ADH Club
Comments
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Benign---what a wonderful word! congrats on the good news! you probably have a hematoma; try putting ice on it periodically; it will take some time to resolve.
anne
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Thanks so much everyone! Yes, benign is a wonderful word!!
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Congrats on the wonderful news mvspaulding. So happy for you!
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I would like to join the ADH Club....not by choice but by the need to hear from others. I was just diagnosed with ADH on Aug.19th after having a stereotactic biopsy. No history...everything normal and no BC in my family. I consult with a surgeon next Wednesday to have surgery for any remaining cells. I am in the dark but reading many of your posts. For now I am observing but may ask questions.
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Welcome, clepant. While this is not a club that any of us would necessarily choose to be in, I think you'll find a lot of useful information. Unfortunately, this is a topic that I now know a great deal about myself, so don't hesitate to ask anything-- there are a lot of very knowledgeable women on this board. This dx can be confusing and overwhelming, especially in the beginning.
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Thank you momoschki. I appreciate your response. Knowledge is power and knowing what my options are and from those have gone before me will be of great benefit. I know this is not a club but as you say, it is a group that will be able to encourage, share and provide good information. I know that I will have lots of questions in the weeks, months and years ahead.
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Welcome clepant. I too was just diagnosed in August. There are a lot of great people here.
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Question...if answered previously, please excuse my brain fog! How can II be sure that the surgeon removed all of the atypical cells? I mean, couldn't there be other abnormal cells in other ducts? My symptoms were black nipple discharge and some sharp twinges of pain in my nipple. Most don't have the nipple discharge at all. My other side has the painful nipple issue but no discharge. My ADH did not show up on a Mammo, u/s, MRI or galactogram.
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Momcat, it doesn't matter if all the ADH was removed. ADH doesn't have to be removed. The reason that women with ADH have an excisional biopsy is not because the ADH itself is dangerous - it's not - but because of the risk that where there is ADH, there might also be some cancer hiding. This is why when doctors do an excisional biopsy of ADH, they are not attempting to get clear margins. They are attempting to remove enough of the area of ADH to ensure that no cancer is hidden in the middle.
When I had ADH found in a stereotactic biopsy, my doctor insisted that I have an excisional biopsy - which I really didn't want. But I very reluctantly agreed. The excisional biopsy pathology showed that along with that ADH was a lot of high grade DCIS and a tiny amount of invasive cancer. About 20% of needle biopsies that show ADH end up with a diagnosis of breast cancer; of those, approx. 15% are DCIS and about 5% include some invasive cancer. But most ADH - 80% - turns out to just be ADH. And most ADH always remains ADH and never develops to become cancer. So once it's determined that there is no cancer present, it's okay to leave ADH in the breast.
I realize that your diagnostic process was different, but in the end the important thing is that all that was found was ADH, and not cancer. With that finding, if there's a bit of ADH that's still in your breast, it's not a problem.
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Hi Beesie, I'm a little confused and hoping you can clarify. You mention that ADH doesn't need to be removed because in of itself is not dangerous. However, in another post you mentioned that ADH can turn into DCIS, which can transform into invasive cancer.
http://community.breastcancer.org/forum/47/topic/747287
This is of special concern to me because I was diagnosed with ADH in my "good breast." Thank you in advance. I always appreciate your thoughtful posts.0 -
kittymama,
Yes, ADH can develop to become DCIS, but DCIS itself isn't harmful either (and there is debate as to whether all DCIS needs to be removed, but that's another very long story). It's only when DCIS evolves to become invasive cancer that there is a real concern (i.e. it's only IDC that has the potential to be life threatening). So ADH is 2 steps removed from being harmful, and most ADH never takes even that first step. I read one study that followed women with ADH for a minimum of 13 years (some were followed for over 30 years) and 19% of those women developed breast cancer during that time.
In addition to ADH being 2 steps removed from becoming harmful, ADH is considered to be a marker for an increased risk of breast cancer rather than a precursor or pre-cancer. This is because although ADH cells can develop to become DCIS cells, even for those who eventually do develop breast cancer, that's not always what happens. Those who have ADH have a more generalized risk across both breasts (this is similar to LCIS). So removing the ADH doesn't remove the risk. DCIS on the other hand is a clear precursor to invasive cancer - it is the specific DCIS cell that will evolve to become IDC. So removing or killing off every last DCIS cell eliminates the risk of invasive cancer (at least as associated with that particular DCIS diagnosis) but removing or killing off every last ADH cell doesn't eliminate the "moderately increased risk" (quoted from the Stanford article below) that the patient with ADH might one day develop breast cancer.
