Can't see tumor on Mammo

emanresu · January 2009

The first time I had IDC the tumor was sticking out the side of my right breast. To the Dr.s I was fine because there was no image of a tumor on the mammograpy. And was not visible at all on an ultra-sound. Thanks to my guardian angel I went to another Rad. Onc. and she told me to have a biopsy. Cancer.

The second time in 2003 eleven years later another tumor in the opposite breast: Invisible on mammogram, nonpalpable, just hurt so the tech advised an ultra sound, God Bless her. A tumor visible on ultra sound but even with a J-wire through the tumor not visible on a mammogram.

Now I have to fight with to get an MRI. Had to appear before "a court" of insurance people.

Not all mammograms can detect a tumor.

YATCOMW · January 2009

My tumor was not seen on a mammogram or sonogram......I told my surgeon (who said there was nothing there) that I wanted a biopsy anyway.....he was not happy......bottom line....tumor was my entire breast.....8 X 6 X 5 cm. They could never get clean margins.

I am not the first to say this....but we have to be our own advocates.

Jacqueline

barbe1958 · January 2009

I had a bloody discharge from my left nipple and called for a mammogram in early June. Got one real quick for October 1st! (Canada, that's fast). Mammo showed nothing, U/S showed something (they only did it because of the discharge which they saw). Had another mammo (nothing) U/S then core biopsy (inconclusive). Had lumpectomy and cancer! Then had bilateral mastectomy as I don't want to go through this again. From October 1st my surgery was December 16th. Too much stress.....

Meant to say that my tumour was at 6 o'clock on the left breast really close to my chest wall. Not a chance that mammo would have caught it.

stitches · January 2009

Your posts interest me because on the day of my lumpectomy I received a letter from the radiologist saying the mammogram (4 views taken on right breast with lump highlighted) showed nothing suspicious! This is pretty frightening for women to hear - technology only goes so far, huh? And barbe, the wait you have had in your medical system is a real eye-opener for me. We really do have to be warriors and fight for our health and life! Bless all of you and thanks for sharing your information. Stitches

barbe1958 · January 2009

The really scary thing is that my last number of years of mammo have always resulted in ultrasounds, only to be told, uh, okay, no problem...

I had to fight to even have then look at my left breast as they were more concerned with calcifications in my right breast! If the radiologist who was called in hadn't seen the discharge herself, I think it would have been another year of...uh, okay, no problem!

barbe1958 · January 2009

OH! And another thing. At last years mammo, with ultrasound of course, I told the tech that I had a pain in my left breast just underneath here, and pointed. She said, "Oh, we don't ultrasound for pain." Wish she had, that's where my tumour was growing!

Carolina59 · January 2009

I had a large, painful, palpable lump in my right breast that I thought was a blocked milk duct (nursing dd at the time). I told my OB/GYN that it was not going away. He felt it and referred me to a gen. surgeon for an u/s. Nothing suspicious. He said he couldn't even feel it. No mammo because I was nursing (I've since learned that this is not true--could've had a mammo).

Nine months later, I went to a breast surgeon at a major cancer ctr. She felt it once, sent me downstairs for a mammo & u/s of both breasts: L breast clear; 7cm tumor in R breast. Immediate core needle biopsy of R breast, DCIS & IDC. I was then sent for breast MRI of both breasts. MRI picked up two suspicious areas in L breast. Sent back for u/s. Nothing. MRI-guided biopsy: DCIS in L breast. I had a bilateral mastectomy and tumor in R breast measured 10x5x3cm, mostly DCIS, thank God.

These were considered two primary cancers. If they hadn't sent me for the breast MRIs, cancer in L breast would not have been caught.

Fight for your breast MRI. I've heard that it is now the standard of care, esp. for BC survivors.

otter · January 2009

Carolina, you said this: "Fight for your breast MRI. I've heard that it is now the standard of care, esp. for BC survivors."

