Feeling "fooled"...

Wenweb, to add to your post….from what I've read "density" is judged at a cellular level, so even though my surgeon can feel a difference in my breasts as I approach menopause (they feel less lumpy to her), they still show up as very dense on a mammogram and on my last biopsy (6/13) the guide wire got stuck in the tissue because it was so hard and they ended up having to take more tissue than planned originally,  Density can also decrease naturally as part of the aging process when you go through menopause although my surgeon does not think that will be the case with me.  I'm very thin and small breasted.  I just don't have a lot of adipose tissue to work with so I'm not expecting to see much of a change as I age. 

An MRI is only as good as the person reading it. There is a freestanding MRI center where I live. I often wonder if it would be a good option if I should decide I must have one & my insurance won't pay. I would find out the doctor's name at the center & do some more research. Perhaps it will be the same doctor who would be reading your MRI if you had it at a hospital or clinic. Surgeons consult with radiologists who read MRIs. So the center needs to be more than a money mill. I guess I'm just suspicious about the free standing MRI center nearby.

wyo - When you call it the 'nanny state' you have already turned things into an ideological political battle that I don't think that most of us want to get into here. I'm guessing that many more of us are concerned with whether our country, medical system, individual docs, etc. are working together to help cure this & prevent future generations from going through it. 

Personally, I am really not concerned as to whether my information is being used 'individually' because what HIPPA (also legislation from the nanny state) does is prevent is the disclosure of my individual information to any potential employer.

I was informed many years ago as to the fact that my Hep C status was reported, none of my employers know about it and they certainly don't know or care whether I have dense breasts or not. I have worked in journalism - you can't just 'get' this information - it's not a matter of public record.   

I was really surprised to hear the words "dense breasts" applied to my soft 64 year old pair so I'm glad to hear it's not something you can feel but something on the cellular level.

wyo- Appreciate your input especially since you work in health care. My intention is not to stir this up but you brought up good points. I know many people are not concerned about their health information being shared. But I am. 

I have seen my "private" HIPPA protected information breached when a laptop containing health information, social security numbers, etc. was stolen from an  employee's car. Just because information should be secured doesn't mean it is. 

The cancer survey from the state that came to me had my name and address on it. So any answers I gave would be connected with my name. And once health information is disclosed to a non medical entity I don't know if it is protected. No one else in my cancer support group received a survey. 

As I work for the state from time to time and I do not want my cancer status in their data base. 

Employment discrimination is real. If an anonymous survey had been sent, I would have had no problem filling it out. 

lintrolled - That is reassuring.  

This is a different direction but I want to mention that we each have the right to review our own medical records and I have done so many times for different reasons.  Every time I found gross inaccuracies that required correction and one time it led to a dismissal of a huge hospital bill.  In one report it stated that I "broke my ribs from drinking ammonia".  HUH???  In reality I developed pneumonia after breaking a rib.  In the 2nd instance I received a huge medical bill for a hospitalization that occurred over a year earlier.  Because it was so delayed I was unable to submit it to insurance.  I asked several times for  an itemized bill that they never produced and so, I marched into the medical records office and requested my records.  One part of the record they could not "locate" and the other part showed instances where the attending physician complained that the nursing staff had not provided me the treatment required according to his directives.  Once the proper care was finally administered, I recovered well.  Interestingly, I received a letter from the hospital apologizing for the inconveniences and zeroing out my balance.  I never asked for that.  I was certainly willing to pay what I owed.  They zeroed out a bill that was tens of thousands of dollars.  Retrospectively, I assumed they were less concerned about me snooping around and more concerned that it would lead to an insurance fraud investigation by BC/BS opening them up to question of not only my bill but others as well.  

I go through life assuming incompetence and being pleasantly surprised when people do their jobs well.  I know privacy breaches happen all the time.  I assume information gets out that should not.  But because I assume so many worker bees are incompetent, I also assume that the systems are disorganized.  Is my information out there?  Absolutely.  Is there anything I can do about it?  Not enough.  I worry more about things like identity theft than a disorganized employer accessing tightly controlled personal information.  But that's me.  

Shortly after my first diagnosis and mastectomy I got a letter from the Cancer Society. I got all   excited thinking it was an offer of help or a list of resources I could contact or maybe just a condolence letter (Hallmark-style) but no-----it was a request for a donation!

