ADH Club
Comments
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jerupe, please let us know how it goes with the Evista , as this is a question I've been circling for 3 years! I was under the impression that unlike tamixifen, Evista has no impact on the uterus, but my onc insists that it does . Anyway, just had a DEXA scan, so depending on the results , I may be swayed in one direction or the other.
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Jerupe and Momoschki,
I was diagnosed with LCIS over 10 years ago (a step further along the bc spectrum with double the risk of ADH) and my risk is further elevated by family history of bc (mom had ILC); so taking preventative medications was pretty much a given for me. I took tamox for the full 5 years, and now I've been on evista for over 4 years. Fortunately, I have tolerated both meds pretty well overall with minimal SEs. I had a lapse of about 4 months between stopping tamox and starting evista, as I wanted to make sure there was no overlap. I really didn't feel anything different when I stopped the tamox, or when I began the evista. Really nothing at all. From everything I've read, evista is generally well tolerated by most. I also have early osteopenia, so for me it is helping with 2 issues at the same time. Good luck to both of you.
anne
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Hi all! I have a question for momoschki...I think I read you went to Dr. Guth, I did as well, she also did not recommend the 6 month MRI, and only annual mammo for me. I was trying to research this on this board, found it interesting the one person I could find who was told no mri, went to the same BS, did you get a second opinion?
Thanks
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I don't have ADH, but I have both ALH and LCIS, plus ductal hyperplasia (not atypical ductal hyperplasi; its the 'atypical' adjective that puts you at measurably higher risk). The NCCN guidelines do *not* recommend more than annual mammograms and clinical exams every 6-12 months for LCIS women.
http://www.nccn.org/patients/guidelines/breast/ind... (pg. 60). Since LCIS women are usually considered to be more at risk (roughly twice the risk?) for bc than ADH women, and LCIS women are more likely to have the 'sneaky ILC' than the general population, you probably can understand why some docs would not recommend more than what LCIS women get. Currently, that's all I get (annual mammogram and twice-a-year clinical exam). I think I'm one of the few LCIS women who isn't followed with screening MRI, or hasn't gotten PBMs. Other risk factors, such as family history or prior radiation treatment (such as for lymphoma) may play a role in this decision too.
I'm *not* trying to dictate what the right screening is for you. That's for you, your doctor, and perhaps your insurance company to decide.
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Leaf, and ladies,
Interesting discussion about MRI's. Do you think that having extremely dense breasts is one of the major deciding factors above and beyond ALH or ADH? To me, because I have extremely dense breasts, my team would rather send me for MRI's and as my MO said, mams are useless for you. (except of course, they catch calcificaitons, which I also have) Looking at my mams is like looking for a snowflake in a cottonball.
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I just cancelled my April MRI. I'm going through changes in job & insurance and I think I'm going to skip this one altogether and just go for my November mammogram. I am feeling more & more that my surveillance is overkill. It's not just the twice a year tests. It's all the doctor visits associated with them, and I'm not even seeing a med onc. I can't take six days off a year for breast surveillance. The genetics doc even said the type of ovarian cancer I had raises my risk hardly at all. Frankly, i'm more worried about heart disease & colon cancer given my family history.
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Melissa---just had my yearly MRI this am and I was kinda going back and forth about it too. My oncologist surprised me back in Dec. when she came out with "you don't need MRIs any more, since your breasts are not dense". I really thought she had a better handle on my situation. I explained to her that density was never the reason for my MRIs; the reasoning was the LCIS and family history of ILC. But when she reviewed my reports more closely, she saw that there was discrepancy between radiologists about my breast density. so all things considered, she decided it was a good thing to keep having the MRIs. If it wasn't for the IV and the blood test, it wouldn't be such a big deal for me. I just don't trust mammos enough with my combined elevated risk (they miss up to 30%, while MRIs only miss 10%). but we each have to do what feels right for our own situation.
anne
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I really don't have much choice this time around as I just cannot take off for the multiple appointments having just started a new job, plus, going back to work full time disqualified me for the program I have been getting all my care from, plus the program is forcing us into Obamacare anyway.
