Upset how they will screen me in future. Mamo.

Faith1111

I found my breast cancer. My mammography showed nothing. I have dense breasts and implants (prior to diagnosis and currently.) Had lumpectomy and finished radiation earlier this month. So I ask oncologist what is next and she says next May (anniversary of when I had last MRI) I will have only mammography for testing. I said, those are worthless, it' didn't find my cancer. I said I wanted an MRI next time and she said Kaiser doesn't do it like that. The only reason why they let me have the MRI is because I demanded one before surgery. This seems insane to me that I have dense breasts and the mammography didn't show my cancer in the first place. (My cancer was 2.5 mm) So do they just want me to play around until I get such a large mass that it goes into my lymph nodes next time? By the grace of God I found this tumor myself but I am scared to have it all weighing on my shoulders on whether I am able to detect it fast enough. I pray I never get it again but this seems so crazy. Is this the normal response doctors give people?

The doctor told me I have really good fingers for detecting since even they couldn't feel it at first. But you know what? My breast already feels firmer from the radiation so I don't think my breast will be as pliable as it was and that is what helped me feel the hard spot.

I can already tell I am going to have to complain every year like a dramatic attorney just to get the kinds of tests that I need. It shouldn't have to be this way. Is once a year too long? Shouldn't it be every six months? My cancer was slow growing, grade 1. Maybe that's why they think it's no big deal?

Meow13

I know most early detection the tumor is 1 cm or larger. Yours was 2.5 mm wow hopefully you won't get a recurrence. Was it hormone positive? I have dense breasts and get an MRI once a year also a mammogram.

I had two 1cm tumors one IDC and one ILC, I wish they were found earlier mine could not be felt.

Hopefully, the technology will continue to improve.

Valentina7268279

Faith1111, I was in similar situation like you: mammogram was oki...ultrasound showed what they thought was a small cyst. I also have dense breast...then I don't know what happened, I still think it was really a miracle, I went to another doctor and she said: yes it is a cyst, would you like me to confirm now ? Or would you come back in 3 months? Then I said now. And it was not a cyst, I had the biopsy and one week after the diagnosis. My tumor was 3mm and I was 33 at diagnosis ( a couple of weeks after my birthday...so I was almost 32) ...I don't have breast history in my family at all. Usually at this age without good reason, they don't send mammograms or anything...in my case it was just a miracle. After diagnosis I had one MRI and this year in May another one. Mammogram I had last year in December but only from right breast. But every six months I do have ultrasound.

Soon I am having mammogram and ultrasound.

Jenkins00

I had dense breast tissue. Luckily the radiologist who did my mammogram saw the distortion. I had no lump and ultrasound didn't show anything. A year later after having a double mastectomy and breast reconstruction, no scans. I said to my BS why? Oh, we just feel. Feel?! You have no breast tissue so it would be useless. What about an MRI? We only do this if something pops up. Still doesn't make sense to me.

buttonsmachine

You can advocate to do a "high-risk" screening regimen. That's what I get, but I'm young and my cancer was a beast. Dense breast tissue is a good reason for MRI screening regardless, so you could appeal based on that alone.

This is what my Drs do for me: MRI with contrast in the Spring; 3D mammogram in the Fall, ultrasound as needed, clinical breast exams when I see my MO in general.

That way my remaining breast gets imaged at least every six months. I do not have suspense about it, so I don't mind regular screenings.

I hope you find a good solution, don't be afraid to advocate for yourself. Best wishes.

Spoonie77

I have the same screening plan as Buttons....MRI and 3D Mammo. I don't have any genetic mutations, but I was 41 at dx and have dense breasts. All 3 of my MO's have agreed that this is the proper surveillance for my situation.

Here are some studies:

Effectiveness of alternating mammography and magnetic resonance imaging for screening women with BRCA mutations at high risk of breast cancer

https://www.ncbi.nlm.nih.gov/pubmed/21365619

Alternating Mammography And MRI May Be Best For High-risk Women

https://www.sciencedaily.com/releases/2008/12/081214090343.htm

Breast density and optimal screening for breast cancer

https://www.mdedge.com/obgyn/article/148062/breast-cancer/breast-density-and-optimal-screening-breast-cancer

MRI Finds Breast Cancer at Earlier Stage Than Mammograms in High-Risk Women

https://www.breastcancer.org/research-news/mri-finds-bc-at-earlier-stage-than-mammos

keepthefaith

faith, you don't mention the type of BC you have. ILC can be difficult to detect on mammos. MRI's seem to be a better imaging for ILC. If you get mammos, get 3D mammos. You may want to talk to the RO or get another opinion if you feel you need more screening. Best wishes.

farmerlucy

You might ask the center for the cash price, then perhaps run that through a Medical Savings Account if they offer those at your work. At my center they bill insurance thousands of dollars but the cash price was around $850. And you might consider getting one every 18 months to save money. 2.5 mm is an amazing find even with an MRI.

