How could I go for yearly mammos and end up with a 6.5cm tumour?

Cat123

I am still feeling angry....at no one in particular but how could I diligently go for yearly mammos and end up with a 6.5cm tumour?  I felt the lump and had to go and get it checked out.  Shouldn't a mammo have picked it up?  Are mammos so inadequate?

Christine5

I'm so sorry. It feels so wrong! I understand your anger and frustration. Mine was only 1.5 cm and the dr said it had been growing for 10 years! I had mammos faithfully as well. I pray we will find better tools for diagnosing and treating very soon.

faithfulheart

Cat123,

it's a bit of a mystery, I know,  my mamogram was clear 11 months prior to my dx.

I have been angry about that too. I understand your feelings on this. You feel like you did what you were supossed to do, and it still happened. I have been telling my friends to do there self breast exams, i feel like they are more reliable. Still get mammos, but, I not having any family and a

clean mammogram 11 months prior,it really does make you wonder, whats going on.

Hugs

faithfulheart

Cat123

I know...I do wonder what is going on.  I worked with a woman several years ago who went through bc and she told me at the time (she told lots of women) to lie to my doctor and say that my mother or aunt had breast cancer so that I would always get ultrasounds as well.  She said this because mammos didn't pick hers up either.  I can't lie though!  Sort of wished I would have now.

Cat123

Also....I was told years ago that I had very dense breasts.  This should make it automatic for ultrasounds.

Jenna1961

Cat123
It does not mean Usound would have seen it for sure. I had 8 cm DCIS with necrosis and microinvasions that did not show on any of imaging including MRI (a week before surgery). To everyone it looked like fibrocystic tissue. They also could not see the  1.1 mm  IDC in the node.

Kathleen26

I agree that women are being told that mammograms are the best tool for the job, when we are all finding out they are clearly not.  Mine did not show up on a mammogram OR ultrasound 8 months before it showed up on another one, but had also 'been there for years'.   I think MRI is probably a better screening tool, but very expensive, so it's only used as a screening tool for those with a genetic defect (not even family history will get you that unless you're proven BRCA1 or BRCA2).  

We're getting lulled into a sense of complacency that we're taking care of ourselves when there' clearly issues with annual mammograms as a screening tool for this disease.  It's a big fat lie, and I agree, it's hard not to be angry about it.

flannelette

Cat 123 - I too have gone for mammograms since age 40 - and especially diligent these past 10 yrs - and my yearly mammo detected a 6 INCH tumor! (extensive microcalcifications) And I was stunned, because the nurse who examined me at the Ont Breast  Screening clinic did not feel the lump! And neither could I - only one teensy spot where I accidentally dug in with my fingernail and felt something hard.

My onc. surgeon reviewed prior mammos and - nope, no calcifications the year before. so yes, i agree, there must be better instruments. it was only when I was lying on the table being examined by the surgeon who was teaching his resident that anyone could feel it, cause he really knew what he was looking for.

So it happens. My tumor grade of mitotic divison  ie hooliganism - was the worst - 9 out of 9. I felt like I'd won the whopper of the year award. 

The morning after surgery my surgeon appeared by my bed to tell me it was "only about 4 INCHES of what looked llike a lot of DCIS mixed with IDC". Actually, this did make me feel much better. Still. I'm pretty sure I'd won the BOOBY prize at KGH that year..

anyways, I'm here, more than 2 yrs later, and happy as a clam to be here. 

Sometimes the universe reverses itself and gives you a great gift after the nasty kick it just delivered.

Best of luck, and hugs, you can do it!

Arlene

Rachel1

I had a clear mammogram six days before finding the lump while doing yoga.  I then saw three dr.'s who all said it's fibrocystic and not to worry. One was my surgeon who had done a previous biopsy and he refused to biopsy saying it was nothing. After waiting and worrying for 7 months I insisted he remove it -- guess what??? 4.5 cm IDC grade 3 with node involvement.  I am so sad and angry. Why did I put myself through all those yearly mammograms?? Knowing I had dense breasts why didn't they ultra sound or biopsy?? Why didn't I insist on an ultra sound or have the dang thing removed instead of waiting and worrying for 7 months?? I so hope that Souad is right and that the universe reverses itself and gives you a great gift after a nasty kick. I am ready for a shower of gifts.

Hugs to you all.

Rachel 

barbe1958

A grade 3 breast cancer would grow very quickly. Also, when it first starts, it's too small to be seen by mammogram. Even an MRI might not pick it up. Good luck and welcome to the club no one wants to join!

lago

Yup I hear you. My was 5.5cm but if you include the DCIS it was probably 6.5 cm (which is what the MRI indicated). I was only an A to small B cup.

I had a scare 4 years ago so you'd think they would be watching! This tumor was in the same spot they did the US 4 years ago.

I know part of the issue with me was I have very dense breast tissue and it was in the posterior region. As you can see I did have a very fast aggressive tumor. Still I think this should have been found at least a year ago given I had a scare… and the person doing my mammo a year ago mentioned something about this breast being a little different shape than the other and had to take another picture because she missed part of it. If I only new that was a sign!