Atypical Ductal Hyperplasia of the Breast
Atypical ductal hyperplasia is considered a marker of increased risk of carcinoma rather than a precursor lesion
- Its presence in a core biopsy is an indication for excisional biopsy
- In an excisional biopsy, margins are not relevant if it is the only lesion
- If the excision is for DCIS or invasive carcinoma and ADH is at the margin it is probably best to suggest re-excision
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Can We Know What to Do When DCIS Is Diagnosed?
Atypical ductal hyperplasia (ADH) is the most important entity included in the differential diagnosis for low-grade DCIS. ADH has histologic and molecular features that are similar to those of DCIS, but its natural history and therapeutic implications are quite different. ADH is associated with a bilateral increased risk of later cancer development (verified by several large epidemiologic studies) that is four to five times higher than that in age-matched controls.This contrasts sharply with DCIS, a nonobligate local precursor for which subsequent risk is localized to the same breast and same site as the index DCIS.
One note of caution in interpreting the above comment. When it's stated that the risk from ADH is "four to five times higher" the reference point is against those who have no significant breast cancer risk factors. So the risk from ADH isn't four to five times greater than the average woman's breast cancer risk of 12.5% but instead is four to five times greater than risk level we all face just for being women, before any of our personal risk factors are added in. That level of risk is around 4% - 5%. The 12.5% risk number that we always read about is the average risk level for all women together, and that includes women with ADH, women with LCIS, women who are BRCA positive or have strong family histories, etc..
Hope that makes sense.
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Very interesting and helpful. I was told by my bs that my previous history of ADH/ALH in the past (as well as found alongside the DCIS) is no longer helpful in predicting recurrence or occurrence in the other breast. Based on my reading of what you just posted, Beesie, about ADH being a marker of increased risk bilaterally, then my risk for the contralateral breast might actually be higher based on the ADH/ALH history (rather than based on the DCIS alone). I had a risk of occurrence of about 36 percent pre DCIS diagnosis (Gail score). My current recurrence risk on the ipsilateral side is about 12 percent. My risk on the contralateral side, who knows? I know that you and others have quoted 1 percent per year, and other quotes have been 5 percent lifetime risk. So, is a history of ADH relevant once one has been diagnosed with bc?
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"So, is a history of ADH relevant once one has been diagnosed with bc?"
Interesting question. I don't know the answer but I'd guess it's "Just a little bit".
Some risk factors are specific and unique while others are more generalized. Once any of us have been diagnosed with BC one time, we are considered to be higher risk to be diagnosed again. This is a non-specific risk; it's based on the assumption that since our bodies did something to start/allow the development and progression of breast cancer cells one time, we are probably more likely than the average woman to have that happen again. My oncologist told me that by virtue of having being diagnosed one time, I had about double the risk of the average woman my age to be diagnosed again. I've seen numbers in that range quoted by other women and on websites, but I've seen number that are lower (a 30% or 50% increase in risk) and I've seen numbers that are higher (3 times the risk or 4 times the risk).
So here's where I think something like ADH plays in. For someone with ADH, the likelihood is that the ADH was one of the factors that caused the development of the initial cancer. If that's the case, then you are in effect double counting your risk if you say that you have a specific risk from the ADH as well as generalized risk from the previous diagnosis. So I don't think you count them both, but you consider them both - in other words, your risk level becomes a blend of the two factors.
I would guess that someone who has previously been diagnosed but who has no known risk factors probably is a bit higher risk than the average woman to be diagnosed again, but most likely is not much higher risk - maybe this is someone who has only a 30% increase in risk. On the other hand, if someone has known risk factors, her future risk to be diagnosed again is probably higher - the question is, how much? When my oncologist quoted me the "double the risk" number, he knew that I'd had ADH and some (but not a huge amount) of family history. For someone who'd been previously diagnosed, he did not consider me to be particularly high risk, and I think that's where his "double the risk" came from. "Double the risk" puts me at the low end of "high risk". I know from recent discussions with my oncologist that if I had more significant risk factors, he would have assessed my risk to be higher.