Rrobin0200

I am monitored every 6 months, and I request an ultrasound every time. My breast surgeon does the US without any hesitation.

Faith1111

thank you buttonsmachine that’s great info!

Faith1111

thank you farmerlucy and. R Robin !

jcp

Fauth111 I have fought before and my dr doesn't bend.

I have moderately dense breasts. I believe there are three levels of density. I have density but not extremely dense breasts according to last report, so I'm in the middle category. What category are you? It is crazy and now that I finished 10.5 years of hormone therapy, I do not feel protected anymore. I'm also older now so percentages to get it are greater. What I did is I went to a company that's in like three states that does breast cancer screening through ultrasound. The first time I went was beginning of March . No dr order is needed. You get a report back in two weeks

It is not detailed unless there's a problem. For example my letter back to me had radiologist say "normal. " yes I'd much rather get a mri 6 months after my mammogram but I thought this is better than no screening at all I suppose. I had asked my onc could I get two mammograms, 1 every six months and I would pay for it even if insurance doesn't. She said she wouldn't know what to write down on order unless there's a problem. Same w MRI. I almost left that onc bc her recommendation was to get bilat mastectomies so I didn't worry so much. She said it wasn't medically needed but would Lower my chances but she said it was for my worrying bc I had asked for MRI. Yeah, great, I go from a MRI to a double mastectomy with reconstruction. That's a lot of surgery w a lot of risk. At the time I did my surgery in late 2005, it was all about breast conservation. They never really recommended a mastectomy. I was in shock w dx and couldn't even think straight. I had just gotten remarried 3 weeks prior to my diagnosis and moved 300 miles away to be with my husband bringing my 6 year old w me. I had no friends or family here at all. It was very tough. I so wish I was at least given or told about option of mastectomy. It was like you need a lumpectomy .... Now I get the same screening that a woman who did not have br ca , one yearly mammogram. It's not enough. It makes me upset! Anyway, I understand.

JCP

jcp

Valentina7, How were you set up for mammogram and ultras at that age?

Valentina7268279

Hi jcp, I insisted a lot...I went first to my doctor in July 2017 and he said everything was fine, he couldn't feel anything, I went back in August and had an ultrasound....he said everything was ok. Then I went again in October and asked for a mammogram...I guess he was just tired of me insisting like that and he agreed. After the diagnosis I did see him once and then decided to change doctor...

Jons_girl

Wow lots of us with the same story! I will never have another mammo! They don’t work for me. My cancer was not seen on 3D mammo in 2017. I’m probably adding MRI yearly this yr I like this website: www.areyoudense.org really amazing stories there like ours! And other good resource info

I chose for treatment only surgery. No hormone blockers or radiation. I have screening diagnostics every 6 mo. Ultrasound. But may be adding mri as my breast dr prefers two different modalities.

Blessings sisters! Love you all! We are here for eachother

Beesie

Jons_girl (and others), I know that I've mentioned this to you before, but I will say it again.

Mammos do work, even for those who have dense breasts - but not in every case and not every time.

Ultrasounds do work - but not in every case and not every time.

Neither mammograms nor ultrasound are effective all of the time, and this is why for those of us who have dense breasts, having both a mammogram and an ultrasound is the recommended approach. Each screening modality views the breast differently, and as a result, they "see" different things. So while a mammogram might miss something that an ultrasound picks up, particularly for someone with dense breasts, it is equally true that an ultrasound might miss something that a mammogram picks up, even for someone with dense breasts.

I realize that several of the posters here had their cancer picked up by an ultrasound after it was not seen by a mammogram. My diagnosis of DCIS-Mi was the opposite - despite having extremely dense breasts - my cancer was seen on a mammogram and not seen on an ultrasound.

And here's the thing. The way that someone's cancer presents one time is not necessarily the same way that either a recurrence or a new cancer will present the next time. So the fact that the ultrasound found the cancer last time doesn't mean that a recurrence will present the same way and again be visible on an ultrasound. It could happen that way, or it could happen that next time an ultrasound will miss the cancer whereas a mammogram would find it.

