ADH Club
Comments
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gwen, that is great news! I just had my excisional biopsy and results came back as nothing more than ADH. I hope it's the same outcome for you!!
In terms of how bid DCIS has to be for it to be picked up by MRI, I don't think there is a "one size fits all" answer. I think there is a lot of variability, but the final biopsy results will give you the definitive answer.
Do you have s surgery date yet? Good luck!
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Gwen, my understanding is that DCIS is found in approximately 20% of cases following the excisional biopsy. While the MRI is a highly sensitive instrument, no imaging is perfect. In my case, the excisional biopsy found nothing else -- all the ADH had been removed by the needle biopsy. Good luck and hang in there
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mystic88--glad to hear your excisional biopsy came back with ADH vs. DCIS or anything worse! I'm hoping I'll have the same result. I don't have a surgery date set yet--I ended up having to reschedule my doctor appointment yesterday--but that turned out to be okay as I'll now be meeting with a doctor that I've heard is an improvement of who I HAD been scheduled to meet with.
This whole process for me has been a bit of a clusterf**k, as paper copies of test results weren't mailed to me when I was told they would be, my case was left "open" as while I was on a 2.5 week vacation it had been decided I should have an MRI before meeting with the surgeon but nobody communicated this to me, I wasn't called with my MRI results yesterday when I was told I would be because the NP's computer crashed and apparently that's the only way they can track what's going on, etc. I've had to make a LOT of phone calls. The most ridiculous one is the fact that I only learned I'd need an MRI after I'd called the clinic when I hadn't received test results back. Even though I was on vacation, there was no attempt made to contact me about needing additional diagnostics. Even a simple voicemail telling me to call them would have sufficed, as I was on the East coast and I did have my phone and calendar with me. Very frustrating! Where I go because my situation isn't dire, I fall into the category of receiving a very piecemeal approach to dealing with patients. The only good thing about the clinic messing up so much is I now will be working with an actual nurse who can help coordinate my care and do a MUCH better job of keeping me informed and explaining what the process is.
All that aside--thanks for sharing your experience and thoughts! I was thinking the same about the MRI and that a more definitive answer will come from the excisional biopsy. Keep your fingers crossed for me!0 -
Thanks, momoschki! I was thinking that was likely the case. I know while it's not likely, it's important for me to know that possibility exists. Guess you could call me a defensive pessimist. It's been an effective way for me to deal with situations especially because I have anxiety (fancy term for it is Generalized Anxiety Disorder).
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Gwen, as a fellow anxious person, I totally get where you're coming from. I always hope for the best while I part of me persists in expecting the worst, even though I'm coming towards a 7 year anniversary with this mess. In some ways it has gotten easier to deal with, but as 6 month checks approach, I still veer towards the proverbial ledge.
Keep us posted !
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Gwen, I too had to jump over a ton of hurdles to get through this whole situation. There was an issue after my MRI where they thought a mammo had also been ordered but not scheduled, so they would not read my MRI until the mammo was scheduled. The problem was NONE of my drs ordered a mammo- in fact, on all my request forms it said "mammogram deferred due to age and breast density". Long story short it took 5 days for the MRI to be read. I had to call the imaging center multiple times a day to follow up and push things along. Your have to be your own advocate and make sure things are being done.
I'm glad you are seeing a great dr. I really hope things go well!!
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Hi everyone! I have an update--I met with the breast surgeon Tuesday of this week and she's GREAT. While what all happened at the breast center clinic really frustrated me, the fact that one of the most important people in this whole process is really good definitely relieved some of my stress! That's thanks in no small part to the nurse at the breast center clinic who stepped forward to help me and who got me the appointment with her. I'm scheduled for an excisional biopsy on October 26. I'm okay with the date being further out as there are some events and other happenings coming up that I wanted to not be sore/recovering during. Plus more time gives me an opportunity to take care of some of what I've had to put on hold while waiting to see what the plan would be. The surgeon told me she's not expecting to see any cancer or DCIS, but as ADH is a marker for it and could be hiding it, they want to biopsy it to be sure for peace of mind. I'm in full agreement with that!
One thing I wasn't expecting--I had been thinking from what I'd read that I'd have a wire-guided excisional biopsy but they'll be using a radioactive seed instead. I'm okay with that, sounds much better than having a wire poking out of my breast! I'll get the seed put in the afternoon before at the breast center clinic, with surgery at the hospital the following morning. Another thing I'm happy about is I only have to go back to the breast center clinic one more time at least for now, to have the seed put in. I was able to make my follow-up appointment at the clinic right next to the hospital. I had my appointment with the surgeon at that same location and everybody was REALLY nice, even the receptionists/check-in people seemed more low-key. Having been a receptionist myself, that can say a lot about the general atmosphere of a place.
