ADH Club
Comments
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Momo
I feel your anxiety . My Mammo is 10/23. I don't even want to make any plans beyond that feeling almost certain that I'll be needing more surgery.
Anyone else feel this way, not able to think beyond the date if the next screening? It's just a crippling feeling
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Ddw-- I know exactly what you mean. I feel like I live my life in these 6 month chunks and am always hesitant to make plans for events directly afterwards. I'm always thinking "what if"? Friends and family tell me I am overreacting. I am about to take an exciting trip with my husband and son and will do my very best to enjoy myself, but in the back of my mind, the dreaded mammo will be looming. It's kind of hard to imagine this routine going on for the rest of my life, but I try to take it only 6 months at a time. Very difficult. I've been doing this now for nearly 5 years and I'm not sure if it has gotten much easier.
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I know exactly what you mean, my mammo appt is coming up this week and I have tried to keep it far out of my mind until now. But now that increasing dread is starting to take over. Just thankful I am on this ADH thread and not the others, keep remembering that.
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It's infuriating, isn't it? I still waver between thinking maybe I overreact before each 6 month check, and then thinking that I cannot imagine anyone in our situation NOT feeling very anxious. Sometimes I feel fairly confident that I will be ok in the long run -- other times I am convinced it is just a matter of time before cancer is found. Ugh!
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So glad I found you ladies . I woke up this am in a depressed panic . Not all about this but some to say the least. Coming Oct 23rd will be my first post surgery screening Mammo. I can't imagine going on this way indefinitely.
I am also being told that this is an overreaction but from what I see here, it's not and in fact like Momo said , who would not react this way.
For me I'm sad to say, thee situation is even more desperate. I have already got three serious and life threatening autoimmune dxes including type 1 Disbetes since age 60. I take insulin 24/7. All of the surgeries and treatments for BC will kill me with Diabetes and chronic pancreatitis for sure. My Oncologist told me that I could not take any prophylactic meds at this point due to these other comorbidities. I'm really scared and for anyone to tell me that I'm overreacting I'd like to see if they could do any better living one hour in my shoes.
Rant is over. It's good to vent and I'm glad we are listening to each other.
I should be getting results from expanded genetic testing in a few weeks . Somehow at 63 I don't think so but... With my ill luck, could be. Every woman in my family either diagnosed or died of ovarian or BC. Makes me pretty sad.
I sure know how you feel
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I know exactly what you are feeling, it's horrible on the mind. Today I had my excisional biopsy/lumpectomy , the actual procedure was not bad at all.The Dr went in through the areola so minimal scar. He told my husband he got it all out. Now I wait dr said before or by thursday I should know something. So many emotions they are overwhelming. I can't remember the last time I was so scared.
Does anyone here have breast implants or know someone who does and is going through this too?
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Glad this part is over for you, mine was the same. Not bad afterwards and went in around the areola. I went back to work the very next day and I made dinner for my DH the day of surgery. I waited two days and surgeon called telling me ADH.
Keep us posted. None of this is positive frankly but it's good to have the biopsy behind you
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Hi everyone
I got my results today, completely b9 no adh no dcis. Waiting to speak with my ysurgeon for further instructions. Thank all of you for your support.
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Now I don't know where to go from here. My core biopsy had 2 micro foci (adh)smaller than a mm. The radiologist said nothing found completely b9. My question is do I still have to take meds or do I just wait and see? I know momoschki had a similar situation. I'm waiting for the actual report. A little confused again. Do I need a second opinion?
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Intetesting Tinkerbell. I showed same ADH I think one focus ( whatever that means) and they insisted on excisional biopsy for further dx purposes. Post biopsy I saw two Oncologists about meds . Each had had completely different views on follow up in my situation which is different than yours. Were I not already so sick I'm pretty sure I would have at least tried the meds. They must be very sure about dx and pathology if not recommending further exploration. I also obtained a second pathology opinion which, in fact , turned out to be same as the firs
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did you have adh on excisional biopsy too? I had the 2 micro foci on core biopsy only, don't know if the term focus is the same as foci.
