ADH Club
Comments
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Barteeellis,
I'm so sorry you're going through this again. Did they find this in the tissue they removed during your reconstruction?
I believe it's important to become informed about everything happening. Atypical ductal hyperplasia (ADH) and atypical lobular hyperplasia (ALH), according to my surgeon, is considered precancer.
I've done a lot of reading; it's the only way to know what is going on with my body. You need to arm yourself with information and questions; when you se your oncologist/surgeon you will be better able to weigh all the options they give you.
As far as how to proceed, every person is different. Information is power. I can only be responsible for the decisions about my body. Those decisions might not be right for everyone.
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Yes precancer is what I was told too
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yes, it was found in the tissue removed from the reduction and revision of scar tissue. I know I am at risk because I have HAD bc 8 years ago but I have been on all the treatments. I just am starting to heal from the reduction/revision and it is hard to think of Masectomys now, but I think I will have to see what oncologist says.
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I think that's a good decision, just make sure you are armed with all the questions you think of while you are waiting to see the ONC. Let them give you the options and then ask about anything they didn't mention. My ONC was good about discussing any questions I had and listening to my concerns. In the end, we made a decision he didn't originally suggest. But he agrees with our decision and even said that would be what he would want his own wife to do. Always ask lots of questions.
Good luck and keep us posted.
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so discouraging about the meds .
I understand how you feel
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Hi everyone
I took a little vacation from adh. As to adh I was told it was not precancer but a marker for cancer dcis stage 0 is considered precancer.
Barteeellis I agree ask a lot of questions and see all your options. Sorry you are going through this again but glad they didn't find cancer.
linpiz glad to see you found us. I joined this club because I wanted to here from real women who could relate to all the different anxiety and emotions I was (am) feeling. To hear from other women diagnosed with adh and discuss adh with someone that actually knows and understands what I'm talking about.Everyone is different with their own personal risk. The last thing we want is to scare you and yes adh may never become cancer but It can and that's why we are closely watched . If you feel good with waiting and watching then that's what works for you. I also chose that option for right now and I feel good. I still have anxiety but it has gotten better. Am I nervous about my 6 month checkup Yes of course but I can now put it in the back of my mind and go back to my life before adh. I think once you have a plan it gets easier. My mo and gyn agree my benefits do not out weigh my risk at this point so I'm holding of on tomaxifen and praying we are all right.
Ddw still praying everything goes good for you. I understand your anxiety you have a little more going on but remember positive thoughts 😊
Grandma glad you made your decision, peace of mind is priceless.
(((((((HUGS))))) for all
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Tinkerbell
You are so kind and nice .
Thanks for your support and clarification. Next week for me. It looms large of course
Good thoughts to all here
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Thank you, Tinkerbell 4.
Sometimes it just helps to have a place to say, "This is how I feel." This is a place where everyone has some knowledge of what each of us is going through. Many times we don't need anyone to actually give us advice, but simply to listen.
That is what makes this forum valuable.
:-)
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Ddw, I'm right alongside you. Monday mammo for me. Trying to stay calm. Trying to breathe
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It's so nerve wracking Momo
Hugs and health. I hope it doesn't get either of us. And prayer
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Yes, sadly I know just what you mean... the closer I get to the big day, the more distracted and anxious I feel. Big time insomnia.
Wishing you the best-- keep us all posted
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Good luck Momo and ddw I'm praying for all and feeling your anxiety.I will be holding your hands through cyber space 😊 Yes grandma sometimes you just want someone to listen. That's why we're here love, support, advice and to just listen.
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I wish there was a " like" button for your posts Tinkerbell
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Feeling a little down today, I'm going to see another onc for a second opinion on meds. What happened to mvspaulding is weighing heavy on me. I can't help to think if I'm doing the right thing. I wish we had a crystal ball ( lol) ughhh!!!! This is so frustrating
... One day happy another day worried .....0 -
Yes that weighed heavily on me too. Then there was someone else on here that received both monitoring and meds for seven years and just got bc anyway . Nothing is predictive for an individual . I know the ups and downs of this emotional
Rollercoaster. Happy one minute, worried the next . I'm definitely resisting med issue with second Oncologist after next Friday's Mammogram. I think you are doing the best you ca
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Thanks ddw I just hope it gets better with time. I guess it's a roll of the dice. I understand the meds only work for a certain time period not a lifetime. Thats why they are now recommending it for 10 years.
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Yes my oncologist said it was not precancer, it was a marker for a higher risk. But since I already had invasive BC 8 years ago and had treatments including aromas in for 7 years that I should not worry about this. He said I should be glad with all the tissue removed almost 2 lbs that he was happy no cancer or DCIS was found. So for now he suggested I go back on Aromasin if I can tolerate just to relieve my anxiety. But the real issue he said and I have known for 8 years and have lived with it is if the original BC comes back at that point it is a game changer. He ska I have more than likely always had this atypical hyperplasia and that is why I got it in the 1st place. I do not have the BRAC gene and no one I know ever had BC from my family. So no PMX for me and just go on living. PMX doesn't help survival rates if you have had BC. And stay as vigilant as before with breast surgeon visits 2x a year and 3 d mammograms
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That is a tense situation you are in.
So in your case the ADH was the only risk factor but they did not see it until now ? That seems strange to me for the Surgeon to say that it was always likely there but never picked up on any imaging or biopsies??? Mine got pretty quickly noted on the Mammogram.
And they are telling you to go back on meds that may not have worked..... for your anxiety? You know I just don't know what I would make of all of that?