Anyway, it feels GREAT to FINALLY have a plan in place. The plan post-biopsy is still up in the air, of course, but I'll see what that is when we get there.0 -
That's great, Gwen! It definitely makes a difference in terms of mental health to have a treatment plan set up. There's a lot of ladies here that had the seeding instead of the wire placement, and they said it was pretty straightforward.
Hopefully all they find is ADH in there! Do keep us posted!
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Hey Gwen. Just caught up on your story. If you do end up needing the wire guided biopsy, it's not too bad. I had one in Dec last year. For me the hardest part was not eating anything from midnight on and having an afternoon surgery. Please keep us posted on when the surgery will be etc.
Mystic- Great news that nothing further was found!
I have my yearly diagnostic mammo tomorrow and I'm feeling positive about them not finding anything. Will keep you all posted.
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Good luck with your mammo tomorrow wonderwoman!! hoping benign pictures for you!
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Hello everyone, newbie here! I fully admit I did not read this entire thread, but skimmed the first few and last few pages (lots of good info, and this seems like such a supportive group). I figured I'd just jump in now and then get back to perusing the many pages. Clearly, I am not alone!
I received my ADH diagnosis yesterday.
A little background info: I am 39 years old, and went for my first mammogram ever a couple of weeks ago. I have some risk factors (BC on both sides of my family, but not following the traditional genetic pattern; early onset of menstruation), which is why my OBGYN ordered my first mammo a year earlier than usual.
Per the radiologist, my breasts are "very dense" with "a lot of stuff going on in there", and they called me back for a follow up mammo on the right (suspicious microcalcifications) and US on the left side (possible mass). They didn't like what they saw in the follow up, so I went back a couple days later for 3 CNB's. They didn't get the location of the mass quite right for one of the biopsies, but I already was at my limit for lidocaine, so I have to go back next week for yet another biopsy. Me = Human Pincushion! YAY!
So the results from the first three biopsies came back yesterday. The two from the left boob were benign (probably because they were taken in the wrong spot, duh!), but the right boob with the microcalcs has ADH. I had never heard of that until yesterday. Thanks to Google, I now know way more about it than I ever wanted to. So it's not technically pre-cancer, but it sort of is? Well, isn't that just a happy little grey area?!
I've been referred to a breast surgeon, who I will meet with after the results from next week's biopsy are back (just so we have all the information). It sounds like she will probably want to do an MRI and/or excisional biopsy or who knows what.
So I am in double-limbo land, waiting for one more biopsy PLUS now I have ADH. I am generally an optimistic person and I will take whatever life throws at me, but of course I am worried about all this. I never thought I'd be dealing with this sort of thing at my age (I am an otherwise very healthy person).
What should I expect from my meeting with the breast surgeon? What questions should I ask? What can I expect in terms of monitoring of my boobs from here on out?
Thanks for "listening"!
-emily
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Hi Emily,
Sorry you're going through all the waiting. I know how hard it can be! Seems like your Drs are pretty quick about getting results to you so that's good!
I'm only a year into my ADH diagnosis so I'm sure there are others who have more info but this is what I know. ADH increases the risk of developing Breast Cancer in the future. Drs seem to disagree on the statistics on exactly how much it increases the risk. Some say at our age (I'm 37) it's 10x than others, some say it's 1.5x higher. So it seems to me that they really just don't know.
What I think you can expect is quite possibly the Breast Surgeon to request an excisional biopsy which just means they will go in and do surgery to remove the area where your ADH is. Again numbers vary, but most will say there's a 20% chance there's some form of cancer surrounding the ADH. Mine showed other forms of atypia but no cancer.
How your Dr chooses to follow up again varies, but if you are determined to be very high risk, they may suggest you take Tamoxifen. And they will follow up with imaging (mammos, mir, ultrasound) every 6-12 months and will probably want to do an exam every 6-12 months as well.
Yes, it seems like a potentially never ending saga, but we all just do the best we can. Please keep us posted and ask any other questions you can think of.
Christiana
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Emily,
Sorry you find yourself here, however you will learn that all these ladies are pretty fantastic
In terms of what to ask your BS, you can discuss lumpectomy vs mastectomy (pending on size of your breasts, amount of lesions, etc); recovery time; recommended followups; genetic testing; recovery times; how sx will affect your day to day life (pending on your profession). I think that was about all I asked. Hope your next biopsy goes well and that results are benign!Wonderwoman, how did you mammo go?
