Recurrence after bilat mastectomy?

jmanning, you are wise to let your decision "cook" in your brain. I know you'll have the right answer for you when asked. Remember, it is YOUR decision to make and therefore it CAN'T be wrong!!!

(I hated in school when the English teacher would ask "What is your interpretation of this poem/story/etc?" and then GRADE us right or wrong!! Mark me for my grammar or sentence structure or something like that, but do NOT grade me for what I felt the writer was "saying"!!! Whew! Didn't realize that still bugged me!)

The point is, the decision YOU make is yours to make. By asking others and doing research you are paying "due diligence" to the issue. That's all you can do and that's all that is required. By the time you say yeah or nay you "own" the answer.

barbe, I used to have exactly the same complaint about poetry and literature!  If the poet wrote something in 1855 and nobody knows what he was thinking, how can a teacher tell me that my interpretation of what the poet meant is wrong, and her interpretation is right?  

cdelv66, to me the most important thing about a lumpectomy vs. MX vs. BMX decision is that it be well thought through and that the implications be understood before the decision is made.  We all look at life differently, we all have different concerns and fears, we all have a different way of seeing our bodies and dealing emotionally with breast cancer.  So there can't possibly be one right answer.  What was right for me (I had a single MX) might be completely wrong for someone else.  And someone else's choice would be completely wrong for me. My only concern is when women jump too quickly to their decision, without fully understanding the implications, or if they make the decision out of fear or based on what someone else did or what someone else tells them is best.  I hate reading posts where someone says "If I'd known that my choice of surgery was going to lead to XYZ, I would have picked the other option".  Or any posts, written after the surgery is done, that start with "I had no idea...". I feel so sad when I read posts like that - and there are far too many of them on this board.  So the way I see it, if someone takes the time to really think it through, if she understands the pros & cons and risks & benefits of the alternatives and if she thinks about how each alternative will affect her life, and then she makes her choice based on what's best for her.... then it's best for her.  At that point, move ahead and don't look back!  Don't second guess and don't let someone else's decision cause you to question your own. 

Beesie - I agree with you about second guessing yourself, however, I was one of those people who didn't question my Oncologist when she prescribed RADS as my treatment plan. I have to admit I was so relieved I didn't have to do chemo I didn't think twice about NOT doing radiation. I did do my homework and was aware of the SEs both now and possibly down the road but they were enough of a concern for me not to do them. Frankly, I was afraid not to. Ditto with Tamoxifen. My recurrence rate, according to the Oncotype test, is 8% with Tamoxifen so there was zero chance I wasn't taking it either. IMO I would be playing Russian Roulette with my life. We all make our own decisions and there are no right or wrong answers. We go with what we know at the time. No guarantees for any of us. Diane

I'm pretty sure you'll all agree that way before we were diagnosed with breast cancer we considered "what we'd do" if we did get it. I knew in my heart as I aged, and having so much trouble with arthritis in my neck and spine (and even had a reduction years ago!) that I would get my breasts taken off if cancer showed up. I'd had 3 previous biopsies (first at 21 years old) until the 4th one showed "dirty margins" and the cancer diagnosis. "Take them off" I said and did. It wasn't a rash decision. I mean, seriously, we go to get a mammogram. For what? To check for breast cancer. Okay, here I sit, now, what if they find it? What would I do???

It's when we discuss our choice with others that they try to sway us to their thinking. Nope. We know deep down what is best for US. 

Beesie~ I'm for educated decisions, not gut decisions or instinctive decisions.

Rest assured that even though my instincts told me to get a BMX, in no way does that mean I didn't educate myself with ALL the options available to me or weigh ALL the pro's & cons to each one.  In the end, I don't want any regrets or have to keep asking myself the "what if's".  I truly believe it is an individual decision and when friends of mine went through it - I was one of the many saying that I would definitely do the Tram Flap...well, lo and behold, now that I'm facing this decision, I realized that was not for me!  

"Hmm, Beesie, I was "assuming" that as adults we WERE making educated decisions."

Yeah, I would have thought so too, but after 8 years on this board, I realize that this isn't always the case.  

And just in case I need to clarify this, I'm not referring to you, Barbe, or to anyone on this thread or even to anyone who's in my mind. I'm making a general comment based on having read thousands upon thousands of posts on this board. I've seen too many women who are surprised after the fact by something that they should absolutely have known before they made their decision - not something obscure, but something really basic. I've seen too many women explain their decisions with facts that are completely untrue. And there are many women who acknowledge themselves that they made their decision quickly without thinking it through and understanding the implications, or they made their decision based on what they were told to do, or based on fear, or thinking that something was true that really isn't.  Lots of women on this board have admitted that they did not make educated decisions. The shock of a breast cancer diagnosis can do that to you. It has nothing to do with smarts or ability. It's situational.

