Recurrence after bilat mastectomy?
Comments
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Katie, it could be a seroma or even lymphadema. Get it checked out by a therapist as your doctor is NOT skilled in the field yet. I also have areas like Kam did that they consider just "normal" breast tissue or even fat necrosis (dead areas). Get checked for your own peace of mind, and if it is LE you can begin treatment immediately and it won't get worse. Let us know how it goes - good luck!
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Thank you! barbe1958! I wouldn't have thought of lymphadema! I'll check into that.
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Hi All. I'm new to this thread. So happy to see this topic & a few of you I've seen on other threads
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I was diagnosed last year @ age 47 w/ IDC in my Right breast after a lumpectomy...had VERY, VERY crazy-dense breasts & it took several scans/stereotactic biopsies, MRI, ultrasounds, etc. to figure it all out. It all started w/ suspicious calcification clusters they thought were Severe Atypical Hyperplasia/Borderline DCIS cuz the stereotactic showed only that... until the lumpectomy. WELL, it WAS DCIS, except right NEXT to it was a IDC tumor <1 cm that NONE of the scans/tests picked up!
Found out ON my birthday, but I had had a strong feeeling it was going to turn out to be more than DCIS.
Decided then to have BMX (my gut just strongly told me I needed to) & THANK GOD I DID! They found IDC (same size /grade) in my LEFT breast, also! After I had found out about cancer in Right boob, I had the dye MRI & stereotactic biopsies on my Left breast w/ several suspicious spots that didn't show up on mammo (super-dense-breasts issue). They biopsied 3 Hot Spots...which showed "stuff" but not cancer/tumors. I STILL decided to do the BMX. Like I said, Thank God I did it. They would NOT have known that I had IDC in BOTH breasts!
It is relatively rare to be diagnosed with cancer in BOTH breasts at the same time. They are 2 separate cancers. It's called: synchronous bilateral breast cancer. Women who have had breast cancer in 1 breast and then LATER develop cancer in the other breast are diagnosed as having: metachronous bilateral breast cancer.
It's true that they don't recommend tons of scans after BMX anymore (for a few reasons--confirmed by several studies)...UNLESS you are symptomatic. I HIGHLY recommend getting the 2012 "The Mayo Clinic Breast Cancer Book" by the breast-health experts at Mayo Clinic Cancer Center. It is VERY up-to-date and explains just about EVERYTHING concerning Breast Cancer AND it also includes chapters on Ovarian & Uterine Cancer & how they relate to breast cancer
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This book has been invaluable to me! It breaks things down, making it easy to fully understand the info. and covers just about anything/everything you can think of...answered so many of my ?'s. I have MUCH of it highlighted/underlined, & go back to it over & over. It's THAT good/helpful.
I bought mine on Amazon--can't recommend it enough!
Also, it seems to me teacher911, that getting a recurrance AFTER BMX isn't that rare, afterall. I just hear stories about it a lot, it seems. I'm guessing the % is higher than they think/realize. I'm sorry that you've experienced this
. I didn't have/need radiation or chemo and I'm NOT trying/taking Tamoxifen...don't want to diminish my Quality of Life after everything I've been through already & I have an aunt who had endo. cancer. I'm stage 1a (no node involvement)...Onco DX scores: 8 & 13. I'm at peace w/ no Tamox.
IF the cancer comes back, I won't freak out & lament the fact that I didn't do hormone therapy...I'll just DEAL w/ it if it does come back. and to be honest, I won't be surprised if it DOES--espec. w/ Bilateral Breast Cancer
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Anyway, just wanted to chime in here! I learn so much from you ALL!
Bless US,
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I have to get a biopsy on an suspicious node they've been watching in my left armpit (cancer side). If it is a recurrence I won't lament that I didn't do chemo or rads years ago as I "bought" 5 years without it!
Violet, what makes you a 1a with a tumour less than 1 cm??? IDC can often be hidden in dense breasts and in areas of DCIS, it's very common. Some women get confused and put DCIS as their diagnosis while the IDC is the real issue.
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Barbe, I'm confused...My sig. line shows IDC...;)
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Sorry, I should have started a new sentence!! Violet, why are you Stage 1a?
