Recurrence after bilat mastectomy?

jjl, I had SNB done in 2000 with the BMX, I had 1 LN taken out in Sept 2013 (it was supposed to be just scar tissue), then I had the complete ALND done 6 weeks ago. The first I heard that I had extranodal extension was when I saw the RO last week and it was on the LN that was taken in Sept. He explained that the extranodal extension is when the the cancer breaks out of the node and infiltrates the surrounding tissue. I had chemo before surgery, and when they did the surgery all 29 LN's were clear and there was no sign of the cancer other than that darn DCIS that was still there from 2000.

None of the 20+ docs that have reviewed my case could come to a definitive answer as to whether I had a recurrance or a new primary. The best answer I finally got was from my BS after he got the path back from my ALND. There was still DCIS in the remaining breast tissue under the arm and eventually it broke out of the duct and evolved into IDC. So in my case, it is both a recurrence and a new primary.

When i met with my oncologist last week she said cancer cannot come back under my implant because it is placed under my pec muscles. So my follow up will be mammogram on the (so far) cancer-free side and they will just feel the side with the implant to make sure the remaining skin and muscle are ok. No scans.



Does that sound right? I have read about women with "chest wall recurrence" under the implant, is that in the pec muscle, tat might be underneath the implant for them? Does anyone know?



So many questions throughout all of this. Thanks to anyone who might have input.

Beesie, thank you so much for clearing that up.  I couldn't figure out how a chest wall recurrence would be detected.  It makes sense that the chest wall is now on top of the implant.  That's the fascia, right?  

I'm not sure I understand...the chest wall is the flap or the skin over the breast? I thought the check wall was either under the breast implant?

So if I were to find a lump on top of the breast it's the chest wall? I thought the reason we had an MRI is to see underneath the implant, the chest wall.

I'm concerned in that I recently had a MRI that lit up in one spot possibly b9. I also have a lot of lumps that are most likely fat necrosis. I have a very lumpy flap over the implant especially where the tumor was located.

When I had my 6 month mammogram for the good breast, I mention to the techs about the lumps. They decided to do a mammo on the implant. My oncologist said it was foolish as the mammo isn't going to show anything. The techs said it would show up irregular califications which would be worrisome around a lump as to why some techs possibly suggest it.

hindsfeet, your chest wall was stretched out and your implant was slid underneath it, pressing your chest wall out. So any chestwall recurrence would be VERY evident and right on top.

sciencegal, after my single MX, I asked about MRIs but both my oncologist and my breast surgeon felt that I didn't need to have them.  It was only when I went for first mammo on my remaining natural breast after my surgery that the radiologist noted on the report that I have extremely dense breast tissue, and given my history of breast cancer, she felt that MRIs should be added to my annual screening.  She included that on the report too. Since the radiologist is the expert on screenings, at that point my breast surgeon agreed and told me that I should continue to get annual MRIs for as long as the radiologist feels they are necessary.  7 years later, they are still deemed to be necessary.

I'm in Canada so I don't need to deal with insurance approvals - if a doctor recommends a test, you get the test - but you might be able use a recommendation from the radiologist who reviews your mammos to help you get approval for the MRIs.

Thank you for the advice!

Much appreciated. I will see how the follow-ups go.

Hi ladies, just a quick question; I had BMX almost 2 years ago, but have had pain in ribs over past few months. Had xray and CT but nothing showed. For the past 2 weeks have had very sore collar bone, and now have swollen and tender lump on right clavicle, close to sternum. If still there next week will see BS. She mentioned maybe a bone scan when I saw her last...any ideas? Thanks!

Thanks, Barbe. Gosh, you have been through a lot! I didn't have rads; went with BMX (no recon). I have been very healthy for past 18 months or so. My ribs have now settled, but my clavicle now has hard lump on it. It's actually really quite painful, and my shoulder and right arm also a bit sore, too. I know it's probably nothing, so not TOO worried. I am wondering if I perhaps damaged/fractured my collarbone at some stage, recently, and that is the pain? Anyway, have appt with BS in 2 weeks time. I will cancel appt if all settles down. Is there much involved with a bone scan?

Rowan, wouldn't you know if you damaged your collarbone? My niece had to get an armsling when her's dislocated and it was quite painful, so I think you'd know. Nodes can get pretty pissed off when something in their "area" is out of whack. You need to get everything back in whack! See your BS anyway.

For a bone scan (NOT bone density!!) you get an injection of dye (sometimes they do a quick scan to make sure they hit a vein and the dye is moving) and then you wait a couple of hours for the dye to circulate your complete system. Then they do a much longer scan that can be over an hour long!! I've had shorter scans, but I like when it takes longer because as the tech says, "The machine moves on when it gets the information it needs." My last scan was 1 hour and 15 minutes! Of course I panicked, but all was okay, just the horrid arthritis!

Rowand- Yes!  It absolutely could be arthritis- and chances are it IS!  We've had many ladies on the TNBCF forum with your same situation and sure enough!  We learned to love arthritis... considering.   Wishing you much luck.  I'm betting (and praying) that's the case and you'll be fine!

