Feeling "fooled"...

Aviva - According to your timeline it looks like you got a nasty surprise from your lumpectomy pathology. Me too. Sucks.

I recently switched facilities where I receive my mammograms. When I received "the letter" they recommended an MRI in 6 months (in between my now yearly mammograms) because I have dense breasts.  I can only guess that an MRI is more reliable for picking things up if you have dense breasts.  I also have never met anyone that does not have dense breasts 

I had a screening mammogram, a diagnostic mammogram a week later, and two weeks later, an MRI with contrast, specifically looking for anything else in the non-cancer breast before my mastectomies (one was prophylactic.)  They ALL missed widespread LCIS in the "non-cancer side." It was discovered by the pathologist later. I was shocked that it had been missed and mad until I found out how common it is to miss LCIS and ILC in dense breasts.

20+ years of mammograms.......The form letter sent to me by the radiologist always said something like "Congratulations. Your mammogram was normal...........Get another in a year"  Later  it was changed to every 6 months. The mammogram reports the ordering physician received mentioned "very dense breasts" It used to be called "severe fibrocystic disease". The MD copy said something like "mammograms aren't all that helpful in finding abnormalities with breasts this dense" but it still said to get another one in a year/6 months. I requested medical records for some other reason 20years ago & discovered the difference. If they didn't intentionally try to fool me, maybe they just misled me.

dogsandjogs- noticed you are in CA- it is law there they have to notify you- I got the notification as well as a copy of the CA statute and a state publication too- OMG they have to document they gave it to you to.  I think it is a good thing because forewarned is forearmed but I am not interested in the State of CA worrying about my breasts- that is between my healthcare provider and I- too nanny state for me

Thankfully, the BS was extremely forceful in my never having a regular mammogram again, even if I'd not had BC, due to the density.  No, I'd not been told about it before.  He recommended that I should have been having Ultrasound and MRIs instead.  The wording in the mammo report put me into the 50-75% range, although he said I was in the top of it.  I made sure my Cousin knows about these wordings so she can check her mammo reports.  She's got massive breasts although narrow back and still very dense at 57.

Mine are (oops, were) still very dense at 64.

I just have little breasts, and at age 59 having been in menopause for 10 years, they are still considered dense.  They don't and never have felt "dense" to me, but one of the radiologists who reads mammograms brought me into her office a couple of years ago to show me the difference between dense and non dense breasts.  Dense breast tissue shows up dark on a mammogram where non dense breast tissue show up light.  Lumps and bumps show up dark on a mammogram, so you can imagine the difficulty of finding a very small lesion in a large dense breast.  I think it's a good thing that they use MRI's in addition to mammograms for both diagnostic and additional screening purposes.

dogs and jogs- when I had a high deductible,I learned that different facilities in the same community charge drastically different amounts. A BSGI (breast test) costs $500 at one hospital and $2000 at another. Places that just do imaging outside of a hospital are cheaper here. As I had to pay out of my pocket, the difference in price saved me a lot of money! MRIs here are about $2000. $6000 sounds really high! Hope you get yours approved. 

teacher62, welcome!!  The Onco Type DX is a good test to have.  Ultimately, it can give you peace of mind.

dense breast story ~ I didn't have my 1st mammo until I was 50 it was in Sept 2012 & I was called back for a check for some spots on the left breast - was for some reason surprised it was the LEFT breast as I felt a kind of hardness on the RIGHT breast that I hadn't noticed before, but I didn't pay much attention to it since I had just had the mammo. That was in Jan 2012, all clear on the remammoed LEFT, then by late April I was very sure that there was a hard lump on the right breast. PP said "Oh my God - that's the biggest lump I've ever felt." Mammo done 2 weeks later, showed nothing, had ultrasound with biopsy done right after mammo, bent 5 needles because breast density, told THAT day that it was cancer (before biopsy results even came in) . Nine cm rock hard lump (basically my whole breast) and multiple positive nodes that did not show on mammo even when they knew their was a huge lump, but did show on ultrasound. 

Then they decided again that there was 'something' in the left on the mammo & had an RI guided biopsy that resulted in being in the hospital with a huge hematoma as they hit 'something' - that side B9, however.

dogs & dogs - maybe ultrasound rather than MRI if insurance won't pay ?  

Ziggy, you're absolutely right about cancer registries and the good they've done in noticing trends such as cancer clusters, identifying possible environmental factors, etc. Cancer is considered a public health issue and registries have helped target SEER data, identify areas where treatment disparities are more likely, and cultivate the data that can be extrapolated to better identify population groups that are more likely to get certain types of cancer (there are many examples, but the Triple Negative/BRCA connection hits particularly close to home for me).

Wyo and Georgie: below is a link to California's Cancer Reporting website's section on HIPAA and I copied and pasted their answers about a couple of related questions. I hope this helps.

http://www.ccrcal.org/Cancer_Reporting/HIPAA.shtml...

IS IT A VIOLATION OF HIPAA FOR A COVERED ENTITY TO REPORT INFORMATION ABOUT CASES OF CANCER TO THE CALFORNIA CANCER REGISTRY?

No. Reporting information about cases of cancer in accordance with the requirements of the California Cancer Registry authorizing statute and regulations is permitted by HIPAA. The Privacy Rule contains a specific provision authorizing covered entities to disclose protected health information as required by law. See 45 CFR sec. 164.512(a)(1). In fact, penalties for failure to comply with state reporting are specified in state law and often consist of significant fines (California Health and Safety Code, Section 103885(f)).
(Note: Covered entities include health plans, health care clearinghouses and health care providers who conduct certain financial and administrative transactions electronically. These electronic transactions are those for which standards have been adopted by the Secretary under HIPAA, such as electronic billing and fund transfers. More information on covered entities can be found at the HHS website:http://www.hhs.gov/ocr/privacy/hipaa/faq/covered_entities/)

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DOES HIPAA REQUIRE COVERED ENTITIES TO OBTAIN WRITTEN AUTHORIZATION FROM THE INDIVIDUAL BEFORE REPORTING PROTECTED HEALTH INFORMATION TO THE CALIFORNIA CANCER REGISTRY?

No. The provision of the Privacy Rule authorizing disclosure of protected health information as required by law is an exception to the requirement for written authorization. See 45 CFR sec. 164.512(a)(1).

Warrior, I don't know if the "denseness" is still an issue with the tiny bit of breast tissue we have left. Good question. I'll ask my oncologist. I want to know too. My oncologist said I would not be able to develop LCIS or DCIS in the remaining tissue because it didn't contain ducts or lobules which are needed in order for those two to grow. However, I could get any of the other kinds of breast cancer there, so that was the reason for additional checks every 6 months. I don't know if dense breasts make other kinds of cancer harder to diagnose too. Maybe someone here with one of the other kinds of breast cancer can tell us.

Ziggy, WOW what a story!

Ziggy, your amazing story just got even more amazing. (And funny...sorry, the visual made me laugh )

My first cancer was nowhere near the chest wall so don't know how it was missed. My last one was at the very bottom of the breast; almost sitting on the rib cage. So maybe that was harder to see?

Anyway, as I was told, mammograms are only 85 percent accurate.