I am by no means suggesting that mammograms are enough for anyone with dense breasts. What I am saying is that ultrasounds too are not enough. The best tool to add to screening for those with dense breasts is an MRI, but those are not readily available to everyone, and annual MRIs might not be advisable given the concerns with gadolinium, so combining a mammogram with an ultrasound is the next best thing. To have an ultrasound only is to do yourself a disservice, and put yourself at risk.

https://www.radiologyinfo.org/en/info.cfm?pg=breas...

"Mammography is the only screening tool for breast cancer that is known to reduce deaths due to breast cancer through early detection. Even so, mammograms do not detect all breast cancers. Some breast lesions and abnormalities are not visible or are difficult to interpret on mammograms. Breasts that are considered dense have a lot of glandular and connective tissues and not much fatty tissue, and that makes cancer harder to detect....

...Many cancers are not visible on ultrasound. Many calcifications seen on mammography cannot be seen on ultrasound. Some early breast cancers only show up as calcifications on mammography."

.

Annual Mammograms vs. Annual Ultrasounds

.

Ultrasounds Effective in Detecting Breast Cancer, but You Still Might Want to Have a Mammogram

"Breast ultrasound has its advantages, too. The technician may look for lesions hidden within dense breast tissue (parenchyma), Koehler added. There's no radiation involved.

How effective an ultrasound exam is depends on the skill of the person performing it. Human error can lead to overlooked lesions or misinterpreted results. But unlike mammography, ultrasound can't make out architectural distortions, calcifications, or asymmetries...

..."One is not better than another," she told Healthline. "They are complementary. They should be seen as such and used as such rather than one as a substitute for the other. At least this is the case where both are widely available."

Jons_girl

Hi Beesie: Thank you for sharing. I’ve never said I don't believe on this site that others cancers weren't caught by mammo. Or that people shouldn't have them. Like I said on other posts mammos work great for approx 60% of women. I'm one of the 40% they don't work so well for.

If you could have seen my mammo films you would understand. It's all white! I do not believe even calcifications would be seen. And I'm very small breasted so not much there to squeeze into the machine

For me, mammos aren't the right choice. I saw my films. I have them. And yes I'm not even sure having mri yearly is a good decision due to gadolinium. I'm considering all my options. But having a second different diagnostic is a good thing my breast dr wants me to do that

One thing I do too is stay with the same radiologist and ultrasound tech. Same eyes. The radiologist caught my first Br cancer. I trust him. And ultrasound tech is a tech who's been ultrasounding for quite a while

Again this is just MY choice. I realize mammos do work great for many people. And that's the right choice for them. There are some here who ultrasound doesn't work well for. Not all work for all. I get that.

But there are people who come to this forum who don't realize that mammos (standard of care) don't always see cancer. I share my experience with people here and try to also explain what I choose for diagnostics may not work for them. It's a individual choice. And we make the best choices we can for ourselves. I e never had a breast mri and with my risk factors my insurance would pay for one so I may go that route too.

Beesie

"If you could have seen my mammo films you would understand. It's all white! I do not believe even calcifications would be seen. And I'm very small breasted so not much there to squeeze into the machine"

Yup, that's me too. Exactly the same. Yet the calcifications showed up as little specs - bright, almost fluorescent, white spots on top of the rest of the white - on the mammogram imaging. Not all of them showed up - my subsequent MRI highlighted a much larger area of concern that the mammo. And the calcs appeared less ominous on the mammo than they turned out to be - the Radiologist and my breast surgeon didn't think they represented cancer and yet I ended up with a breast full of high grade, very aggressive DCIS and a tiny invasive cancer. But on the ultrasound... absolutely nothing.

I get that the mammogram didn't work for you last time. But what I'm saying is that the ultrasound might not work for you next time. The message - to you and everyone else with dense breasts - is to get them both, a mammogram and an ultrasound. Because combined, they increase the odds that a cancer will be found. It's that simple.

Jons_girl

Thank you Beesie for pointing out this info. You are right. I am just scared to have a mammo miss anything that might come back. Then I would have used up one of my tests for the year that was useless. But you are right it can see stuff just not sure if it would see anything on me?

So in your opinion then would MRI see the microcalcifications better on a extremely dense breast tissue exam? I would like to see the photos of what that looks like on a extremely dense mammo film. That would be interesting.

So your radiologist and breast surgeon didn't think the microcalcifications on the mammo were cancer then til they saw the MRI? Wow that is amazing about the ultrasound missing your cancer. Wow.

So getting a ultrasound and MRI too would be probably preferred over mammo and ultrasound too correct? Since it is more sensitive.....just guessing. Thank you for sharing this info. That is interesting! Yes I definitely know that not all diagnostics seem to work for all women for sure! I get that. And I am not saying if you have dense tissue that you should always have a ultrasound. That is each of our choice for sure. But I think having two different diagnostics is important probably. My breast dr prefers that I have more than one type. I just am trying to figure out which one.....don't like gadolinium contrast. There is another test that I was told about something like breast specific gamma something. It also uses a contrast agent. Not sure what pros there are to that test? But that was a option for me too. It is a older type of test I think.

