ADH Club
Comments
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Hello Everyone!
New member to the club and let me begin by saying that this discussion has brought me more peace of mind than anything I have been able to find on the Internet.
Here is my story...I am 39, no family history that I know of (paternal history is null) and no issues to speak of. I had a mammogram because I was seeking pre certification for a breast reduction (34DD). A nodule and calcifications were found after a second mammogram and ultrasound. Multiple biopsies ( 1 core and 1 vacuum something or other) for the spots and those turned up benign but 6-7 abnormalities (unsure at this time) along with intraductal palpilloma and atypical hyperplasia. I was suppose to see my BS on July 8th but was called today because of a cancellation and now am going tomorrow at 8:30.
I am leaning towards masectamy as just waiting this period of time is taking a toll on me. I keep looking at my breasts and i hate them. I feel angry.
I appreciate you all sharing your lives to help new individuals.
Angela
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hi Angela,
I can certainly relate to the anxiety of waiting to find out exactly what's what. When I first was dx'ed with ADH about 3.5 years ago, my reaction was much the same as yours: I couldn't imagine having to cope with a future filled with more tests, biopsies, etc. Have you had an excisional biopsy yet? This should give you a more complete picture of what's going on and is important to rule out anything malignant that might be lurking (I believe this is only true in about 20% of cases.). Also, an MRI can be helpful.
I think when we first get slammed with a potentially serious dx and get that "high risk" label, it's really normal to be scared, angry, and just feel like screaming, "off with them!" but your BS should be able to give you a better handle tomorrow on just what your risk really is.
Let us all know how things go tomorrow!
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Momcat - good luck with your tests. I can't answer your question but hopefully someone else will be able to. Keep us posted. Hugs.
Angela - good luck tomorrow. I had my MRI and mammogram Tuesday and when I came home from work today there was a message from my doctor to call them. I guess I will have to wait until tomorrow to find out why they are calling me so quickly. Make sure you ask lots of questions before you make any decisions. Hugs.
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Hello everyone,
I am new to the site; thank you to chickenpants for starting the thread 3 years ago! I am 50 years old. On 7/14/2014 the last of my three core needle biopsies, this one stereotactic, showed ADH "with mucinous change and flat epithelial atypia" in both the tissue with the microcalcifications and the tissue without the microcalcifications. I have an appointment with the breast surgeon at my cancer center on 7/28/2014 to discuss the Excisional Breast Biopsy I need. My mother and her sister died of breast cancer in their early 50's.
On my last mammogram the radiologist found three areas needing biopsy -- the first two were ultrasound guided biopsies to look at two masses; those masses turned out to be "dense stromal fibrosis", which I was told are benign. However, the ADH discovered on the stereotactic biopsy is literally right next to one of these benign tumors. My breasts are building things and this should be a no-construction zone.
Does anyone know what the "mucinous change" means, if anything? I've been searching the internet, and I think I've found as close an answer as I can get before talking to my doctor: that ADH associated with mucinous change has a higher likelihood of having a malignancy there. By the way, I don't scare easily: I nursed both of my parents through cancer and ultimately their deaths, and you just play the cards you are dealt. However, I like to have a "brass tacks" sort of understanding of everything that I am dealing with, because Knowledge is Power. So if anyone has some data feel free to pass it along!
I am thankful to have found a community of people going through the same thing.0 -
ispy, Welcome to the BCO community. We are sorry that your current situation has brought you here but glad you found this terrific group of supportive and knowledgeable others who can be of help along the way. While you are waiting for some responses here you may also want to explore another similar topic in the High Risk Forum ADH and ALH. There has been some recent activity and postings there. We look forward to hearing from you. The Mods
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Hi all,
I'm joining the ADH club, though I'm not very happy about it. I'm so thankful for the information I have found here. I'm feeling more in control or at least much more knowledgeable.
Found micro-calcifications in my extremely dense, cyst filled breasts in both 2013 and this past July. Stereotactic biopsies performed in 2013 and 2015 and this time found evidence of ADH with recommendation for an excisional biopsy. The pathologist report from the stereotactic indicated 'highly atypical' instead of just atypical so there's a bit more chance of an upgrade. I had an MRI last week and it showed limited abnormalities with a recommended follow-up in 6 months. That has given me a lot of confidence going into this next step. Biopsy was on Monday Aug 24 so waiting for the results.
A big plus - my BS told me he was going to take some extra tissue hoping that if it was more than ADH, then he would capture it with clear margins and prevent an additional surgery. I was expecting the worst in both appearance and pain but the recovery has been so easy compared to the last stereotactic biopsy. I had much more swelling and bruising from the stereotactic..
I know I will have questions after receiving the pathology report. I'm not sure where I'm going, but I'm sure I'll figure it out.
