What kind of prevention screening do you do? Dense breasts

Faith1111

I’m surprised my doctor only recommends annual mammograms, monthly self exams and bi annual physician breast exams for recurrence detection.

My cancer was stage 1, grade 1, no lymph node involvement, estrogen/progesterone positive, 2.5 mm in left breast. I declined Tamoxifen since my doctor let me choose. She said I had a 4% chance of cancer in left breast, 3 percent in right breast and 1 perfect for the body. Which makes it 8 percent or only 4 percent if I wanted to do tamoxifen.

I have implants and dense breasts. I found my cancer myself during a self exam. The mammogram showed nothing. I don’t believe a mammogram would ever show anything unless a tumor was much larger. My doctor thinks I would be able to find it again if I had a recurrence. I’m kind of blown away by that. I asked about annual MRIs and ultra sounds. A breast cancer radiologist told me they produce a lot of false positives and it’s like opening Pandora’s box. I asked about 3D mammograms that my insurance doesn’t cover and he said if I had to pick, an ultra sound would be better. Again, there might be false positives and biopsies.

I don’t know if I should put up a big fuss and at least get an ultra sound. I feel anxiety at the thought of even calling my oncologist about this. I already discussed all this with her last year but now I’m worrying about it all over again.

Anyone in a similar situation? I guess I could pay out of pocket for an ultasound. I remember a doctor telling me looking for breast cancer randomly with an ultrasoundis like looking for a needle in a haystack. It works better if you already suspect there’s a lump in a certain spot. I noticed my MRI before surgery was almost 8 thousand dollars. Yikes! Even if I got half off the price that’s a lot.

I hope I posted this in the right section. I didn’t know where else to put it.

Btw, my lumpectomy was June 2019, finished radiation September 2019. I was almost 49 when diagnosed.

Ingerp

Just chiming in to say I think many of us would welcome more frequent testing but the protocols are what they are. I did genetic testing *after* all of my treatment only because if they had found something (which they did not), I'd be getting alternating mammos and MRIs every six months. Your follow-up schedule sounds typical. My RO did adjust my appointments with her a bit so going forward I'll see my MO in Jan and Jul, get my annual mammo in May, and see my RO in Oct. At least that way *some* medical professional is having a look/feel every three-four months. I totally get where your head is, but at some point you have to trust your medical team.

MountainMia

Check to see if you can have a whole-breast ultrasound annually, either alternating with your mammo or at the same time. My BS didn't hesitate to order that for me. If either the mammo or ABUS finds something suspicious, you get referred to the regular US. ABUS isn't going to be available everywhere, so depending on where you live, it might not be easily available.

Beesie

I agree with Ingerp. Your follow-up sounds typical.

Is your breast density heterogeneously dense (Cat. 3 density) or extremely dense (Cat. 4 density)? If it's Cat 4 density, then you should be able to get a supplemental ultrasound, if not an MRI, in addition to your mammogram. But with Cat. 3 density, that's not usually done because at your age, Cat. 3 density is normal - it's what most women have.

I certainly agree that with your history of breast cancer, additional screening would seem reasonable, even though it's not standard to do it. But here's the problem. Neither a mammogram nor an MRI nor an ultrasound is likely to find anything smaller than 4mm or 5mm. No method of screening regularly finds tumors that are that small. Sometimes a lesion can cause a reaction in the breast tissue - distortion, for example, or the development of calcifications - and that might show up, but tumors that small often won't be seen. The reason for using different screening modalities is that not that one will catch something that is smaller, but because each 'sees' the breast tissue differently, and highlights different things. Therefore even larger lesions might not be seen on one modality but may be seen on another. I had 7+ cm of high grade DCIS along with a 1mm microinvasion of IDC - some of it showed up on my mammogram, more if it showed up on my MRI, nothing at all showed up on my ultrasound. Similarly, there are women here who have had larger solid IDC tumors that haven't shown up on mammograms but have been seen on ultrasounds. I'm sure that doesn't make you feel any better about only having one modality of screening, but it's important to know that small lesions may not be seen by any type of screening.

