ADH Club
Comments
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I'll join in here, although my new diagnosis is ALH, not ADH. I've been watching this thread, since there doesn't seem to be an "ALH Club" thread.
Mimi, similar story. Diagnosed with ALH on 9/13. I am 55, no family history of breast cancer, exercise regularly, healthy (but no kids.) Same path as yours, routine mammo, then another mammo, ultrasound, stereotactic biopsy (did not enjoy the latter.) I had never heard of ADH or ALH either. I'm finding it's a tricky diagnosis to explain to friends or family; they seem to want the info to be either black or white, and not some mooshy gray middle ground.
Next for me is an MRI, then an excisional biopsy. I've had ups and downs. Some days I'm good, and then I hit what I call a "fear bubble" that I have to work myself through. I'm one of those folks comforted by lots of info, so this forum (and the web in general) has been a great help. Fortunately my surgeon seems to actually welcome patients who are informed and very proactive. I'm reading all I can find. Beesie and Leaf's good posts on understanding statistics have helped me not be derailed by the many confusing/conflicting statistical tools on the web.
I do focus on what ballet12 said; there are women who present with ADH (and ALH) who don't progress to cancer. Now that I've absorbed most of the initial shock, I try to focus on the fact that at least I'm aware that I need to be monitored. I'm thankful it's an early indication; I know, as early findings go, it could be a lot worse. Of course it's still scary. And I'm no fan of frequent diagnostic tests, so that has me bummed.
I wish I did not have to learn about any of this (it was not in my fall schedule.) But I do feel a bit more in control than I did in mid August, when I got the letter after my second mammo, telling me I needed a surgical consult. (A what???) I can still remember my heart pounding as I stood by the mailbox. I think my sense of being a little more in control is due to the wonderful people who post here.
I am sending good thoughts your way, and I hope your appointment tomorrow goes well.
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Ok, I will weigh in here, as I have been living with the ADH dx a couple of months short of 3 years. It's been challenging, especially for someone like me who does not do well with uncertainty, and this is a very uncertain dx. I still bounce between the " you don't have cancer YET" attitude and other times, when I realize that with the time that has passed, it's now not all I think about every moment of every day.
Still, I am a person who likes facts and information too, and none of my doctors seem to be able to nail down my own personal risk beyond saying that it is somewhere between 20-25%. I would hate to think that I could spend the rest of my life living beneath the specter of these numbers, which would be especially unfortunate if I remain healthy. And yes, other people tend not to understand... They ask me, " you're ok, right?" and while I am indeed, I always feel like I need to qualify, to give a little speech about the odds, etc. ADH is a very grey area.
I guess the fact that I am still around these boards nearly 3 years later speaks to the fact that I can not forget that this dx always lurks and is impossible for me to entirely forget about.0 -
Hello momoschki, I remember some of your past posts, as I've tried to absorb any ADH/ALH info here. I am sorry you have reason to be on these boards, but posts like yours do help newly diagnosed folks like me, scrabbling for info. So, thank you for being here, when you feel the need.
I don't deal well with surprises myself. I'm mostly comfortable with good plans, clearly laid out. So this is a cruddy diagnosis for me, as I have never been very good at "going with the flow." I wonder if I can learn to loosen up (guess I will have no choice?)
Thanks for your statement about how hard it is to nail down a risk factor. I can't find much helpful info on the web. I know that my extremely dense breasts increase my risk, as well as never having given birth, and being on birth control for years. Now add the ALH. I have no idea how these things add up, though. I think I need to accept the fact that my own risk factor will probably always be a guess. Which bugs me, but I'm trying to let go of worrying about it. Currently I have no tough decisions in front of me anyway, I just have to go down the path and see what turns up with the next biopsy.
It's hard to figure out who to bug (burden?) with the accurate picture of my gray area diagnosis. Probably I should just let most folks assume what they want, which is "no cancer, no problem." I understand that cancer is scary, and they want me to be free of the risk. So that's the shorthand they choose. But I think I will selfishly have to insist, initially, that some people I'm close to should work a little to grasp the ongoing complexities of the real situation; otherwise, I just feel like I am being asked to shoulder a pretty impressive new burden...alone.