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Haven't spoken to my Dr. I actually have a better relationship with my radiologist, he gave me the results he said the foci was so micro that he was expecting me to be b9. I guess I have to see what Dr says but they work close together.
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Yes, Tinkerbell, my situation exactly. Excisional biopsy came back totally clean. Stereotactic needle biopsy showed ADH in 2/8 samples. I was told that this amount was "exquisitely small." I would recommend you get a second opinion just because this is very hazy territory.
I consulted with 3 oncs, all of whom were fairly noncommittal about whether or not to take preventive meds, I obsessed about it for nearly 4 years and ultimately decided to take Evista last November. I was told that without it, my chances of developing BC over the next 10 years were approx 17%-- with it, 8-ish. Since I have osteopenia anyway (oh joy!), I decided to go with the Evista. It possibly makes hot flashes a it worse, but I had them before, so who knows?
I decided to continue to see an integrative one who had me on a bunch of supplements. I exercise more, lost 30 lbs, cut down on the alcohol, and cleaned up my diet. I'm keeping my fingers crossed
(Oh, and foci is just the plural of focus, btw)
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Well, I wish I had good news too. Went for my mammo appt today and by all signs the mammogram came back clear. During my exam I told my doc that I had been feeling something in my left breast and she felt it as well. So it was on to ultrasound from there. After ultrasound I got put in the "pretty room" which made me nervous since I had never went there before. Doc comes in and says she wants to do a core biopsy of the area and can I come back this afternoon. Now I am even more nervous since she wanted to do it so soon.
Leaving here in about an hour to drive an hour back to the center so wish me luck. Hate hate hate this!!
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Thanks I'm still waiting to speak to my Dr. To see what his plan is. I guess the results are good but back to the grey area. Breasts are complicated. Good uck mvspaulding praying for you. Hopefully it's nothing..
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Ugh, mvspaulding-- no one likes the pretty room! Wishing you all the best and hope you get good news quickly. Let us know what happens..
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Sounds to me like we are all in a similar boat. I also showed ADH on excisional biopsy as well as stereotactic. One Onc said take drugs and one said no drugs. I know I'm a " sitting duck" for cancer. Already dreading follow up Mammogram next month.
Hoping you get some clarity ladies
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It sounds good that excisional showed nothing. I think I'd feel pretty content with that. Good for you. Not so lucky here.ADh all around
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Keep us posted mvspaulding if it helps any I'm feeling your anxiety right now for you. My test were all done on the same day to by the time i got to the core needle part I broke down and cried. I had been there so many hours, mammograms, ultrasound s and then biopsy. They put a rush on it and I got my results the next day. Maybe they can do the same for you.
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dw79 sorry you were adh all the way but I don't know if it really matters as I already know I had adh no matter how micro it was. So like I said this whole breast situation is complicated. My husband and family are all happy and planning a celebration they don't understand it's not blk and wht.
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You know Tinkerbell that is exactly the experience I had with family and friends. They were celebrating for me that I didn't have cancer. They simply do not understand the dangers and serious potential here.
My doc told me that excisional biopsy pointed to " strong " ADH. This didn't sound good to mr
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Yes, this is exactly the problem that most people do not understand: technically, you have a benign result, which is clearly good news. But on the other hand, most people do not really grasp the ongoing, increasing threat over a lifetime, the dread and anxiety that go along with the frequent checks, and, (in my case, anyway), the hypervigilance over all things medical.
FWIW, I had my biopsy slides analyzed by 3 difference pathologists at 3 separate hospitals and came out with 3 differing diadnoses. First was DCIS, second was "borderline" ADH-DCIS, and third was pure ADH. Prognostically, every doctor I have asked has said it makes no difference, so I wouldn't read too much into the label of "strong" ADH.
On another note, just received some very shocking news. Seems that the oncologist I have been seeing for 4+ years has suddenly been killed in a car accident. I'm reeling. Life can be so random.
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Wow Momo shocking and sad. Wishing you the best. Now you have to locate another Onc? That's tough as we all know.
Yeah I had no idea what she meant by telling me that about " strong ADH." It's all a sad and scary bummer and for me, in the constant foreground is type 1 insulin dependent Diabetes which socket it to me at 60 just two years before this " f--k." Anything else I can surely handle? Angry and sad sometimes .
