Anyone dealing with Atypical Ductal Hyperplasia (ADH)?

Posted by EJ @elsajohnson, Aug 7, 2018

I am sorry if this is not the right forum. I know ADH is not cancer and this is a breast cancer forum, but I can't find another forum that may be more relevant.

I am wondering if there is anyone who is dealing with ADH or has been diagnosed with ADH that can share their experience. I was diagnosed a month ago. While I am relieved that I don't have cancer, I am confused with the radiology report that shows BI-RAD6 – surgical removal is recommended. I have seen a breast oncology surgeon and I don't think she took me seriously because I don't have cancer. It almost feels like I wasted her time seeing her because I don't have cancer. If ADH is no big deal, why BI-RAD 6 (which i understand is for biopsy proven malignancy). I also read up about ADH online and understand that with ADH, my risk for breast cancer is 4x. Should I not worry about it and just do annual check? Should i see another breast surgeon? Should I see an oncologist? Do I need genetic testing to better understand my risk? I feel like an impostor for even posting this on a breast cancer forum but I am genuinely confused and concerned. Any help will be greatly appreciated.

@monical

Hi jzcareformom. At 83 I can understand your mom’s concern about having surgery. It is not something to take lightly at any age, but for someone who is up in age I can understand the need for weighing the risk/benefits. It is a surgery with anesthesia and a breathing tube (and a pre-op surgical check-up and all the rest that went w/ it) and for me, at 59, I didn’t particularly find it to be a walk in the park. Her diagnostic mammogram findings should state the size of the microcalcificaitons and when she goes back for her 6 month follow-up (which she should definitely do), then they can do a comparison which might help her to come to a decision on going forward w/ the excisional biopsy. Making these decisions is difficult and lots of people (doctors included) will tell you what you should do – I know from personal experience how debilitating it all can be if you question your own judgement. Good luck to your mom and to you…

Jump to this post

monical – one of the reasons I like this site is how many different experiences we all have to share. You have my curiosity up though on something (anyone else want to share as well?). When I had my surgery (and previous surgeries for benign lumps as well) they were all done under a local anesthetic…no breathing tubes or any other intervention with the exception of some Xanax for my nerves. My surgeries were much easier, outpatient, less than an hour……your experience sounds so much more involved. I suppose it could be location, size, that sort of thing? If anesthesia with breathing tubes, etc is the norm for this type of surgery and mine is outside of the norm, then I would want to qualify my comments above for jzcareformom because follow up might be a lot less wear and tear for her.
Hugs

REPLY
@cindylb

monical – one of the reasons I like this site is how many different experiences we all have to share. You have my curiosity up though on something (anyone else want to share as well?). When I had my surgery (and previous surgeries for benign lumps as well) they were all done under a local anesthetic…no breathing tubes or any other intervention with the exception of some Xanax for my nerves. My surgeries were much easier, outpatient, less than an hour……your experience sounds so much more involved. I suppose it could be location, size, that sort of thing? If anesthesia with breathing tubes, etc is the norm for this type of surgery and mine is outside of the norm, then I would want to qualify my comments above for jzcareformom because follow up might be a lot less wear and tear for her.
Hugs

Jump to this post

I was the same as you. I did not have a breathing tube either and was out same day within an hour after surgery. I was put under local anesthesia and woke up a few time during the procedure. This is not an invasive surgery and there is no need for a breathing tube unless they are doing a mastectomy.

Liked by cindylb

REPLY
@khauff

I was the same as you. I did not have a breathing tube either and was out same day within an hour after surgery. I was put under local anesthesia and woke up a few time during the procedure. This is not an invasive surgery and there is no need for a breathing tube unless they are doing a mastectomy.

Jump to this post

@khauff Are you a doctor, surgeon or anesthesiologist?? Actually, I’m not even going to further reply to your comment…I’m done here.

REPLY
@monical

@khauff Are you a doctor, surgeon or anesthesiologist?? Actually, I’m not even going to further reply to your comment…I’m done here.

Jump to this post

I am sorry I upset I don’t know why though. No I am not a doctor or surgeon or anesthesiologist but I have been a Registered Nurse for 20 years and a Certified oncology nurse for that so I do know a little about breast cancer and what is involved with it. Yes everyone is different and every surgery is different but usually for a lumpectomy you will not have a breathing tube put in because it is not a major surgery. It is an out
Patient surgery and unless complications arise you will go home the same day.

REPLY
@khauff

I am sorry I upset I don’t know why though. No I am not a doctor or surgeon or anesthesiologist but I have been a Registered Nurse for 20 years and a Certified oncology nurse for that so I do know a little about breast cancer and what is involved with it. Yes everyone is different and every surgery is different but usually for a lumpectomy you will not have a breathing tube put in because it is not a major surgery. It is an out
Patient surgery and unless complications arise you will go home the same day.