I'm really worried about losing my gyn onc program as I still have two years of follow ups to go.
The only two obamacare plans that are 8% or less of my income are 2 HMOs. Can you believe that neither one has a single med onc or gyn onc come up when I search their network? How can that even be? Who are primary care docs supposed to refer to? You know care outside an HMO network is not covered.
You know, we are getting more screening than a lot of women who have had invasive cancer?
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Do you know.... Is Atypical lobular hyperplasia a higher risk also?....i was just told I have Focal atypical lobular hyperplasia, sclerosing adenosis and ductal calcifications. this came back after the stereo biopsy. I go to see a breast specialist next week. darn these boobs.
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Hi Ladies,
I did IT :-), last week, on March 19th, I had my surgery (double mastectomy) along with free tram reconstruction, so far I am okay. My biopsy came back cancer free. I am completely aware that I choose the most drastic solution for my situation (multiple ADH and atypical cells in both breast, extremely dense) but knowing that I will have one less worry seems worth it.
I wish everyone the best in their choice of treatment and HEALTH,
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to Lucky Mother...knowing that your decision was a difficult one I wish you well in your recovery. There is much to be said for having that peace of mind of knowing you have done everything possible to prevent breast cancer.
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Hi V8grrl: "
Do you know.... Is Atypical lobular hyperplasia a higher risk also?....i
was just told I have Focal atypical lobular hyperplasia, sclerosing
adenosis and ductal calcifications. this came back after the stereo
biopsy. I go to see a breast specialist next week. darn these boobs.Yes, atypical lobular hyperplasia (ALH) is higher risk too. Most studies I've seen combine both ADH and ALH together in the same risk group. Even though you see ADH and ALH described as 'high risk', IMHO, there is a BIG difference in people's definition of 'high risk'.
Some particular BRCA mutations put women at an 80% lifetime chance of breast cancer. Yes, I'd call that 'high risk'.
Some papers also call ADH and ALH as 'high risk'. This recent study (different studies differ)
A total of 698 women with atypical hyperplasia were followed a mean of 12.5 years; 143 developed breast cancer..http://www.ncbi.nlm.nih.gov/pubmed/24480577
143/698 = ~21% over a mean of 12.5 years. (This 21% figure includes DCIS) Remember, the lifetime overall average for breast cancer in the USA population of women is about 13%. Most women are diagnosed in their 40s-60s.
In another study ,Estimated 10-year cancer risks were 17.3 % with ADH, 20.7 % with ALH, 23.7 % with LCIS, and 26.0 % with severe ADH http://www.ncbi.nlm.nih.gov/pubmed/23117858
There is almost no information about the long term (>15 yr) risk of ALH or ADH. In this study of LCIS (which generally is considered to be more at risk (not less risk) for breast cancer than ALH or ADH), was found to be at least 7% after 10 years. http://www.ncbi.nlm.nih.gov/pubmed/?term=LCIS+Chu...
LCIS and DCIS are certainly considered to be closer to invasive cancer than ALH and ADH on a microscopic level. I guess this shows how little we know about probabilities.
Your prescriber may give you different numbers; studies are different; women are in different situations, some women have different risk factors such as family history or history of chest radiation treatment (such as for lymphoma).
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Thank you Jerupe,
I am in complete peace, my biopsy report found very large area, about 6cm, ADH, microcalcifications, dense breast, fibrosistic breast, atypical cells on left, and on my right in addition to all those I also had ALH.
They did not remove any lymph node, and my recovery is great, my breasts look natural (free tram style, fat was put from my stomach).
Wish everyone the best,
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Congratulations luckymother! I'm happy your surgery went well and you feel good about your decisions. And you made the right call with the nodes, too.
Sounds like everything is working out great. Hope your recovery continues to be smooth.
