Contralateral axillary mets after BMX
hi,
It seems like 1st dx was so long ago and was just 2 yrs. I was just dx with CAM. Which apparently stands for the title of this post. All cancer was on left side, had BMX and now it's found its way to the right armpit. Have no idea how this happens. Was it there from the beginning? Why then was my right breast clear?
Anybody else with similar dx?
From reading other posts, this seems rare.upset and angry that this is happening so soon and feel like life is over and with 2 young kids that's hard to swallow.
D
Comments
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Hi D,
I am very sorry to hear your news. I know this must be overwhelming for you, but they can treat it just the way they would with the original axilla.
I have not have it happen to me, but I have been having a very painful opposite armpit since November last year, nobody seems to be taking it seriously. My GP has ordered some nerve tests, but I know it is not nerve pain.
I wish you well and send you a virtual comforting hug.
X
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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.
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Oh my gosh, dancingdiva!
I have not been in the forum since August of last year - I remember you so well.
Check my stats at the bottom - and here I am, newly discovered recurrence in my nodes on cancer side (axilla). I am currently waiting for answers. I had BMX and negative SNB! Low oncotype, too!
I have the same questions...was it there all along and missed? My BS seems perplexed.
Please keep me updated, and sending hugs your way.
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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.
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KBeee-
Thanks for your input.
What I don't understand - is this truly a recurrence since I did not receive chemo and it was there in my axilla all along? They only took one node and it was negative whereas there were other positive nodes. I discovered the lump under my arm in the shower and it was a honker.
What really upsets me is my BS says it doesn't change my survival stats...uh, yes it does. My oncotype score was based on negative node, and with a lymph node so large I would certainly think it changes my stage and prognosis.
Thoughts?
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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.
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Thanks, KBeee -
BTW, I just changed my avatar and username.
Crazy how, based on my Oncotype, I was told I didn't need chemo but like you said, it doesn't really matter.
I am concerned because the node is sooo large...I would think this is prognostic of mets but IDK. I had genetic testing done and have two hereditary cancer syndromes; Lynch and ATM mutation. With the ATM mutation, no rads or scans (can cause leukemia or lymphoma). They wanted a PET scan and decided against it. So for now I am scheduled for breast MRI (although there's no breast). Had tumor markers done. I presume full axillary dissection and chemo to follow.
Funny how we both recurred around 18 months. How many positive nodes did you have? Did you get a full axillary dissection? What prognosis did you get, or rather what was your second Oncotype score? How did your staging change? Were you scanned?
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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.
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By the way, where in PA are you? I grew up in NW NJ, went to Penn State, and then worked in State College for a few years while waiting for DH to finish his degree. He is from Erie.
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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?
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oh you must be so frustrated. Your BS should have referred you to a MO, That is who makes chemo decisions. MO tells me allbthevtime that BS is the best around, but he makes surgical decisions and MO makes medical decisions. Thankfully my whole team is supportive when I seek second opinions. I could go on and on about how many times I have had to stand up to docs to get appropriate care. Scary and sad. Your BS should not be making predictions about chemo! Do you have a MO? Make sure you have one you really like. A second opinion would be a good idea; how far is John Hopkins?
I know of about 5 people who have done cold caps. They worked perfectly for 3, so-so for 1 and not at all for 1. My hair was at my bra line, so much less traumatic than hair as long as yours. Do what feels right for you; not just what hubby wants.
Glad you got to enjoy Sanibel; I went there as a child. So nice there! Plan to go to Europe. Planning details of your trip will give you something to look forward to.
DH's job brought us to Iowa. I love it here.
When is your next appointment? Do they have any plans yet
I forgot to mention that both MO and BS check my axilla during exams. Yours should to
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Thanks for responding ladies.
I had a petscan done and nodes are onlY lit on right side which was the good side. All is well on left side. Wtf!!??? So now I'm finally getting genetic done.
dropping the ball? I was scheduled for mri to get clearer picture....show up and tech keeps mentioning breasts so I keep saying TEs. So I tell him is this safe with TEs seeing there is a magnet in there? Well apparently it is not and nobody knew!!! Good thing I asked or I don't know what would have happened during mri.
D
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hi, dancingdiva. that is truly scary about the mri. I too have repeatedly had to remind even well-intentioned and smart doctors about my particulars and why i should not do what has been suggested. I think they just do not have time to review a patient's file before ordering tests. I am always pleasantly surprised when I find a doctor who does his/her homework.
I have an enlarged lymph node on my left side even though cancer was on right before my January mastectomy. The BS looked at it by ultrasound in February and said it looked fine, but it is still there. all my doctors said contralateral mets is so rare and sort of politely dismissed my concerns. I read up on it myself. apparently, lymph drainage can be altered by prior surgery or radiation or very rarely, just by anatomical difference. some have suggested that the contralateral node could be the "sentinal" node. Have your doctors come up with any explanations?
I am really sorry you are having to go thru this, but it seems like good news about being confined to one side. Keep us posted and continued best wishes!
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Hey Kessa, I think it is rare so they r a little mystified. Now they're finally doing genetic testing. Pathology has gone from pr + to - but still er so they don't know if this is another primary or mets. I think because there is nothing on the left and I had huge tumor it's wierder.
Everything bout me is rare or strange so I've learned that if I'm uncomfortable get testw
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Hi dancing diva!
I remember you from the July 2014 chemo board. I'm sorry to hear about your weird recurrence. What a shock for you. I don't have any insights into your situation (or that of farmerjo's), but I want to wish you well. I pray that they figure out your situation and come up with an effective treatment plan. ((Hugs))
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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.
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Hi Dancing Diva, I know your post is from awhile ago, but there isn't too many with this diagnosis of CAM, so I've found. I had right CA and had a double mastectomy, one right positive node. Two years later I had a right recurrence and 5 positive left nodes this time, yet no evidence of cancer on the left side. Or elsewhere at this time. Was wondering how you are doing? I'm currently on letrozole,(which is terrible) on number 7 out of 25 rads. After rads oncologist wants me on Ibrance, which I'm not happy about.
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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!
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DancingDiva,
so sorry to hear about your recurrence. How are you doing?
I am dealing with a recurrence as well but mine is on the same side but close to the sternum. I don't know the staging yet and I just had a biopsy done last Friday.
How are you doing on Ibrance?
Lola
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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?
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