ADH Club
Comments
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I was dx'ed with ADH 3 years ago and still struggle with the whole chemoprevention issue. I chose to turn down tamoxifen & Evista and go the alternative route, although there are still times I second guess myself.
Ndahmer, when you meet with your oncologist tomorrow, I would ask him/her to estimate your own personal risk so that you are then in a better position to evaluate the risk/benefit ratio of taking these drugs.
(And, btw, your patient who says that Evista caused her to have osteoporosis must be mistaken, since Evista is a medication that is actually used to treat it- it improves bone density.)
Let us know how your appt goes tomorrow.
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this is such a difficult decision as whether to take a preventive drug with the ADH diagnosis...Evista is the name brand of the drug I was recommended. I think the depression side effect is a big worry along with the other physical ailments. It feels like I am going to move from a state of feeling good physically and mentally to a state of multiple physical issues. Although there is always the fear of cancer and will there be regrets in the future. I hope your surgeon can shed some light on this issue for you.
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Yes, absolutely a very difficult decision: on the one hand, not wanting to overlook something that could really be helpful; on the other, not wanting to risk serious side effects and overtreat a condition that never progresses to BC in 75-80% of cases. It's all very stressful for sure.
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I have had blood clots so cannot take the tamoxifen or the other one. Now for some reason my liver enzymes are elevated...waiting to hear why that is. Weird.
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Last year, after my biopsy showed ADH, I struggled with the decision on whether or not to take a medication to reduce my risk, as I was really feeling pretty good at that time. I went through all the fear of if I do...and the fear of if I don't. I decided I would give it a try and see what happens. A lot of women suffer side effects, but a lot do not, as well, and I was hoping to be one of the "no side effects" gals.
No such luck. I went on exemestane and lasted six months. I had aches and pains all through my joints, and a good bout of depression. I think I would have continued, but the holidays rolled around and the thought of everything I usually embrace with great joy (coking, baking, entertaining) left me wanting to weep. So I stopped. My oncologist said I could try another, and we briefly discussed tamoxifen, but eventually I decided against it, opting instead for surveillance. Now, i'm three weeks out from my next 6 month mammogram and i'm praying everything remains status quo.
But I don't regret trying the medication. I just couldn't justify spending five years feeling so badly when I don't actually have cancer, and might never have it.
These are trying times, emotionally and physically, and my prayers are with all of you strugging with your decisions, whether they be for medication, or pbmx.
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jerupe----I was diagnosed 10 years ago with LCIS (a step further along the bc spectrum with double the risk of ADH) and my risk is further elevated by my mom's ILC. I have been doing high risk surveillance of alternating mammos and MRIs every 6 months with breast exams on the opposite 6 months, I took tamoxifen for 5 years and now have been taking evista for over 4 years. I tolerate both meds pretty well with minimal SEs. Overall, even less SEs with the evista. I rather take the very low risk (<1%) of serious SEs with the meds, than a very high risk of invasive bc. Good luck with whatever route you choose to take.
anne
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Hi Ladies,
Hope everyone is doing well. I have my 6mo. follow-up after surgery this Monday. Not quite sure how I'm feeling. Kinda swaying between being a cautious optimist and a hopeful pessimist. Yep, that about sums it up! I'm glad I have a busy weekend ahead of me. Monday will be here in no time. I hope they let me get dressed right after the mammo and u/s. Anytime they stick me back in the waiting area with my robe on, it always means they want to do another biopsy. Darn stinkin' robes.
Enjoy your weekend everyone!
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Hi, diagnosed with adh, recent visit with oncologist for first time and she did recommend the tamoxifen, but agreed with breast surgeon in stating that follow up were only to be yearly mammograms. After all my research I do not feel comfortable with this plan. It's usually recommended that follow up shoul also consist of something at the 6 month mark as well, usually being an MRI. I also have dense breasts which is another factor. Anyone else struggling with this?