Jump to this post

@khauff At my first lumpectomy, I had a breathing tube because of the concern of additional lung issues. At the second lumpectomy it was also used as that second surgery too 6 1/2 hours due to partial mastectomy and mastopexy on the second breast. Every patient is different and so surgeries, anesthesia/breathing tubes, vary from patient to patient. @monical Don't leave just yet – if you're unsure about comments, just observe for a while. I hit my head against a hard wall in the beginning and am glad I stuck around as gleaned good information here and there.

REPLY
@trixie1313

@khauff At my first lumpectomy, I had a breathing tube because of the concern of additional lung issues. At the second lumpectomy it was also used as that second surgery too 6 1/2 hours due to partial mastectomy and mastopexy on the second breast. Every patient is different and so surgeries, anesthesia/breathing tubes, vary from patient to patient. @monical Don't leave just yet – if you're unsure about comments, just observe for a while. I hit my head against a hard wall in the beginning and am glad I stuck around as gleaned good information here and there.

Jump to this post

Exactly what I said every surgery is different but it sounds like from what you are saying you didn’t have just a typical lumpectomy either. You said with your first one they were concerned with lung issues and with your second one you had a partial mastectomy so with the first one that would be a concern for a breathing tube and the second would not have been just a lumpectomy it would have been more invasive surgery. Yes everyone and every surgery and every situation is different. I probably didn’t state it correctly in my initial post and I didn’t mean to make anyone made but if it is a typical lumpectomy with no underlying issues and a healthy patient a breathing tube is not usually necessary. And again I am an Oncology Nurse who has 20 years experience.

REPLY
@khauff

Exactly what I said every surgery is different but it sounds like from what you are saying you didn’t have just a typical lumpectomy either. You said with your first one they were concerned with lung issues and with your second one you had a partial mastectomy so with the first one that would be a concern for a breathing tube and the second would not have been just a lumpectomy it would have been more invasive surgery. Yes everyone and every surgery and every situation is different. I probably didn’t state it correctly in my initial post and I didn’t mean to make anyone made but if it is a typical lumpectomy with no underlying issues and a healthy patient a breathing tube is not usually necessary. And again I am an Oncology Nurse who has 20 years experience.

Jump to this post

https://www.health.harvard.edu/medical-tests-and-procedures/excisional-biopsy-of-the-breast-a-to-z
https://www.mayoclinic.org/diseases-conditions/cancer/in-depth/biopsy/art-20043922
https://www.hopkinsmedicine.org/health/treatment-tests-and-therapies/breast-biopsy
I cannot let misinformation sit. To say that the only reason to have general anesthesia (where a breathing tube is used) is if you are having a mastectomy or have health complications is just plain false. I spent countless hours researching and reading, had 3 separate physicians recommend the same breast surgeon, had 2 consultations w/ the surgeon to discuss every single aspect of the excisional biopsy, including anesthesia and her years of surgical experience . If you read the above links you will find information that supports that excisional biopsies may require general anesthesia.

For those of you who face something similar, I had the Savi Scout inserted first thing in the morning, had the surgery around mid-day, spent time in the recovery room, then back in my out-patient room and then went home – about 12 hours in total. I have declined chemoprevention therapy, just had a clean mammogram and ultrasound, a successful visit w/ my surgeon who rightfully patted herself on the back for doing a great job concealing my 2 inch scar and I have a follow-up in the new year where I will have an MRI.

Be your own advocate. Ask questions, multiple times if you need to. Find people who will be on your side. Go with your gut and don’t let anybody tell you otherwise.

Liked by auntieoakley

REPLY
@monical

https://www.health.harvard.edu/medical-tests-and-procedures/excisional-biopsy-of-the-breast-a-to-z
https://www.mayoclinic.org/diseases-conditions/cancer/in-depth/biopsy/art-20043922
https://www.hopkinsmedicine.org/health/treatment-tests-and-therapies/breast-biopsy
I cannot let misinformation sit. To say that the only reason to have general anesthesia (where a breathing tube is used) is if you are having a mastectomy or have health complications is just plain false. I spent countless hours researching and reading, had 3 separate physicians recommend the same breast surgeon, had 2 consultations w/ the surgeon to discuss every single aspect of the excisional biopsy, including anesthesia and her years of surgical experience . If you read the above links you will find information that supports that excisional biopsies may require general anesthesia.

For those of you who face something similar, I had the Savi Scout inserted first thing in the morning, had the surgery around mid-day, spent time in the recovery room, then back in my out-patient room and then went home – about 12 hours in total. I have declined chemoprevention therapy, just had a clean mammogram and ultrasound, a successful visit w/ my surgeon who rightfully patted herself on the back for doing a great job concealing my 2 inch scar and I have a follow-up in the new year where I will have an MRI.

