Just diagnosed with Atypical Ductal Hyperplasia (ADH)
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I did ask the high-risk nurse what the downfalls would be of getting MRIs. She said that some people are sensitive to the contrast agent, which I interpreted as some people having bad reactions from the gadolinium. (She also said more follow-ups and 30% false positives upon biopsy were downfalls.) I haven't read up on gadolinium yet, though.
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momoschki - your situation, I think, is another example of the specialists letting us decide and not being pushy about anything. I see how it's good - it's our body and our risk. But I feel like it also means it's up to us to do our own research.
Although maybe it's just a liability thing - if we make the decisions, we can only sue ourselves...
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Here’s a pretty comprehensive article about the gadolinium issue:
https://www.itnonline.com/article/debate-over-gadolinium-mri-contrast-toxicity
I posted about this controversy on these boards a while ago, as I was wondering how others designated high risk we’re dealing with the MRI question, but didn’t get much of a response.
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Meet with the surgeon today. Got a little nervous when he starts with "You have backed us into corner here." Oh and the best "You are an oddity." Lol. I always knew that though 😁
My hyperplasia is not atypical but I have (forgive me I can't remember all the names) all these other diagnoses that by themselves would be nothing to worry about but together they don't ever see & are a little concerned.
We discussed my options & I have choose to have more tissue tested. You can only see the masses from the top view so we have to find a radiologist skilled enough to put the wire in.
I am terrified of the wire part do not want to be awake for that. Right now I am still very bruised from my biopsy a week and a half ago so have to wait for bruising to subside before we can do the surgery.
Anyone who could relate to this with advice would be great. I am honestly the most ok with this that I have been since this whole thing started 3 weeks ago. My surgeon was very nice & had a great sense of humor & personality which helps.
My only concern is I have gone from a 90% chance of it is benign when they told me I needed a biopsy to 60%.
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jbaker12. I have had MANY things show up in excisions! There are a lot of different benign things and it always amazes me! Do you have any of the names?
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mammalou
I thought I would remember them but of course I don't. Acute something and I know for sure some that started with an "S" that one they seemed most concerned about. There were about 6 other things on there to. I am going to call and get my pathology report tomorrow.
I feel bad worrying about this when the nodules themselves are benign. The unknown is killing me and now I am a special case makes it even worse. A simple mammogram turned into something I never could of imagined. I appreciate everyone's words of encouragement. I know most of you have been through so much worse.
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You shouldn’t feel bad for worrying about any of this! Any and all of this Is stressful!
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Jlbaker12 - I had a radioactive seed instead of a wire, but I thought the overall process was quite similar to the steriotactic (needle?) biopsy. And actually, the radiologist who did the radioactive seed was super-slow with every needle, and I felt nothing - not even the lidocaine (I was scared he didn't even numb it!).
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Jlbaker12 - I also wanted to mention that I followed the surgery boards for lumpectomy/mastectomy back when I was having my excisional biopsy - there's a lot of overlap in surgery concerns:
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Hi all..I also had the radioactive seeds placed... before I had the lumpectomy and it wasnt painful at all..This is the newer way they now do it..[ at least in New York City] then during the lumpectomy The surgeon removes them.. I also was dx with ADH..I really just wanted to have a mastectomy..so my breast would be equal.& NOT HAVE TO WORRY SO MUCH ABOUT CANCER IN MY "GOOD BREAST" NOT..!!!.but surgeon refused to do it.. Now I developed a SEROMA which is big & painful..in the area of the 2 incisions that I had..Next I will need another US to have it drained out..Its fluid that can come after a lumpectomy..go figure?? its a never ending saga..as far as I am concerned.. as GILDA RADNER SAID.." IT'S ALWAYS SOMETHING" GOOD LUCK LADIES
~HOPE0 -
I also just got diagnosed with ADH in my “good" right breast. Had a left mastectomy in 2011. I feel like it's inevitable that I get cancer in this breast.
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Yes, the high risk nurse said 40% of getting breast cancer over lifetime, so I feel like I'm just waiting around for it until it actually comes. I've been reading a lot of signatures to see what everyone goes through - it looks like things like tamoxifen and mastectomies help decrease the short-term chances of cancer or recurrence (5-10 year), but that none of these actually impact long term survival. Which makes me feel like BC is so completely random compared to other cancers. And that once it comes, you start a game of "whack-a-mole" - spot a cancer/surgery/treatment, spot another cancer/surgery/treatment...
