Recurrence after bilat mastectomy?
Comments
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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.
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Thanks Bren, I never though that nodal extension is that serious. I though just a scar from biopsy. Omg, it's cancer out again!.. I will do chemo again. All the docs recommend agreesive chemo. Probably FECx6. I had C and T x4 last Aug. That didnt work for me, I felt the lymph nodes enlarge when i was having the treatment. Also tamoxifen didn't do good job for me too. The cancer still grew. I'm on zomedex now, but I still take tamoxifen, because I scared cancer back again.
Anyway, thanks for reply. -
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. -
sciencegal, because your implant is because your muscle, a chest wall recurrence would be in front of your implant. So what your oncologist said is correct. Any recurrence, either against the chest wall or against the skin or in the scar line, should be noticeable quite quickly with just a manual check. I can't recall hearing about anyone with implant reconstruction who had a recurrence behind the implant.
In my case, because I had a single MX and because my remaining breast has extremely dense breast tissue, I get annual MRIs and mammograms, alternating every 6 months, to check my natural breast. The MRI at the same time also of course checks my MX/reconstruction side. I've always been glad about that. And then this past year when I went for my mammo, the tech told me that their facility has now started to do mammos on reconstructed breasts. She asked if I wanted to have one done. I thought it might be painful but I decided to try. It was a breeze. So although I know that manual checks are the standard of care and are considered to be all that's necessary to check a reconstructed breast, I'm glad that I had a single MX and still get this other screening - because it means that I also get extra screening for my MX side.
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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?
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Ladies - I'm having a PET scan on Wed. to see if the enlarged internal mammary lymph nodes that showed up on my MRI two weeks ago shows up on this scan. My MO ordered the scan - not my BS which upsets me because I really trust her. She told me that she's not worried and just to follow up in 4 months with another MRI - when I asked her about futher tests to be sure she asked why - afterall I "just had DCIS"! I HATE THAT PHRASE!! I get that I didn't have invasive cancer but just b/c my SN biopsy was negative doesn't mean that there couldn't have been one lone cell that they missed right? My area was near my chest wall and I have not been on Tamaxofin so as long as I'm producing estrogen (which I am b/c I'm still having regular cycles) who's to say one cell didn't decide to take up somewhere else and have a party? Granted the area showing up on MRI is "only 6mm" but that's 6mm larger than my previous MRI 4 years ago. Thankfully my MO is pushing forward despite the size - he said that if it is "active/aggressive" it would light up on the scan as they have seen as small as 5mm.
I chose to do a BMX b/c I didn't want to go through mammograms and worry every few months yet here I am, back in the "hold and wait" routine - a place I am not good at being.
I believe that everything will be fine - regardless if there's something or not. I always hope for nothing but prepare for something! After all I'm the CEO of my body right??
Thanks!
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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.
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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. I also have a lot of lumps that are most likely fat necrosis. I have a very lump flap over the implant especially where the tumor was located.
When I had my 6 month mammogram for the good breast, I shared with 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. It would show up irregular califications which would be worrisome around a lump as to why some techs possibly suggest it.
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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.
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Beesie and Barbe- thank you! I know they expain this in the doctors office but I guess I am getting to trust the girls on this site more!!! That makes total sense.
It was just weird to hear that i would have mammos only in the future, no scans - i also have very dense breast tissue which is why my tumor was missed with regular mammos until it was NINE cms. My gosh.
SO I do need to be my own advocate and will ask again about the MRIs. I know insurance hates them, but herceptin is even more expensive. My bill so far for meds and surgery is over a third of a million dollars. it is unbelievable. Thank goodness for insurance.
Isugirl and Hindsfeet- GOOD LUCK! -
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.
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My MO is a top specialist in aggressive breast cancers. She feels that with my bilateral any local breast recurrences could be palpitated, hence MRIs are not necessary. She would not hesitate to do both ultrasound and MRI if we felt something odd. In fact I've had an ultrasound since my exchange surgery. I felt a lump near the outside of my non-cancerous breast. I chose bilateral since I'm also BRCA 1+. The lump I felt was a small fold in the implant.. and I no longer can feel it. I monitor very closely in the shower- as I was the one to find my first (original) invasive mass when it was 1.8 cm.
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Thank you for the advice!
Much appreciated. I will see how the follow-ups go. -
I had my 6-month check with BS this morning. According to her, no MRI's to replace mammos. However, need to speak with PS about MRI's to check silicone implants for leaks. As Adgirl put it, if I feel anything strange to call BS right away to see if further assessment required, otherwise, won't see her for 6 more months.
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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!