Best,
Sarah
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I had surgery on March 31, to remove an abscess in the sub areolar region of the left breast, as well as some little blisters and tiny lumps beneath the areola. They put four stitches at the bottom of the areola with openings between each stitch for drainage purposes. The only reason they moved to surgery is because 2 antibiotics did not get rid of the swelling on the areola and the redness of the skin just below the areola. The first ultrasound done showed what they referred to as "inflammation". They waited to do a second ultrasound 1 month after both antibiotics (2 different types) were administered to see if the "inflammation" went away....it did not. I had my post op apt yesterday (April 9, 2014) with the Dr. who performed the surgery, who is a general surgeon with a special interest in women's breast. Before she even looked at the breast and stitches, she went over the pathology report in short, which said that I have "Atypical Ductal Hyperplasia and Atypical Lobular Hyperplasia." She said that they have to go in and do the surgery again and try to get as much of the ADH and ALH tissue as possible and run some more biopsies. She said in the mean time, an oncologist office will call me to set up a consultation to discuss meds. Before revealing my left breast, I warned her that the redness had returned a couple of days ago. She said well let's get you on an antibiotic for precautionary measures. I am like great, another surgery. I just finished healing. I hope this is not a sign of things to come. Last June, I was downgraded to having mammo and ultrasound every 12 months. I had been having them every 6 mos for the last 4 years, along with MRI's. The only reason this came up early is because the pain and swelling that is ongoing with the left breast. I thought maybe the swelling was a hidden reason to find something that the tests didn't reveal and so far that has been accurate. I am thankful I had the swelling if it meant finding something that doesn't show on the tests.
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Hello there,
Guess I am joining the club as well
I read through the posts and this site is very informative. My story: I am 36, found a lump last summer, had a mammo in September, very small dense breast, they missed it and just noted a lot of micro-calcifications in both breasts. I didn't follow up until the lump grew a lot ( 3 cm) till January when I mentioned it to my gyn who sent me to a breast specialist. An ultrasound was followed by a core biopsy that showed fibrosis, adenosis and multifocal atypical hyperplasia. Before going for an excisional biopsy, my doctor asked for further immunohistochemistry testing. Results were inconclusive and resection of the entire lump was recommended. Doc decided on a quadrantectomy(removing 1/4 of the breast) with clear margins, so he would not have to go back in in case the results are DCIS. Pathology results were again inconclusive (by then I was banging my head on the wall), and now I am waiting for the immuno results again. Basically, pathology says it seems to be only ADH but they are not 100% sure and the multi-focal part (3 different spots) seems not to be so good. After doing my research, I realized that I may not be in the best position : under 45, multifocal ADH, micro-calcifications in both breasts. The good news : no cancer history in the family, at all. I am healing from the surgery, at least the doc did an awesome job and after warning me the results could be ugly, he went in through the nipple and did an immediate reconstruction. Looks almost as good as new Now, the questions: if it was DCIS, they would have seen it in the biopsy of the lump? The inconclusive results make me crazy because no black or white here. Now I am thinking of all the options, the constant monitoring, the Tamoxifen and the drastic option, double mastectomy.
I really agree with the ticking bomb metaphore, ADH is a limbo, not cancer but not normal either.
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luckymother - Congratulations on taking that step.... I'm sure it is a huge burden lifted. I'm sure you went through a lot of mental stress as well.
I am in Illiniois, and may take that leap soon. Since you seem happy with the team you used to do your surgery, please, if you wouldn't mind sharing, let me know who and where you had it done. I am diagnosed as ALH. I had the first excision to remove an abscess and biopsy on 3/31/14 and scheduled for another surgery on May 9 to clear the left breast lateral margins which are positive (at this point, they haven't checked the right breast.) I was thinking so they are positive, but I thought that is okay as long as I follow up.....She, the surgeon said that she would just remove the stitches at the next surgery. I'm going to call shortly and tell her that they are very bothersome and I want them removed. I am having to keep a bandage over them because they are like " erect wires" rubbing against my areola. I have my consult with the oncologist this Thursday, April 17 to discuss meds, I guess.
