Recurrence after bilat mastectomy?

So that above is a sarcastic RANT!!!! I never said ALL women should experience life just exactly as I did. And I would pity you all if you did!! I was just giving credit where credit is due. To those who educate themselves about what is being done to them.

I have little patience for conversations like this going on and on and on, when we are all just posting our opinions, thoughts, comments and random trails. Nothing is carved in stone, ladies. Let's move on!!

Barbe, 

I am not sure why you are so offended as to write that rather terrible rant here. There is a big difference, in my opinion, between being aware that mammograms "can detect cancer" and being personally prepared for a cancer diagnosis; and I do not understand why one cannot still be be educated...and still describe oneself as being "shocked" by a diagnosis. But no, now they are ignorant of their bodies?

I come from a family where breast cancer has left a devastating history. I am hardly ignorant of it. I have dealt with anxiety the majority of my life over it..not only for myself, but my family members. I worry almost every single day about what will happen when my mother goes off her AIs. The knowldge of my family risk of BC has, over the course of years, caused much stress, disorder, and fear. I am choosing to remove what, as far as I know, are healthy breasts in order to stop the horrible cycle. You bet I have thought a LOT about breast cancer. I can't help it. I go for my mammograms and acknowledge they *may* find an issue...I am classified as high risk...however, I would still be very surprised by a cancer diagnosis at this point in my life. Not only due to my age, but because less than 2-5% of PBMXs come back with cancer in the pathology. Sure, I could be in that minority but out of sake of sanity I try not to always put myself ahead of time on the losing side of things and I am unlikely to be in that group. Would I deal with it? Yes, but I would have no choice to...that would not take away from the shock of it. I don't think the fact I would be surprised makes me in any way ignorant. Indeed, I would be willing to be that when it comes to breast cancer, and possibilities of risk, I am quite damn well educated. Unfortunately some of that has come because of significant losses in my family, and a drive to understand and make choices for myself. 

If you were never told about your changes until your diagnosis, I am not sure why you brought it up as something that was known to you for years beforehand or as indicating mammograms would detect those changes? Maybe they did for you but this is not the case for all women. My mother had mammograms every year from the age of 25 to 47...not one biopsy ever. Not one suspicious lesion. No atypia of any sort. No calcifications. She was diagnosed just after turning 48 with a 6+ cm tumour, and ended up with 19+ nodes out of 20. 

It is also rather presumptive to assume that everyone has access to the same information as you do. I can bet you plenty of young girls do NOT know much about menstruation before they get their period, for example. That again does not make them ignorant...it means the information was not passed on to them...or more specifically, the correct information was not. I don't know why you would expect a random 8, 9, 10, or 11 year old girl (because yes, many girls do get their periods at 9 or 10 these days; I was 11 though I was fortunate to be in a system that taught decent sex education which many do not) to be "educated" about her future period if she has no access or idea that is information available to her in the first place. Not all cultures, schools, or parents provide the same sort of information you yourself might have had access too.  Not even in 2014.

My "bad" pap smear came back when I was 16 years old. So yeah, I have to say I was hardly "prepared" since I had it done as I wanted to go on birth control and it was a requirement at the time I had a pap first. I certainly did not expect that my first or second pap smear ever would give me "pre-cancerous lesions" at 16 years old, and I found myself at the time just going along with whatever I was told to do for treatment because I was 16! I knew nothing about the risks of pre-cancerous lesions, or cervical cancer, or that I would be dealing with that at 16! At 16 my mind was not on worrying about cervical cancer, and why should it have been? 

Your rant may have been a sarcastic rant, but it sure also seemed incredibly prejudiced (really, "Hicksville, USA/Canada?"), and lacking much compassion, or acknowledgment of individual experiences or backgrounds.

Yes, Barbe, you sure can.... Your truth and opinion need no explaining or defense. It is odd when I find myself in the same position. I will make a statement (even adding a qualifier that this is MY thought and opinion) and it is off to the races...I am all for healthy debate of ideas but NO ONE PERSON IS RIGHT for anyone but themselves. My decision was right for me...I hope. That is about the truest statement I can make. I do know this to be true....doctors, both bad and good, will often advise whatever is the current trend, then after the fact, admit their honest GUT feeling. What works for one, be it treatment or attitude, may not for another. I am emotional in speech and action, but if I put on my researcher hat I can really sound professional...I write for a living. I choose not to do that here as it is dangerous in my eyes. If I sound like an authority and somebody listens to me and then it fails, well, I could not live with myself. Even subtle speech, delivered from that mount on high can scare and push someone perhaps into doing what they hear.

There is a dear woman across the street from me, whom I think is a bit touched in the head if the truth be told, and when she learned I had a mastectomy she totally freaked and asked why I chose to mutilate myself when she, with a somewhat more advanced diagnosis, chose the lumpectomy route. After the shock registered I calmly bit my tongue half off and gathered my thoughts or I would of knocked her out! lol. Isaid well, I feel good with my decision and I am glad you are happy with yours. She still didn't get it. And you know what, she never will. And that is ok too. 