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mystic- I missed your previous good luck post. Thanks! They said everything was all clear so I'll go back in a year for another. I know it's good news and I am happy about it but there's a teeny little voice in the back of my mind that is still worried. I told my husband that I know it sounds absolutely crazy, especially considering I may never get cancer but I still have a bit of anxiety about it all. It's much less than a year ago so I'm hoping with more time it will just go away completely.
What's your follow up plan?
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I know what you mean womderoman!! I have that little voice as well.
I will be getting a mammo in ~3 months and then yearly checks. I'm a little worried about my other breast now (AHD lesion was on the right side). Since I met with the BS I pointed out a little mass just behind the nipple, it was very small, but she could feel it too. It did not show up on ultrasound some months ago and did not show up on my pre-surg MRI either. But it's growing and has become a lot easier to find on palpation. I am trying to ignore it and wait until the mammo.. maybe it's just my brain going bonkers because of everything that just happened.
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I have very lumpy boobs so I often find things I wonder about. However none of them have gotten bigger (that I can tell anyway). If yours doesn't shrink as well you could always ask your BS to do a core needle biopsy or fine needle aspiration.
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Yeah, that's what I'm planning on. I may go ahead and ultrasound it myself at work next weekend just because.
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wonderwoman and mystic, thanks so much for the information and support! I am sorry we find ourselves here, but at least we're not alone in our journeys.
wonderwoman, I'm glad your mammo went well! Hooray for being off the hook for a whole year!
mystic, I hope your new lump turns out to be nothing, but I understand your concern given that it's growing. It is convenient that you can do an ultrasound on yourself though!
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haha! I don't know if I would say it's convenient or if it just encourages my habits of being overly nutty!!
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I had focally severe ADH and a lesser extent of ALH in the other breast which led to excisional biopsies. The ADH was diagnosed after micro calcifications were seen on my yearly mammo. Even though I have no family history of breast cancer or any mutational gene, my surgeon insists on yearly MRI's w contrast on top of my yearly mammo. Every six months i see him for a breast exam and he then gives me the prescriptions for my mammo and mri for six months later. I am 59 now so I've been doing this for 8 eight years. I now worry about all this contrast I'm getting since new research shows it builds up in your brain. My surgeon claims MRI is warranted since my Gail assessment puts me at 1 and 3 chance of getting breast cancer.and gets rather angry when I suggest maybe I don't need the MRI anymore since all's been clear. Don't know why he feels of getting breast cancer is so high .I . I did have children and started my period at average age of 13. The only thing is the ADH and going into menopause rather late at age 57 . Do ANY of you ladies get yearly MRI's also?
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I've been getting MRI's on alternate years-- mammo every fall, and then US or MRI every other spring. I'd be interested to know how your dr calculated your 1 in 3 chance of a BC dx. I've been told my risk is somewhere between 20-25%. But perhaps the reason he is unwilling to discontinue the MRI is that each year our risk continues to rise, so sadly, having been clear for 8 years in no way guarantees you're out of the woods
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Pattimay, The plan for me is yearly MRIs, some years I will actually need two of them as I have an unrelated pituitary mass that needs to be monitored. We know the contrast material can stay in all our organs, and since advanced imaging is fairly new to medicine, we do not have enough information to do retrospective studies and see if it can cause true damage.
What I can say though, is that if you are not 100% comfortable with your dr and his recommendations, it is in your best interest to get a second opinion.
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Thank's for the replies ladies. My surgeon is well regarded in my area . After my diagnosis he took all the time I needed to answer all my questions and made me feel like I was in good hands. His staff is great and he is known for his compassion . I get a big hug every time I see him. I asked him with last visit what he's basing my high risk on. He said everything about my breast history. All my biopsies, my age at menopause. etc. Now he also mentioned the severity of my ADH. It was sent out for another opinion but it did not warrant a diagnosis of DCIS. I read that the new research shows the number of foci makes no difference in risk factor. So just because mine was focally severe doesn't make me at higher risk than just having one foci. At least that's the current thinking of the day. My surgeon said it did matter. Like you said momoski he also reminded me that the odds go up as we age and not down. I knew he used some assessment he mentioned so I googled and found the Gail breast Cancer Rsk Assessment .I think the other assessments don't even have a check off for ADH/ALH I did the questions and it did put me at a 26% I think risk. But can't figure out how that's 1 out of 3. I also live on Long Island in New York which that alone puts me at higher risk. I got six more months to decide if I'll go ahead with the MRI or not and then have to face my surgeon telling me that he's making sure he's doing all he could for my breast health and i'm always questioning. Like I said he feels like an old friend and very warm person so it's just slight irritation on his part and makes me feel guilty.
