MRI better than mammo for DCIS

Katie12 · September 2009

Re: The recent hoopla over mammography timing: The reason mammography doesn't save more lives in either age group is that it is inadequate to the task. Please read my story about my experience with DCIS. I have found out some shocking things since then that we are not told about the inadequacy of mammography for early detection and the use of the better tool of MRI.

http://mammogramsanddcis.blogspot.com

KAR · September 2009

Hi Katie, read your story and at least you stuck up for yourself. I must say I had the opposite problem. My first mammo (digital) showed a small cluster of calcification's, went back for spot compression views and radiologist came in going on and on about needing a biopsy because this could be a sign of cancer. I thought this guy is crazy Im 40 years old and healthy as a horse. Had biopsy next week and bingo DCIS. Had MRI next week or two and it showed no sign of cancer. Had lumpectomy because surgeon said I only had a "small focus of DCIS" and then surprise, the margins weren't clear so re excision and radiation or mastectomy. At that point I was sure they were playing a guessing game and they had no clue what was going on in my breast so I opted for bilateral. Haven't regretted it for a moment, I'm still not convinced they (health care professionals) know what they are doing when it comes to diagnosing DCIS, but I am very thankful that the radiologist came in and shocked me with the bad news. I have since been told that my case was a good find. Anyway thanks for sharing your story the more we hear the better.

Katie12 · September 2009

Hi KAR:

Thanks so much for reading my story. I think we at least agree on the fact

that the patients are entitled to A LOT more information about DCIS,

particularly in view of these 2 major facts:

1) Breast cancer is the leading health care issue that affects women;

2) Breast cancer is the 2nd leading cause of cancer death in women.

In light of these facts I don't think there is nearly enough money, effort

or information put toward women's issues relative to the seriousness of BC.

Katie

flash · September 2009

katie-

In some ways I agree with you. We do need one simple test that can identify ALL types of BC. Each test has different advantages and disadvantages. The MRI also has some disadvantages and does not always catch some cancers. NONE of the tests are perfect. I am an example of each test showing a different aspect of my cancer and each test missing other cancers. when my slice and dice was done after the mas, they found another type of cancer they didn't even know was there; it had not shown up on any of the tests (mammo, us, mri, pet/ct)

We do need more women to open their eyes and learn about bc before they have bc. There still needs to be more research on it.

I hope all goes better for you.

Katie12 · September 2009

Hi again KAR:
Thank you; your answers have given me more information that

we all need to help us be involved and make decisions regarding this

most important issue. You're right, no single tool is perfect, including

MRI. As my story indicates, my MRI after diagnosis only showed the blood

engorgement that indicated cancer. And in '08 alone, the mass found

in my tissue later was missed by 3 mammograms (includng regular, close-up

and diagnostic) and 2 sonograms. This is too risky and the use of MRI

as a screening tool was kept secret from me, although I would have paid for it.

I never wanted to know anything about breast cancer, but I see now that we can't

just trust "the system." We need to be a lot more proactive. I hope you continue

to thrive as well. I see you have a little Schnauzer--so do I!

Katie12

Katie12 · September 2009

P.S. At the least, I refuse to go back to exclusive reliance on mammography and I strongly encourage other women to also refuse it.

Katie12 · September 2009

To KAR:

P.S. #2: Did you actually look at your MRI on the computer screen?

Katie12

KAR · September 2009

Hi Katie, No I didn't look at my MRI, I just got the report. Interestingly my MRI showed a spot on my lung that really worries me to this day, but they say not to worry could be anything like scar tissue from prior infection. I don't know what to think half the time. You are so right about the MRI, It should be available for drs and we should be told about how mammograms don't always catch everything. And by the way a mammogram is only as good as the radiologist reading it. Your story made me angry that they didn't bother to investigate further earlier on. I feel really blessed that my "horrible radiologist" pushed me into having a biopsy Wink . Maybe some grass roots information sharing should be happening here. I mean if 1-8 of us will be going through this in our lifetime. I wonder why you hear so much about support breast ca awareness but what has changed?? I know my ins. co. didnt pay for MRI right away, asked for medical records and took their time to pay but in the end they did.

Oh and to support the use of both mammo and mri... when I saw the genetic counselor last week she suggested that my sister get her first mammo and at least one MRI if she can get a dr to order it for her, even if she has to pay for it herself. Humm makes you wonder why this isn't the norm?? maybe $$$$!

Good luck and please don't think I was arguing, just wanted to share my story, I think Im probably an exception to the rule.

Katie12 · September 2009

Hi KAR:

We lost power from the storms for a while and I couldn't reply.

I want to keep an ongoing discussion and encourage a grassroots effort among all of us. I try not to be bossy, but I feel so strongly about all of this: Your sister (and all of us) need to insist that insurance companies pay for screening MRI. Mammography is worthless for early detection of DCIS and insurance companies know it. They are betraying us and I hope your sister won't fall for it. We have to change this ourselves. Doctors would rather betray the patients than stand up to insurance. I think you should go back to your doctor and ask to see your MRI on screen. You have a right to see it. I think they are trying to hide the fact that it is a useful tool for early screening. This thought is consistent with the tip-offs I have been given.

I learned of another woman who had breast cancer a year before mine. Her annual mammo "suddenly" detected a tumor on her chest wall -- IDC, Invasive Ductal Ca. She had a lumpectomy and had to go through chemo AND radiation. IDC, like 70% of all breast ca, began in her milk ducts and could have been seen by MRI much earlier and saved her so much trouble. She still worries about recurrence, but wouldn't if it had been caught at Stage Zero. Maybe it would be worthwhile for your sister to read my story. Tell her to feel free to take it to her doctor.

Katie12 · October 2009

Bump

Katie12 · October 2009

Please learn more about MRI for screening here.

sunnyhou · October 2009

I had a mammo that saw the calcifications. I then went for an MRI.. the MRI saw them but exaagerated the size by a lot. 3cm to 4.7 cm. I am glad I did it.. while waiting for surgery it gave me peace that nothing was in the other breast. I am young.. 38 so this is suppossed to be the best way to find DCIS but for me the mammo found it too..

Katie12 · October 2009

My point is that a screening MRI would have seen it sooner than mammo, in time for it to mean a small lumpectomy instead of mastectomy. Mammography and MRI should both be used, alternating years.

Katie

Katie12 · November 2009

Bump.

MRI better than mammo for DCIS

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