Diagnostic tools for finding breast cancer

Tamioh

I am an x-ray tech, who has just recently gone through a lumpectomy/ lymph node dissection, chemo for 6 mos. and now, a bilat mastectomy with reconstructive surgery, a week ago.

I had a questionable mammogram about 4-5 yrs ago.  They did mag views, etc. and found nothing. The mammo I had in 5/10 was negative.  I felt something weird, not a lump, in my breast in 11/10.  Another mammo, still can't see anything.  Finally, they do an ultrasound and locate a small mass. Post lumpectomy, I have a MRI which is normal.  Another mammo after chemo in 7/11, normal except scarring.

The bilat mastectomies was MY choice, as they couldn't see on the mammograms and the margins were a little close, on the lumpectomy.  I didn't want the stress of "russian roulette" mammograms.  After my surgery, they found 2 more small masses/lesions in the breast tissue, near the lumpectomy site!  I didn't expect this but glad I made the right decision.

I am pissed off though, that when women have dense breasts or there is a questionable area on a mammogram that they can't define;  Why don't they have a contingency plan to work up the patient with other diagnostic tools??  I know this is a common occurance and how would women know that there are other tests out there that might help catch something earlier.  I know from the hospital/insurance company side that it is too expensive to run these other tests, but I'm not saying, use them to screen every woman.  Use them as the next set above the mammogram!

Is anyone looking at some kind of legislature or study to get these damn insurance companies to have a better care system for their patients besides the almighty dollar??! 

I think if they had been able to visualize the questionable area (4-5 yrs ago) and did a biopsy and lumpectomy then, I wouldn't have had a +lymph node and consequently, the horrible chemo.  Which, by the way, is useless for the DCIS I had.  Luckily, I made the right decisions, a long the way but it was a crap shot, in some respects.

If anyone is working on women getting the right diagnostic studies, per individual needs:  I would like to know and help in some way.

peggy_j

I'm sorry you're going through this. Yes, I'm sure a lot of women are frustrated by the lack of diagnostic tools, esp for women with dense breast, like me. Could you tell me more about these other diagnostic tools? I thought mammo, US and MRIs were it (and my RO said that MRIs can't always detect DCIS). I'm surprised to see that the DCIS traveled to the lymph nodes. Is that unusual? 

Tamioh

No, those are the imaging tools used currently but MRI isn't commonly used.  It is very sensitive in picking up small lesions, which is why they did one after my lumpectomy, to make sure the right side was clean.  I know a couple of people who had DCIS and positive lymph nodes, just depends on when they catch it, I guess.  Many women I know, that have dense breasts would like to ask about having an MRI but know that their insurance probably won't cover it.  It's like a $2000+ study.

mdg

I also had dense breasts.  A mammo in 10/09 showed nothing in my breast.  By May 2010 I had a 1.1cm mass.  It must have been there in October as it is a grade 2 tumor.  I am frustrated as well that they don't do further testing.  The mammogram gave me peace of mind which was a total joke. 

Beesie

DCIS cannot travel to the lymph nodes.  

By definition, DCIS is "ductal carcinoma in-situ". IN-SITU means "in place".  DCIS cancer cells are stuck in place in the milk ducts.  If cancer is found in the lymph nodes, then by definition the cancer cells that moved into the nodes were not "in place".  Therefore there had to be something more than DCIS in the breast.  

It's very common to have DCIS and IDC together; sometimes women who have both DCIS and IDC identify themselves as having DCIS.  So they may say that they had DCIS with lymph node involvement but in fact they had IDC with lymph node involvement.  This miscommunication or misunderstanding happens most often in cases when there is only a small amount of invasive cancer.  I had over 7cm of DCIS and only 1mm of IDC.  It would seem reasonable to say that I had DCIS and it seems strange to say that I had IDC. Yet that 1mm of IDC changed my stage from Stage 0 to Stage I.  And while I had a 0% chance of nodal involvement from the 7cm of DCIS, I had a 10% chance of nodal involvement from the 1mm of IDC.

Sometimes what happens is that the IDC is so small that it's not found.  My 1mm of IDC was found, hidden in there in the middle of all that DCIS, but there are cases where tiny amounts of IDC are not found when the breast tissue is analysed by the pathologist.  However if someone is thought to have pure DCIS but then is found to have nodal involvement, the assumption made is that there was an occult microinvasion and that's what caused the nodal involvement.  In other words, "we though the diagnosis was pure DCIS but since there is nodal involvment it's obvious that we missed a small area of invasive cancer (the 'occult microinvasion').

Hope that clears that up.  I wouldn't want all the women who do have pure DCIS to be worried about this, particularly since some don't have SNBs (SNBs are not considered to be necessary for pure DCIS because DCIS cannot move into the nodes).  