Beesie

Jons_girl, you are right. A mammo might miss something. With dense breasts and being high risk (due to your previous diagnosis), a mammo alone is not sufficient. But an ultrasound might miss something too. So the best chance you have of finding anything that develops is to have two modalities of screening. If it is agreed by your doctor that you should have both a mammo and an ultrasound, the two would usually be done in tandem, so you wouldn't be "using up" a test for the year - the two together would be considered a single screening.

Here are three pictures of breast calcifications in breast tissue with varying degrees of density:

From my understanding, an MRI combined with either an ultrasound (as you are having this year) or a mammogram is the preferred screening for those with dense breasts. But not everyone can get MRIs every year, and not everyone wants to have an MRI every year, due to the gadolinium concerns. So a mammogram + ultrasound combo, particularly if it's a 3D mammo, is the next best thing.

I've heard of Breast Specific Gamma Imaging (BSGI) but I'm not familiar with it. According to the Radiology Info site, the main downside appears to be the exposure to radiation, although it also says that BSGI is "not a primary breast cancer screening tool. It is not a replacement for mammography or ultrasound"

RadiologyInfo.org for Patients Scintimammography

Jons_girl

Hi Beesie:

Thank you for this info and the pictures. I do understand why my dr prefers me to have two different modalities for screenings. And I do tend to agree with her

What I was referring to is I am checked/screened every 6 mo. I choose ONE diagnostic modality each 6 mo. My dr suggested I add a different kind of diagnostic so I’d be having two different diagnostics done each year. Due to the fact I did not have radiation and am not on hormone blockers. So yes I just get to choose two each year.

I’m not sure about gadolinium and so I’m hesitating to get mri. But am thinking about all this. Thank you for sharing this info.

Veeder14

My tumor only showed up on mri and I was given that screening due to being high risk. Radiology attempted to find it on ultrasound After but couldn’t and it didn’t appear on the mammogram. Because of that I requested follow Up of mri 2x year but the MO said insurance would never pay for it. So I alternate between mri and mammogram but it seems like I only have an effective screening method once a year-the mri

Jons_girl

yea MRI is a great diagnostic tool for sure! That's great it caught yr cancer

I’ve heard lobular cancer can be difficult to see. So maybe MRI sees lobular cancer the best?

BCat40

I had a mammo and US together due to having dense breasts (my PCP sent in order for both). The US found my 8mm tumor and the mammo found an area of calcifications that turned out to be LCIS and ADH.

Since I have now had BC and am under 50, going forward I will have MRI alternated with mammo/US every 6 months. A little concerned about the gadolinium issue for an MRI every year but I have read a few opinions that it is safe.

Jons_girl

bcat40: thanks for sharing your experience. You have a great pcp to order both of those. That’s not customary I don’t think for pcp’s to order.

Can I ask what dx level of density you had for the mammo to see yr microcalicifications? Four levels of density in the birad classification. 1. Mostly fatty. 2.scattered density 3. Heterogeneously dense 4. Extremely dense. If you wouldn’t mind sharing that I’d appreciate it.

I think it’s great yr follow up includes all three within a year. I too am concerned about gadolinium. That’s why I’m dragging my heels about the decision to have one. My breast dr wants me to have one. But my surgeon had said not to have one years ago because of gadolinium. So I’m not sure what to do.

But with my density (level 4) I would like to have mri. I wish they could perform breast mri without contrast.

I was just under 50 barely when I caught my tumor.

Oh another question I had for you, you caught yr lobular cancer so early! But I thought you can’t feel lobular cancer? Like I thought it doesn’t feel like a lump? Can you share anything about how you caught it so early?

Thank you. Sorry for writing a book

Togethertolearn

Maybe this will happen to you too - I just had my year from diagnosis mammo and I have my other mammo results going years back, I started getting mammon's early due to family history, and have always been told VERY dense, always. Not just dense, very. This is on my previous mammo results. But the mammo I just got specifically said NOT dense! Huh?! I contacted my surgeons office they said yea that can happen with age. I went from 45 to 46 years old. If these were my actual results, which they say they are, I'd guess it's from the evil tamoxifen I tried to use for several months before quitting entirely. So maybe you will magically lose your density if you reach the ripe old age of 46????? Then mammograms can see easier.

flashlight

Hi Togethertolearn, I just changed MO and met with her last week. During my exam she said my breast shouldn't feel so dense. My surgeon said in 2018 that as you age your breast become less dense. I just turned 69! I think you are way too young for this just to happen.