Lastly, I'm very surprised at the risk figures you were given. For your cancer diagnosis, yes, a 1% risk of mets seems reasonable for a 2.5 mm grade 1 tumor - I was told about 1% for my 1mm tumor. And a 4% local recurrence risk, with a small grade 1 tumor and good surgical margins (I'm assuming that), is also reasonable. But a 3% risk in your right breast? No. You are a woman. Just because you've had breast cancer before doesn't make you immune to develop breast cancer again. In fact because you've had breast cancer before, your risk to develop a second breast cancer, a new primary in either breast, unrelated to your previous diagnosis, is likely higher than the risk of the average woman. I had just turned 49 when I was diagnosed. The average 49 year old has an 11% lifetime risk to be diagnosed with breast cancer. S0 your risk has to be at least 11%. But my MO told me that my risk to be diagnosed again, at some point of my life (with approx. 40 years ahead of me) was about double that of the average woman my age. So that meant that my risk was about 22%. The only good news with that risk figure is that it goes down as we get older. This is simply because the 22% (for me) is the addition of the risk for every year of life. So as the years pass, we have fewer years ahead of us, and therefore our lifetime risk to be diagnosed goes down. What's important to understand, however, is that for all women, the highest risk age to be diagnosed with breast cancer is when we are in our 60s and 70s. So while cumulative lifetime risk goes down, annual risk - the risk level associated with just that one year - is highest when we are in our 60s and 70s. And that's another reason to push for supplement screening.

Lastly, this risk is not additive. Each risk is a separate and distinct risk. Your local recurrence risk of 4% could have been reduced by approx. 50% if you were taking Tamoxifen. Your distant recurrence risk of 1% could have been reduced by approx. 33% with Tamoxifen. And your risk of a new cancer - as I said, based on my understanding, I think it's significantly higher than the 3% you were told - could be reduced by at least 50% by taking Tamoxifen - but not for the entire rest of your lifetime. Tamoxifen will reduce your risk for the period during which you take it. And it provides an extended benefit, at a reduced level, for many years afterwards. But 5 years of Tamoxifen would not reduce your new primary risk by 50% for the next 40 years. That's important to know too.

All that to say that while your screening protocol is normal, given your breast cancer history, I think it's reasonable to make a fuss and push for a supplemental ultrasound, in addition to your annual mammogram.

dtad

Faith...did you have IDC or ILC? Wondering because ILC usually does not show up on a mammogram, even a 3D. IMO you should be getting ultrasounds annually. Good luck and keep us posted.

MelissaDallas

The dirty secret about “screening” is that (probably aside from DCIS) most breast cancers are found by diagnostic mammogram plus ultrasound because somebody feels or sees something. Not from screening mammograms

ShetlandPony

Faith, is it that your insurance does not cover 3D mammograms, or is it that the facility they send you to does not have that equipment? For heaven’s sake, with a personal history of breast cancer you should at least be getting that. I would insist on it, look into going to a different facility, etc. It is true that breast MRIs can lead to biopsies, but I have the same question as dtad — did you have ILC? And as Beesie asks, are your breasts extremely dense? Either of those things would be an argument for MRI.

Just a note on language here in Pinktober, regarding the title of this thread: Screening is not a form of prevention. It only finds what is there.

Faith1111

I had IDC.

Faith1111

My insurance, Kaiser, doesn’t have 3D mammograms, only the regular kind. They seem behind the ball, it’s outrageous. They don’t have Fast MRIs, either. I was reading about those the other day. Far less expensive and almost as good as the longer MRI.

Faith1111

Sorry for all the separate replies. They never told me what category of density I have. I called the radiology department just now and the woman answering the phone didn’t see where it mentioned the category and told me to call my main doctor to ask. She did say it said NC3 but she couldn’t verify that meant what category it was. I have a feeling that’s what it means but I’ll need to verify.

Faith1111

Bessie, my oncologist gave me those numbers after punching my info into an online breast cancer assessment calculator. She was trying to explain to me why she felt comfortable letting me decide if I wanted to take tamoxifen. I’m not saying your stats are wrong, I’ve seen similar stuff online.

My grandmother got cervical cancer from taking some kind of hormone or medication. So I don’t like the increased risk tamoxifen poses. Also I read it can increase your risk of getting an aggressive form of BC by 440%. Not to mention cataracts, and hearing loss when exposed to certain decibels of noise. Those estrogen receptors are everywhere! I dug deep for info on tamoxifen and found controversy about the panel members that approved it, saying there was financial motivation. I don’t doubt it would help women with high risk, but since I am smaller risk and it didn’t hit my lymph nodes, I didn’t want to deal with the small benefit it provided and all the drawbacks.