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Only annual mammograms for ADH doesn't seem to be the standard follow-up. I have yearly mammograms, and then 6 months later I alternate between an US and an MRI each year. While on the one hand, I guess I would be relieved to forgo the stress of the extra testing, in the end I would not feel comfortable with the protocol recommended to you. At least there is some small comfort in being watched closely. Have you asked your doctors their rationale for only the yearly mammogram?
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I have a call in to my oncologist and waiting for response. I talked to the nurse and asked her to relay my concerns about taking evista, also asked for further clarification on evaluating my pathology report and family history questionnaire to determine my risk. I also inquired about a 6 month surveillance appointment rather than wait for the one year annual mammagram. All these questions I wished I would have asked the doctor at the initial appointment. A big question I have is that currently I struggle with low estrogen just being 70 and how effective would a SERM drug be percentage wize in reducing cancer risk with that lowered estrogen component in the first place. I keep clinging to that 80% chance of no cancer and wondering if drug therapy is worth the side effect risks.
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I also was given that monitoring plan with the one year mammagram. That did not appear adequate follow up. I have decided on no drug therapy so asked doctor if 6 month mammograms would be recommended to more closely check on ADH. He said insurance would not pay and did not even mention MRI but did say that we could have 6 month appointment to check on things and consult. I think I need to just sit back and process this whole ADH journey after going through all the stresses of deciding on drug therapy or not.
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Jerupe, I noticed that your diagnosis line indicates Stage 0 so I looked back at your posts to see if you have a Stage 0 DCIS diagnosis in addition to the ADH - because that could make a difference in what you decide to do.
In your earlier posts, you indicate that you were diagnosed with DCIS, which is Stage 0 breast cancer. But in your later posts, you indicate that you have only ADH, which is a high risk condition but is not breast cancer.
Was the initial information you received about having DCIS wrong, or do you in fact have a combination of Stage 0 DCIS and high risk ADH?
What I'm interpreting from your posts is that you have just ADH and you've had an excisional biopsy which has removed the entire suspicious area. Do you know how large the area of ADH was? If it was just a small area, and given your age, your risk might be considerably lower than the average 25% breast cancer risk for someone who is found to have ADH. This is because, as a general rule, abnormal cells in the breast tend to progress slowly - it can take years for ADH to develop into DCIS (and that's only in the 25% of cases where that development ever does take place) and then it can take years for DCIS to progress to become invasive cancer (in the case of low grade DCIS, it's believed that at least 50% never will progress beyond DCIS). Of course that's just the 'general rule'. And this is where your situation comes in. In younger women, the progression may be quite a bit quicker, whereas for someone who is well into menopause, it's likely that the cell changes (if they were even to happen) would happen at a much slower pace.
My mother was diagnosed with a small amount of invasive cancer when she was 80. She had a lumpectomy and then a re-excision to get wider margins, and nothing more. That was 9 years ago and she's had annual mammos since then and she's been fine ever since. The judgement of her doctors was that so long as the cancer was removed from her breast with good surgical margins, if anything else were to develop (a recurrence or a new cancer), whatever developed would most likely never have a chance to become life threatening within my mother's remaining natural life. Relating her situation to yours, I can't help but wonder if my mother had been diagnosed 10 years earlier with ADH or even DCIS, and if she'd had an excisional biopsy or lumpectomy then, would that have stopped the development of the abnormal cells? Would she never have developed the invasive cancer? I suspect so. So I can't help but wonder if that's the situation that you are in now. By having had the excisional biopsy to remove all the abnormal ADH cells, rather than increase your risk - as ADH normally does in younger women - perhaps you've reduced your risk and you've been able to avoid a future diagnosis of DCIS or invasive cancer.