I have very dense fibrocystic breasts. I've had Mammogram and Ultrasound done every 6 months for the last 4 years. Last June, they downgraded me to having it done annually. In 2000, I had a needle aspiration, benign. I have had 3 MRI's done, 1 in 2009, 1 in 2011. I also had an MRI guided stereotactic done in 2012 at Knoxville Comprehensive Breast Center in TN.
If anyone can tell me what questions I should ask the oncologist, I would be very grateful. Thanks so much!
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Hi Renee! I have LCIS and ALH. They don't try to get clear margins on ALH or LCIS. That's because normally there are multiple spots of LCIS (and presumably ALH) in a breast, and it is often bilateral (in both breasts).
Since they can't reliably see ALH or LCIS on any imaging, and is only diagnosed by a pathologist looking at a piece of tissue under the microscope, the only way they can positively 'remove all the ALH/LCIS' is do do bilateral mastectomies, and even then they have to leave some breast cells in place. (My breast surgeon refused to consider doing bilateral mastectomies on me with LCIS and ALH.)
Even if, magically, they could remove all your ALH, that wouldn't necessarily remove your risk. For LCIS (which is usually considered a more advanced case of ALH), when these people go on to get breast cancer in the future, they often get breast cancer not _at_ the site of the previously known ALH or LCIS, but in a different spot in the breast (or in the other breast). So that's why ALH and LCIS are known as being a risk factor for breast cancer. In a minority of cases, they think that LCIS can itself become breast cancer, but in a majority of cases LCIS patients never get breast cancer.
Unless you have other significant risk factors (such as 1st or 2nd degree relatives with breast cancer or ovarian cancer), or a history of radiation treatment (such as treatment for lymphoma) you aren't at anywhere in the category of 'high risk' in my opinion. Some papers classify LCIS as 'moderate risk'.
Its totally fine to ask your oncologist 'What is my risk for getting breast cancer?', but don't expect the answer to be an answer they know well. I was shocked years after my diagnosis to find this academic opinion paper.
http://jnci.oxfordjournals.org/content/98/23/1673....
A synopsis of this paper is that, for the modified Gail model (which you are eligible to take since you don't have DCIS, LCIS or invasive)
http://www.cancer.gov/bcrisktool/, even when they add risk factors such as breast density (in the Decarli model), they don't get better than a 59% concordance rate. I know statistics are awful, but what this means is they compared the group of women who got breast cancer and the group of women who didn't get breast cancer. They took one random person from each group and compared their scores on the two models.
In other words, for 59% of the
randomly selected pairs of women, the risk estimated
for the woman who was diagnosed with breast cancer was higher than the
risk estimated for the woman who was not.
Unfortunately, for 41% of the pairs of women, the woman with breast
cancer received
a lower risk estimate than her cancer-free
counterpart. Thus, for any given woman, the two models were better at
prediction
than a coin toss—but not by much.(A coin toss would be a 50% chance of heads and a 50% chance of tails.) This does NOT mean your risk of breast cancer is 50% or 59%. This means that the modified Gail model, even when you added risk factors such as breast density, was 'right' 59% of the time, and was 'wrong' 41% of the time.
The modified Gail model *is* accurate for groups of women. If they have this much trouble in predicting which women will get breast cancer in the general population, just imagine what the database is for a woman with ALH or LCIS.
Some people get 'Your lifetime risk for breast cancer is 58.3%'. I got 'your lifetime risk is about 30% without tamoxifen'. Another place said 'Your lifetime risk is somewhere between 10% and 60% but probably closer to 10% than 60%.'
Unless you have a significant family history or had radiation treatment (not routine diagnostic chest Xrays), the state of breast cancer prediction is in its infancy.
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Hi Renee,
I just sent you a private message. Please give me a call.