AliceBastable

Tamoxifen is a hormone BLOCKER, the opposite of taking hormones. And please provide citations for the side effects you are claiming; I've never heard or seen any of those.

Beesie

"I dug deep for info on tamoxifen and found controversy about the panel members that approved it, saying there was financial motivation."

Tamoxifen was approved in 1998. There are dozens of patient studies that have consistently found a benefit - approx. 45%-50% reduction of local recurrence risk, approx. 30%-35% reduction of metastatic recurrence risk, and approx. 50% (higher in some studies) reduction in reduction of new primary risk. There is no debate or question about that. Millions of patients have taken Tamoxifen over the past 20 years and undoubtably hundreds of thousands of lives have been saved. Whatever websites you read that question the approval or efficacy of Tamoxifen are not reliable medical sites.

But like any drug, Tamoxifen does have side effects. So the question for anyone who is considering Tamoxifen (or an AI) is whether their individual risk level warrants taking Tamoxifen. It's perfectly reasonable to decide that one's risk without Tamoxifen is low enough that it's not worth the potential side effects - that's the decision I made for myself - but to suggest that there might be controversy in the approval if Tamoxifen is simply wrong.

As for your risk, there are a number of models that your MO might have used to determine your recurrence risk from your diagnosis. Adjuvant Online and PREDICT are the two mostly commonly used. The figures your MO gave you for your local and distant recurrence risk (4% and 1%) are reasonable and likely came from one of these models. To my knowledge, there are no models that predict the risk of a new primary breast cancer for someone previously diagnosed. And the figure that your MO gave you for this (3%) is completely illogical; that's a lot more blunt than I like to be - I'm just a patient, after all, not a doctor. You were diagnosed with breast cancer at the relatively young age of 49. Your breasts have shown that they are fertile ground for cancer cells. Then how could your risk to develop breast cancer at some point over the next 30+ years be less than 1/3rd that of the average woman, someone who doesn't have any personal history of breast cancer? It defies logic. Take a read here:

Second Primary Breast Cancer Occurrence According to Hormone Receptor Status https://www.ncbi.nlm.nih.gov/pmc/articles/PMC27209...

"For women whose first breast tumors were HR positive, risk of contralateral primary breast cancer was elevated, compared with the general population, adjusted for age, race, and calendar year (SIR = 2.22, 95% CI = 2.15 to 2.29" This says that the risk of breast cancer for someone previously diagnosed with an ER+ cancer is more than double that of someone who's never been diagnosed before.

I've been on this site for a long time. I have seen dozens of posts from women who are shocked to be diagnosed with a new primary many years after their first diagnosis. I always feel so sad when I see those posts. I can understand someone being angry at being diagnosed a second time. I can understand someone thinking it's not fair. But no one should be shocked, because anyone diagnosed one time should be told the truth by their MO about their future risk. The odds are still very much in their favor that they won't be diagnosed again, but everyone should understand that having been diagnosed one time, we all fall in the range of being 'high risk' to be diagnosed again.

Lastly, breast density. It sounds as though you have Category 3 density, heterogenously dense. This is the most common density level for women your age, and usually does not warrant supplemental screening.

MountainMia

I'm going to add an analogy about risk. There is some measure of risk, or average incidence, for car fender benders where you live. In other words, some percent of cars will be involved in a fender bender each year. Yours might be one of them. If it IS your car, that does not remove your risk of having ANOTHER fender bender. If you still drive about the average amount for cars in your area, you still have approximately the same risk of being in a fender bender. Another one.

If you're diagnosed with breast cancer once, it doesn't give you some automatic protection from have another occurrence. There are ways to reduce your risk with various treatments like surgery, chemo, radiation, hormone blockers. Like driving a lot less might reduce your risk of another fender bender. But absent those treatments, your risk is probably about as high as it ever was of having another diagnosis.

I agree, we should be told that our risk is at least as high as the average for women our age. I still have breasts and because of my triple negative diagnosis, I don't have any AI to reduce my risk. And as Beesie said, something about my body may well make me MORE likely to have another incident, not less.

MinusTwo

Faith - I have to jump in to defend Kaiser. They certainly have diagnostic mammograms - not just screening mammograms. And they certainly have ultrasounds.

From everything I've heard, Kaiser is a good system. They just like to keep control. Example - a PCP thinks he/she can do full body scans instead of referring to a derm doc. Maybe your individual doctor doesn't do the tests you want, but they have it in their systems. You may have to fight for the tests you want & drive to a different location.