Jons_girl, How do you get a density level? Is that only with a MRI? My new MO ordered a 3D and ultrasound.

BCat40

Jons girl, My breasts were categorized as heterogenously dense. My PCP ordered both tests because she said a lot of younger women need both due to breast density and she didn't want me to have to take 2 trips.

Here's some info on the MRI dye--apparently there are 2 formulations and one might be safer than the other, and also they are looking into potential alternatives. I know I don't have kidney problems and I didn't have an allergic reaction the first time it was used. I probably would not decline the dye on a once a year basis at this point.

https://medshadow.org/mri-gadolinium-contrast-agent/

https://www.itnonline.com/article/debate-over-gadolinium-mri-contrast-toxicity

As for catching the ILC, neither I nor any doctor felt anything on exams but I was having a random sharp pain a few times when taking off my sports bra after working out. PCP sent me for Mammo/US. Mammo found calcifications which were LCIS and US found the 8mm ILC tumor. No one thinks the cancer was the cause of the pain, however there was also (benign) sclerosing adenosis in there (found on my post-surgical biopsy), which may have been the cause of the pain and what may have saved me from finding the cancer late. I also was planning on putting off first mammo until age 50 due to lack of family risk factors or other risk factors, and it was the random pain that sent me for the mammo at age 40.

BCat40

Flashlight, they are able to tell you your breast density level based on your mammogram. In certain states, there is a law that when they determine you have dense breasts from the mammogram, they have to send you a letter notifying you of this and that you may need an ultrasound to get a better picture.

MinusTwo

Just wanted to add my experience. I started having mammograms at age 30 in 1974. At that time the machines produced a blue line picture, like a Xerox. I still have the picture and it's a hoot. So because of the dense breasts, I had a mammogram EVERY year for almost 40 years. EVERY year they started with a screening mammogram and then called me back EVERY year for a diagnostic mammo and sometimes an ULS. So as you can imagine when the radiologist said biopsy in 2011 - I sort of laughed her off and went back to my GYN. She recommended I see the head of the department at a major medical center hospital for a repeat ULS and maybe a biopsy. And yup - DCIS - at age 67 after 37 years of dense breasts & no cancer.

I had a BMX so I wouldn't have to worry any more. Surgeon got clean margins so no other treatment since I was hormone negative and Stage "O". Some micro dot escaped so I had what was called a "local recurrence" in a lymph node by my collar bone after two years. Oops - now HER2+ & stage 3, so neoadjuvant chemo, ALND surgery, more chemo, rads & herceptin for a year.

Here's the thing - I have no breasts so no mammos to squish the implants. I had a couple of MRI's - to confirm the diagnosis of recurrence by ULS and to confirm everything was clear after 2 years. After the 2nd surgery, I was told no testing needed. Yeah, right, like that's going to make me feel secure. My beloved MO retired and he had already told me I might have to push so I wasn't surprised. So 6 years after the 2nd surgery I went back to the head of the dept at the other hospital. He agreed to to ULS and MRI - (mostly because I have textured implants, though having no problems). After everything came back clear, he recommended ULS every OTHER year. Along with continuing standard blood tests every 6 months with a cancer antigen thrown in.

So it's still scary what might happen in between, but I really trust this man and no way will I have the contrast & heavy radiation with an MRI unless he says there's something suspicious.

TMI, I know - but some things to think about.

And I agree with Beesie. Get the mammo AND the ULS w/o question - even if you have dense breasts & think one or the other is "useless". Most insurance will pay for a screening mammo w/o question, and if they have to order a diagnostic mammo to get more clarification, they usually add an ultrasound and both are paid for. Then you just have to decide how often you want to have the heavy-duty radiation of an MRI, not to mention the contrast dye.

Jons_girl

Togethertolearn: Thank you for sharing. Yes my density changed when I was younger. But normally stayed I think pretty dense. As I got older it appeared to have gotten more dense. I started having pretty regular mammos after my maternal gma died in 1999. I was 32. By the time I was 49/50 I was extremely dense level 4. That is when I got dx with my breast cancer. They didn't start actual density levels (birad levels of density) way back when I was in my 30s. Not sure when that density level dx started. But I know a few years ago I was heterogenous I think and other times I was very dense. But when I got cancer I was deemed 'extremely dense'. So not sure if density changes monthly or what? But it definately did change.

A side note: my mother who is in her 70s is still dense breasted.....so maybe I have the genetics of dense breast tissue from her?