PinkShirtNow

I also have dense breasts.  I had a "clean" mammo and then I found a 3.9 cm lump 10 months later.  It is pretty obvious to me that it was missed in my annual mammo.  No one ever really explained that my breasts were dense and what that might mean as far as difficulty in detection in mammos.   I feel like going up to every woman I know and warning her about dense breasts.  I feel like I'm a year behind where I should have been right now.

skl679

I was told that I had fibrocyctic breasts and often had longer breast exams because of it. Always negative mammograms over the last 10 years. It's a shame that I can never trust a mammogram again. I got a clear mammogram scan, then 5 minutes  later my gyno found a lump. I was send for digital diagnostic mammo and US - still nothing on the mammo but US picked it up. I had a core biopsy that came back B9 but I had a MRI on both breasts where the lump was clearly seen in the left breast and nothing else, it also showed that my us guided biopsy missed the tumor. I had to have a lumpectomy in order to get my dx.  I will insist on us scans at a minimum in the coming years, mammograms will never give me any assurance or peace ever again.

flopsy

It is all too true that mammograms are flawed in a lot of ways and I should know because I have been a Breast Imaging Specialist for 25 yrs.  I have seen so many women that the mammogram has failed to show their tumor including myself.   I had to wait until I had symptoms of a thickening and pain and axillary tenderness before finding my 3.5 ILC and 5 positive nodes.  By that time I was Stage 3A.   I have undergone a BMX,chemo, and rads.    My BMX showed that I also had 2 pre cancers in other breast that did not show up on MRI,US or CT scans. The pre-cancers were ADH and ALH.   My "normal" mammogram was in 2/10 and my biopsy was 4/10.  I always tell my patients to be diligent and insist on further testing if they feel they need it.  I wish there was a screening tool that would find all cancers but it just does not exist yet.  I am hoping it will be found soon.

pastalover

Hello,

  I am going through this garbage right now.  Have moderate dense breasts even after 5 years post meno.  Have had abnormal mammos for past 4--5 years (same left breast).  Had mammo 10/24 got call back but was told don't qualify for funding for additional tests because I have insurance.  The insurance does not pay for additional tests !!!  So, now I have to have that hanging over my head.  I was told if I was to be called back that it would be taken care of.  Now I have to skip more testing because of my income.  I am automatic decline on new health insurance due to my health history.  This is the kind of stuff that makes one never walk into a doctors office again!

flopsy

Pastalover,  Check with your facility to see if they any funding for people that are not covered by insurance.   you could also check state sites for possible help.   The facility might also work with you to set up easy small payments to have this done.  That is what our facility does.   Hope this helps.

Sometimes you can find other ways to get things done by just asking.

Kaara

I was advised in NC to get an MRI when my mammo showed a suspicious area and the US showed nothing.  I came back to Fl for further testing and they won't do the MRI but instead are doing a stereotactic biopsy.  When I read my report it showed that I had "moderatly dense" breasts which I never knew.  I have always had normal mammograms until the last two years when suspicious areas have been showing up.  This latest one is supposedly a small 8 mm, so I'm hoping that this biopsy today takes care of diagnosing whatever it is.

I've learned in my research that use of thermography for detecting early breast cancers is a good diagnostic tool because it shows small areas that cannot be seen on mammogram, and there is no radiation involved.  In the future, I think I am going this route.  If something is suspicious, you still have to do further evaluation, but it is good for early detection.  Bad news is most insurance doesn't cover it, but I would gladly pay out of my pocket to get a safer test. 

fredntan

How much does a US really cost? Its got to be much cheaper than all this stuff that I've been through. 

cp418

http://www.areyoudense.org/

There are some new laws - legislative changes that recently occurred in TX and CT. Goal is to make it the law across the country but this is a state by state process maybe.  We need to be actively involved signing petitions and making our voices heard for those of us who need a supplemental scan, i.e., US or MRI.  As patients we need to be VERY proactive in our examinations and health if we feel we have not been thoroughly diagnosed (lumps present but not seen on current scans).  IMO by knowing our breast density risk status and what is in our breasts helps us to better monitor our breasts.  I certainly will not leave it up to the insurance companies to dictate when - what scans I can get because some Dr may not want to follow up on your concerns.  Find another Dr who will listen to you and get those extra scans if needed IMO.

 http://sonocine.com/

pastalover

Thanks so much gin2ca,

         I am frustrated about all my health issues and symptoms.  I am even more stressed this time of year because anthem sends the lovely letter saying your premiums have gone up again.  Nice holiday gift!  I just going to hold off til even thou my breast has become more painful..  I'm running out of evergy to fight every darn thing.  Thanks All and Be Well!

peggy_j

fredntan if I'm reading the online claims correctly, my US costs less than $400, cheaper than the digital mammogram.