Edited to add - not so different from Kelsey Seybold in Houston. Or any medicare HMO plan.

ShetlandPony

MinusTwo, one of the things Faith said above is that Kaiser does not have 3D mammograms. Unless I missed something the issue was not screening mammogram vs. diagnostic mammogram, but rather 3D vs. standard 2D mammogram. I don't know if you have any info on Kaiser and 3D?

https://www.breastcancer.org/symptoms/testing/types/dig_tomosynth

https://www.breastcancer.org/research-news/3d-mammos-better-than-2d-for-65-and-up

MinusTwo

Sorry SP - I don't. My experiences with Kaiser are based on what I believe is their quality of care. And of course I don't live in CA, so things could have totally changed.

moth

MountainMia - actually we already know this is true "something about my body may well make me MORE likely to have another incident, not less" Once you've had cancer, we know your immune system failed once to take care of rogue cells & having made that mistake once, they're apparently more likely to make it again. Cells are constantly mutating (and they mutate more as we age, hence the higher risk as we get older) but our immune systems are supposed to take care of it. There are so many safety protocols in the cell system to prevent tumor growth. I spent weeks in a pathophysiology class kind of wondering how cancer ever developed because we were studying all the inhibitors and suppressor genes and phagocytes and lymphocytes etc etc. Then we moved on to how cancer cells evade these systems and then I understood...

Epidemiology studies show that having had cancer before is a risk factor for cancer again so I don't think we'd ever fall back to the risk level of the general population

Beesie

If you do a search on "Kaiser" and "3D mammograms", you'll find all sorts of links to Kaiser websites. I don't know where Faith lives, but the unavailability of 3D mammos is likely specific to her location, because they have not yet purchased the equipment. 3D mammograms are available at other Kaiser locations.

I'm in Canada and I see the same thing all the time with posts on this site where someone says "In Canada we don't ...". Almost always the issue is specific to the location, whether it's the province (since healthcare is provincial, not federal), or the town (smaller locations, whether in Canada or the U.S., may not have as many options and testing may take longer) or the testing facility itself (the availability of equipment and scheduling lead times are specific to the location). And sometimes it's actually the judgement of the particular doctor, who is deciding what tests to order and it has nothing to do with any rules or regulations about what is available.

ShetlandPony

I figured it was an issue with her particular location not having the equipment. Faith, if you believe 3D is important, advocate for yourself and go to a Kaiser facility that can do it.

MinusTwo

Bit of related humor. I was raised in California. People always said "oh you must know....". Since I moved to Texas it's even worse.

Beesie

Minus, that's a big one for Canadians. "Oh, you're from Canada? My friend Joe Schmo is from Canada. Do you know him?" Never mind that we may live 4000 miles from each other.

The funny twist on that was someone I knew saying one time that he was on a plane, somewhere else in the world, chatting with his seatmate, who was from England. The usual "I know someone from Canada..." came up, and it turned out that the person his seatmate knew was his next door neighbour.

Faith1111

I know, that’s why I wanted a double mastectomy with implant reconstruction but they talked me out of it. But I can’t bring myself to take tamoxifen. I was willing to remove both breasts but not take that pill. That’s what upset me the most.

Faith1111

I’ll start calling different counties. I’m in CA.

Jons_girl

Faith: Grrr. Kaiser! one thing I’ve learned about kaiser is boy do their pts have to advocate. I mean other systems you have to advocate for yourself too but I’ve had a family member and friend go through stuff with kaiser. Not going to say more other than, push them for what you want.

Also you could check the law in California for breast density laws. I live in Oregon. We legally have a right here if we have category 3or4 breast density for other diagnostics other than mammo. California May have a similar law. www.areyoudense.org would list the law there on their site.

Also, I don’t have implants but I felt my tumor like you did. Also I was stage 1 grade 1. Ultrasound saw my tumor which was 4mm like the size of a bb. Mammo completely missed it. My MO supported my decision for no rads or meds. But I go have diagnostics every 6 mo. That’s my treatment going forward. Just watching. I do have breast cancer in my extended family. I’m having screening MRI for my next 6 mo diagnostic check. But will probably have two types of diagnostics going forward per year as all types of diagnostics see things differently.

Just sharing my path forward. But we all have different paths. Hope all goes well for your journey forward.