At least, I know I can vent here a little, and people will get it. That does help!
And thanks, chickenpants, for starting this thread.
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Hi Mimi, the primary care physician does need to be better educated. You are now going for an excisional biopsy of the area with the ADH. The goal of this biopsy is to determine if there is anything else lurking nearby, with the most likely being DCIS. The tissue with the ADH doesn't even need to be removed in it's entirety. The purpose isn't to remove the ADH, the purpose is to find out if anything else is there. If they find something else (which we hope they don't) then you have to go back in and have a lumpectomy and remove what's there. Just try to remember that you have SOME risk of breast cancer, and for all you know, you've got risks of other stuff as well that you don't know about. You just gotta keep on living. I know that when I had an initial ADH/ALH diagnosis 17 years ago, I kind of walked away feeling like it's not a matter of "if", but "when" I get bc. After awhile, I kind of forgot about it, especially when I had years where the mammos were basically fine. I had a few biopsy scares, but they were benign. I just kept saying to myself, if I have a biopsy every few years for the rest of my life, I can live with it. Ironically, I still feel the same way. I actually feel lucky that all I've been diagnosed with is DCIS, especially reading these boards. Anyway, you can't rest easy until you have the excisional biopsy, so best of luck to you!!!
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Had my surgical consult today. Loved the BS. She said: "You should not lose sleep over this - it just means you and I will be hanging out more together." Good thing I liked her.
She explained that I had both ADH and ALH. She said that it was interesting that I had both, but did not think it increased the odds for developing breast cancer. We got the feeling that it's not that common to be diagnosed with both ADH and ALH. Is that consistent with what others have heard? Any knowledge on whether the two together presents more risk?
I was told that in general, I have a moderate risk for developing BC (20% over my lifetime compared to a normal risk is around 10%). If I had family history (mother, sister) with BC the risk would jump to 40%. Interestingly she said even moderate alcohol use (>4 per week) can increase risks to same level as if your mother had BC. Does anyone have any knowledge/ thoughts on the affect of even moderate drinking on BC?
She wants to do an MRI before the surgery and it is scheduled for next Friday. This will allow her to assess if there are any other areas of concerns in either breast of concern. The surgery will take place on 10/16. Fairly routine. She said the surgery will be easier for me than the stereotactic biopsy that I had last week which resulted in heavy bruising on my breast and an infection. In the end she was optimistic, saying that less than 5% of people indicate BC after the excision.
If no BC found, she said ideally I will have an MRI once a year and a mammogram once a year, alternating every 6 months. However, she said that it's up to me and what my insurance company will pay. Minimally, a mammogram annually is required. Mammograms save lives.
Onward to next Friday.....0 -
I had both ADH and ALH, as well as family history (although post-menopausal). Sounds like you will have much better surveillance than I did. If they do see something, they will catch it early. Just be prepared to deal with biopsies, because they will be looking so carefully.
Best of luck for an easy excisional biopsy, and no surprises. We'll be here for you either way.
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Mimi, yes, it is true about the affect of drinking on BC risk. Study after study seems to indicate that even one drink a day increases risk. With a dx of ADH, my oncologist was adamant: never ant more than half a drink per day. Thus has been difficult, as I really like a glass (or2!) of wine with dinner. Alas...
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Yes, study after study shows that alcohol is a weak risk factor for breast cancer. Emphasis on weak.