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HI MAMMA DONT U THINK OUR SURGEONS SHOULD RID US OF ALL OF OUR WORRIES BY JUST DOING A PROFALATIC WRONG SPELLING..!! MASTECTOMY..?? I WANTED IT SO BADLY.. I AM SO UNEVEN NOW.. MY IMPLANT IS PERFECT AND WHERE IT SHOULD BE..BUT NOW MY RIGHT BREAST IS EVEN SMALLER AFTER THE LUMPECTOMY & HANGS DOWN SO DAM LOW....ITS AN UGLY SITE..BUT I USE A PROSTHETIC INSIDE MY BRA.. SOLVES THE UGLY ISSUE IN CLOTHES.. BUT DOESNT SOLVE MY WORRIES..AS I AM ONLY GETTING OLDER..
AND I KNOW SURGERIES ARE HARDER TO RECOUP FROM AS WE AGE.. WHAT ARE YOUR THOUGHTS ON THIS..??? ~HOPE0 -
hi hopedreams....my oncologist actually told me I could get a mastectomy. I’ve had 11 surgeries in the last 8 years, so right now, I don’t want to think about a mastectomy and more reconstruction. My surgeon did a really good job on this lumpectomy. The incision has opened up a little but she didn’t around my nipple so the scar is a little camouflaged. My two breasts aren’t quite the same. I don’t like looking at it myself, but in clothing, it’s ok. I had a lot of skin damage from radiation, so I had a lot if issues getting the best results out of reconstruction. I’ve had fat grafting at least3 times to fill a hollow spot, but it never takes.
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HI MAMMA..WELL I TOTALLY UNDERSTAND WHY U DONT WANT TO DEAL WITH ANOTHER MASTECTOMY. I KNOW THE RADS CAN DO A LOT OF DAMAGE TO YOUR SKIN....I ALSO HAD MANY DIFFERENT SURGERIES SINCE THE BREAST IN 2011.. WITH 4 NON RELATED CANCERS.. SOME OF THEM CAME BEFORE THE B/C OTHERS CAME SINCE..AND LIKE I SAID.. GETTING OLDER DOESNT HELP WITH SURGERIES..TAKE GOOD CARE OF U...HUGS ~HOPE GUESS I GOT LUCKY WITH MY IMPLANT..NO COMPLICATIONS AT ALL.
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Hi all. I was just diagnosed with ADH and ALH in my left breast. Having a seed placed Thursday and then a lumpectomy on Monday. I have a nervous pit in my stomach. I also would just rather "take them off". I have a strong family hx of BC on both maternal and fraternal sides. I always felt like it was "when" not "if" I get BC. I am thrilled to have caught this in the pre-BC phase. Feel like I am just waiting for the next ball to drop. I had a feeling something was going on and then this year they said to start MRIs due to my family history - TaDa! There was the cells. I worry it could be in other places just waiting (and hiding). It was hard to see due to my dense breasts. I had to do the biopsy with MRI because the US one failed as they could not reproduce the lesion.
I keep reminding myself that I caught it as early as possible and that's so good. Yet, I feel like I just started a roller coaster - hate roller coasters!
This site is great and glad we all have a place to support one another.
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Hi Candy70 - sorry for the diagnosis. I assume you'll meet with an oncologist after they get the pathology on the lumpectomy. I found it oddly empowering how decisive I felt throughout this process - I was ready to make decisions, and make them swiftly. The roller coaster of the future is a pain, though.
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Thank you so much for sharing that - and everyone else, too. Like JoE777 and you all, just want to learn as much as I can.
Wishing you all the best.
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Muffkin78 - I was diagnosed with ALH in Oct, excisional biopsy in Nov and decided not to take any hormonal therapy. I am 52, hysterectomy and not sure I am menopausal (but probabl)y... I didn't like the idea of stopping all estrogen. I also am worried about MRI with contrast and am supposed to get a MRI in April. I also think that managing the after is also worrisome.
Thanks Momoschki for the gadolinium articles, I will definitely read them. Dr. Paul Anderson, integrative oncologist, stated something about milk thistle and glutathione as mitigation strategies on a few podcast (the stern method).. BUT not sure of the exact protocols.. he suggest a few weeks out start working on mitigation strategies as well as after the MRI.. I am really torn on whether to have the MRI or not... so scared of a reaction or toxicity.