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Barb...not sure why you are perplexed that I'm Stage 1 a...? No node involvement...small tumor on each side...Can u explain further?
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I'm also Stage 1a. 1.1cm IDC, no nodes, low risk Mammaprint score. BMX, but no rads, no chemo.
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Violet1--my story is somewhat similar to yours with the synchronus dx, bmx, etc., and i have taken myself off Arimidex after intolerable se's; you mentioned that you are not doing Tamoxifen for the same reason--preserve QofL & i'm wondering if you've gotten flack for that? What did your MO say? i see the MO soon and frankly anticipate some blowback.
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Violet, I'm just wondering at the "a" part of Stage 1a. Normally that would mean node involvement or a larger tumour, wouldn't it? Just curious...don't see where it says both sides, either. Tumours are graded independently of each other.
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MNSusan...same here--no chemo or rads...
BlueTail: My onc is fine w NO hormonal therapy in my case..I've posted on other threads in more detail. My 2nd opinion Onc said I could TRY it...but I am NOT taking any of them for a variety of reasons...;) The decision is up to YOU. Don't let Docs or other people intimidate you...Do your own research and decide for yourself. I choose QOL...& do NOT feel the risk of taking T. is worth it for ME...not just the bothersome SE's, but the Serious SE RISKS...Um, no thank you. I'm not doing any ovary suppression stuff either...;) BUT, I DID get the hell off birth control pills!...(am dealing w my hideous periods again;)
I did initial lumpectomy, then BMX/Recon/Implants...am NOT doing anything else for now, save Nipple surgery (maybe) or 3 D Tats...I don't CARE if others agree w my choices...I'm just glad I went w my gut and had double mx since I had unknown IDC in my other breast!!!! THAT was brave enough for me...no regrets...Sometimes I wonder WHY others only have Uni Mx...but THAT is none of my business...and their decision...;)
So, there ya go...;) -
Barbe, Stage IA is an invasive tumor that is 2cm or less in size with no nodal involvement. Stage IB is the same size tumor but with micromets to the nodes. If there is anything more than micromets in the nodes, then it goes up to Stage II, even with a smaller tumor size.
Good luck with the biopsy of your node!
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So Beesie, then what's a plain Stage 1???
Violet, I was like you - I went for a double mast as well, but no recon. I, too, don't take Tamoxifen or any AI's as I need quality of life to work. IF I get a recurrence, they will try Tamox or an AI as my first "attack". Much easier than starting with IV chemo.
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I also got a DX of breast cancer again after bilateral mastectomy. I was stage IIIb on the LEFT side, did 8 cycles of chemo, then the surgery with expander placement, including node removal on the left side, followed by radiation and almost 5 years of Tamoxifen. I was 2 days shy of 5 years cancer free, when my onc found a lump under my RIGHT arm. I had a PET scan and he was amazed that the cancer was only in the 4 nodes under that arm, and not stage IV. Six cycles of chemo followed by radiation on the opposite side of the original cancer and now I'm on Femara. I had horrible side effects from the Tamoxifen, but haven't had any with this one. I thought that by treating the first cancer so aggressively, that would take care of it (at least in my chest/breast area)...how wrong was I....
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Barbe, there is no more plain Stage I. They changed that a couple of years ago (or maybe 3 years by now). There never used to be any "IA" and "IB", just "I". For those with 2cm or smaller tumors, nodal micromets (or anything more), automatically moved the patient to Stage II. But with research that showed that the long-term prognosis for smaller tumors with micromets is almost the same as smaller tumors without micromets, they made the decision to move micromets down to Stage I. But they still wanted to keep it separate so they created the IA (for no micromets) and IB (for micromets) categories.
Of course anyone diagnosed before this change will keep their old staging, either Stage I or Stage IIA (for those with micromets). But everyone since who is Stage I should specify either IA or IB. I think most people still don't but they are probably all Stage IA, which is the same as the old Stage I.
I need to learn to write more concisely!