What it comes down to is that these are all ballpark estimates anyway. There is always a range. ADH confers a risk of about 16% - 25% (or higher if there are other significant risk factors such as a strong family history). For me, 'double the risk' after my diagnosis meant a remaining lifetime risk level of 22% (at the age I was diagnosed 8 years ago) or 18% today (being 8 years older, my lifetime risk is lower simply because I have fewer years left in my remaining lifetime). Both risks are in the same ballpark so I figure that's where I am.
Helpful or more confusing?
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Beesie, so if I am understanding what you are saying, a person with a hx of DCIS only and a person with a hx of ADH only essentially end up with the same risk going forward? If the ADH individual has a 4-5X risk of someone with no known risk factors, then her overall risk comes out to be 20-25%, whereas if the DCIS person has a double risk of the average woman, that comes out to be around 25% also?
Another thing I am confused about after nearly 3 years: my risk (with ADH) increases 1% each year-- however, as you mention, being 3 years out from my original dx, I get to subtract those 3 years behind me from the overall risk going forward? Then how do the numbers come out re increasing risk going into the future vs. lessening risk for years already lived since dx cancer free?
(it's no wonder I took statistics twice, once in college, and then again in grad school, and still struggled to get a B!)
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Momoschki, my understanding is that both ADH and having a previous diagnosis of BC are factors that are thought to put someone at moderate to high risk (depending on what other risk factors that individual might have). So based on that, my guess is that yes, the future breast cancer risk for someone with ADH (i.e. this woman having a first diagnosis of breast cancer) and the future breast cancer risk for someone who's had breast cancer before (i.e. this other woman being diagnosed with BC a second time; it doesn't matter if the first diagnosis was DCIS or invasive) is probably in about the same ballpark. I wouldn't pin down the risk as being 20% or 25% however, since it differs by individual, depending on what other risk factors she might have. But those are good and generally accepted averages.
As for your comment that "my risk (with ADH) increases 1% each year", I'll admit that this is something I don't understand. I've heard other women on this board say the same thing and I've never figured out where that comes from. Did your oncologist tell you this?
Here's my understanding of risk. There are two ways to look at risk. One is to look at risk for a defined period of time - let's say "annual risk", or "5 year risk". As we get older, our bodies are more prone to fall apart, so naturally our annual risk goes up. Similarly, because our 5 year risk is simply the addition of our annual risk for the next 5 years, as we get older, our 5 year risk goes up.
According to the National Cancer Institute, here are 10 year risk estimates by age. I've added a column with the average risk per year for each year in that 10 year period. These annual risk numbers aren't really accurate because we know that annual risk when one is 40 will be lower than annual risk when one is 49 (because risk increases every year) but as an average over the 10 years, the number is correct, and it's close enough as an annual risk estimate:
. 10 Year Risk starting at age: Average Annual Risk
- Age 30 . . . . . . 0.44 percent (or 1 in 227) 0.044% per year
- Age 40 . . . . . . 1.47 percent (or 1 in 68) 0.147% per year
- Age 50 . . . . . . 2.38 percent (or 1 in 42) 0.238% per year
- Age 60 . . . . . . 3.56 percent (or 1 in 28) 0.356% per year
- Age 70 . . . . . . 3.82 percent (or 1 in 26) 0.382% per year
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So this means that someone who is 45 has an annual risk of 0.147% and a 5 year risk of ~0.735% (i.e. less than 1% over the entire 5 years). On the other hand, someone who is 65 has an annual risk of 0.356% and a 5 year risk of ~1.78%. So clearly risk goes up as we get older, but it certainly doesn't go up by 1% a year - not even close.
If some has risk factors that double her risk level vs. the average woman, then just double each of the numbers. This means at age 45, annual risk will be 0.294% and 5 year risk will be ~1.47%, and at age 65, annual risk will be 0.712% and 5 year risk will be ~3.56%.