Be your own advocate. Ask questions, multiple times if you need to. Find people who will be on your side. Go with your gut and don’t let anybody tell you otherwise.

Jump to this post

Hi @monical, I appreciate your including links to further information and encouraging people to do their own research and to ask questions of their care team. People also learn from the experiences of others. I reviewed the past posts in this discussion and do not see any mis-information. Rather, it contains valuable experiential information from people who have had surgery, describing what was involved for them. You are correct that some biopsies may require general anesthesia. However, as in the case with @khauff and @cindylb, some excisional biopsies can be done with local anesthesia.

Monica, I encourage you to re-read the past posts. I think you will find that no one contradicted your experience, but rather wished to learn from it. Thank you @khauff @cindylb and @trixie1313 for sharing your experiences.

Should anyone have further concerns, please contact me directly using this form https://connect.mayoclinic.org/contact-a-community-moderator/

REPLY
@colleenyoung

Hi @monical, I appreciate your including links to further information and encouraging people to do their own research and to ask questions of their care team. People also learn from the experiences of others. I reviewed the past posts in this discussion and do not see any mis-information. Rather, it contains valuable experiential information from people who have had surgery, describing what was involved for them. You are correct that some biopsies may require general anesthesia. However, as in the case with @khauff and @cindylb, some excisional biopsies can be done with local anesthesia.

Monica, I encourage you to re-read the past posts. I think you will find that no one contradicted your experience, but rather wished to learn from it. Thank you @khauff @cindylb and @trixie1313 for sharing your experiences.

Should anyone have further concerns, please contact me directly using this form https://connect.mayoclinic.org/contact-a-community-moderator/

Jump to this post

“This is not an invasive surgery and there is no need for a breathing tube unless they are doing a mastectomy.”

REPLY
@colleenyoung

Hi @monical, I appreciate your including links to further information and encouraging people to do their own research and to ask questions of their care team. People also learn from the experiences of others. I reviewed the past posts in this discussion and do not see any mis-information. Rather, it contains valuable experiential information from people who have had surgery, describing what was involved for them. You are correct that some biopsies may require general anesthesia. However, as in the case with @khauff and @cindylb, some excisional biopsies can be done with local anesthesia.

Monica, I encourage you to re-read the past posts. I think you will find that no one contradicted your experience, but rather wished to learn from it. Thank you @khauff @cindylb and @trixie1313 for sharing your experiences.

Should anyone have further concerns, please contact me directly using this form https://connect.mayoclinic.org/contact-a-community-moderator/

Jump to this post

I have contacted you asking how to de register from this forum. Thank you.

Liked by cindylb

REPLY
@monical

I have contacted you asking how to de register from this forum. Thank you.

Jump to this post

@monical – if you are still here I hope you won't leave our discussion because I learned something here and that's the best part of this site. I had previously assumed most, if not all, follow up excisional surgeries would be done under local and yet trixie1313 had a completely different experience as well. It's this kind of information that helps us all and helps us help each other.
Hugs

REPLY

I completely I agree! Thank you for posting this. I am not very good with words but yes we all learn from everyone’s experiences and everyone’s experiences are different. Thank you everyone for sharing!

REPLY
@ckf1317

I was actually considering posting similar questions on this forum but wasn't sure it would be the right place. They found microcalcifications in a routine mammogram 3 yrs ago, I was put on a schedule of having a mammogram every 6 mths, there had been no changes, so a year ago I was released to going back to a yearly mammo. I had the mammo beginning of July, they found new microcalcifications with a dense area near them, did an ultrasound the same day, and had an opening that day to do a core needle biopsy so I took it. Didn't want to wait. The local lab had to send the biopsy to Mayo to examine and the dx was ADH. The radiologist recommended a MRI of both breasts, to make sure there were no other areas of concern, before doing a surgical excision to remove the remaining area. He referred me to a surgeon who specializes in breast cancer surgery. I had the surgery 2 wks ago, they biopsied the tissue removed and found they got all of the ADH and no cancer cells were found. I was so thankful. I asked my surgeon about genetic testing, she referred me to a genetecist. I just had the appt with him 8/6 and was told even w/o doing the testing, based upon my personal history and mostly due to the ADH dx, my chance of breast cancer went up from 12%(avg risk for my age-47) to 41%. He explained based upon that % I will require follow ups every 6mths (which the Radiologist had already indicated in his report I should have follow up MRI in 6 mos) but it also opened up other options such as bilateral masectomy or medication to lessen the chance of further changes. I am pre-menopausal and my surgeon recommended against the drugs. I am wondering if anyone else has had ADH, but not cancer, and decided to have a preventative masectomy?

Jump to this post

I am having preventative double masectomy beginning of september.

REPLY
Please login or register to post a reply.