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You guys are great Thanks for answering Barb's question...:) Spot on. Irish, that's exactly why I'm not going to freak out if I get a recurrence-- its a crap shoot... like you, I could take tamoxifen and cancer could still come back. I did have a SNB on my R. side cuz they knew I had cancer there after the lumpectomy. However they didn't know I had it on my left side also because nothing showed up on any of the scans or tests (had super DENSE breasts). So that means they don't know for sure if my lymph nodes are affected on my left side. After the BMX, there obviously isn't any more breast tissue left for them to do the SNB on that side...BUT, both breasts had almost EXACTLY the same tumors/size, etc..IDC STAGE 1 a...so Tumor Board felt confident it hadn't spread to nodes on that side either...AND, even though we can't be sure, it would be CRAZY to go digging around now & remove lymph nodes there..lymphdema threat, etc. BUT, yes, it DOES concern me...have to just live w it...:(
Cancer is shitty any way you look at it. SOME people I imagine, would do hormonals because of that UNKNOWN in me...but I'm not willing to go there. Interesting that I figured they MIGHT find BC in my other side even though 3 biopsies showed "stuff"/hotspots & no actual cancer...THAT is why I was/am so very grateful that I chose BMX...and that's WHY *IF* anyone in a similar situation ASKS MY opinion (espec. if they have dense breast tissue), I'd really, really suggest they get BOTH breasts removed...;). PLUS, to ME, it was a way better option than doing a lumpectomy & needing to have RADIATION! I wouldn't do rads unless it was my very last option.
Yet, having said all the above, I honestly will NOT be surprised at all IF I get a recurrence. If I had to guess, I'd bet I have about a 90% chance of it returning...not kidding here...screw the "statistics" helpful as they are...it's just what my gut tells me...There is NO SUCH THING as "cancer free" as far as I'm concerned. NED (no evidence of disease) is SPOT ON to describe our condition...No One can tell us we are "cured"...Ever. I'm a realist...sorry if this freaks some of you out...but I'm a Sraight-Shooter...and don't want to live in denial or La-La Land...;) Yet, I don't fret about recurrence ...I just try to live w HOPE & cary on..
if/when the Sucker comes back, I'll DEAL w it...It IS what it IS, ya know? And I DO pray it doesn't come back for ALL of us...but it's not uncommen--even w BMX...
SORRY this is so long, I just wanted to share because I don't HEAR this around this site much...harsh reality of things because of course, we don't want to scare the Newbies...& that's uunderstandable, prudent even. We want to give them encouragement and hope...I just want to share a wee bit of Reality & offer another viewpoint to whomever may be open to it/able to digest thus now that they aren't a newbie any longer...;)
Bless Us ALL! -
Violet, thank you for mentioning this forum on Calling All Stage One Sisters.
This thread has answered some of my lingering questions. I could have had a lumpectomy but wanted BMX to cut down on my chances of a recurrance. And I see that others who chose BMX did not go for any other forms of treatment. I was beginning to think I was the only one who thought that way. I did not want to risk the chance of any SEs as I am Murphy's Law on two feet. I have to say that I met with a MO before my surgery who down played side effects. She was very contrite and dismissive about them. Cancelled my appointment with her after I met my surgeon and was told everything was good to go and that with that pathology report he did not see the need for radiation or AIs. So I called to cancel my next appointment and was asked if I wanted to reschedule I said no and that ended the call. They called me back later to ask why and informed them that I changed the type of surgery and what my surgeon said. I don't think they liked my response but I figured I am the one responsible for my health.
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Violet, I am a realist too, but was recently slammed for saying that there is no cure fore breast cancer. Along came the arguments that "someones aunt's cousin had breast cancer and died of old age!!" I KNOW!!!!!!!!!!!!!! It's just that breast cancer is a chronic disease like AIDS, Asthma, COPD, Diabetes and such. Why do you think there are still "Run for the Cure" events all over the world??? They're looking for a cure!!!!!!! I was told I sent someone into therapy by saying there was no cure, but I hope I helped that woman grow up FAST. I mean, seriously, how blind can you be?? Especially every October!!! There are Races/Runs/Charities and all sorts of shit FOR THE CURE!!! OF COURSE we might die of something else! We might get his by a bus for heavens sake!!! But we will go to our graves with breast cancer!!
Whew!! That felt good to say!!! Also, I have breasts, and I wasn't "blind-sided" when diagnosed with breast cancer. I WAS aware. The biggest risk is having breasts. I also won't be blind-sided when I get told of a recurrence!!! I'm ready, knowledgeable and prepared. I mean why do we get mammos and Pap smears??? They're looking for CANCER. Simple. So when they find it, why are so many people struck dumb???