Many women - probably most - do make thoughtful, educated decisions.  But unfortunately, many don't.

I don't believe in the states you have to go before a tumor board for a mastectomy.  It's our own choice.  I had to have a mast due to a recurrence in the same breast, but I told my doctor I wanted a bilateral no matter what.  My choice was my choice, and I was scheduled that same appointment for surgery within the same week. Possibly those that have hmo types of insurance are at the mercy of  a board and their doctor, but that is the reason I don't choose an hmo as my insurance type. They are known for telling you what you are approved for and what you can't do.  They force referrals before you can see a specialist.  I go to anyone I want at anytime. 

When I need approval for a test (mri, cat scan, etc), they tell me.  There is no approval needed for a mastectomy.  There is a diagnosis of cancer and it strictly between the patient and doctor what type of surgery is chosen.  As I said maybe with an HMO type of insurance this is the case, but I don't carry that type of insurance.. And when I need approval, I get it in 1 -2 days.  They usually just want to hear why the doctor is ordering it.  I've never been denied any sort of test.  again, though I have good insurance.

mittmott - Right on!!  I too will not go with an HMO for exactly that reason.  And because I can choose any doc any time I want.  

Barbe - Love your doc's sign.  I often ask my docs what they would do or who they would refer to if it was their Mother or wife.  Luckily I seem to have a great batch of docs who all understand the question in the spirit it was asked.

Barbe, when I have my annual physical, I get tested and checked for many conditions and diseases that I don't ever expect to get.  I get my Pap test - and I know that I'm getting that test to check for cervical cancer - but I'll be shocked if I'm ever diagnosed with cervical cancer. 

Unless prompted by specific symptoms or concerns, most people get their screenings to check that they don't have the diseases and health conditions they are being tested for, not because they expect that they do.  So I completely understand why many women who have mammograms are blind-sided by a diagnosis of breast cancer, and had never previously considered the possibility.  It seems perfectly normal to me.

Edited for typos only.

After years of having mammos that are perfectly fine, most women don't expect the call-back or the diagnosis of breast cancer.  They are blind-sided.

Barbe, you and I, having started our breast adventures at such young ages, and having a history of call-backs and biopsies, are the exception, not the norm.  We both had years to think about it and get prepared; so many women are hit by surprise.  And while you are right that the biggest risk factor for breast cancer is having breasts (and the second biggest risk factor is being a woman who is getting older), most women think that family history is the biggest risk factor.  So if they don't have the family history, they don't worry about breast cancer and maybe even think they are immune. 

You were prepared.  I was prepared.  We aren't normal, at least in that regard. 

barbe...

I don't think the "awareness" is focused enough to do that. Most women do still believe that no family history = minimal to no risk. They get their mammograms...because the awareness campaign tells them to...but I sincerely doubt most believe they will get cancer. And the reality is most won't. Nor do most know the limitations of mammograms, so are stunned that a cancer can show up weeks or months later. The "awareness" campaigns actually even seem to instill the wrong message...that mammograms will prevent cancer (this is discussed in Pink Ribbon Inc). How often does a newly diagnosed women hear "well, were you getting mammograms?". My own mother did...and yes she was getting rigorous screening! So...I have no doubt some women go in thinking they are "preventing" cancer by doing their screening. 

Beesie mentioned pap tests...well, unlike mammograms this really can be a preventative. When I had abnormal cells/pre-cancerous cells found during a pap 15 years ago, they could...and did...treat and remove the pre-cancerous cells after a few treatments. I still go for paps every year; I would not be shocked if they found pre-cancer again because of that history, but I would be shocked to find out I had cancer. Why? Because I go for screening every year and pap screening is both diagnostic and preventative. I have had normal paps ever since and expect things would be caught in a pre-cancerous stage again. Colonoscopies are like this too...they can remove polyps and pre-cancerous lesions as they are in there so it can be both diagnostic and preventative. Mammograms are NOT like this. They are diagnostic only...and I think many women for some reason get the wrong message.

I have a strong family history. I am high risk. I have spent almost my entire life expecting that my future will follow the family pattern...that I will get aggressive cancer in my mid to ate 40s and be (likely) dead by 60. I go for mammograms annually, have very fibrocystic breasts with all sorts of pains and lumps, have had callbacks for US (no biopsies) qualify for US and MRI screening. I can tell you that while I do know there is a risk of them finding an occult cancer during my upcoming PBMX, I would still feel shocked by a cancer diagnosis coming out of it. Why? Maybe because it would not fit my family pattern as I am still about 10-15 years younger, because I am doing this to prevent that situation, because I know it is a possibility, but for me it is not expected at this time, because though I know mammos are limited in my case due to density, my last two (in last year) were clear, because breast exams by myself and 3 breast surgeons in the last 6 months have not found anything...etc. I think I would be however less shocked if I found cancer in my remaining tissue in 10-15 years after my PBMX because that fits more with my family pattern and the story I have had all my life. 