Thanks for letting me vent. So sooty about your Doc
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Momoschki did you have your core needle biopsy tissue examined 3 times?
Wow that is terrible what's happened to your onc. Feeling bad for you also...
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Thanks for all the good wishes everyone. I am just praying this will be nothing more than ADH or fibroadenoma like in the past. I can't believe I had to go back, and on top of it had my boob squished again in the mammo machine after the core biopsy. I am going to be one sore puppy tomorrow I have a feeling. Results won't come til Friday at the earliest so I will just try to keep it out of my mind until then. Does anyone else feel like they can't freak out and worry just so your kids and family won't worry? Like you have to act like its not a big deal for them?
That is terrible about your oncologist Momoschki! You just never know do you?
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Tinkerbell, yes-- needle biopsy slides were analyzed 3 times at 3 different major NYC hospitals.
I admit I'm freaked out by what happened to my doctor. All I know is that he was somehow involved in a car accident. I have no idea who else to see now.
Waiting for biopsy results totally sucks. I am really bad at it. Mvspaulding-- hope you get thru the next couple of days as painlessly as possible and wishing you good results
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well it's not looking good for me ladies and looks like I might be leaving your group. I waited all day for my BS to call and she said it may be late but that she would call me either way. It got to be 7:30 and we were going to go to dinner when the phone rang. It was her and she said that the pathologist called and it wasn't complete because he wanted to run a couple more stains but he was pretty positive we had problems in that area. She wants me to come in on Monday to discuss options and wanted to know my schedule for getting an MRI ASAP. I'm so upset and numb now I am not even sure what to think or do. I'm not going to say anything to my kids or family until I know for sure. I know this is totally the wrong thing to do but got a little drunk at dinner
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I've been bleeding from the right nipple since July 12th. I've had a diagnostic mammogram and ultrasound - they say some micro-calcs, which they tell me they probably wouldn't worry about if it weren't for the bleeding. I have very dense breast tissue, which only complicates everything. I was surprised when the tech told me the doctor wanted more pictures of the left breast. As it turned out, there was a 2 cm spot in the left breast and, after additional pictures, there is a 6 mm spot on the right.
The radiologist decided a bilateral biopsy was needed, so I returned a couple days later. Because the blood vessels were so close to the microcalcs in the right breast, they could only biopsy the left. ADH was the diagnosis; precancer I'm told.
Next step, MRI. In order to get that MRI, my doctor had to argue with my insurance company. That slowed the process down, but he was successful. I went for an MRI with contrast which showed three suspicious areas. One, upon further review, the radiologist decided was a healthy lymph node, but the other two needed to be biopsied. These were two spots that did not show in the mammogram or ultrasound. The MRI guided biopsy revealed ALH and an atypical papilloma. And they resulted in a large hematoma.
I am now waiting to undergo excisional biopsies (I guess-I keep thinking of it as lumpectomies). I will have to have four localization wires placed (one in left and three in the right). The surgeon tells me he needs to remove tissue from the three already identified spots, as well as the micro-calcs that could not be biopsied during the first biopsy. He will also remove the bleeding duct from the right breast.
I keep thinking that I don't really have a breast cancer diagnosis, but it feels like I do. The second radiologist informed me that, at the very least, I would need an MRI every year because the two diagnosis on the right did not show up on the mammogram. I'm ready for the double mastectomy just so I don't have to wonder all the time if it's going to be cancer. Not sure how this next surgery will turn out, but I'm anxious to get a definitive diagnosis.
Thanks for listening.
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mvspsulding hang in there, think positive I know it's easier said then down. It could turn out to be ADH again. I will be praying for you. I go back Wed. Post op. I guess I'll meet the onc and discuss my options. I want a second opinion on my slides, but I don't know how to go about it. My husband is telling me to leave it alone. This is very difficult. It's said God will not give you more than you can handle I just wish he didn't trust me so much.
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Grandma I feel your anxiety I hope things turn out good for. Lord knows we all like to here good news. Sending you lots of prayers..
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