The other way to look at risk is over an entire lifetime. Generally this assumes that we will live to be somewhere between 80 and 90. The average woman in North America has a lifetime risk of 12.4%. This is simply the addition of the risk we face every single year over our lifetime. It works out like this:
- Age 20 to 29 . . . . . . . 0.10 percent
- Age 30 to 39 . . . . . . . 0.44 percent
- Age 40 to 49 . . . . . . . 1.47 percent
- Age 50 to 59 . . . . . . . 2.38 percent
- Age 60 to 69 . . . . . . . 3.56 percent
- Age 70 to 79 . . . . . . . 3.82 percent
- Age 80 to 89 . . . . . . . 0.63 percent
- TOTAL LIFETIME RISK 12.4%
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With every decade that passes, in fact with every year that passes, our lifetime risk goes down. This is simply because we have fewer years left in our lifetime. So a 30 year old with an expected lifespan of 50 to 60 years has almost all of her lifetime risk ahead of her, 12.3%. But a 60 year old can expect only another 20 to 30 years ahead, so her remaining lifetime risk is 8.01%.
This concept is called "leaving risk behind". One way to think of it is that you can't have an accident today because of something you did yesterday. If you were out driving yesterday, you could have had a car accident. But you can't have yesterday's car accident today - if you got home safely, that risk has been left behind. Of course if you decide to go out driving today, you'll still face the risk of having an accident. But just because you didn't have an accident yesterday doesn't mean that yesterday's risk carries over and you have a greater risk today. Today's risk is based only on today's factors. So if it's raining today, the risk might be higher than it was yesterday, but it's still just today's risk based on today's conditions.
So what it comes down to is that our annual and 5 year risk increases as we get older, however our lifetime risk goes down as we age. And I still don't understand how where the "1% increase in risk per year" comes from.
Hope that helps!
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Beesie,
Wow, complex stuff! Thank you for taking the time to lay all the numbers out.
To answer your question, yes, it was my oncologist and my BS who said my risk, with an ADH dx, increases by 1% each year. So I guess what I am having a hard time wrapping my brain around is how to understand that 1% annual increase in view of the concept of risk left behind. One factor goes up; the other goes down. Also, I was told that there is more likelihood of an eventual BC dx the more years I am out from the original ADH dx-- that is, until 15 years have passed, when I think the risk begins to decline.0 -
Ok, I got it. I found an explanation from Dr. Susan Love about what the "1% increase per year" means.
Dr. Susan Love Atypia and Hyperplasia
"...the presence of ADH increases your risk for breast cancer over that of the average woman by about 1 percent per year for the next 10 years."
So it's not that your risk goes up by 1% every year (it's not cumulative), it's that your risk is increased by 1% each year vs. the risk faced by the average woman.
Going back to my numbers in my previous post, the average 45 year old has an annual risk of 0.147% per year. Using Dr. Love's explanation, this means that a 45 year old woman with ADH will have an annual risk of 1.147% - there's the 1% increase.
Getting a bit more detailed on the numbers than I did in my last post, the average 46 year old has a slightly higher risk than a 45 year old. Let's say it's 0.152%. This means that a 46 year old with ADH will have an annual risk of 1.152% - again, there's the 1% increase.
So for the woman with ADH, her risk at 45 is 1.147% and her risk at 46 is 1.152% - both risk numbers reflect the 1% increase vs. the average woman. But clearly it's not an additional 1% risk each year on top of the previous year's risk. The previous year's risk is in fact "left behind".
And yes, your annual risk will be higher 15 years out, but only because you are 15 years older and the average woman of 60 has a higher risk than the average woman of 45. The ADH only adds that same 1% on top of the average 60 year old's annual risk level.
Now that makes sense!
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Aha! I think now, for the first time in nearly 3 years, I actually understand! Thank you so much.
I have one last (I promise) question: now that I get the point about risk going up 1% above the average woman's risk, how does this tally up to a total lifetime risk of 20-25%? For instance, in my case, I received the ADH dx at 53, so I no longer count the risk left behind. I am 56 now. Assuming I live to be 90 (why not?), and I have no family hx (I do not), does that add up to the 20-25%?
Thanks again! You have a rare talent for explaining the nuances of these numbers.0 -
Momoschki, I really don't know the answer to that. Generally the risk level I've seen for ADH is a range of about 16% - 25%. ADH is considered to be a moderate risk condition except for those who have other risk factors, where it can put them over into the high risk category. If you have no other risk factors, and since your ADH was discovered at 53 and not at a younger age, I would guess that your risk might be on the lower end of the scale, but honestly, that's just a guess.
