nothing. They then scheduled an axillary node dissection and re-excision to assure clear margins. They tried using dye to find a sentinel node (at my request, and at the recommendation of Mayo), even though it usually does not work. It did not work, but he felt around and felt something hard near my axilla, under the edge of my pec muscle. It looked like a node and tested positive for cancer, so they took out 13 more nodes. That's all I knew when I awoke from surgery. A couple days later I got a phone call that all of the nodes were negative, and that the thing they thought was a node, was in fact not a node. There was no lymph tissue or breast tissue present. They sent it up to Mayo. Mayo said it was breast cancer growing in the soft tissue. It never did show up on the MRI; not sure why other than maybe it was too small. So I ended up with no positive nodes, but I had a tumor growing in the soft tissue. While I am glad it grew there and not my bones or something, it was still disconcerting to have it growing there with no explanation of how it got there. It was not "cells left behind" or there would have been breast cells found. Based on everything, and the odd presentation, they never really gave me a prognosis, and I really did not ask. I know there are both good prognostic factors and bad ones, and it would have been a guess. The tumor that the PS removed had an oncotype of 40....quite high! We did not send the other one. I am not sure I would have wanted to know that one because the Ki67 was twice as high as the other tumor! They did a PET scan at the time which was clear. BS called it stage 1 because the tumors were small, but MO never really staged it because we had no imaging to show tumor size, and the second tumor where it was made it a regional recurrence, and it would have been understaged...if that makes sense. I never ask for a prognosis because I know it is merely an educated guess.

The breast MRI will show the axillary area too. It also shows anything hiding out in the reconstructed area. I would presume that an axillary dissection and chemo are good bets. I considered chemo my ally, not my enemy. It was on my side in my war against this beast. I seem to tolerate chemo better than most people. I made time to exercise every day, cut my work to part time, and never was sick. I had one bad afternoon during AC round 3 and 2 bad afternoons during AC round 4. Both times I felt like I had the flu. Other than that, it was just annoying fatigue and such. I even did a half marathon during chemo. I ran a mile, walked a mile, etc. My MO laughed that I did, but he would not tell me no, because he knew it gave me a focus other than chemo, and that was good. Find something you like to do and do it during chemo. Set reward weekends, coffee dates, etc. Give yourself distractions and things to look forward to and focus on other than your next trip to the chemo bar for your cocktail. It is not fun, but it is definitely doable. There are so many drugs to combat side effects, that for most people, it's nothing like the horrible chemo you hear about from people 10 years ago.

KBeee-

I am from Maryland and now living on the MD/PA line, southeast of York.

Thank you SO much for your input. My BS seems focused on the false-negative SNB - BUT I wonder if the recurrence is in my breast tissue. I had nipple-sparing MX (cancer was at 6 o'clock, in crease) so some breast tissue is left behind. Or the recurrence could be on the chest wall? So many variables.

Crazy, crazy, crazy at your turn of events. My MRI the first time around did not pick-up a highly aggressive DCIS - it was found on pathology. Hmmmm. Seems we still have a long way to go with this nasty thing called cancer.

I was not angry at my initial diagnosis - I am now. So many why's. Why doesn't the BS exam the axilla on routine exams? Why did he tell me no chemo with an Oncotype of 19? He simply said "You'll be fine."

I constantly encounter situations where the ball has been dropped. I am in the medical field and see this every day...and it happens to me more often than not. Back in January, my gyn discovered a small pea-sized lump in my cancer breast. This was THE DAY AFTER MY ROUTINE BS exam. I thought, well, my BS just examined so it must be fine, and I kept an eye on it - it did not change. Saw PS in April and pointed it out to her and she thought it may be due to the fat grafting, but she would sent a note to BS just the same. I never heard anything, and the lump is unchanged. Could it be that? Who knows. I could go on and on. I feel let down in a big way. Negative SNB and now I have this big honker lymph node. What REALLY gets me is the BS saying it does not change my prognosis - he has a bad habit of sugar-coating. I REALLY want honesty and a general idea of prognosis...

No PET scan for me. They called yesterday saying they were setting it up and I had to remind them of my ATM mutation (hypersensitive to rads), which I recently found out about, and they said "oh, ok, no PET then". Why, why, why do we have to work so hard at something that didn't exist 20-30 years ago? Overwhelmed physicians and facilities...easy for ppl to drop the ball, fall between the cracks, etc.. I can't tell patients enough...you have to be your own advocate - and be proactive!!!!

I want to add that I am not overweight, normal BMI. I am extremely active, living on a small farm. I commute to Baltimore for work but dropped to part-time after my initial diagnosis. I have already informed my manager I will be submitting my resignation when chemo starts. I want more time home, doing the thing's I enjoy. We just returned from our Sanibel vacation, taking our granddaughter to Disney in October, and we have booked Europe for next year, now not so sure. Now I feel panic-mode to do everything at once.

Chemo - so DH tells me I should do cold-caps, when I really want the opportunity to let this gray grow out instead of coloring. My hair is waist-length. Sigh.

Thanks in advance for letting me rant.

What took you to Iowa?

Had axillary dissection Friday - have not heard from anyone yet.

What I do know: Biopsy shows this is my original cancer, and that my original negative sentinel node was a false negative. Sooooo, my original Oncotype score was based on negative nodes so no chemo. This has been growing in my node since day 1 - I've basically been untreated for 18 months.

Fortunately, PET and MRI are clean.

hi!

I had a recurrence, which was a tumor in my right lymph nodes with no evidence of cancer in the right breast. My original cancer was on left side, with no lymph nodes. I had a mastectomy on left only.

I did taxol, surgery and radiation for the recurrence in 2013. I am on tamoxifen currently. They said this type of recurrence was rare and told me I was Stage IV. So far, no progression. Yay me!

Hi Karenmarie,

I have a similar diagnosis. I keep reading about mets to lymph nodes but there isn't a lot of information. I'm currently doing rads (not needed the first time) and they want me on Ibrance after radition. I'm not happy about that. Are you taking Ibrance as well?