My now former gyno missed this only 5 weeks prior to my mammo. I fired the hospital I was going to as well. I'll alway be angry about this but I know I have to move on.

karen1956

I too had annual mammos...and then bam!!!  At the annual mammo, the gal comes out very calmly and says they couldn't see everything and needed another picture....she was so matter of fact that it did not raise any alarm in me...in fact, I went to work and commented about how long it took and that next year, I would need to make the appt earlier (yah next year not!!)...then 3 days later, call back....spot compression mammo...and the gal says, we couldn't squeeze it out...I had no idea what she was talking about...so directly to US....the week-end inbetween the call back and US, i get feeling all around my breast and felt something under my arm pit, but kept thinking I'm imagining it because I'm trying to find something wrong...the US tech spend what seemed like a long long time, then the radiologist comes in and spends a long time and comments that due to a good US tech they saw something (or whatever) and before I could leave the bldg, they were dialing the number to schedule the biopsy...two places biopsied....the radiologist during the biopsy...when I said I don't know how I'm going to tell my older DD who had just went back for spring semester and her response was you will find a way or something like that, not you'll cross that bridge....next day phone call saying both places were BC and now to schedule MRI...long story short....MRI followed by more biopsy and more BC including nodes.....SO how did I go from several years of clean mammos to a breast full of cancer!!! At least 3 tumors plus nodes...stage 3....I guess it is what it is!!!!  The whole nightmare started this time 5 years ago and date of Dx is one week from today....2/3/06....and how did my life change!!!

I remember asking radiologist who did US about why not just do US or MRI's and he said that unless you know what you are looking for, they are not helpful...and MRI's end up with lots of false positives....my ovaries lit up as did my noncancerous breast.....but that noncancerous side came back pre-cancer post bilat.....  Not only due I want a cure, I want a prevention...that this dreaded disease goes the wayside like so many of the diseases of years past...cure means that women (and men) still get cancer but we know how to treat so doesn't come back....not good enough...prevention means we don't ever get it....maybe for my younger daughter it will be a reality, but not for me or my older daughter......Just having one of those days.....

Shrek4

Same went for me - very dense breast tissue. 8 months lapse of time between the clear mammo and the diagnostic mammo showed a large area of DCIS (presumed 6 cm radius). Ultrasound didn't see a thing. Stereotactic biopsy diagnosed DCIS. A month later MRI showed a 10 cm radius area in the right breast, and a 6 cm radius area in the left. Post BMX pathology showed a 4 cm area of multifocal (largest tumor 4 mm) with DCIS, LCIS, ILC, IDC and invasive cribriform in the right breast, left breast was in the pre-LCIS stage. BS said it was tehre for probably 20 years.

Definitely they should do extra screening for women with dense breast tissue.

barbe1958

Maybe those of us with dense breast tissue always get cancer? I was told my breasts were dense....

LRM216

Ironically, I found this article a few days ago and posted it elsewhere.  Perhaps it may help a bit to read it:

http://www.cancernetwork.com/breast-cancer/content/article/10165/1779763

YATCOMW

Crazy right?

Mine was 8 cm by 6 cm.....not seen on ultrasound or mammogram.....if I did not convince the doctor to do the biopsy anyway because I felt something not right....I would probably be dead by now.  so an ultrasound didn't help me either.....being my own advocate did.

Jacqueline

Maureen813

5cm tumor was missed on my mammo the year before.  They even did a US and missed it too!!  Then my primary says, let's watch it and that went on for a year.  Finally, I called the BS, biopsy and bam SIIIa. Yes I have dense breasts. Only thing I worry about, I chose lump vs. mast and I'm worried it wasn't the right choice. I see so many women on this site that have re-occur with lump.

lago

Also remember that mammos and US are only as good as the radiologist reading them.

clariceak

It saddens me to see so many women with dense breasts being lulled into a false sense of security with mammograms.  I also have dense breasts, was never told it was a risk factor in itself, or that mammograms are often ineffective in my case.  I went from a clear mammo in Jan 09 to Stage IIIC by summer.

regalbeagle

We all have similar stories don't we.  I went for yearly mammograms as well having the BRAC 2 gene and my beloved sister having died just over a year ago from breast cancer after a 16 year fight.  My mom too has breast cancer and has metastised in her lungs. Consequently a portion of her lung was removed.  All that to say that I was being closely monitored with all the women in my family having the BRAC 2 gene and 2 of the 4 women with breast cancer.  I even went to high risk control center, but with all that they still discovered a 2.5 cm lump with an MRI.  It was quite by fluke really.  My mammograms had come out normal, my ultra sounds, normal and I had an MRI ONLY because of my family history.  In fact I waited 1 year to get that MRI and that is where they discovered my lump. 

What I find is that they put us all in the same category.  As good as the doctors are, they always seem to lump (no pun intended) us together as if we are not individuals and that the cancer will act and grow exactly the same for all of us.  The truth is it doesn't and we all are different so our cancers will (might) behave differently as well.  Treatments, screenings, have to be done in accordance with the individual's history, habits etc.  Our lives are priceless so the cost should be immaterial. 