I don't know if my assessment makes any sense, but I wanted to put it out there, as another way to think of your situation. It's known that anywhere from 5% to 15% of women develop DCIS during their lifetimes and never know about it. I would suspect that probably the same percent develop ADH and never know about it. You're ADH was discovered. But does that mean that it's going to harm you or that anything needs to be done about it, other than being watchful? Maybe that's something to talk to your oncologist about - what really is your risk?
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Bessie,
Just a question: can typical ductal hyperplasia (not atypical) evolve into atypical ductal hyperplasia?
THanks for any information you can provide me with.
Alicki
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Yes. But cells with typical ductal hyperplasia are very close to normal cells, and most never evolve any further. I haven't read anywhere what percent of cases of typical (or usual) ductal hyperplasia go on to become ADH, but I do know that typical ductal hyperplasia generally is thought to increase breast cancer risk either not at all, or at most up to 1 1/2 to 2 times the risk (it depends on the features of the hyperplasia).
At the high end, that increase in risk may sound like a lot, but it's not, because this increase in risk is measured against 'base risk', the risk level we all face as women before any other risk factors are considered. My understanding is that base risk falls in the range of 4% to at most 6% (or maybe it's 3% to 5%; I can't recall). So in the worst case scenerio, if your base risk is 6%, having typical ductal hyperplasia could possibly increase your risk to 12% (2 times the risk). That's actually still slightly lower than "average risk" which is what we tend to think about when we talk about our risk level to develop breast cancer. When you look at all women in North America, of all backgrounds and all risk levels, 12.4% will develop breast cancer over the course of their lifetime. So having typical ductal hyperplasia is most certainly not a high risk factor, since on it's own (without consideration of any other risk factors someone might have) it increases breast cancer risk to less than average risk.
Here's another way to look at it. We know that approx. 25% of ADH will develop to become breast cancer. Suppose that 25% of cases of typical ductal hyperplasia develop to become ADH (I pulled that out of the air, but it seems reasonable). This puts the breast cancer risk from typical ductal hyperplasia at 6.25% (25% becomes ADH, and then 25% of those ADH cases continue to evolve to become cancer). Here again, if you start with a base risk of 4% to 6%, and you add this extra risk from the typical ductal hyperplasia on top, it puts your risk in the range of 10.25% to 12.25%. So in the worst case scenerario, the risk level is at most just below average risk.
This graphic from breastcancer.org shows how many development steps ductal hyperplasia is away from being invasive breast cancer:
http://www.breastcancer.org/pictures/types/dcis/dcis_range
Hopefully this eases your mind about having ductal hyperplasia.
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Bessie - That is a really great diagram. Now I understand why ALH and DCIS calls are more difficult than the IDC calls. Thanks for that!
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Helo,
THanks so much. You are a wealth of knowledge. I have other B9 typical features but at least this one is sorted!
The only thing that scares me with BC is not getting it diagnosed in time. I am carefully monitored because I have a collection of B9 conditions without atypia but needing to be looked at.
THanks for the drawing too
From the other side of the pond,
Alicki0 -
Beesie...again, thank you for this wonderful explanation...your clear, insightful explanations are so comforting. Initially I was so overwhelmed by all the new terminology that DCIS and ADH were so confusing to me. With time and deeper understanding I have a clear diagnosis of ADH. The area removed was small and being my age, 70, the doctor felt that my risk factor 12% would not be increased greatly by my not taking the drug therapy. He stated the % number with hesitation as he does not appear to communicate in those terms. The thoughts that the possibility of cancer progression would be a slow process and if it should occur that it would be a lower grade tumor were encouraging words stated by doctor.
Thank you for being the knowledgeable cancer words of wisdom out in the netherland. Also, glad your mother is doing well in her journey and may she have good health.
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Hi momoschki - thank you for responding to my post from 2/25/14. I met with my surgeon and had encouraging news - she told me she removed all of the ADH as well as the area of PASH. She used the term "clean margins" This wording surprised me as I thought it only pertained to BC, not a high risk lesion. She told me that Tamoxifan was not indicated, and that I should have my next mammogram & ultrasound in November 2014 - 1 year after the screening mammo identified these areas. She also stated that I would periodically need to have an MRI. I am left wondering why other women in this forum have had different treatment post-operatively? For now, I feel satisfied.