Here's one of the most recent studies, done on women under the age of 50 in the UK:
Alcohol is an established risk factor for breast cancer. Cancer Research UK reports that the combined results of two large systematic reviews of the published evidence, in addition to findings from the UK Million Women Study, suggest that each additional unit of alcohol per day can increase a woman’s risk of the disease by between 7% and 12%. The research suggests that by the age of 80, roughly the following number of women will have developed breast cancer:
- 9 out of 100 if they don’t drink at all
- 10 out of 100 if they have two drinks a day
- 13 out of 100 if they have six drinks a day
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This is saying that if a woman of average risk has 2 drinks a day, over the course of her entire life to the age of 80, she will increase her breast cancer risk from 9% to 10%. That's an 11% relative increase in risk, but in absolute terms it's only a 1 percentage point increase. I appreciate that the medical community is concerned about alcohol consumption because for the population as a whole, 1% of women is a lot of women. So this can represent many more cases of breast cancer. But for an individual, a 10% risk up to age 80 vs. a 9% risk up to age 80 isn't much of an increase. Even for those of us who are higher risk (myself, having had ADH and having had breast cancer, and everyone here with ADH), the absolute risk increase conferred by 2 drinks a day is going to be pretty small. This study, and particularly the way that it's been presented, is very helpful in putting the risk in perspective. It's confirmation that I'm not going to worry about my glass of wine (or two) with dinner each night. However from these numbers, I do think that women who have 6 drinks a day probably should consider cutting back.
Now, here's what Dr. Susan Love has written about the risk from alcohol consumption: Does alcohol increase breast cancer risk? Her conclusions are similar, and she brings up the point that "one to two drinks a day have been shown to decrease heart disease". Heart disease kills more women than all cancers combined, and that's why study after study has shown that alcohol consumption does not impact overall mortality rates. Dr. Love also points out that folic acid seems to mitigate breast cancer risk among those who consume alcohol. I have seen several studies that suggest this - one study showed that those who consume alcohol and take folic acid actually have lower breast cancer rates than those who don't drink any alcohol - and therefore I take both a multi-vitamin and a folic acid supplement daily (totalling 800 micrograms of folate daily).
By the way, for those who don't know, Dr. Love is in remission from leukemia. Here's something that she said earlier in the year:
"Love, who wrote a book called Live a Little!, said illness has also made her grateful that she didn’t put off her “bucket list” and that she has travelled the world and focused on satisfying work.
“It just reminds you that none of us are going to get out of here alive, and we don’t know how much time we have. I say this to my daughter, whether it’s changing the world or having a good time, that we should do what we want to do. I drink the expensive wine now.”" Having cancer inspired MD to seek cause
So as a leading expert on breast cancer, and as a cancer survivor, it's clear that Dr. Love still chooses to enjoy a glass or two of wine.
My conclusion from all that: If you want to cut out alcohol consumption, great. But if wine is something you enjoy, then enjoy it and don't feel guilty about it.
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As always, Beesie, thank you for your incredibly lucid explanation of the statistics. Had I read this last night, I would have finished my glass of Shiraz! Also, note to myself to discuss folic acid at next oncologist's appt.
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Thank you, Beesie,
"Cheers" or "L'chaim"! If one is so stressed out by trying to avoid all risk factors, then that's stressful in itself. The alcohol risk is minimal, in moderation. Even soy (as "real food" not in supplements) in moderation is probably OK. Exercise (good), how much? unknown, and so difficult to measure. BPA's (in plastics and can liners) are bad, but even cash receipts have BPA's. It's kind of hard to avoid handling paper cash receipts. There is probably one risk factor which is so great that it should be avoided at all costs and that is hormone replacement therapy, which is the one thing that Dr. Love emphasized years ago, before research strongly supported the association with breast cancer. She was my MD for a couple of years way back then.
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I'm so glad to see the alcohol question discussed. I've been trying to research this too, because heart disease is big in my family (father had first heart attack and quadruple bypass at age 42, mother two heart attacks.) It's very helpful to read detailed information on this point, as I have a number of things to take into account. Looks like a balancing act for me.
I do enjoy a glass of wine most evenings, and have not known what to do since my diagnosis. I'll follow up on the folic acid information; thanks Beesie.
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Thanks Beesie for posting all that useful info on alcohol risk! I too was worried about that because I like my beer and wine occasionally. Ballet12, when you say a big risk factor is hormone replacement therapy, what exactly do you mean by that? I still take birth control pills to control my endometriosis but my breast surgeon doesn't seem to concerned about that.