 In the end they did find the cancer and we are still here so let us remember and be thankful for that and pray that we will one day find a cure for this horrible illness.

M.

suzanneinphoenix

They spotted a change on my routine yearly mammo.  Could not be detected on ultrasound, no matter how many times they tried.....and trust me, they tried!  I believe my 0.6 cm tumor was found due to the expertise of the radiologist. I also had very dense, proliferative breasts.  I do understand your frustration....we all do

Enjoyful

I'm so sorry, Cat.  As you can see by the answers, you're not alone!  You have a horde of angry, mammogram-betrayed women marching along with you.

I'd always been told I had dense breast tissue but was laughed at when I asked if it was a risk factor and/or a problem.  My mammos and ultrasounds were clear for years, including the ones performed 6 months before diagnosis.  The mammos and US missed SIX freakin' tumors in my right breast.  Once they knew I had cancer, though, a follow-up MRI showed everything.  Too late for me - diagnosed at stage III and now stage IV.

I've heard that mammograms are only 60-70% accurate.  Isn't that a failing grade?  I think we can thank our health insurance companies for paying only for mammograms and not the MRIs that could have saved us a lot of heart ache.

E

zap

It seems there a lot of us who were faithful about getting that mammogram and it failed to show the cancer.  Mine was 4.5 centimeters and probably ten mammograms later.  Ultrasound did not show it either.  My breasts are dense too and they said that was the problem.  Now I get yearly mri's on both breasts, so I would suggest that route.  I also get an annual mammogram and when they say it looks fine, I just  think...maybe....let's do the mri to be sure.

Four years ago I opted for the lumpectomy over the mastectomy.  I rethought that decision about a year ago and discussed a bilateral mastectomy with the surgeon and used the dense breast as the rational for doing so.  She told me that I would need to go to counseling and prove that I understood this is what I really wanted for myself as this was a big decision.  Not sure what I will do!

Take care to all!

amym159

My understanding is that breast tissue is generally more dense the younger you are. So I think this is a normal thing not a risk factor. And this is why there is such debate regarding the benefit of routine mams in women under 50. I also had a clear mam 9 mos before I felt my 2.5 cm lump. My 2 cents is that health care providers should do a better job explaining the limitations of mammograms!

barbe1958

Zap, counselling? Is your doctor serious? Many of us didn't have TIME for counselling. It's often a matter of life and death. But I do think the fact that her comment made you think tells me you made the right decision. I preferred not to have to worry each and every year. I NEVER had a mammo where I didn't get more pics done or ultrasound. It was only a matter of time. My tumour was right on my chest wall so I don't see how a mammo would have picked it up. It wasn't until I had a bloody discharge that they sat up and noticed.....

lago

My mom and sister both have very dense breast tissue. My mom's gyn told her she has the breasts of a 20yo no saging. Mom is 73, had 3 kids, sister, 53, had 2. Some people just have dense tissue. They refused to do a US on my mom. They will now to an MRI on her since she is now high risk (because of me) but she is unable to do that because of her spine. US is less expensive than an MRI but that's the medicare rules.

lorrhaw

Mark me down as another one failed by mammograms.  I had my annual mammo in December of 09 and received the letter in the mail saying "No changes noted, go on and live you life, blah, blah blah...."  Luckily every January I see a breast specialist because of dense breasts with fibroids that always had to be drained and she saw something that concerned her so she did a needle biopsy.  I found out the next day that it was breast cancer and three weeks later found out I was Stage IV with a spinal met.  Who knows where I would be one year later if it hadn't been for my breast doctor and had just relied on the mammo.

Lorraine

LisaMomOfFour

I'm another one.....   have had a few scares due to lumpy breasts, never found anything, routinely did both the mammo and ultrasound.    Clear on both in Feb, then seven months later, something felt different (not the cancerous lump, too deep to probably feel through a breast self exam).   Then it did show up on the mammo and ultrasound both.

Since my diagnosis, I have been preaching to everyone I know.... if you hear the "dense breast" story, insist on an MRI.  I would rather deal with a few false positives in order to catch BC as early as possible. 

pip57

Mammograms let me down too.  Just one of the reasons for bilateral mast. IMHO too many women are making tx decisions mainly based on their mammos and therefore may not have enough info.  My breast ended up being full of cancer!

zap

Barbe, I think I did not express myself well.  I had a lumpectomy as that was suggested in my case.  THREE  years later I was considering  a bilateral mastectomy just because I was so afraid it would come back and technology (except the mri) failed me.   I was cancer free.  If I had had cancer again, she would have done a mastectomy in a pinch.   She wanted me to go through counseling as I was considering removing,  two healthy breasts (although one looks darn funny) and she wanted me to be sure I wanted to do that.

I do not want anyone to think that she wanted me to do counseling before  removing  breasts with cancer!  Yikes!  Just to clarify.

barbe1958

Oh zap, you were clear in your first post! But the logic is that if your body knows how to make cancer.....it's not like you were going to commit suicide or move to New Zealand or something.....