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Amen! Breast cancer cannot be cured; it can only be controlled through treatment. Our only choice is remission. Some achieve it; others do not. Cancer, unfortunately, is part of the human condition. I wish it wasn't, but UNTIL A CURE IS FOUND, cancer will continue to plague the human experience.
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Notice that they don't even use the word "remission" for breast cancer anymore??? Too uplifting!! This girl on the other thread said she knew of people that didn't actually die of their breast cancer so that meant it was cured!!! So sad really......I'm not on these boards to blow smoke up anyone's ass or put a rose-coloured pair of glasses on their nose! We need REALITY here so NO ONE will ever be blind-sided again!! I would have thought that NO woman who had ever seen a Run for the Cure would have thought themselves "safe" from breast cancer!!
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You are right, Barbe, there is no cure. Yes, some people die of other causes. So maybe one could say they were cured. Dead but cured. But sadly, generally, if bc goes to stage 4, the best that can be done is trying to prolong life. Eventually treatments stop working and there is nothing more that can be done. If there was a cure, so many of our friends on these boards would not die. Enough awareness. Find a cure!!!
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I feel as though I need to weigh in on this. After dx in 2000, I always knew recurrance was a possiblity, even though not neccesarily a probability. It was not something I thought about all the time, it just rattled around in the back of my mind. So when I was dx'd again last fall, I think I was the only one of my family and friends that was NOT surprised. This time around I will finish up my tx's and go on with life again. I may have another reccurance, I may not. But life is too short to spend my days worrying about it.
I understand not everyone has that attitude about it and some can never get past the fear of recurrence. We all deal with things differently, and that is ok.
As far as a cure goes, I am not sure there is a financial will to find one. BC is big business! But that soapbox is for another thread, another day.
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Kath & all those that recently commented:
I hear ya ALL! But...
I think that the Run for the Cure slogan just means they're trying to raise money for research to one day finally FIND a TRUE CURE...;) I wouldn't want to disparage someone, nor suggest someone not participate in those types of events where they are honestly trying to do their part by participating in functions that help raise money for cancer research...ya know?
However, I'm not too keen on the whole Pink Ribbon deal--but that's another topic & I AM glad that there's been cancer AWARENESS raised over the past several years...with some good solid mindful organizations...;) I'm also not too fond of the term Cancer Survivor--but that's just ME.
Yet, some people feel great HOPE by using certain labels & some of the slogans/terms comfort them. It's certainly NOT my intention to make someone feel badly or ignorant if THEY adopt these terms/labels to describe themselves as a cancer patient. Kindness & Compassion are key here. Ditto for those that have not chosen MY treatment choices but other choices--no MX/UNI-MX/Hormone Therapy, ovary suppression, rads, etc. Everyone has their own reasons behind their choices.
I want ANYONE /other sisters to feel COMFORTABLE posting here! I'm just trying to share Another Point of View--or 10!!! LOL! that I DON'T see VOICED around here much.
So, it's great to be able to vent away and share our views, but I personally want to be careful to not wound another sister who chooses differently than I do. Amen...:) -
Let me play with semantics a bit. (My apologies to everyone who just read that and rolled their eyes!).
The way I see it, there is no cure for the disease of breast cancer. But individuals who have breast cancer can be cured. There's a huge difference.
To me, a cure for breast cancer would mean that anyone who develops the disease could be given a particular treatment and they would be cured, never having to worry about a threat of recurrence or mets. This type of a cure doesn't exist. There is no way that any doctor can guarantee that any single patient - never mind all patients - won't have to deal with a recurrence. And I think that because BC is such a complex and heterogeneous disease, we're unlikely to see this type of universal cure anytime in the near future.
But it's different when it comes to each of us as individuals who've been diagnosed with breast cancer. If someone has a diagnosis that is localized and no cancer cells have moved beyond the breast, and if surgery and other treatments are successful at removing or killing off all the cancer cells in the breast, that individual has in fact been cured. With no live breast cancer cells left in her body, there is no chance of a recurrence. She will live the rest of her natural life without ever being affected by this particular diagnosis of breast cancer (although she could be diagnosed with a new primary). It was treated and she was cured.