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The following video is referring to a study on alcohol consumption and breast cancer survival that came out about 3 or 4 years ago. I found it to be really helpful in explaining the balancing act between breast cancer and heart disease, when it comes to alcohol consumption. Although the subject of the talk is specific to survival rates among those already diagnosed, there is reference to breast cancer rates and survival among women do who not have breast cancer: How life style factors effect survival of breast cancer patients
And here are some of the folate studies:
Alcohol and dietary folate intake and the risk of breast cancer: a case-control study in Japan. "Higher folate intake decreases the risk of breast cancer among Japanese, whereas alcohol intake increases the risk. These two factors interact with each other, and the excess risk of breast cancer with alcohol consumption might be attenuated by increasing the intake of folate. In addition, the effects of folate/alcohol may vary according to the tumor subtype."
Does dietary folate intake modify effect of alcohol consumption on breast cancer risk? Prospective cohort study "Conclusions An adequate dietary intake of folate might protect against the increased risk of breast cancer associated with alcohol consumption."
Folate, Vitamin B6 Fight Breast Cancer - Nutrients Counter Negative Effects of Alcohol on Breast Cancer Risk "They found women with the highest folate levels were 27% less likely to have breast cancer than those with the lowest folate levels. And the reduction in breast cancer risk was much greater among women who drank about one glass of wine or a cocktail per day. These moderate drinkers with high folate levels were 89% less likely to develop breast cancer than those who drank less than one drink per day."
Folate intake and breast cancer mortality in a cohort of Swedish women This study doesn't talk about alcohol consumption but their findings "suggest that folate intake before breast cancer diagnosis may improve breast cancer and overall survival."
There are also studies that show no benefit from extra folate intake, but the majority of studies seems to suggest this positive benefit (i.e. an inverse relationship with breast cancer risk, particularly among those who consume alcohol).
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In the article (2006) I mentioned before they can't really see if individuals are at higher risk except perhaps deleterious BRCA mutations (at least for screening purposes).
Why is it so difficult to develop worthwhile breast cancer pre-diction models for individuals? First, the risk factors used in cur-rent models are widely prevalent throughout the population andare neither highly sensitive nor highly specific. In addition, a riskfactor must be very strongly associated with a disease (with arelative risk of about 200) to be worthwhile for screening( 18 ),and the same appears to be the case for accurate prediction usingcombinations of risk factors. Most risk factors for breast cancerare relatively weak. Even “ strong ” risk factors, such as older age,mammographically dense breasts, and radiation exposure, are as-sociated with relative risks of less than 10. [Deleterious BRCA1mutations in young women may be an exception(emphasis mine)In this 1998 JAMA study, The multivariate-adjusted relative risk for total alcohol intakes of 30 to less than 60 g/d (about 2-5 drinks) vs nondrinkers was 1.41 (95% CI, 1.18-1.69). http://jama.jamanetwork.com/article.aspx?articleid=187252 (emphasis mine)0 -
Hi mvspaulding, hormone replacement therapy refers spefically to taking hormones post-menopausally to treat menopausal symptoms.
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Hello All - I was just recently diagnosed with ADH. My story started about two years ago at age 38 when I felt a lump in my right breast. Had my first mammogram, ultrasound and core needle biopsy all in the same day. Results came back as a 1cm fibroadenoma, completely benign. Since then I have had 6mo screenings and a second CNB this July. Results still came back as a fibroadenoma but now it was 3cm. BS wanted to take it out due to it's size and my age (40 now ). Just had the excisional biopsy Sept. 20th and results came back fibroadenoma with ADH. I am so happy that my results are benign, but still don't feel completely relieved because now I am back on the 6mo screening routine. I try vary hard not to worry or let it consume me, but I know I will dread every single 6mo appt. On top of that, I feel guilty for worrying because I realize there are women being diagnosed with BC every day, and here I am with benign results feeling like a drama-queen. I want so badly to be optimistic and grateful, but I cannot push this worrying out of my mind! So relieved as so frustrated at the same time!!0 -
For those diagnosed with ADH.......