Yes, I am completely happy/relief of my decision. My reconstruction was free tramp and VERY successful, as time goes by, clearly some manor cosmetic issues are appearing and my PS told me that after 2 months he will correct everything in office surgery. Before the surgery my initial needle biopsy indicated that I had ADH on both breasts, however, after surgery biopsy came back AHD on left ALH on right, and TONS of atypical cells.
Let's talk, feel free to call me.
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Thanks, Leaf for the information. My Grandmother died of cancer, but other than that, I do not have a family history.
I had another oncologist look at my pathology report and he said I have both ADH and ALH. He said I have too many confusing areas that they are unsure of and want a closer look. Regarding the atypical cells, he said I am only at 2.5 percent higher risk than a woman with no atypical cells. At this point I am opting out on Tamoxifen. He said I absolutely need to proceed with a second surgery and biopsy to see if there is anything hiding in there. I finally had to call the surgeons office again because I wanted these stitiches out as they were really rubbing against my areola. Sadly, since I was fit into her busy schedule, she was in big rushed hurry. I could not even get questions answered. She had the same male intern with her again too. She has a very poor bedside manner. Some of the stitches are embedded in the incision because they waited to long. The incision is about 2 inches wide. Also since the surgeon had to leave an open drainage area for an abscess to drain when she closed me up, there is an indented/gap between the flesh and the areola. It is all black where the stitching is embedded and to me it looks like somebody sewed me up with black thread. I'm scheduled for the second surgery with her on May 9th and I'm thinking that she would have to cut all this ugly stitching area out and then pull it together when she stitches it, right.......because It is so unsightly and ugly. I have no idea because she is too busy for me to ask questions. I have proactively scheduled a consult with another General surgeon about 70 miles away, who specializes in breast cancer, breast disease and various breast biopsies and other disorders of the breast. unfortunately, she didn't have an opening sooner than May 8th. I am not going to allow the current surgeon to make another mark on me.
I had basil cell cancer cut out of my face via MOHS surgery. The surgeon did a beautiful job. Why couldn't this surgeon do a job like that.
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Does anyone else have a hard time scheduling their MRI? I don't know if it is just my hospital or if this is normal practice. My surgeon wanted me to have my MRI in April so they scheduled me for April 1st. I went, got all prepped and ready to go. I had been there an hour and when they came (I thought to take me to get my IV) they said they had to cancel. They said my MRI had to be 7-15 days after the start of my last period and I was there on day 16. 1 day! The problem is that I am not on any regular cycle so to try and schedule to make sure it is in that time frame is going to be next to impossible. They didn't have any openings in May with what we guessed could be the right time of the month so they booked me in for June 24th. Here's hoping that ends up falling in the right time frame because I am not comfortable waiting any longer to get this done. Back in August when the surgoen told me I had ADH, she wanted me to do some thinking about a double mastectomy and we would use these results to see if I should do it sooner or could wait until the next MRI. Now it's going to be almost 10 months since I last saw her and had any tests done so I am getting anxious again about leaving things this long. I'm just curious as to whether everyone else has to have their MRI's scheduled aroung their cycle or if this is just the way they do things here.
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Hi Collen,
I never heard of that. My initial mammogram showed several microcalifications and I had 5 biopsies on the same day (result was tons of ADH on both breasts), then saw the surgeon had MRI couple of days later then in March, over 6 weeks ago, I had my double mastectomy and reconstruction. During this journey my cycle was never mentioned. I am 48 by the way. My MRI was clean, biopsy after the surgery came back clean as well. The urgeon did not remove any lymph nodes, my reconstruction was free tram, PS removed fat my my tummy. If you want to talk further please let me know.
Best
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yes, I have actually heard of timing the MRI to the menstrual cycle-- the rationale is that certain hormonal activity renders the MRI more difficult to read. This has never been an issue for me, however, since at nearly 57, menopause appears to finally have arrived.
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momoschki - Thank you. It makes me feel better knowing you have heard of this so I am not the only one. I just don't like all of this waiting, but who does. Thanks again.