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Hi Candy70:
Saw this thread and really glad you caught this early!!
The following is my personal experience with a fibroadenoma diagnosis and also just my opinions.
Early detection with mammography failed me in 2016 as I had dense breasts and a presumed "fibroadenoma" per ultrasound (my request) where no biopsy was recommended at the time. I went another year for that "yearly mammogram" and still nothing showed up. My doctor didn't feel the need to order another ultrasound the next year and told me that clinical exam felt normal. (I should have pushed for another ultrasound. I just didn't know...) My bouncy lumpy fibroadenoma changed one day to a rock hard lump five months after my last "normal" mammogram. During my biopsy, finally, when I knew in my heart it had to be cancer, the Radiologist kind of mumbled on her way out the door that "maybe we should have biopsied that last time."(14 months earlier) The worst thing to hear while on the table facing a cancer diagnosis.
Needless to say, if I could turn back time, I would have gone your route so great job on being proactive!!!! Personally, I would have also gotten a risk reduction BMX surgery back then, with no hesitation. My dense breasts were a hassle all my life and I always wondered if those lumps would turn out to be a problem. Sure enough, they were ticking time bombs.
Now, I have to live with worrying about a recurrence. Not fun.
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Just diagnosed with ADH after a lumpectomy and papilloma lesion/radial scar found in my left breast. No other follow-up except another mammogram in 6 months, which I'm excited about but man...being told everything's benign and good after the core needle biopsy, then being told this after surgery is like COME ON. Still, way better than the alternative, so I'll just try and forget about it for the next 6 months and be vigilant about any changes that might happen in either breast
Is it normal to not have any follow-up with the surgeon or an oncologist? I've seen a few people that said they were able to meet with someone and talk more extensively about ADH and its implications. I was told about it by the surgeon over the phone, and she just said, "Cool, we'll keep an eye on you and see you in a few months!"
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SarBar22 - hope your feeling well. I have my LX scheduled for Monday and then a post op appointment a week later. I know he plans on placing me on Tomaxifen. I’m also thinking about getting a consult from an oncologist. I ha e a strong family history of BC - everyone gets it. If I were you and for peace of mind, consider a consult with a specialist.
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SarBar22 - they merged my "high risk" appointment with my post-op check-up (to make sure the sutures were fine), and that was with a nurse (not an oncologist or the surgeon). That nurse discussed the MRI and lifestyle changes. They said I only had to see the oncologist if I was seriously considering tamoxifen, which now I'm not so sure about - I think the tamoxifen only reduces the 5-year or 10-year risk, which was only 4.6% for me. It's the 40% lifetime risk I wish I could decrease...
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SarBar I did not have any follow-up with the BS after ALH excisional biopsy back when I had it (other than to check in to make sure I was healing okay).
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Muffkin78 - have you considered the low doseTamoxifen? Also, if you continue annual breast MRIs you may get good surveillance that way.
Ps- how did you get adh in your tag line?
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mammalou - I asked the high risk nurse about the 5 mg/day dose of tamoxifen, and she said that she thought the oncologist would prescribe 20 mg/day but that she didn't know for sure. My oncology appointment to talk about tamoxifen isn't for another two weeks - I had tried to contact the oncologist and see if 5 mg/day is an option before wasting my time at the appointment, but she merely sent back a polite reply saying she'd see me on the 26th. So I'm not sure if I should keep the appointment and see what she says, or cancel it now. Additionally, my mom had uterine cancer and I'm not sure if they wouldn't prescribe tamoxifen as a preventative because of that. I guess I'll have to pay my co-pay and take 2 hours off work to find out. :-(
Oh - and I went to "Settings" and edited my "Signature" to get ADH there.
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OarsUp - sending you good vibes for Monday!
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Muffkin78. I get it. I also travel 2 hrs each way. It’s a pain. I think you should keep the appointment. I’ve had breast cancer and I already did 5 years of Tamoxifen and it is doable. I would be especially interested in a lower dose. I understand the uterine issues as I’ve had several biopsies. It’s worth a listen!0
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Muffkin78 - thanks! I am ready. Althought I think I am goign to fire my PCP. They often miss the boat on important things. This morning, they promised me that they would send my clearance file to the BS. Got a call at 3pm from BS office that they had not received it and the PCP office was closed.Ugh! Long story short - after paging the on-call, we got it. So I am ready.
PS - changed my name from Candy70. Oars Up - I am going with the flow (and some fight)!
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