Anyone been diagnosed with ADH in both breasts? Recap: I had a lumpectomy with excision in July. My initial mammo and diagnostic U/S in April were negative (I have pretty dense breasts)...In May I had brackish spontaneous nipple discharge from my left breast. MRI showed some bloody debris, galactogram negative. After waiting for an appt, they did another galactogram two weeks later (July) and the wire was now blocked. An excision and lumpectomy resulted in finding ADH. The surgeon removed a 6.5 x5.5 area. My right nipple area has been bothering me now with the same sharp pain when touched/bumped lightly. (Can't cross my arms, etc) I have some brown expressed discharge. My recheck mammo is in December....just wondering if I should call the surgeon earlier?0 -
hi sportsmom,
I can totally identify with what you are feeling, although I am nearly 3 years out of the ADH gate now. The good news is: you don't have cancer. This is certainly very good news! The bad news is, now designated high risk, you can look forward to the 6 month rotation for the foreseeable future. It's a difficult line to straddle, since, as you say, there are many women who have to deal with diagnoses that are far more serious and have real day to day struggles. On the other hand, I never feel confident that I am completely ok. This is hard for friends and family to grasp.
Have you met with an oncologist yet who may be able to give you a better individual picture of your own personal risks? Know that the majority of women with ADH never develop BC, still, I know well that feeling of the axe hanging over your head. So, while I have no particular wisdom to offer you, just wanted to say that you are not alone, for what that's worth.0 -
Hi Momoschki,
Thanks for your kind words and understanding. You are so right that friends and family, especially my husband, don't grasp the ADH diagnosis. He heard the word "benign" and that's all that matters. I am going to try very hard to hop off the "worry train" and onto the "Happy Express" with my hubbie. Besides, I think if I tell him about one more thing I found with Google, he'll sell our computer! lol:) I haven't met with an oncologist, nor has that step even been recommended to me by my BS. I have no family history of BC that I know of, I don't smoke, and I am relatively fit and healthy. Only thing I am aware of is I have low vitamin D so I'm taking a supplement daily. I guess I'll just take it 6months at a time, and knowing that I'm no alone, is worth a lot, so thank you!0 -
HI Sportsmom, I had an ADH diagnosis 18 years ago. It did cause me worry, initially, but gradually that wore off, even with several biopsies. I didn't even have the 6 month screening that is now offered. I would have actually found it comforting that I was been carefully watched. I did have some 6 month interval screenings to follow some areas after biopsies, but other than that not really. No MRI's, at all, until my more recent diagnosis, and I even stopped doing ultrasounds. So, just keep up the screening, preferably in a high-risk program were they are very skilled at reading the mammos, sonos, and MRI's. Don't be worried about seeing my signature. I do have a family hx of bc, so it wasn't surprising that something not so serious eventually turned up. I feel very fortunate.0 -
sportsmom-- you can feel free to PM me if you have any specific questions. Unfortunately, I've accumulated quite a bit of knowledge about ADH (I am the compulsive researcher type-- go to doctors' appts with folders full of reprinted clinical studies...)0 -
ballet12-thanks for sharing your thoughts. I really like your point of view on the six-month screenings, and describing them as comforting. I guess I never really looked at it that way, but it did help me feel better so thank you! It reminded me of an article I read where a mother was sharing her way of looking at things positively. Every time she made dinner and did the dishes she told herself to be thankful that she had food to put on the table and a family to feed. Every time she spent the day doing laundry she reminded herself how lucky she was to have a family to clothe. I try to remember these things when I don't want to cook or clean (everyday...lol) and most of the time it does help. Other times, let's face it, it stinks! So I'm going to approach these 6mo follow-ups in the same way. 60% comforting/40%stinky...what can I say I'm a work-in-progress. Hope you are doing well and sending you warmest wishes for happiness and good health.0 -
momoschki- you are so thoughtful and kind, thank you. If I have any questions, I know who to contact:) How are you doing? Are you due for one of your follow-ups anytime soon? I just scheduled mine for early March. Hope you're doing well.0 -
I was on the six month follow up rotation for microcalcifications when they finally "changed" this year, leading to the stereotactic followed by excisional biopsy straight to "ADH approaching DCIS" land. I hate my diagnosis. It's not pure ADH. It's not quite DCIS. It's some wasteland in between, leaving me with plenty of questions and not so many answers. But it's not cancer, so I'm thankful every day.
