Mammogram or Shammogram? Roll Call Time

clariceak · October 2009

I really see a common theme here, or maybe I'm noticing it because my dense breasts were never mentioned until my dx mammogram. I think that every woman should be taught to specifically ask their provider if they have dense breasts. If the answer is yes, then the next question is "Since mammograms often miss cancer in dense breasts, what additional screening methods will you be using?"

Thanks weesa for the reminder on your NED status. As a newbie, I always appreciate hearing stories like yours.

rumoret · October 2009

At age 40 baseline - Mamo clear

At age 41- Mamo clear

At age 42 - Mamo clear

At age 43 - Mamo clear

At age 44 - Mamo clear - My internist mentioned I had fibro breasts....first time I ever heard that in my entire life! Also after getting cancer the Radiologist said I had very dense breasts.

The my employer started dropping HMO's and DOCTORS started leaving my Medical Group....and then I was busy starting new jobs.....so I did not pick a NEW DOCTOR because I did not like the ones that had openings......so I skipped 4 years.

At the age of 48 3/4 years old I am diagnosed with breast cancer because I FOUND THE LUMP.

I told the radiologist that I never felt lumps in my breasts before and that I did monthly exams and this breast cancer came up suddenly. He showed me my digital breast mamo and pointed to where the lump was. He told me that it would have not been seen when it was smaller because it was like WHITE on WHITE.....if I had more grey area in the breast...then the white area would have been caught earlier. He did not feel that the four years that I missed my mamo would have made any difference because it would not have been seen.

CAN WE SAY.........MRI...........!

another_mom · October 2009

Found lump over labor day weekend, had mammo following week and (surprise!) it didn't show.

Did show on the ultrasound though. Always did my self exams as I have family history of bc (mom), but seriously think we should have both mammograms AND ultrasounds as there are so many reasons something may show up on one and not the other. I had calcifications that showed on the mammogram but only the ultrasound saw my tumor. MRI's seem to be very thorough although expensive as a preventative screening in non-high risk situations.

Shammogram. Absolutely.

rumoret · October 2009

I will respond for my mother because she does not use computers. In June 1999 my mother had her annual mamo and all came back clear (she said she has always had lumpy dense breasts). Then in August of 1999 she felt an itch in her upper right breast almost in the exact location that mine was...but on the left. She said that she itched it with a soft little brush because it was itching so much. Eventually she felt the lump and had it checked out.........she was dx as triple negative size 2.5 cm and no nodes involved in September 1999.

She was 69 years old and the first in her immediate family to have breast cancer.......she later remembered that a great aunt had breast cancer and it does run in the family...just skipped a generation to her and now myself!

So you can add my mother (breast cancer survivor of 10 years).

Also my dear friend Carol, dx in 2003 after she discovered a 2.0 or larger not sure cm lump while in the shower. She had an all clear mamo 9 months prior. She stated she never did monthly exams...but something told her to do one that day in the shower. She got to the doctor in 2 days and immediately went to task, she was dx as a triple negative. My dear friend passed away on January 15, 2009 from breast cancer. So please count her also!

rumoret · October 2009

I have an Aunt by marriage who has just recently been dx and my brother's mother inlaw just got dx with breast cancer. I will find out how they found their breast cancer.

americanpinay · October 2009

Three mammos and an ultrasound missed my 3 cm lump. Thanks for doing the roll call.

chainsawz · October 2009

I've been wondering about the same thing after the post surgical pathology on my breasts showed I had DCIS all over the rest of my breast. I had mammos, ultrasounds and a breast MRI - not one detected all the other stuff - just the big ugly primary tumor which I self-discovered.

I read a very interesting article about this very issue - here's the link:

http://news.cincinnati.com/article/20091012/EDIT02/910120349/1019/EDIT/Mammography isn t the cure-all we d hoped for

"After 25 years of marking National Breast Cancer Awareness Month and promotion of mammography and early detection as the cure, the reality for 40,000 women who die from breast cancer each year remains unchanged. Despite the increase in catching early, smaller tumors with the increased mammography, according to the American Cancer Society, the incidence of women diagnosed with a later-stage breast cancer, one that has spread beyond the breast, has not changed."

Momcat1962 · October 2009

This list helped. I am 47, have had ongoing "lump issues" (bloody discharge, etc..) for almost 20 yrs. I had a diagnostic exam with mammo and U/S in June. "Cysts" they said. Now, My DR (And, I confirmed it) found 2 lumps, one in each of my very dense breasts. Here is MY question: I had the same diagnostic exam and 2 failed ductograms (DR couldn't get enough fluid in) abt 4 yrs ago. I had an MRI, which they said my breasts were "very dense, and lit up like the 4th of July"...Whatever THAT meant (calcifications??) They didn't edxplain well, and I didn't know what to ask. . I am wondering if this new lump was just able to be seen (or WILL be at my exam this Thursday) ?? Not showing in June, but will now? Abt the size of a marble..actually one (left side, no pain, and where the bloody discharge was from 4 yrs ago), that lumpiness is more oblong in shape. NOW..is it possible that this lump could be something stemming from the bloody discharge?? The Dr said she didn't know why it was bloody..."Maybe you have ductal ecstasia..." ...??? (Or, could it have been this lump just looked like a calcification?