I wish that was true, but it isn't. I guess if we want to pay for them ourselves, we could get them whenever we'd like. But, unless we have a laundry list of risk factors (like previous biopsies showing ADH, and BRCA+, and very dense breasts--all combined) that put us over some magic, insurance-ordained threshold, some of us cannot get MRI's for screening purposes.

Even though the onco guidelines in the U.S. are now recommending more widespread use of MRI in screening at-risk women, MRI is still used mostly in women at "high risk." Having had BC does not automatically make someone "high risk" for another primary.

otter

Nichola · January 2009

My sister in law has had 3 x clear mammos in the last 2 1/2 years and luckily the Radiologist with the last mammo also did an ultrasound which just showed a 4cm tumour and 5 positive nodes!

I was had a 1.2cm tumour that didn't show up on a mammo or ultrasound. I then had a skin recurrence that didn't show up on the US!!

It's all left me feeling a tad unsafe! Recent MRi has identified a 12cm pelvic mass that they "think" is a fibroid. I'm having a follow up MRi at the end of the month to be on the safe side!

Nikki x

barbe1958 · January 2009

Nichola, that is amazing, I didn't know the MRI could show pos/neg nodes!

I forgot to mention above, that in my "menu" of testing I also had an MRI. Usual wait in Canada is 6-9 months (radiologist warned me I might be 3 months). I got it in 2 weeks when I made the booking department read my ultrasound results about the bleeding nipple. Also was lucky that I don't menstruate due to a hysterectomy so I didn't have to wait until after a cycle.

I, too, felt unsafe. I hear you!

Nichola · January 2009

Hi Barbe

Sorry, I think my post may have been misleading... although I do think MRis can indeed show up pos/ neg nodes, that's not what happened to me! I was pointing out that I and my sister in law both have had repeated experience of mammos/ US not showing up malignancies. The mri that I had was for another set of symptoms and even though they are reknown for being more accurate, I'm still going to get a follow up mri to make absolutely sure!

Nikki

emanresu · January 2009

Hi, I will have to keep fighting forever I think to get a breast MRI. I took the Braca 1/2 test and came out negative. Did that for my daughter. Her insurance company BCBS will NOT pay for an MRI for her because she has no other siblings that had breast cancer. She is my ONLY DAUGHTER, how could she have siblings that are female. But that is one of their criteria for a MRI. So that knocks her out of an MRI. Who thinks-up these criteria? With my history of breast cancer she deserves to have an MRI!. I was turned down twice by BCBS insurance and they are ruthless about giving NOT paying for an MRI for breast cancer. I had to appear before their board. Fortunately my husband was with me. I had a melt down. I cried through the whole thing. I was so upset from doing a months worth of research in my own behalf so I could win the case I was just unnerved. Going over all of the past and reading all of the dictations were torture.

Two primary breast cancers one in each breast with lumpectomy and I AM NOT A CANDIDATE FOR MRI,--- whad r they nuts?

I have heard of other insurance companies who are not stingie with MRI's for detecting breast cancer. God Bless them for saving lives. MG

Dx 10/21/1991, RBr, IDC, 2.5cm, mod diff, Stage II, Grade 2/3, 0/18 nodes, ER+/PR+, lumpectomy, rad, CM5FU Dx 5/22/2003, LBr. IDC, 1.7cm, well diff, Stage 1,Grade1/3, Sent.NodeBiop 0/1, DCIS ER+PR+, lumpectomy, rad, Adriamycin/Cytox.. [Edit] [Delete]