So....I can absolutely see why a woman who has no family history, might be very shocked by a cancer diagnosis after her mammogram...be it her first or 15th. It does not fit her internal story, it is something that happens to others not her, because most women still do not know the biggest risk factors are being a woman and age; and believe that their running marathons, and eating vegan, and avoiding alcohol, and having 4 kids before 30 and breastfeeding them all. means it won't happen to them, and so on. 1 in 3 women will get a cancer dx in their lifetime, and 1 in 2 men, and it seems that in most cases people are shocked by a cancer diagnosis anyway when yes, logically they really should not be. 

Oh, and those who have little direct experience with cancer sometimes expect to FEEL something...be if a lump, or to feel ill or rundown, if they have cancer. Their only experience may be with people who are ill from treatments. When they pop in for their annual mammogram, feeling and looking just a good as always if not better, maybe even training for a marathon, and just planning to get their "a-ok" for another year, a diagnosis can indeed be a shock!

Barbe, what I can tell by a big percentage of the "not diagnosed" posts is that all awareness has done is convince a lot of women who do not have even the most basic knowledge about their bodies or what is normal that every lump, bump, zit or rash means they have cancer and need a mastectomy or are going to die.

I'm amazed at how ignorant a lot of people are. They don't seem to find the 50 sites with all the information that tells them what they are experiencing is absolutely normal, but they can sure can find a breast cancer site.

barbe...that was my point...mammograms are "diagnostic" (at least in terms of indicating something looks suspicious) but not preventative, and many women do seem to confuse this. AND they are not very effective diagnostically for many women with dense tissue. Sure, your mammos might have been showing changes for years, for others, those changes can hide for years until suddenly it is not just architectural changes but a cancer tumour that shows up during their annual visit. Totally clear one year to a cancer tumour the next. For someone with dense breast tissue, mammos might only see 25-50% of cancers....never mind finding architectural changes for years before! My mammograms show density nearing the 75% mark, I look at my images and realize that it is like looking for a polar bear in a blizzard. And this is with digital ones! 

How many women ask for the full radiologist report? I do, but I have to ask for a copy or else I do not get it...I just get their letter giving me an all clear until next year. My actual rad reports over last 3-4 years have added that my density can obscure malignancies...but not the letters...but how many know this? How many know there IS a full report they can access? How many women have written here that later they found out the radiologist had been watching an area for years but never said anything? Nor did their primary physician?

My mother was diligent about mammograms, well, she ended up with lobular cancer. Not found until it was over 6 cm and in 19 nodes. Mammos never saw it. Not even after it was found. I can't say she was surprised by her diagnosis given family history and she was the same age as her mother was when diagnosed...but she was stunned that her mammograms for the last 5-10 years...heck 25 years since she started having them...had not shown a darn thing. This included the mammogram 3 months earlier.  My grandmother had a similar experience in the early 1980s but with an IDC.

So, you did know for years or architectural changes. This may be due to the makeup of your natural breasts, the skill of your radiologist, a team that cares to inform you....maybe this allowed you to be mentally prepared for those changes to become cancer...but this is just not everyone's experience.

cdelv...that is great you can get your medical records online including your mammo reports; can't do that around where I live yet. Obviously I can request my records, but I can't just see them online...that would be nice! 

I am glad where you are the laws require the reporting of density...there has been a campaign (check out the website areyoudense) for this, but these laws are still not everywhere. I know they have been around in Connecticut for a while - and in CT they also require insurance companies to pay for US or MRIs for women with dense tissue...but most states do NOT have any such requirement. Up here in Canada, I am not aware of any province that requires disclosure of density. It certainly is not "disclosed" to me, unless I get a copy of the actual report. The letter I get in the mail says nothing about it.

Yes, the "goal" of mammography is to detect cancer at the earliest stage, unfortunately there are severe limitations to this (density, as stated, really can actually HIDE those changes - especially subtle ones - that the radiologist is looking for!) and as many unfortunately find out, "earliest stage" does not necessarily mean easier treatments, or treatments followed by a future without cancer.

This is not to say mammos have no use. They obviously do detect changes and early-stage cancer in many women. It is just I think many women in the "general population" do not understand the purpose, and limitations, of mammograms. Heck, not even a lot of doctors do. My family doctor had no idea until I brought in info that mammograms have a big "failure" rate for detecting cancer in dense tissue. There are other screening methods available that women should discuss with their doctors, but these also have their own limitations.