My best hint - I found kitchen sponges cut in half, made wet and put in the freezer make perfect little ice packs for in my bra.
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It's a club no one wants to join. Sorry you are here. At least there's support here
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I love the sponge ice pack. What a great idea! Good luck with your results.
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Hi everyone!!!
I don't even know where to start. I went in for a mammogram (routine) my last one was in Oct 2014 but I have new insurance and did it 2 month earlier than the year. I was called back for suspicious cluster of calcifications. I had 2nd mammo i got a birads 4, so now im getting really scared. My gyno said its probably nothing. He sent me to a general surgeon. I kept my appt, so the surgeon comes in and said we need to do a core needle bopsy and an ultrasound. He said you have a birads 4 which means more than likely its cancer. I looked at my husband and we both said i wasn't going back there. I searched the internet for a cancer center near me and found one 1 1/2 hours away. I had my ultrasound done before my appt to the cancer hospital. It came back a birads 3 small cyst. I was feeling confident. Got to my appt at the cancer hospital gave them all my images and reports. They redid mammo and ultrasound I was about to be let go with just close monitoring mammo every 6 month for changes. Radiologist came back and redid ultrasound and found a second lession not of cyst looking. He did a needle core biopsy guided by ultrasound. Not bad at all not painfull. He called me the next day and tells me the results are benign but with an * so i'm back to confused. He said of all the samples only 2 tiny tiny pinhead size adh cells were found. Now i'm scheduled for incisional biopsy mon Sept 14, 2015.. I am scared out of my mind, I feel I have been frozen in time. My anxiety and dpression is at 100%. I will add I have silicone breast implants that I got only 3 years ago. Has anyone had a similar expierience or any advise for me. I only have my husband and he doesn't realize how serious this can be. My breast implants are not at all priority, but I also read the breast implants don't have a chance against radiation therapy because of the scar tissue. Has anyone had a similar situation.
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Tinkerbell49, first, welcome to BCO and second, yes, you are not alone with what you are experiencing. It is not uncommon to have this back and forth. We understand just how psychologically stressful it is however! We're all here for you, and routing you on for the next test. Please keep us posted.
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Thank you moderators you can't imagine how happy I am to here from someone. I guess I'm just having a bad day.
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it can feel like you're being swept up in a storm and trying to find something to hold onto. Keep in mind that you've had tons of tests and they've only managed to find two tiny areas of cells that are thinking about becoming cancerous -- but aren't cancerous. Doctors are very thorough these days and don't want to risk missing a cancer. So they'll do the excisional biopsy and they'll either find cancer or they won't -- worrying won't change it (easy to say, harder to do). Find a project to do this weekend -- paint a room, clean out all closets, etc. keep your mind off of it. Monday will be here soon enough!
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OThank you Ispy. The anxiety comes and goes. I'm Hoping for the best. I'm going to be a grandma for the first time in Oct. and I just pray I get some positive results with no * (buts). If not I will just have to take one day at a time. I am thankful for this forum. I am 49 years old and I have 2 grown kids. Sorry this is all new to me.
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oh I know what you are going through. I had exvisional biopsy and same dx in March with calcifications and birads 4. I'm
Constantly worried too. That's why we are here in the ADH club. Good wishes and prayers for you. Even if it's not frank cancer yet, it's a worry for sure
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Good morning ladies
I just got a call for my pre admission over the phone since I live 1 1/2 hrs away. I will be having an excisional biopsy/lumpectomy, with a ultrasound guided wire on Monday. I read that lumpectomies are performed once,cancer has been confirmed. Now i'm confused once again, could it be that the area is small, since I don't have a palpable mass, and this is why he is doing this? He is in surgery all day the nurse could not answer. I requested to have my pathology report emailed to me. I'm waiting for it to come through. The pre admission nurse said it also specified a nuclear imaging which I had no idea off I figured well it's because of my implants. But no I spoke to the nurse and she said no that I wasn't having that done. Wow I wish everyone would be on the same note. I chose to go to the university cancer center because this is all they do, I hope I made the right choice. I will post the pathology findings as soon as I get them. Once again thanks to all of you ladies for your support.
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no this is totally normal for ADH. An excisional biopsy is the same thing as a lumpectomy. Two words for the same procedure. They found some abnormal cells - ADH -- and they are going to cut around that small area and get some more cells to make sure there isn't a small amount of early stage cancer sitting there. Sometimes DCIS (stage 0 cancer) is sitting next to ADH so they do the excisional biopsy to make sure there isn't DCIS there. Nothing has changed from your original conversation with your doctor.