MarieKelly · October 2009

FIRST baseline mammogram age 40 - clear. Very non-dense breast tissue. No fibrocystic

disease. Never had lumpy breasts.

Mammogram age 41 - clear

SKIPPED YEARLY MAMMOGRAMS age 42, 43, 44, 45, 46, 47 and 48.

Mammo age 49 - left breast 1 cm stellate lesion BiRad 5. Had lumpectomy with very wide

margins, SNB, biopsy track removal and then no further treatment. Path

was single tumor with 60% grade 1 IDC with tubular features and 40% grade

1 cribriform DCIS. Lump was non-palpable by me nor by 4 physicians

despite then knowing after that mammogram, exactly where it was.

Mammogram age 50 - clear

Mammogram age 51 - clear

Mammogram age 52 - clear

Mammogram age 53 - clear

Mammogram age 54 - clear.

Enjoyful · October 2009

Shammogram!

Multiple mammograms and ultrasounds in my 30s, all clear. In 2004 at age 41, the lump that I found in my breast years earlier (and which was diagnosed as a simple cyst by mammogram) started to hurt so I scheduled an aspiration. The lump was solid so it was biopsied and the rest is history.

Diagnosed Stage III, primary tumor (there were three in my right breast) was 1.9cm, 4/14 lymph nodes positive. Recently had a recurrence so now I'm stage IV.

I blame mammograms.

weesa · October 2009

I'll be closing down the roll call on the 31st til next October. It was a revelation for me to see how many of us believe our breast cancers evaded detection through multiple mammograms.There is still time to be added, and please let me know if I missed you due to my chemo brain.

Hope you all will crusade with Cherneski (that has a nice ring to it) to get the word of caution out about mammograms.

Christine2000 · October 2009

I started mammos at 35-- from about 37 the radioligist insisted on a sonagram too--he said my breasts were very dense and a mammogram was not enough. Well, when I was 45 he retired. I went to another place in Manhattan with all my films and a scrip for a sonagram as well as a mammogram. They refused to give me the sonagram --insisting the mammo was enough. And the mammo came back clean and I was hearing what I wanted to hear. A year later... felt a big a** mass in right breast in fall 08 and my gyno dismissed it as nothing to worry about. Feb 09 went for my yearly mammo at yet another place and they caught it.

weesa · November 2009

Christine2000, your story, the last one in my roll call, made me want to scream and pound my desk. Aren't you just so pissed?

Christine2000 · November 2009

I am pissed but-- I really have made peace with it. I tell my friends all the time to be persistent if something feels off-- I should have sat there and demanded a damn sonogram but I didn't.

Christine

lrsreyes · November 2009

I had 2 clear mammo & US prior to DX for my stage IIIC ILC, What infuriates me is I had signs ( 3 spots on my areola, postmenopausal, used HRT) but my GP acted like it was nothing & used his standard of care "send for diagnostic mammo & US , further recommendations pending results".

Onco 's BASIC description of lobular is tumor is located very flat close to the chest wall & manifests itself close to the nipple. GP & radiologists should be aware of these since they are the first ones who see the patient. From what I have been reading huge tumors even 10 cm ILC did not show on mammo.

From my experiences, I see a very serious flaw and these people deal with human lives!!!!

KerryMac · November 2009

I have a friend who had a 12cm ILC, not seen on mammo or felt. She only found out as her breast started hanging lower from the weight of it. It is frightening.....

fortunate1 · November 2009

Reading these accounts makes me realize even more that I am a fortunate1. To have had a ILC make a palpable lump in shallow upper inner breast tissue that I could find at stage 1 is some sort of miracle. Before the lump, nothing on a mammo as it grew. If it hadn't shown on an ultrasound (ordered by my PCP-thank you thank you) it would be growing still.

lrsreyes · November 2009

3 of my friends who were diagnosed recently had DCIS, just calcifications in their mammo & a diligent radiologist did needle biopsy rightaway. I think mammo is effective for DCIS not for ILC or IBC.

jenn3 · November 2009

Annual mammogram - came up clean, found the lump two months before my next annual mammogram, didn't worry about it because it was painful - figured it was a cyst. The mammogram showed something wrong - the radiologist immediately did ultra sounds and physcial exams - 3 days later I was having biopsies............ I found the lump, but the mammogram and ultra sound confirmed what I had found.