And here I was wondering how I was going to pay for my share of the bill; newly divorced and my first job in 10 years ( very low-paying),

Luckily I had lots of support from family, friends and co-workers and I managed financially too.

But that request for a donation really rubbed me the wrong way!

 "I'm guessing that many more of us are concerned with whether our country, medical system, individual docs, etc. are working together to help cure this & prevent future generations from going through it."  Just wanted to say, thanks, Ziggy.  I completely agree. 

I have dense breasts, and after numerous mammograms, I was totally unaware of that fact.  When I was diagnosed with BC, I collected up all of my information over the years to provide to the BS and MO.  Doing that, for the first time I saw the reports my physicians had seen over the years with the lovely disclaimer -- "patient has dense breasts so this mammogram can't be relied on".

Say what???

I applaud those who are fighting for the state laws requiring that we be told we have dense breasts.  No doubt, there are numerous parties who oppose the legislation because if women know they have dense breasts, they will be demanding ultrasound in addition to mammogram. 

I just received my Berkeley Wellness letter today and it has an article about the new legislation being passed by numerous states.  It states:

"Some research supports additional screening. For example, in a large study from Yale University that was conducted in the first year of the law’s enactment in Connecticut, additional ultrasound screening in women with dense breasts detected 3 cancers per 1,000 women— cancers that were missed on mammograms.

And a study published in the Journal of the American Medical Association in 2012 found that ultrasound, done after an annual mammogram, significantly increased detection of invasive breast cancer among women who had dense breasts and at least one additional risk factor for breast cancer, such as family or personal history of the disease. MRIs also detected additional cancers."

Now, some may say that finding 3 additional cancers in 1,000 women is not worth the effort -- that it is just too expensive and impractical to provide an ultrasound to every woman who could benefit from one.

That reminds me of the old story about the man walking along a beach where thousands of clams have washed ashore.  The man is methodically picking up one clam at a time and tossing it back in the sea.  Another man comes along and says, "You can't possibly throw all of the clams back and save them, so you are wasting your time because your effort doesn't matter."

The first man picks up another clam, tosses it into the sea and replies, "It matters to that one."

Same with sonograms.  If you are one of the three women in 1,000 whose cancer is found at an earlier and more treatable stage due to an ultrasound, the extra effort and expense needed to make sure you got that ultrasound really, really mattered to you.

I am fully in favor of the legislation many states are now passing.  And, quite frankly, I thank God for the so-called "nanny state"!

Personally, I feel that for years I should have been having U/S along with mammograms due to breast density and family history.  

I have stage 1 cancer in my right breast, left breast benign. .6CM grade 1. No chemo/double mastectomy. I was wondering what to expect as far as follow up. I have to take Anastrozole because I am ER+. My doc seems more concerned with following up on the bone density and how I am handling the drug than anything else. While I know this is an important issue, I have heard that others get blood tests every three months to check for cancer in the blood and I would like to have someone do a breast exam every so often to make sure I am not missing anything. I thought the first 5 years was when you are checked constantly. I ask the Onc nurse about it and she said that I would have MRIs and mammograms if I have the tissue, which I am pretty sure I don't. I don't know if I am being inpatient here but I kind of feel like since I had a early stage I am on a ship alone. Has anyone had this happen to them? Is it just a matter of pushing the doctor for this follow up treatment? Thanks for any help you can give me. I have received great care up until now and am the type that wants to have all the advantage I can against this disease, as do we all.

Hi ICanDoThis.

Did you have to take the hormone inhibitor also? What was your experience like with that? I am fearful about the side effects of that. Thank you for your reassuring words. I really needed that. I think I will talk all of it over with my doctor. Hope you are well.

I'm having a really hard time lately. That article going around this site about heterogenous tumors and the one the moderators just posted about young women with luminal A being twice as likely to die are both sending me into a tailspin. My doctors are so optimistic but I feel like I am doomed to die young ( I am only 39). There are so many women here who were early stage and now are Stage 4, I feel like it is inevitable that I will be there too

Also they did not give tamoxifen to her either. Not sure if they had it back then or not.

Kathy, your docs are right. With you DX, the chemo is more likely to kill you than the cancer. Seriously! If the cancer is more advanced, like mine, those odds change