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Beesie, thank you. Being newly diagnosed and in the high risk category with a strong family history, you have provided so much information. Thank you.
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Just the original author of this post dropping in to say hello... I rarely come here anymore, as although I went through some challenging times, more so with my aneurysm than the cancer - I struggle more with the psychological after affects of having gone through breast cancer than the actual treatments themselves. Just trying to put it in the rear view mirror and move on in life, but it's hard. Ann, of "But Doctor I Hate Pink", wrote an excellent article on surviving cancer in her blog.
Anyhow, just reporting that I'm just over a year out of treatment and doing ok. Here's wishing calm minds free of worry.0 -
I was diagnosed with ADH last Tuesday, 9/17. I am 56, no family cancer, exercise routinely, breast fed, healthy. Discovered on routine mammogram, then more mammograms and ultrasound then stereotactic biopsy. You know the drill. To say this has rocked my psyche is an understatement. I go from thinking it's no big deal, to being very worried. Consult with surgeon scheduled for Thursday and am trying to get as educated as possible. Any thoughts on how to deal with the early days of the diagnosis would be appreciated. Happy to have found y'all.
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Hi Mimi, I've had ADH diagnoses twice. The second time was by stereotactic core biopsy, and I was upgraded to DCIS on the excisional biopsy. So, I can only really speak about the first ADH diagnosis. I was definitely concerned at first, but over time, I guess because I had many years of benign biopsies, I got to feeling like it was less of a threat. My only advice to you is to do screening in a high-risk clinic at a cancer hospital if that is realistic and possible. I never did that. It wouldn't have changed much about my situation, although the DCIS might have been picked up a year or two earlier when the amount was smaller. I kind of got that hint from my breast surgeon. The surveillance would have been better. But I have no real regrets, only just making that comment to you.
Of course, best of luck on the excisional biopsy, and hoping they find nothing (as in the ADH was taken out in the core biopsy) or just ADH and nothing else.
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Mimi, this is one of the most comprehensive studies on risk in women with atypical hyperplasia that has been done: http://jco.ascopubs.org/content/25/19/2671.full
The Gail model suggests:
"Therefore, for a 50-year-old white woman with menarche at age 12, first birth at 24, and atypia on breast biopsy, the predicted lifetime risk of breast cancer is 17.5%."
This study says that for women presenting with atypical hyperplasia, family history is not as important as the presention of the benign breast disease, and the number of years that a woman has at risk (e.g., younger women have higher risk because cummulatively they have more years at risk) is a better indicator of personal risk:
"In conclusion, our study provides a comprehensive analysis of breast cancer risk associated with atypical hyperplasia. These findings confirm a four-fold RR of subsequent breast cancer in women with atypical hyperplasia. We estimate that the long-term absolute risk of subsequent breast cancer (in situ or invasive) is higher than previously reported—at least 25% at 25 years, and as high as 50% to 60% in a high-risk subgroup defined by multifocality and calcifications. A positive family history does not confer significantly increased risk in women with atypia. Improved risk prediction and stratification is now possible to guide risk-reduction counseling for women with atypical hyperplasia."
This study says that for women with benign, but atypical, breast disease, the type of presentation (multifocal) is a much more reliable indicator of breast cancer risk than family history.
While this looks scarey ... it is best to put it into context with "average risk" : http://www.cancer.gov/dictionary?cdrid=712883 which is 12-13% up until 90 years of age.
Interpretation of risk, and risk percent, is often mis-interpreted (even in the clinical literature), so it does make it very difficult. Also, not only are analyses sometimes not correctly applied and interpreted, populations (like the large cohorts, e.g., the Nurses Study) were often collected for other reasons (e.g., heart disease), and studies looking at other diseases are "added-on" - so this means there is often a lot of variability in the estimates. This makes generalizations and comparisons to other study populations difficult.
Best wishes to you, Mimi.
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Mimi, I had stated that I had an upgrade to DCIS, which is true. I just wanted to state that it is more likely that you will see upgrades to DCIS from ADH on this website than might occur in the natural environment. I wouldn't have even found this website, but for the DCIS diagnosis. Many women have ADH and it never progresses and won't be posting on the website. Many more likely don't even know they have it.