I also want to thank beesie for the graphic above - helps me to understand more clearly.
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ocnj,
Your surgeon's reference to "clean margins" is perplexing, I agree, since from what I understand, in cases of ADH the objective of the excision is not clean margins, but rather a check of surrounding tissue to make sure that something more serious (like DCIS) is not being obscured.
I was also initially concerned about my monitoring protocol, since it seemed like the standard was mammo + us together, and then MRI 6 months later. When I asked my BC why she was not using this schedule, she said that she tailors the follow up to each individual pt and that in my case, she did not feel that an annual MRI was warranted.
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I have diagnosed back in December of 2013 with multiple ADH on both breasts and decided to have a double mastectomy (no family history, MRI came back clean, 48 yrs.) and feeling pretty good about my decision.My surgery is next week on March 19th., I decided not to get any lymph nodes removed.
Reconstruction will be done at the same time. the surgeon is going to use my stomach fat.. I do not want to deal with medication next 5 to 10 years, fallow ups every 6 months about 5 years so on.
That's my story.
Good luck to you.
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it's almost 3 years later. How are you doing? Have you had any recurrences of ADH or invasive
I understand how you feel, In October 2013, I had a lumpectomy that turn out to be ADH. I have a strong family history of BC - 2 sisters & a niece
I had the ADH in 2 spots. I'm scared that they may have missed something or that they maybe did get it all. Scary.
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Hi Momos, I have that dilemma right now. I had a lumpectomy Oct/13 & my surgeon & my Dr advised me to go on Raloxifene as I have besides having had the ADH, a strong family history of BC -2 sisters & just this past Feb, a niece. I'm very nervous & still haven't been able to start it. It's now 5 1/2 months since my lumpectomy & I'm already worried there could be more / microcalcifications and/or ADH or invasive BC .
Such a worrisome thing to deal with.
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Alicki: When they found the ADH in my right breast, I was also told that they found sclerosing adenosis, FEA (Flat Epithelial Atypia, apocrine metaplasia. My Dr said that all of these indicate more risk for BC in the future. So all of this plus my strong family history of BC scares me.
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Hi ladies,
I have a question about my path report. I am looking at it all for my next appointment at University Breast Center. I can't seem to find a lot of info about Multifocal Atypical Ductal Hyperplasia. Does that just mean that it is a larger area?
They found ALH in the biopsies and ADH in the excisional biopsies. Why do you suppose only ALH was found in the biopsies and then ADH was only found in the excisional? Doesn't that seem strange?
(Also, I just now noticed that one of the slides arrived shattered. Seriously?)
just for further info, here are the path reports:
biopsies
Left breast, outer, stereotactic core biopsy part A;
11/14/12): Flat epithelial atypia and focal
atypical lobular hyperplasia
in a background of fibrocystic changes and
columnar cell change with
microcalcifications.
Left breast, 11
o'clock, ultrasound core biopsy (part
: Fibroadenoma.Left breast,
1-2 o'clock, ultrasound fine needle aspiration
11/14/12): Negative for malignancy. Findings
consistent with fibrocystic
changes.Right breast, 9 o'clock, ultrasound core biopsy (part C): Benign breast
with no significant pathologic abnormality.
Right breast, 7 o'clock, ultrasound core biopsy
(part D): Focal atypical
lobular hyperplasia in a background of
fibrocystic changesexcisional biopsies.
Selected slides from left breast, surgical excision (slides 2F, 2H, 2J, and
2L): Multifocal atypical ductal hyperplasia (ADH) and flat epithelial
atypia. Background proliferative fibrocystic changes including usual ductal
hyperplasia and apocrine cysts. Microcalcifications present. Biopsy site
change.Slide 2H arrived shattered and cannot be evaluated.