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Rowan, very, very scary, eh??? I suffered from rib pain on and off after my double mast. At first we could blame it on where the drains sat for a couple of weeks and then were pulled out. Then, because I have arthritis in so many other areas of my body, I've been told it's "just" Costochondritis. Whatever it is, it's VERY painful when it "hits" me; so bad I can't even breath. It was first thought to be my heart (left side) so I did get a full work up. Consider that, please.
Then, now almost 5 years out, I get rib pain on my right side - of course I thought swollen liver!!! It got so bad I'd have to raise my arm to be able to take a breath when I was sitting as that's when it seemed the worst. Got a torso CT that just showed nodes in my axillae (which I just had follow-up ultrasound today for) which will be re-checked in 6 months to see if they've grown.
STILL doesn't answer my rib pain at all!!! I didn't get rads, but have read that a lot of women suffer from rib pain after rads. You don't say if you had rads or recon (I didn't) so I'm not sure if something in your recon could be hurting you.
All-in-all a very scary feeling once you'd heard the word "cancer" and your name in the same sentence!! You are wise to be vigilent, you know your body best. I related my story to let you know that I've had rib pain for 5 years and it hasn't developed into bone mets or any other tumour. If you haven't had a bone scan yet, it would be a good idea. The problem is, if you get uptake (a reaction to the dye showing activity on the bone) you won't know if it's from arthritis or mets!!! I get HUGE areas of uptake and they just say they "think" it's not mets, and recommend an MRI which I can't have as I have a pace-maker. I was counting on the CT for some definitive answers, but the results of that said to have a bone scan!! So you can see there is a lot of gray area once diagnosed. Some women are told they have mets with a single spot on their skeleton. I'd demand a biopsy if possible. The drugs to help bone mets can actually damage your good bones.
As for the swollen clavicle I had that too!! In fact, the ultrasound was terrifying!!! The radiologist came sweeping into the room and said I had to get a biopsy NOW!! While trying to get a good spot she talked to the tech saying things like "Look, there's a bunch of them wrapped around her jugular, I can't use those." and "There's too many in that area." I was sure I was a goner!! Turns out my remaining bit of thyroid was covered with cysts (benign!) and I had to get it out. Scared the heck out of me while I waited for the biopsy attempt on the nodes in my neck, though!! The radiologist even said "If this comes back "inconclusive" please get it checked again. I'm not sure if I got a good enough sample!"
So I understand your fear and it's so very important to know your own body. Demand answers. If you are asked to wait-and-see after a scan it is just to see if anything grows. The limbo is truly hell. You are not alone. Please keep us posted on your journey here, you are in my thoughts.
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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?
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Hi Rowan- Bone scans are painless- just a little injection of dye then you feel nothing. The easy part of all of this. It would be a good thing to do as it will set your mind at ease.
I sure hope you are fine. Likely just arthritis, it hits in really weird ways. Many of us have that, at a much younger age than expected, after all these treatments.
Good luck!!!! -
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!
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Thanks ladies, hadn't thought of arthritis! Have never had it before, but as you say, chemo does damage. Would arthritis account for the hard lumpy bone?
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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-
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Thank you Mindy for your words of wisdom- I appreciate it!
I will make an appointment with my GP who schedules the mammos, to discuss the inclusion of ultrasound or MRI at least once a year.
Thank you. -
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!!))
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Aww, what wonderful warm sentiments. I will indeed try to be back more to post. In the meanime, wishing each of a you a beautiful, stress-free (as possible) weekend.
I'm sorry we have to be, yet we're all in this together. And you know what they say... STRENGTH in numbers!
The more information we can share with one another- all the better.
Again, thanks for your very kind words. I feel warm and fuzzy thanks to you lovely women!
xxx
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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.
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Hi teacher911, what a horrid shock that must have been for you!! I have appt with BS in a couple of weeks. The lump is still there (really feels hard, like bone?) but not quite so tender. Neck still sore though. I guess I want to wait and hope it goes down/away, because I don't want the BS to think I am a hypochondriac! Anyway, I hope that you are doing ok. Did you have any other symptoms, like fatigue? How did they dx it?
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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.
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Rowan- GOOD luck! (((hugs))))
Laura, who started this thread, how are you doing? -
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? -
I had a BMX 1/20/12 and last winter I felt a lump about the size you describe in my "clean" breast. Mine was hard though, deep, near the edge of the implant at about 9 o'clock. Turned out to be a "surgical remnant," I think a lipoma. It yielded a Birad IV rating, biopsy and a lot of grief for a week. I was told by my MO and the RO doing the biopsy, they would not suspect a recurrence in the clean breast. I was more worried it might be a new primary, as I am brca2+ and even a BMX does not get all of the breast tissue.
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