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BL, the study that you've linked and quoted is very interesting.... I will dig into it more when I have more time. However in glancing it at quickly, I did notice one thing that surprised me, and that was the sample size. The total number of women with ADH evaluated in that study was only 331, and of those, only 46 were found to have ADH at an age younger than 45. So the conclusion about the very high risk among those diagnosed young is based on a very small group. I realize that the results are statistically significant - and I don't think there is any question that being found to have ADH at a younger age does present greater risk than being diagnosed when one is older (others studies have shown this as well) - but with such a small sample size, the magnitude of risk might have changed quite a bit if only a couple of fewer women had been diagnosed. So I would urge caution before anyone freaks out about those high risk figures.
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In addition to Beesie's wise observations of incredibly small sample size, there is another way of looking at breast cancer risk models. The Gail model predicts the chance of breast cancer in a group of women with those specific characteristics. In other words, it does not predict the risk of breast cancer of any one specific woman.
In this opinion article, this paper looks at the application of the modified Gail model, and compares it to the modified Gail model with many other risk factors not included in the modified Gail model such as breast density, etc.
Note the modified Gail model was peer reviewed and compared to populations in the USA. So the modified Gail model was evaluated against probably something close to a good portion of the USA female population.
I'm not that super at statistics, but one way of judging how good a model is for an individual is the concordance value. 'Judging a model for an individual' means answering the question 'What is my risk of breast cancer over my lifetime', as opposed to the modified Gail model that can answer 'How many people in a population of X (say, 100,000) that have risk factors like me will get breast cancer?'
This opinion article said that the modified Gail model, and the modified Gail model that includes other risk factors such as breast density, will quite accurately predict how many women in a population will get breast cancer. However, both models are 'better than a roll of the dice, but not by much' in predicting how well the model works for an individual. (To be specific, the best model they tested, the modified Gail model + other risk factors including breast density correctly predicted about 59% of the population, as opposed to 50% of the population if the model was as good as chance. The best model imaginable would give a value of 0% or 100%.) jnci.oxfordjournals.org/content/98/23/1673.full.pdf
If the modified Gail model works this bad for individuals with 'average' risk factors in the 'general population' , just think how well it works for a much smaller population, such as those with ADH (even if the study had a much larger sample size).
The article says that those who have a strong family history, such as a deleterious BRCA mutation, may be in a different category, and some risk models may work better for them as individuals.
I do not have ADH; I do have DH, ALH and LCIS. I've gotten lifetime risk factor estimates from '30 or 40%' to 'somewhere between 10% and 60%, but probably closer to 10% than 60%. If you want anything more accurate, go to the literature.' I haven't seen any academic papers that say that women with ALH, ADH, DCIS, or LCIS have a risk lower than that of the general population.
So I think that the subject of breast cancer prediction for individuals (even in the general population) is in its infancy. Its probably in the fetal stages for individuals with higher risk conditions.
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Don't have ADH, but found the discussion interesting.
Leaf makes a great point about the models predicting the population values, but not the individual. For example, the Gail model would have predicted that I had about a 1.7% chance of getting cancer when I did. It was useless for me, but if 1.7% of people who answered the questions the same way I did got cancer (lucky me to be in that group!), while 98.3% of them did not - over the aggregate it may still have been right.
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most everything I've read over the past several years says that having ADH without a family history of bc confers only a moderate risk; while having ADH with a family history of bc (in a primary relative such as mother, daughter or sister) bumps it up to the high risk catagory.
anne
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Thank you, awb and ballet12. I am learning that much education is needed around ADH. My primary care physician called me last week after the radiologist told me about the ADH diagnosis. She said things like "we can't breathe easily until the mass is removed" and "you don't have breast cancer YET." Perhaps physicians need some education too.
I will post tomorrow after my consult with the surgeon. Until 8 days ago I'd never heard of ADH. Until 3 weeks ago, I'd never in my wildest dreams thought I'd be seeing a surgeon to have a lump removed. But we must be the primary advocates for our own well being, and I'm happy to have found this forum and will play whatever small part I can in educating others.0