2nd_ time-  I had silicone implants for almost 30 years before I discovered my malignancy. (after breast feeding 2 babies I wanted 'the girls' to be back UP ^^ where they belong.  You know, that gravity issue- plus added a cup size.  I was very small breasted and much too young to have a bad case of the saggies).  Those implants are a lot more resilient and sturdy than you might think.  The manufacturers have to publish every possible repercussion to stay within legal guidelines- just like ANY medical device, procedure or drug.  I had a very small rupture on my lefty which caused no problem about a year before my dx.  Also, back when I had them placed the implants weren't nearly as well-designed for durability and longevity as they are now. They didn't have the extra outer shell of saline either.   I'd say 28 year-old silicone implants with everything still in-tact is quite sound!!  I don't plan on regular MRIs to check for tears / ruptures in my now relatively new implants until around the 5-10 year mark.  The only down side is you don't know when silicone ruptures as you would with saline- the latter would simply deflate.  Having silicone implants over saline was a no-brainer for me.  All of this to say, I wouldn't worry too much about the rupture issue, even though the literature suggests your implants should be checked fairly regularly.  It's not to say it doesn't happen earlier than my own experience-- but the chances of early tears/ruptures are very very slim.  Ultimately you should do what you're comfortable with.  For me there's no way I'm checking as often as they suggest. It simply isn't necessary IMO.

Another major soapbox....sciencegal and others:

It's ABSOLUTELY medical negligence to give mammography ONLY for ANY woman with dense breast tissue!  Time after time life-threatening lumps go undetected.  Since I've always been high risk due to my mother's early onset BC, PLUS dense tissue... I'd request my docs write an ultrasound along with yearly mammos. Any reputable doctor would realize this.. and want you to have both!  Without question the gold standard diagnostic tool for BC IS MRI.  However, more often ultrasound picks up anything suspicious which would then indicate an MRI to confirm before biopsy.  I've even had an MRI which required an ultraound after to check the relability of the MRI due to some shadowing on the image.  So, your choice.. but U/S is an excellent diagnostic tool.  Your center should have the latest technology in sonagram machines.

Also.. I found it interesting that U/S is much less costly than mammos. (My last one, out of pocket was less than $100)   No doubt, there's definitely a place for mammos.. they DO detect BCs & save lives--- however NOT acceptable as a singular diagnostic when breast tissue is dense!!!  (have I drilled that point enough.. or what?  ha!)

On to rib pain which is another symptom of complaint by many ladies.  After scans- the overwhelming number of woman with this type of pain or pressure proved to be purely benign- nothing of concern.  Of course it's always best to err on the side of caution.  We ALL know this is true with any symptoms which persist over 2-3 weeks.

And FINALLY... since I'm not here that often to post... but do stay with each of you by reading...

I'm honored to be among a group of strong, brave BC warrior-survivors in this thread.  It's amazing how we discover just how much real strength we muster when faced with our battles.  I'm betting you've ALL had others express how strong you are for all you've endured.  We do what we have to do. I survived aggressive chemo, 7 surgeries in less than a year, not to mention the emotional/mental anguish which goes with the territory.  Our 'fight mode' kicks in, remains in high gear and goes on so long it's strange for us when tx ends.  Especially for those of us w/ all negative hormone receptors since there's nothing to take to bay a recurrence to date.  However it holds true for all of us.  After tx due to the aggressive nature of triple neg., I jumped in with both feet eating the anti-cancer way (a whole subject in itself) exercise, the right supplements.. and upon my top MO's recommendation a low dose aspirin daily.  Do I cheat some?  You bet I do.  Life is for living.  You can't deprive yourself of that dessert on occasion.. it just wouldn't be right!

My wish for each of us is peace of mind, finding the beauty in each day.. and goes without saying..  NED forever!

If you read this, thank you.  Please forgive that I ramble on so long.

My love to ALL. -Mindy-

Mindy, please, please come back more often! So grateful you decided to come back when you did, you gave me so much info and compassion. Tears in my eyes towards the end. So happy you had a lot so say! ((Hugs!!))

Hi Rowan,  Please follow up with your doctor.  I was 4 years out from my bilateral  following 2 lumpectomies, when I noticed a slight bump in my chest wall right where the original tumor was found.  It turned out to be a recurrence but meanwhile it had metastasized to my bones.   I went from DCIS to Stage IV.    It is a very small percentage that it can occur in after BMX but it can happen. 

Rowan, I know what you mean when you say you feel like a hypochondriac, but watch how fast your team reacts when you mention your issues!! This is serious stuff and they can't ignore anything weird like you have going on.

I have just discovered a large area that feels like breast tissue that has become enlarged, but not tender. It's not a hard lump. It's large, about 3 inches by 1.5 inches.



I had BMX Feb. 27, 2013, had chemo, started Femara, and am having rads on my right breast.



The growth is on the left side, the side I opted to have removed, but did not have cancer in it. It's around the incision line.



Any ideas?