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Colleen,
No problem--- best of luck to you. The waiting absolutely sucks, there is no way around it. Let us know what happens.
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I am so thankful that I went to see/consult with a new surgeon last Thursday, May 8, 2014. She was extremely knowledgeable concerning the breast and issues that can arise from it. She gave me GREAT news! She said that based on the pathology report, she does not see the need to have a second surgery. She said if the pathology report used the word "Pleomorphic" to describe the Atypical Lobular or Ductal Hyperplasia cells (meaning more spread out and more agressive) as oppose to the word "Usual" Atypical Lobular or Ductal Hyperplasia, meaning the usual Atypical pattern and less aggressive Atypical cells, then there would be a need to further investigate and remove more tissue for biopsy. Since it is the usual Atypical pattern, she said it is not necessary. However, she said if I am worried, go ahead and have the surgeon do the second surgery. She said she herself would not do the surgery based on the results of the pathology report. The surgeon who said I need to have it would have to do it. She said it would just be taking a lot more tissue out.... thus, reducing the size of the breast with a strong probability of finding benign results. She also stated "while Atypical cells put you at a slightly higher risk 2.5 % to go on to develop cancer later, please know that not all women with these Atypical cells ever even get cancer." She said to take Tamoxifen to lower my risk of getting cancer is up to me. She said you have to weigh the pros and the cons of taking it. She also stated that the single most important thing that I can do is to continue being proactive in my breast care and make absolutely sure I get my screenings as scheduled and on time. She said I should probably continue to have the sreenings every 6 months to be safe....Wow, I am so relieved and feel like a burden has been lifted. First and foremost, I thank my Lord and Savior Jesus Christ for His mercy and His Grace. Secondly, I thank my wonderful friends and family for they're continued prayers and support. So I choose not to take Tamoxifen, but to trust God that I will not get cancer.
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The surgeon also reminded me of this: "these cells were found by accident because you had an abscess and inflammation that didn't respond to 2 antibiotics, which warranted the surgery to drain the abscess and do a biopsy to further investigate." She also said that the "Mayo clinic addendum to the pathology report doesn't even comment on the positive margin because it is the "Usual Atypical Hyperplasia." She said "Once people are made aware that they have these Atypical cells, all it does is scare the heck out of them and send them into panic mode believeing that they must have more surgery.... when really all they need to do is be devoted to making sure they do not skip breast screenings."
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In addition, the surgeon said "You must do what you feel is right to you. If you are scared and feel like there is something more in there that needs to be investigated, then have the surgery and let them remove more for testing." I felt complete peace about not doing another surgery.
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I had to call a couple of weeks ago and cancel my June 24th appointment because timing wise with my cycle it wasn't going to work. Thankfully my nurse felt really bad because she knows I have been waiting a long time for this MRI so she squeezed me into the 17th. I had the MRI and mamorgram yesterday and now back in the waiting for results stage. My follow up appointment isn't until July 2nd. After my MRI the radiologist said my surgeon should have the results in 2-3 days so I may try calling them next week to see if they can tell me anything so I don't have to worry for too long. Hope everyone is doing well.
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I keep getting an error message when starting a new topic so I am posting here. (I have had ADH.) I am 51, years and years of breast issues, biopsies, lumpectomies, etc. July 2013 had an excision and LX that reported ADH, left breast. Had my MRI
yesterday. The lady said she would call me with results in a couple of days. She
called this morning just after 7 and said things looked benign but there is an
area of enhancing lesion on the left/mid side of my sternum. I am supposed to have an ultrasound
and bone scan. What is an "enhancing lesion", and can ADH be seen on an MRI? (It
did NOT show up on my MRI June 2013. I had bloody discharge and that was what
prompted my surgeon to do to lumpectomy. Thanks, everyone..They called today to set up the bone scan and another woman mentioned an u/s for my RIGHT breast because the MRI "saw something"....ugh, this waiting!
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