destinysmom · January 2009

Same thing happened to me in november of 07 they found a knot of my right breast at the 11oclock position, had biopsy and mammograms and ultrasounds done . The outcome was we will keep an eye on this because your breast are very dense and I believe it is nothing to worry about . In Dec of 07 I went to breast specialist only to hear the same results from her ,this is nothing but fibrocystic diease dont worry we will do another mammogram in July of 08, so we did all procedures again and radiologist said he didn't like the feel of the knot becasue he felt like it was attached to my chest wall! Breast specialist says no way she is fine breast tissue is so dense she is fine!!! Well since I had all of the faith in the world in my breast specialist I never got worried! Boy was that a big mistake!! IN october (early) I was preparing the stuff to winterize the house and my shoulder began to bother me, i waited until later part of october and went to doctor on th 21st with a complaint of maybe rotator cuff injury??? I was sent immediately to see a surgeon because knot on chest wall was not moving and I had to have surgery on 30th of October!!! They removed a mass 12x11x5 full of dcis! Then on Dec15th ,08 I had a double mastectomy with 2 lymphnodes removed on the right side!! Nowf or reconstrucre, I have muscle spams so bad I feel like a truck is sitting on my chest! Ladies PLEASE if they tell you that you have dense breast tisssue, request them to do an mri!! Mine showed up there but not anywhere else!!! I would rather have 10 babies natural than to have to go through this! Especially if you have a high family history of cancer, please make them listen to you!!

carol1949 · January 2009

Hi ladies, My 6.5 cm tumor was also missed on the mammogram and we know from the doubling factor that it had been there at least 2 years. Yes, we do have to be our own advocates and also familiar with our breasts. You might check out thermography. It is supposed to pick up bc much sooner than other methods. It only costs about $150. from what I am told. The only draw back is that it finds it sooner than other methods are able to confirm it. On the other hand.. if you know you have a possibility for cancer cells... all the more reason to go ahead with an alternative therapy such as diet and supplements.

Check out Patrick Quillin Beating Cancer With Nutrition. His theories make sense.

rosied51 · January 2009

I know all about having tests come back normal and yet we know something is there actually I think IBC is in both breasts. These tests can only go so far and if they do not do the right area well they are gonna come up clean, it is very frustrating and if we don't fight for ourselves well who will. Sometimes the DR's are in such a hurry going from 1 patient to the next.

emanresu · January 2009

rosied51

I sure am with you on Dr. Hurry Alot. Sometimes I leave more confused and frustrated than when I walked through the door to see the doctor. I have asked the doctor not to double or triple book patients so that the wait is not so long. I have called the Manager of the Office to complain, IT DID NO GOOD. In the office with the doctor I am no longer... far from no longer afraid to express myself. Like my dear Mother told me, "Gracie, if you don't take care of yourself who will"?

MG

YATCOMW · January 2009

I always take the last appt of the day so that I know I can get the time I need with the oncologist. I just don't want to be rushed when we are talking cancer. I want quality time and the ability to ask him about current research and making sure we have not left any stone unturned. He's a great doctor but he books up his day like everyone else.

Just a thought!

Jacqueline

barbe1958 · January 2009

I actually write down all my questions and cocerns so I won't miss any. When the doc sees me with a list, he knows he has to answer or I won't move to the next one!

Works every time.

cp418 · January 2009

[[otter wrote:

Carolina, you said this: "Fight for your breast MRI. I've heard that it is now the standard of care, esp. for BC survivors."

I wish that was true, but it isn't. I guess if we want to pay for them ourselves, we could get them whenever we'd like.]]

I found out that we cannot demand to have an MRI even after being dx with BC. The doctors at the medical center where I went wouldn't order it. So I complained to my pulmonary specialist and she gave me the script. When I called to make the appt at a local Radiology Group facility they refused me because I had not had the scrpt approved by my insurance carrier. I told them I would pay and not go through my insurance and they REFUSED!! The Radiolody Group was sub-contracted by the insurance companies and ONLY ACCEPTS payment from the insurance companies. They REFUSE direct payment in cash, credit card or check!!

I ended up going to a different Radiology Group and going through my insurance company who gave my doctor a very hard time getting approval. Looks like I will have the fight again this year. I'm only asking to have an MRI every other year and not every year.

Can't see tumor on Mammo

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