Today is my first six month mammo post biopsy and I feel a bit ambivalent. I fear the exemestane I'm taking is starting to leave me somewhat depressed.0 -
Jld03- Good luck today, I'll be thinking of you and wishing for good results! Please let us all know how it goes today. I don't think any of us want to be in this boat, other than to make sure we all stay afloat. I know, I know that was pretty corny, but it did rhyme and maybe put a smile on you face
Keep us posted!!0 -
Yes, I have a regularly scheduled mammo as part of my 6 month rotation coming up this Monday. I really wish that I could look at this from the perspective of being closely watched = comforting, but sadly, I get off the charts anxious before these visits. Wish I could say it has gotten better after nearly 3 years, but I seem to have the unfortunate tendency to go immediately to the "dark place". My whole family is like this, so no surprise there. Luckily the appt is at 8 am, so at least I will get it over with early. I get immediate feedback and then a mtg with my BS.
Will report back once it's done... fingers crossed and taking deep breaths...0 -
Yes, I have a regularly scheduled mammo as part of my 6 month rotation coming up this Monday. I really wish that I could look at this from the perspective of being closely watched = comforting, but sadly, I get off the charts anxious before these visits. Wish I could say it has gotten better after nearly 3 years, but I seem to have the unfortunate tendency to go immediately to the "dark place". My whole family is like this, so no surprise there. Luckily the appt is at 8 am, so at least I will get it over with early. I get immediate feedback and then a mtg with my BS.
Will report back once it's done... fingers crossed and taking deep breaths...0 -
jld03,
Just wanted to let you know that I had my needle biopsy slides analyzed by THREE different hospitals, yielding 3 different dx's. talk about confusing! First was DCIS, second was the borderline ADH-DCIS, and finally the third was pure ADH. Both my BS and onc insisted that these distinctions were not important in terms of either my tx or prognosis, so I try not to obsess about it too much. From what I understand, the distinction between ADH and DCIS, on a histological level, can be quite fuzzy and subjective.
Curious, though: how have you been tolerating the Exemestane? Side effects? (Other than possible depression.)
Hope your mammo went well and you get very boring results!0 -
Thanks for the smile, sports mom. I kinda liked your metaphor
After two years of having extra films and the radiologist looking at them immediately, my first post biopsy mammo was more than a bit anti-climactic. The tech simply took the pictures, then sent me on my way, with "your doctor will get the report in a few days". I see my BS on the 21st, but I assume if there's anything important in there, they'll call me in sooner for magnifications.
Momoschki, thanks for sharing your experience with the second and third opinions all being different. It is frustrating and confusing. Are you on exemestane? Or one of the others? What are your side effects?
When I first started with it, I had bizarre nightmares, but these lasted only a couple weeks, along with strong body aches, especially in my legs, knees, and feet, headaches, and the strangest feeling of general weakness all over. The achiness is not as severe now, but it is constant, worse after I've been sitting for any length of time, even a few minutes, and still that feeling of general weakness--I can't really explain it. My hands go numb frequently and I am always tired, always, and I've gained about twenty pounds. My MO said weight gain wasn't really a common side effect, but that I could be moving less because of all the pain, and that is definitely true. My DH never could keep up with me when we went walking together. Now I'm limping along like I 'm ninety. I don't see my MO for another four months. I'm not sure what I'm going to do, but I'm leaning toward not taking it. I plan to discuss it with my BS on the 21st and see what he thinks.
God luck with your mammo on Monday. I wish you the same boring results as you wished me, lol.0 -
momoschki , good luck on Monday. Keep taking deep breaths and I'll cross my fingers too. Hoping for boring and benign results for both you and jld03!!0