danadero · November 2009

First mammo age 35

Age 35-37 yearly mammos all clear

Age 38 2 clear mammos and 1 clear ultrasound dispite palpable lump. Told it was a clogged duct. Diagnosis DCIS 1.8cm Stage III.

elimar86861 · November 2009

Digital mammogram did not image my 7 mm in Aug. '08. Doctor exam missed it too. Self-discovered lump a few weeks later, but had a false sense of security and a relative's illness to deal with, so I let it go for some months. Still did not show up on digital mammo in June '09, but was detected by ultrasound at that time. My slow growing tumor had been there some years the doctor said.

jenni__ca · November 2009

myself

3 years of pretty regular mammo's

self found a "thickness and fullness" ... clean mammo followed by ugly looking ultrasound (radiologist who did the u/s guided core biopsy said no one would have caught it looking at mammo - even knowing where it was he couldn't see it on mammo)

ilc over 7 cm stage 3a

my sis

first mammo clean

approx a year later self found a lump

second mammo clean followed by suspicious u/s and confirmed biopsy

ductal 1.75 cm ductal stage 1/2

lookingforward4more · November 2009

Mammograms every six months for almost four years. They identified two "calcifications" that they stated were benign. They turned out to be two tumors and were not discovered until I insisted that we take a biopsy. FINALLY diagnosed as stage 2b, 3 cm and 1.5 cm. 2/24 nodes. Had to do the whole treament menu....could have been diagnosed MUCH earlier if they had looked closer. Makes me freakin mad!

billiegirl · November 2009

Clear mammos since baseline at age 40. Was very symptomatic and yet ultrasound & mammogram reported to me as "normal" even after my own suspicions & symptoms ( red, painful, swollen breast). Mammo did show very dense breast tissue with enlargement & skin thickening, which I incidently, was not told. They told me the tests were were normal. Found out otherwise when I finally got copies of my mammo report and it stated IBC could not be ruled out and MRI should be considered! Numberous Dr told me it was mastitis/dermatitis. Neg punch biopsy.Changed DR several times and I finally had MRI after 3 months of going back and forth to Drs trying to get help. Result: Stage III IDC/? IBC with more than 30 positive nodes. Its been 5 years and every year they want me to have a mammogram. Waste of time & money (in my case) as far as I am concerned. I do it because it is required per protocol pre any other type of screening, So I usually eventually get around to doing it...but don't consider it a priority in my life and certainly don't stress about it..

kimf · November 2009

weesa...great idea! I didn't have mammograms other than my baseline b/c I was dx'd before age 40, but when I felt my lump my doc sent me for a mammo and ultrasound and the radiologist told me it was benign and to come back in 3 - 6 mos. Thankfully I didn't..saw a surgeon and found out stage IIIC after mast. Dense breast tissue needs and MRI - every year!

Alyson · November 2009

In defense of mammograms. I would probably not be here today if was not for a mammogram. Had one Dec 2006, had a sore breast after hitting it on an open filing cabinet drawer, wasn't due for one until April. No lump could be felt.

Mammogram showed strange shadow, had calcifcation previosly but not in that breast. US showed it clearly and was told there and then it was certainly cancer which biopsy confirmed. The path report following mastectomy comments that tumour was barely palpable and could only be identified by hook wire. They refer to them as ghost tumours. Also had 23 positive nodes and extranodal activity.

I have friends who have had problems with mammograms but there are some of use who are very greatful because the BS said that if I had waited another four months it probably wouldn't have been Stage IIIc because of the type of cancer.

Alyson

Colette37 · November 2009

weesa.. The reality is that for women who are in a high risk group, that mammogram is the ONLY way to help detect breast cancer at this time that the insurances are willing to pay, at least most insurances.

I was in a high risk group, because of life style and also my Mother having had breast cancer at a young age. I was literally IGNORED when I turned 35 and told to start asking it when I turned 40! Well, I am now 37 with a 10 cm tumor that would have been seen 2 years ago and was denied the request to have a Mammogram or any other testing for that matter! How can I say that it would have been seen without a doubt? Because mammograms can see the size of a pea and for the cancer to have got to the size that it did I would have had to have had it between 4 to 6 years min! The tumor was seen on my mammogram and MRI to have been 9.5 cm big in March/April. When I had the tumor removed in August it was 10 cm. (Please keep in mind that I needed to find a hospital who knew what they were doing and how to read the films correctly because I have 4 different sizes reported from looking at the same films! It was 1.7 cm, 3.5 cm, 5-6 cm and 9 1/2....it was only until the last place that they knew what they were looking at and gave an accurate size to what was being seen)

What people should be asking is why there is still just mammograms being paid for.

I wish I would have had a chance to have a mammogram 2 years ago..it would have saved a lot of the treatment that I am now having to have to live.

weesa · January 2011

Bumping this for Cat123--you are in good company!!!

Mammogram or Shammogram? Roll Call Time

Comments

Categories