I just met two wonderful women from the board in NYC for breakfast and I can tell you this. We all three approached our BC differently and there was no discord among us. Nobody was right and everybody was right. No picking of words, no holding back blurting out what we felt. It was refreshing and honest and open. 

To me, that is what this board is for. Sometimes we offend, sometimes we make others laugh. We have furious falling outs, think some are fools, feel compassion and understanding, etc., etc., etc. One thing brought us here. No matter what our story is. I don't talk much about BC in my day to day life as I did not want BC to be my definition. When I can nudge someone to have an issue checked out or refer a doctor, I do. I share my story sparingly in the outside world much like I do about my son's autism, my mother's dementia, my separation, etc. Because they are all parts of me but not all of me. If I let them be, then, well, I lost.

Have a great day:)

Annette!! I haven't seen the goat for ages!! Where have you been!!! That little guy always brings a smile to my face...

SnS, I agree, but am surprised by your comment: As many have said, I was not expecting it because I have always taken care of myself, and didn't push the "risk factors."  You do realize that it's not something we did or didn't do that brought cancer to us, don't you? 

I have been..........dancing as fast as I can:) But I realize how much I need you all in a way that nobody else can fill. Unless you have been *there* nobody really gets our journey. My breast cancer surgeon told me this in response to my WHY? WHY? WHY ME?..."...bad luck." Incredibly, it was the most wonderful answer she could have given me. And the truth of her words has been underscored on these boards. Genetics, lifestyle, environment....then toss in our own dna-what makes BC bloom in one will not touch another. Like most diseases. I recently had my first colonoscopy and nobody quite got how freaked out I was. My dad passed from it 24 years ago. Then waiting for the results and being told precancerous polyps removed be back in three instead of five. Yeah buddy, my heart and brain took awhile to calm down and just tuck that fear back down where it doesn't shade my every moment. My little goat is who I wish to be and how I want to live my life...taking that leap of faith.

well I guess I get to join this group. I hesitate to respond here because of all the recent discussion but I need a home for a bit. I had bilateral mastectomies in jan of 09 with expanders placed. I went on with 6 rounds of TCH followed by two implant exchanges, removal another surgery to clean out the area and then 3 surgeries for free flap. I found a sore lump last week at my mammary fold (where the underside of the bra sits and I went to the onc the next day. At that appointment I had an ultrasound and a biopsy and I got the call that it was positive. The receptors are the same and now I wait to have a PET to ensure that it's a local recurrence. 

My entire oncology group is baffled. I am just angry, sad and very scared. I left no stone unturned the first time and I feel like after 5 years this make no sense. 

thanks Bren it really has been rough on me. I am so sorry that you are rare . 

Jaimie:  I turned out to be just where you are on the 'anniversary' of my 2nd year of NED.  I KNOW how devastating this is.  As Barbe says - we're here and sending calming thoughts or we're hear to listen to you rant.  Let us know how your progress. 

so my PET on Friday showed that it is just in the breast. I am meeting tomorrow at 8am with a breast surgeon. It showed the size of the mass as 2cm x1cm and that .7cm appeared to be idc. So I was given options lumpectomy and rads, lumpectomy, light chemo and just herceptin followed by rads, or lump, ac perjeta and herceptin followed by taxol herceptin and perjeta then rads. I am leaning towards the last option just to hopefully never see it again. My tumor doesn't appear to have any angio lymphatic invasion but I am still furious but working thru it. 

lumpectomy is on Wednesday and while in surgery a port will be put in. I am preferring not to think about the port right now. . I have a love/hate relationship with ports. 

Thanks Barbe  

I too was recently diagnosed 10 years after bilateral mastectomy for DCIS.   Docs are calling me a rare special case as well, one even saying "Why are you here" you had DCIS and did double MX.  But here I am.  Currently finishing up TCHP x6 and then onto radiation along with herceptin and perjeta every 3 weeks.  Pet/CT scan in December was clean,  1.7cm mass removed IDC.  Tumor was Grade 2.    Docs are telling me Stage 1 but treating more aggresively.  Beginning to sound like the 1-2% is more than that.  im still having a hard time as none of this makes any sense to me. 

Sue, Being "special" in this case is not so fun!  I am so sorry that you are back here too. Glad you have made it through TCHP. Hopefully rads will be easy on you.

I'm sending you hugs and know that you will be in my thoughts.

The best way I can describe where it was found was closer to the inside of my arm on my side as opposed to my breast area.    If you go straight down from you armpit and straight across where nipple would be.  Surgeon who operated on me 10 years ago did the lumpectomy and said that I had breast tissue that extended outside of his original surgical margins, so essentially this was untouched by the original surgery.  So my dilemma is recurrence or new primary.  4 out of 4 docs saying new primary cause it went from DCIS to IDC,  surgeon says it was not in the chest wall.  Pathology says it was not in the skin.  But because I had mastectomy first time around have to treat aggressively treating me as locally advanced but believe it is Stage 1.  Just completed TCHP yesterday.  However they are leaving me on Herceptin and Perjeta for at least 3 years if not longer.   Plus I start 30 rads on the 23rd.

Sue