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Patti May, when your ADH is classified as focally severe, I believe this refers to the histology, not the number of foci. ADH and DCIS run along a continuum and distinguishing between them can be tricky and often rather subjective, so a focally severe ADH lesion would be one that borders on meeting the criteria of DCIS. (I am pretty sure of this-- perhaps someone can chime in and confirm this?). If you had more than one focus of ADH, that would be multi focal.
FWIW, when I was dx'ed I got 3 opinions from 3 different hospitals on my pathology from the needle biopsy: the first said dcis, the second classified it as ADH bordering on DCIS (in other words, severe ADH) and the third said just ADH. Both the oncologist and the breast surgeon I saw (and continue to see) said it didn't make a difference from a prognostic point of view. It was only one tiny focus
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Thank you so much Momo for that information. I googled and could never find in search "focally severe ADH" and assumed it was the number of foci. I found this also
- If cellular changes of low grade DCIS occupy two or more duct spaces, or more than 2 mm, this should be reported as low grade DCIS. If less extensive, the lesion called as ADH
- I dug out my biopsy report from 2009. It read: The specimen shows a spectrum of changes from flat epithelial atypic through atypical ductal hyperplasia, focally severe. the focus of atypical ductal hyperplasia with severe atypic is present 0.8cm from the medial margin and greater than 1cm from the blue inked lateral margin. Then the second opinion was sent to Beth Israel of Boston. They cytologic and architectural changes are not felt to be severe enough to warrant a definitive diagnosis of DCIS. Foci of ADH are 0.8cm from the medial margin and 1.0cm from the lateral margin.
- So I'm not great with math but isn't this greater then 2mm or am I not understanding again?
- I also want to add that six months later after a followup MRI my Birads came back as a 4 again.MRI read there remains an abnormal region of enhancement 3.2 x 1.4 x 2.3cm. So I needed another this time non excision biopsy. It came back as columnar cell change with atypia. The surgeon said at that point that he would not and could not do surgery again since my breasts are small and he had to take so much tissue out the first time.
- Now my questions is if I had a second and third opinion agreement might have been DCIS. Which would have been radiation and put me at higher risk. Maybe because I was in this gray area he is treating me like I did have DCIS. But generally do ladies diagnosed with DCIS require yearly MRI's?
- I imagine it's better to just go for the MRI than worry that the mammo missed something at this point. I'll just remember to take 1/2 of Xanax before. lol
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hello ladies I’m new to this forum, I was dx with adh after a core biopsy a few weeks ago, with this I made an appointment with breast surgeon to talk about the further surgery and was told I need an mri first. Ok so now I went for mri and got s call very fast from radiologist stating there are areas that lit up on mri! I’m petrified now as I was told 3 spots in including my right breast now ugh are a concern...so I now have to get a bilateral guided mri biopsy before the surgery. I thought I would pass out after hearing this..I’m hoping that it’s b9 I have never bee more petrified the wait is the scariest part of this entire process.. fingers crossed
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Myc, I'm sorry you find yourself here. It's a good idea to sample all areas prior to surgery justice in case more masses have to be surgically removed. You don't want to go under anesthesia for something and have to go back again within a few months. Hopefully the results are benign and you don't be have to worry about anything else though!! Remember about 80% of masses are benign. Did they give you a BIRADS score?
Do you have a date for your new biopsies
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At 26 in 2013 I had a lumpectomy.. I was diagnosed with PASH disease UDH/ADH, Fibroadenoma and I've always had polycystic breast disease. I was told to come back every six months for mammogram and ultrasound because I also had a tumor in my left breast but I could never feel it. Well five years later almost I am just now trying to get in for mammogram and ultrasound again. The tumor has grown so big I can feel it with 4 fingers together and I feel a burning sensation in the area along with rib pain as it is under my breast tissue on my left breast. I'm 31 years old. I’m so afraid that this tumor that has grown so big is not good... 😞 I wanna puke my nerves are so bad.
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Never,
I'm sorry you are going through this. We know those feelings all too well. Do you have a date yet for the imaging?
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In Sept. '17, my mammogram showed a 3mm area 3mm with 3 small microcalcifications clustered in my left breast. I underwent a 3D mammogram and a biopsy of the area was needed for further evaluation. I received my biopsy results today and I was told I have ADH with fibrocystic changes. My gyno and the doctor who performed the biopsy stressed that I didn't have cancer. But I am confused. If I don't have cancer, then why was I referred to a BS for a lumpectomy? Could there be cancer in the cells around the ADH ones, so more testing is needed? It was such an odd conversation since I was expecting a definitive benign or not benign result. Tomorrow, I'm going to schedule my consult with the BS and see where that takes me. Anyone have any advice? I have been reading in the ADH Club and have noted several people had MRIs before the lumpectomy. I'm wondering if I should also ask for one. Thanks!
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