So I believe that individuals can be cured. Since the long-term mortality rate from BC is less than 50%, the majority of women diagnosed with breast cancer (not a large enough majority, however) are in fact cured.
The problem however is that we don't have the screening or testing capabilities to tell us whether we are cured or not. If there are a few random cells left alive in the breast after treatment has ended, no screening in the world will find those cells, and over time they can develop into a recurrence. Of if there are a few rogue cells that moved into the body prior to the removal of the cancer from the breast, those cells might sit undetected and dormant for years and then develop into bone mets or liver mets or mets somewhere else. So even though the majority of us are cured by our treatment, none of us can ever know it. That's why so often we hear people say that you can only know that you were cured when you die of something else. If you live the rest of your natural life without a recurrence (and if there is no evidence of the disease in your body when you die), then yes, it turns out that you were cured by your original treatment.
I don't feel that I have a chronic disease. And I don't feel that I have a cancer that is in remission. To believe that would mean that I'd be quite certain that there are breast cancer cells that remain in my body. I don't think so. The way I look at it, I had breast cancer, I was treated, and now, to the best of my knowledge and my doctors' knowledge, I no longer have breast cancer. I most likely have been cured. But of course, I understand that there's no way to know this for sure. So I remain very diligent and I get all my screenings. Recently one of my screenings led to a mets scare. For a few weeks I faced the unlikely but very real possibility that I might not be cured after all. Even though until then I'd thought of myself as being cured, it didn't shock or surprise me; I've always known it could happen. Fortunately everything appears to be fine so now I'm back to believing that I probably was cured back when I was treated. That's what I choose to believe, until proven otherwise. And when I die of natural causes peacefully in my bed at the age of 103, then I'll know I was right!
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Great discussion here, if I could join in, I also think who is NOT "aware" of breast cancer anymore??? for gosh sake, it hits most family or friends, what I want is DO SOMETHING! I agree the finanacial gain for any kind of cancer is astronomical and the big pharma doesnt want to lose it. No I am not suggesting there is not an honest effort to find new things, but really dont like contributing to some organizations because so much $$ goes to administration and that irkes me!
I chose a mastectomy because I did not want to have rads unless there is no other choice and chemo was suggested but such a small % of help I declined it fearing I would experience more long lasting effects from chemo, I did cave in and agreed to take anti-hormanl therapy, have been on for 3 months and not too many se's yet. You are correct.. everyone has to make their own decision, and it isnt always easy, and believe you have done the best for you.
Thanks and good wishes to all here, we need to stay strong and comforting as well.
Linda
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Beesie,
Thanks for sharing your views. I appreciate all the discussion and I respect your thoughts and opinions on the subject. You've obviously thought through this a lot for yourself...:) However, I don't see cancer "cure" in the same way that you do. I think that even when we/the docs THINK all cancer cells are gone, they could still be in there somewhere even dormant, as you said. So, I suppose one could die of another cause, believe they are still NED or "cured" on their death bed (or for a long period of years), and yet STILL have stray cancer cells somewhere in their body that just hadn't presented
yet...Just sayin'...following your comments...;) -
Beesie - love your post. It helps me reframe to the glass half full. It touched the right spot.
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Beesie... I've never thought of it that way. I'll have to do more thinking...
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Interesting about the Stage 1 vs Stage 1a 1b. I hadn't heard about that change. It was just plain ol' Stage 1 when I was diagnosed.
Regarding the original post and along the lines of the "are we cured" discussion:
I've always wondered this... IF they removed all of the tumor with clear margins through surgery and NONE of the cancer cells escaped from the area of the original tumor that was removed (which we never will know).... wouldn't it be extremely rare for regular ol' breast tissue cells to turn cancerous? The reason I'm asking is because most bc's begin development in the ducts or lobules. Since those are now gone...wouldn't it be near impossible for IDC or ILC to develop..UNLESS it developed from a cell that had metastisized and "got away" from the original tumor. i.e. any breast cancer (in the breast area) after a mastectomy would have to be from a recurrence and would never be a new primary?
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I worked for an oncologist. Medically speaking, if you do not have a recurrence in 20 years, an individual is deemed cured.
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