Selected slides from
right breast, surgical excision (B12-0409550,
slides 1G and 1L-1N; 12/19/12): Focal flat
epithelial atypia. Background
proliferative fibrocystic changes including
usual ductal hyperplasia,
columnar cell hyperplasia, and apocrine cysts .
Microcalcifications
present. Biopsy site change.Any insight is appreciated. Thank you.
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To...jenpadden
Taking of the medications is such a difficult decision. I have chosen to get a second opinion to confirm or change my decision to not take the meds. I did ask pharmacist family member to research the side effects and also see if any of her past pharm clients had any issues with Evista. She also contacted 5 other pharmacists to get their info and she said that none of them reported issues with their clients. Now it could be that they do not bring their issues back to the pharmacist. I just wish you well in this difficult decision making process.
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Jen, yes, a worrisome thing indeed. I am 3 years out from my ADH dx and still obsess about the Evista question. During my last onc appt, I brought it up again, only to have my dr tell me that he thought in my case, the risks outweigh the benefits. I do a lot of alternative things, but still hard to put this question finally to rest. I do not have a family hx. Still, hate all the medical appts and even after 3 years, though it is somewhat easier, there are times when I still feel like I am waiting for the other shoe to drop. I have a SIL, with whom I'm very close, who's been stage 4 for 15 years. She has beat all the odds, but I feel like BC is always hovering in the background.
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Hi Cinvee, you definitely have high risk breasts. I think that when they say "multifocal" for the ADH, it means that there are several sites on a breast duct where there are the atypical cells. This is how Beesie explained multifocal DCIS, so I assume it has the same meaning. When they say "multicentric" it would mean several different sites on the breast. Multifocal is several different locations on the same duct. As far as the finding of ALH on core biopsies and ADH on excisional biopsies, these kinds of things happen all the time. I had ADH on core biopsy and DCIS (lots of it) on excisional biopsy. The core biopsies are necessarily smaller areas, and the other areas of pathology, found in the excisional biopsy, can be adjacent to the area assessed on core biopsy. They take a much larger amount of tissue during the excisional biopsy. What is your treatment plan at this point?
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Jenpadden,
I have adenosis but not scelosing adenosis nor any atypia found so far. Off to see a specialist in early breast cancer detection in the UK, he's also a plastic surgeon which I need right now. He's one the best in the UK, so if anyone wants me to ask him something, please let me know. As long as it's not too many questions, I guess, I could add, I know someone who has.....
I am trying to relax.
Thanks for all being there for me
Best
Alicki
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jenpadden and the others,
I did give Tamoxifen a try, twice. I do not understand why women won't at least give it a try? The potential is wonderful. The first round was 4 mounths and the second was 2.5 months, just .5 pill at night. No luck. I wish with all of my heart that I could have been one of those with no side effects. Unfortunately, I had severe headaches all day, every day and extreme fatigue. I literlly could not function and I am a single mom who works long hours.
Ballet, I know.
I have really problematic breasts. What scares me the most is that I also have Extremely Dense Breast (>95% I was told) so if they have seen all of that, I am terrified what they HAVEN'T seen. What else is lurking? I am lucky that I go every 6 months for mam/ultrasound then mri. We have been very proactive, but the worry is there every day. I went for a consultation at U of Michigan breast center and they took me into the Breast Cancer Center as a patient even though I am just high risk. I think she thought its just a matter of time. My next appt is April 9th for MRI, mam and ultrasound. They want all 3 this time. ugh.
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I have decided to give Evista a try and see if I have any negative side effects. I approach this med with much trepidation but after getting a second oncologist opinion I have decided that the benefits weigh my extreme hesitation in taking Evista. I really appreciated all the time this oncologist took to explain my risk factors and her past experience with patients who have taken this drug successfully. What a tough decision this has been.
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