https://community.breastcancer.org/forum/83/topics/723479
Topic: usual ductal hyperplasia?
Forum: Not Diagnosed but Worried —
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Posted on: Oct 27, 2008 07:03PM
chezshoes wrote:
Hello again! I had my biopsy last week, and the results were benign. However, I'm a little concerned about the details of my pathology report, and was wondering if anybody could offer input.
Here's the diagnosis: Benign breast tissue with fibrocystic changes comprised of large caliber cysts lined by metaplastic apocrine cells, in addition to foci of usual ductal hyperplasia. No in situ or invasive malignancy is identified.
All good news, except - according to Mayo Clinic, "The term "usual ductal hyperplasia" describes breast tissue with an increased number of benign cells within a milk-collecting duct. This tissue type doubles a woman's risk of eventually developing invasive breast cancer."
As you might imagine, that last sentence worries me. I'm also a little concerned that when my gyno called to give me the path report, he didn't mention anything about that.
Anyone else ever experience a similar diagnosis? I'm tempted to pay out of pocket for a second opinion, but since I'm not exactly wealthy, it would be a huge hardship.
Thanks, as always, for your help!
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Oct 28, 2008 07:45AM Beesie wrote:
chezshoes,
Ductal hyperplasia does double your breast cancer risk as the Mayo Clinic site says, however ductal hyperplasia is not considered to be a pre-cancerous or "high risk" condition. It's all related to how risk is calculated.
You are probably familiar with the commonly mentioned fact that 1 in 8 women will get breast cancer during their lifetime. Another way of saying the same thing is to say that the lifetime risk of being diagnosed with breast cancer for the average woman is 12.7%. The 'average' woman in this statement is in fact a blend of all women - those who have no risk factors, those who have some risk factors and those who are very high risk. However, when individual risk is assessed - your own personal risk level - it is built up from base risk, not average risk. Base risk is the risk level for all women before any personal risk factors are considered. The numbers I've seen for base risk range from 4% to 6%. So that's your starting point. That's the starting point for all of us. In your case, it's now known that you have ductal hyperplasia. This doubles your risk. So this means that your lifetime breast cancer risk may now be in the range of 8% to 12%. If this is your only personal risk factor, your risk level is still below the average. If you have other personal risk factors, adding ductal hyperplasia may take you up above the average. But ductal hyperplasia alone does not put you into a 'high risk' category.
I hope my explanation is clear and I hope it eases your mind. One other point. The risk numbers that I gave you are lifetime risk numbers - total breast cancer risk up to the age of 90. Risk varies by age - it's lower when you are younger and higher when you are older. The average annual risk level of someone in their 30s is only 1 in 233, or 0.43% for the entire decade of their 30s, or 0.043% per year. The average annual risk level of someone in their 60s is 1 in 27, or 3.65% for the entire decade of their 60s, or 0.365% per year (i.e. less than a 1/2 percent per year). These are the average numbers again, not base risk, but if your ductal hyperplasia has put your risk level at around the average, these would be approximately your annual risk levels. http://www.cancer.gov/cancertopics/factsheet/Detection/probability-breast-cancer
Hope that helps!
Oct 28, 2008 09:51AM chezshoes wrote:
Beesie, thank you so much. You worked out exactly what I was trying to figure out on my own - how much this raises my risk factor, which is already on the higher side (early menstruation, choosing to be childless, family history). I guess it's all about close monitoring and not skipping those mammograms from here on!
Oct 28, 2008 01:26PM leaf wrote:
I thought the risk of atypical hyperplasia was quite a bit more than plain hyperplasia.
Breast cancer is characterized by the overgrowth of abnormal cells, a multistep process called carcinogenesis. The process begins when normal cell development and growth become disrupted, causing an overproduction of normal-looking cells (hyperplasia). Atypical hyperplasia occurs when the excess cells stack upon one another and begin to take on an abnormal appearance. The abnormal cells can continue to change in appearance and multiply, evolving into noninvasive (in situ) cancer, in which cancer cells remain confined to the area where they start growing. Left untreated, the cancer cells may eventually become invasive cancer, invading surrounding tissue, blood vessels or lymph channels. http://www.mayoclinic.com/health/atypical-hyperplasia/DS01018/DSECTION=causes
Also you may want to see http://www.pathologyoutlines.com/breast.html#epithelialductalhyperplasia
Also, note that if you have multiple risk factors, that does NOT necessarily means you can add the various risks together to get your risk. If you have a risk A of 5% and a risk B of 8%, your total risk may be 13%, but it may be 5% or 20%. You have to compare your list of risk factors to the populations that have your same risk factors.