Keep us posted. This must be very confusing information and advice. It definitely would be hard for me to sort it out
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No more tense than what I have lived with the last 8 years. My oncologist said it was always there before, no never had any indication it was there on numerous mammosite, ultrasounds, and even MRI. Not sure what it was never seen before on all the tests. My onc said that it was not on the original biopsy because they were dealing with actual invasive tumor. Second options maybe in my future. First I need to heal from this reductions/lift/revisions on both breasts.
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It's all incredibly stressful. I hear you!!
Weird that none of those imaging tests or even pathology on biopsy didn't suggest ADH.
Wishing us all well nes
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Hi all. This is my very 1st post. And I have to start off with...I am so terrified, emotional, numb, angry and simply annoyed. I am guessing many of those are normal, sigh 😤
My only sister was dx at 41 yo. And has since had two reoccurrences one of which she remains on chemo for...bless her heart...she just turned 59. I am in awe at her strength and determination. At 30, I began annual mammograms (47 now). I have family history on both sides, all before the age of 40. I am BRCA- (gratefully).
Anyways, so went for my usual Mammo, and of course with dense, microcalifications in both breasts was called back for spot compressions on the left. Immediately had a CNB of the left and was dx with ADH. I had always said, the girls will have to go someday....and the someday is finally approaching. I have chosen to have profilactic bilateral mastectomies. I cannot go through the millions of surgeries, infections, and treatments. I wish I were as strong as others but it is not where I can best focus my efforts. I've already been down the cancer road with my 1st DH and lost. So I truly believe this is the best choice for me.
I am grateful to find this community. It comforts me to know I am not alone in my choice, struggles and emotions. For me the next few months will be filled with appointments and trying to figure out what to do for reconstruction. Although I am very comfortable with the girls going, I had never thought about the what next part. Duh? Don't know why I didn't get that far.
Prayers and blessings to all of you!!!
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You are the brave one . I wish you strength as you go forward. I feel like I should do this too but I'm as yet ambivalent . It's a very hard decision. I had no problem with the prophylactic ooph but the breasts are much harder. And of course the surgery will be much harder
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Many here have donated . Thank you !........Wandering around and cheerleading again
Donate today, make a difference directly in all our lives. By supporting BCO, we support each other. Thanks and Hugs
https://community.breastcancer.org/forum/110/topic/834331?page=1
Link to the mainboard donation page
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I am really new to this. It's good to know there are people out there going through this same ADH nightmare. I initially went in to see my doctor for a yearly clinical exam in 2013 at the age of 37. I had some nipple discharge for the last 16 years prior after the birth of my first daughter. I had it checked out several times prior and every doctor had looked at it, put it under a microscope and told me not to worry about it. My doctor wanted me to have it checked out again & sent me to the hospital for an ultrasound. Nothing was found on the ultrasound and I was sent in the next room for a mammogram. While doing the mammo they found clustered calcifications which led to a needle biopsy and then a surgical biopsy. ADH was found and all the cells were taken out with the surgery leaving me with clear margins. I decided to forgo the Tamoxifen knowing it would throw me into early menopause. Here I am now, I just had another suspicious mammo and then a follow up with more images. They said nothing was really found of importance but my doctor is having me have an MRI, speak with a genetic counselor and start going to a specialist. My mom had breast cancer is 2012 at the age of 72. I am just worried that this will turn into a lifetime of testing and repeat biopsies.
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I'm on the same page dear . I'm almost twice your age , been through the same and now expecting another problematic finding on Friday at the follow up Mammogram. I'm hoping for the best and expecting the worst.
What can we do?
I think genetic testing is a good idea for you. Will be very significant if you can have your Mom do it too.
Glad this time turned out not to be ADH again for you. Take a deep breath, do the genetic testing
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Welcome, BoopsieRN.
First, I'm sorry you're going through all of this. I think you're being very brave. I'm sure you're feeling many of the same things I am. The doctor told me the typical treatment for ALH or ADH is 5 years of anti-estrogen drugs and screenings every 6 months, with suspicious areas being biopsied.
I understand where you're coming from and I am in complete agreement. I have several different spots (ADH, ALH, and atypical papilloma) across both breasts and I have chosen the same course you did. My husband and I discussed mastectomies at length and when we talked to the doctor about that option we were told that is what he would suggest if I were his wife. Our decision felt validated and every woman I have talked to has said they would do the same thing.
I'm scheduled for November 10th and we see the plastic surgeon this Monday.
I wish you peace and will be sending positive thoughts your way.
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Ddw I have been thinking of you all day .I hope everything went well..😇😷
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Ddw----(saw your good news on the other post ! ) You were "hoping for the best, but expecting the worst", but you got the best news possible! Time to celebrate! Going forward, with your family history of bc and oc, you might want to consider preventative meds? (tamoxifen if pre-meno, evista or aromasin if post-meno) talk to your doctor about it.
anne
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I feel like it been a good week for our little crowd and I'm very thankful for your advice counsel and support. This time they saw calcifications but not in a worrisome pattern.
Anne I will be talking to MO from Dana Farber but she said no to meds last time we talked about it due to all of the other diseases I have to deal with .
It should be a good weekend for us here thankful!!
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Hi ddw I saw your post in the other board. Great news..💃💃💃🎉🎉.. Did you have calcifications when you were diagnosed? I heard they come with age as long as they are not clustered or in a certain pattern then it's ok. Birads 1 that is great. I'm worried because I have clacifications in both breasts and some clusters that didn't seem suspicious to the RO. Still contemplating on taking tamoxifen. I'm waiting for my grandson to arrive he will be born Oct 29 if not sooner.😁.
Go celebrate ddw and enjoy your weekend....
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