Recurrence after bilat mastectomy?

Thank you! barbe1958! I wouldn't have thought of lymphadema! I'll check into that.

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.

Sorry, I should have started a new sentence!! Violet, why are you Stage 1a?

I'm also Stage 1a.  1.1cm IDC, no nodes, low risk Mammaprint score.  BMX, but no rads, no chemo.

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. 

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! 

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....

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, 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???

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!!

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.

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!

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... I've never thought of it that way.  I'll have to do more thinking...

I worked for an oncologist. Medically speaking, if you do not have a recurrence in 20 years, an individual is deemed cured.