Oct 28, 2008 01:35PM chezshoes wrote:
That's part of my confusion - I had heard of atypical hyperplasia as a risk, but was surprised to find that anything with "usual" in its name still added to risk. Thank you for the links and for the clarification about risk factors!
Oct 28, 2008 01:39PM PSK07 wrote:
Thanks, leaf. I'm sitting here in my low-BP haze wondering the difference between "usual" ductal hyperplasia and "atypical". Like, if atypical is atypical, then usual has to be ok?
I'm waiting for my path from my surgery this past Friday. Hoping there wasn't anything beyond the LCIS and ALH.
Oct 28, 2008 01:41PM leaf wrote:
It sure makes it confusing when they have multiple names for one lesion.
ALso, note that 'fibrocystic disease' of the breast is extremely common. Its so common, that many people consider it a 'wastebasket diagnosis' - this means that they call many things that are benign a 'fibrocystic' change.www.mayoclinic.com/health/fibr...
Oct 28, 2008 04:47PM Beesie wrote:
Atypical ductal hyperplasia (ADH) is a further progression from ductal hyperplasia. ADH is a high risk condition. Whereas usual ductal hyperplasia increases risk by about double, atypical ductal hyperplasia increases risk by 4 - 5 times. So this means that for someone with no other significant risk factors, a diagnosis of ADH would put their lifetime BC risk level in the range of about 20% - 25%. That's high risk, but it still means that 75% - 80% of women who have ADH (and no other significant risk factors) won't ever get breast cancer. I didn't mention ADH or the associated risk in my original post because chezshoes' pathology report was very clear in saying that she had "usual ductal hyperplasia. chezshoes, don't start worrying now that your ductal hyperplasia will progress to become ADH. 
The following website from ACS includes a good explanation of hyperplasia and the risk levels associated with the various types of hyperplasia.
Based on how the cells look under the microscope, hyperplasia may be grouped as:
- mild hyperplasia
- hyperplasia of the usual type (without atypia) -- also known as usual hyperplasia
- atypical hyperplasia -- either atypical ductal hyperplasia (ADH) or atypical lobular hyperplasia (ALH)
A woman with mild hyperplasia is not at increased risk for breast cancer. A woman with usual hyperplasia has a slightly higher chance of developing breast cancer. The risk is 1½ to 2 times that of a woman with no breast abnormalities. The risk for a woman with atypical hyperplasia is 4 to 5 times higher than that of a woman with no breast abnormalities. http://www.cancer.org/docroot/CRI/content/CRI_2_6X_Non_Cancerous_Breast_Conditions_59.asp
And in the picture below you can see how breast cells change as they go from normal to ductal hyperplasia (minor increased risk) to ADH (pre-cancerous high risk) to DCIS (Stage 0 breast cancer) to DCIS with a microinvasion (early Stage I breast cancer) to IDC (invasive breast cancer, Stages I - IV).
Oct 28, 2008 05:42PM PSK07 wrote:
Thanks, Beesie. That makes much more sense to me. The pictures, as usual, tell the tale.Nov 1, 2008 08:15AM - edited Nov 1, 2008 08:15AM by BessB
Beesie,
The picture is a great example. I was diagnosed with ADH after years of abnormal mammograms. Since I had previous blood clots I could not take Tamoxifan. The docs felt that I was "progressing" so when I inquired about PBM there were no questions asked. In January 08 I had a bi-lateral w/DIEP reconstruction and I have never looked back. Your picture shows how ductal hyperplasia can progress. For some it will never progress - but for me it did. I kept getting too many clustered microcalcifications and I did not want to just sit and wait any longer. I was comfortable with the fact that I had time to make the decision. Good luck to you PS:) - Bessie
Nov 1, 2008 02:47PM Beesie wrote:
Bess, I'm glad that you are comfortable with your decision but I think a very important point for everyone else reading this to understand is that for most women, ADH will not progress. Usual ductal hyperplasia, which is the condition that chezshoes asked about, is not considered a 'high risk' condition and women who have this condition generally are at no greater breast cancer risk than the average population. Generally no action is required for those diagnosed with usual ductal hyperplasia. As for ADH, although it is considered to be a 'high risk' condition, the majority of women who have ADH will never be diagnosed with breast cancer. Even Tamoxifen is not usually recommended for ADH women, unless they have other risk factors as well. So while your decision was right for you, I certainly wouldn't want any other woman out there who is newly diagnosed with either ductal hyperplasia or ADH to be thinking that she should be considering having prophylactic bilateral mastectomies. Unless there are specific reasons why their doctor believes that they are at higher risk, the only action that's necessary for most women with ADH is that they be more vigilant in their screening, possibly by having more frequent screening or by adding extra screening tools (MRIs, for example) into the mix.