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Thank you ispy, Praying for the best. My family history is not good. Only one great aunt died of breast cancer but she was in her late 60's early 70's. My fathers side had 8 sister and 1 brother only 1 sister living and my dad whom had his prostate removed 10 years ago for cancer. All the rest have had from colon cancer, melanoma metatstisy, ovarian or uterine not sure she died last year. Her son had colon cancer at 51 he died at 52 from liver complications. My moms side ,2 brothers and her. My granfather had colon cancer and eventually he died from it, he did not follow up. My uncle lives with prostate cancer and my other uncle died at 62 from stomach cancer. My grandmother was killed in a car accident 1986 so I don't know if she would have developed anything she was in her early 60's. Wow!! I'm tired just writing all this. I always said one day it would be my turn but never really gave it much thought til now. There's more but I guess you got an idea of what I mean.
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Hi again..
Thank you ddw79..
Well I got a copy of my CORE NEEDLE BIOPSY results. I'm posting this in case it can help any mew members that are in the diagnosis process as me. Not that I completely understand them but maybe someone here can give me some ideas.
This is in my left breast: Atypical Ductal Hyperplasia (two microfoci)
Unfolded Lobules with columnar cell changes
calcium oxalate crystals are identified using slide polarization.
Thats all.???? I will know for sure after Monday, Does anyone know what my odds might be on an upgrade after excision to DCIS. This is terrible on the mind. I'm usually the optimistic problem solver. I agree with ispy knowledge is power .
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I believe that in 20% of cases, there is DCIS found along with ADH on excisional biopsy, so the odds are definitely in your favor.
Best of luck and keep us all posted! I have been where you are-- the anxiety is no fun but you should have more answers soon
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I was also told 15-20 possibility of upgrade to DCIS. My situation sounds identical to yours. At the time no upgrade . Freaking out already about follow up Mammo next month , first post surgery.
Hoping no upgrade in your case and thinking positive.
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Thank you momoshcki and ddw79
I'm thinking positive. Good luck ddw79 on your follow up appt next month. I will include all of you girls in my prayers.
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keep us posted Tinkerbell. Routing for you .
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I've had microcalcifications being watched for almost 2 years now and in April of this year had a core needle biospy and found ADH, and then had an excisional biopsy (wire guided) . The biopsy from the surgery was clear and no further ADH found. However, I'm coming up on my 6 months in just about 4 weeks and worry too. I am amazed at how many women there are with the same dx. I am 51 and no family history and in very good health but it seems that it doesnt matter much anymore, this can be anyone. I do believe in positive thoughts and prayer. I'm sorry that anyone has to worry and have this on their mind for the rest of their lives but it is nice to know we have others who can support and understand so we're not alone. Has anyone had a diagnosis of 5 or more years that can tell us how it has gone for you and hopefully have a good success story without reoccurrence?
Prayers for good health for us all. Thanks so much for sharing on here, it does bring a little comfort.
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Hi MominGA, I went 17 years after an ADH diagnosis without additional problems, but when diagnosed again with ADH in 2012 by core biopsy, the excisional biopsy did have an upgrade to DCIS. I was actually very surprised, but the DCIS treatment went well and it's been over a long time now.
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Thanks Ballet12. That's great news and happy you've had good health for so long. It's encouraging and praying mine will not return. Thanks for sharing.
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mominga----I was diagnosed with LCIS (a step further along the bc spectrum from ADH ) 12 years ago, and my risk is further elevated by family history of bc (my mom had ILC and is a survivor of nearly 29 years with no recurrence); I had a lumpectomy, took tamoxifen for 5 years, then switched to evista which I have been taking for about 6 years, and I continue high risk surveillance of alternating mammos and MRIs every 6 months. I'm going for genetic testing next week. I haven't needed any further biopsies since my original diagnosis. (but I would always revisit the option of PBMs if anything more serious were found.)
anne
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I'm approaching the 5 year mark in February. After a lot of deliberation and obsession, I decided to take evista last November. So far so good. I haven't had any additional problems, but still get pretty wound up when some kind of screening is coming up. I've got the mammo on 10/20. Since this whole ADH episode, now ALL medical tests/procedures make me crazy. The thing I find especially infuriating is that even if you are fortunate enough to hit the 5 year mark with nothing else popping up, the risk still increases annually
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- It's good to read these stories. Like Momo I'm getting my follow up Mammorgram onOctober 23 which is actually a month after the suggested six months due to scheduling challenges. I'm bringing a good friend who has breast cancer with me. I just don't think I can do this alone. Hugs to all of you brave women.
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Hi everyone
Tommorrow is the day,(excisional biopsy /lumpectomy) my anxiety level is high. Im having so many different emotions it's scary. I promised I would not search the internet any more it only adds to my anxiety. Thank God for this club and all you brave ladies. I get hopeful and positive when I here your stories. There are so many what Ifs...
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Tinkerbell, I totally get it. It's all very scary and overwhelming, but at least after tomorrow you will have this part over with and you'll have more information. Best of luck to you and please keep us all posted.
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