ALH what to expect now

swimmom01

ALH what to expect now

swimmom01

I am 39 and  was just diagnosed with atypical lobular hyperplasia and have been referred to BS.  I have no idea what to expect now and am really quite scared. After reading some posts discovered that some people have gone on to have a more indepth biopsy and discover they have LCIS.  My maternal grandmother had BC and my mother is only 61 and usually finds lumps every year or so that turn out to be cysts but really feel that since she is high risk I should be also be high risk given that I have ALH.  I go to the BS this wednesday but have no idea what to expect or even the questions to ask.  Can anyone give me some guidance on what I should expect? Thanks so much!

Moderators

swimmom, welcome to BCO.

To help you prepare for your appointment next week, there's an article on the main Breastcancer.org site called Questions to Ask Your Surgeon. You'll hear from more community members too, who can share their personal experiences.

The Mods

ma111

I was so scared when I was first diagnosed that my voice was shaking. I called my family doctor and they called in some ativan for me. I don't know why they don't automatically do that with any kind of cancer, or near cancer diagnosis.

The link the mods gave you what you can write down to ask. Also write down the answers because you will forget them like the rest of us. If someone is available, take them with you for help remembering things.

I will say a prayer that is just a cyst like your mothers.

brendaks

Welcome, swimmom01!

I have been diagnosed with ADH which similarly is a pre-breast cancer, only located in different breast tissue.

ALH/ADH are basically just that - a precancer.  It's not cancer yet, but it puts you at a bit higher risk than someone who doesn't have it.  When ALH/ADH are found upon biopsy, standard procedure is to do an excisional biopsy (surgical removal of the area) to further test it through pathology as approx. 20-25% of the time there may be very early LCIS/DCIS or even very early invasive breast cancer hiding amongst the ALH/ADH.

If no cancer is found, then you will likely face frequent future screenings by mammogram, ultrasound, breast exams, and/or MRI.  Many of us are in this situation, and that will likely be your outcome also.

If cancer is found, they will do lots of testing on the pathology of it, and keep in mind it would likely be LCIS or a very early stage cancer which is highly treatable and not very life threatening.

I think all of us here can say by experience that the time for you between now and when you get the pathology results is very stressful.  The best thing you can do is turn to people like you find here for support, and educate yourself on your condition.  This web site has great information, as do the people who have walked this path here.

Questions you can ask your surgeon is how much tissue he/she expects to remove, how soon will you know the pathology results, will he call with the results or do you find out at a future appt with him, do you need further testing before the excisional biopsy, is there only one area of concern, do you need to be seen by an oncologist for possible hormone therapy (like Tamoxifen or Evista).

*Hugs* and best wishes!

swimmom01

Thank you so much for the information.  I had the sterotactic biopsy on tuesday and the radiologist called the next day with my results of ALH and said I need to see the breast specialist. It was kinda alarming that my results were so fast. Thanks for your info on the next step of a biopsy to get more tissue. Everyday I think of something else and what it could mean.  I just want to meet with the BS so I have a more understanding of what lies ahead. Thanks for your support.

JayeGA

welcome, swimmom!  Glad you found us. This forum is a great source of info and wisdom--in fact brendaks sounds amazingly like my breast surgeon  The info she gave was spot-on. My breast surgeon said the excisional biopsy is important because it gives us a chance to see if there is any cancer in the area, and therefore start treatment early. She also said that some women elect not to do it. They just want to accept the results as benign. The risk there is that if there are any cancerous cells, they might continue to grow without treatment. Her opinion is that it's better to know, than to not know. When I first came to this site, I honestly didn't know whether I would do the excisional or not. I had a lot of drama going on in my life, and it was not exactly a great time to add more to the mix. After getting feedback from other women who had faced the same choice, asking more questions of my breast surgeon, and a consult with an oncologist, (and prayer) I decided to do it and it was a wise choice. They found no cancer (yay!) yet now through the whole process I know much more about atypia, my breasts, good health, and my options. I feel more confident in making the best decisions for myself now, which is far different than I felt just 2 months ago.

I would co-sign all the advice you were just given, from the mods, ma111, and brendaks. Make a list of questions and concerns and ask about your options. My breast surgeon made me feel comfortable in asking any questions, and I think you will feel better once you meet with him/her.

Keep posting, let us know how you're doing. You are NOT alone.  Blessings!    Jaye 

swimmom01

I picked up my images and path report this morning preparation for my BS visit on Wednesday.  There was new information that wasn't told to me when given the ALH dx.  The report also states microcalcifications in ductiles.  This whole process started for me when the mammo picked up some microcalcifications now I have no idea what to think!  Wednesday can't get here fast enough.

brendaks

The doctors will typically just tell you that you have ALH or ADH, but won't go into much detail beyond that.  Most of us who have ALH/ADH have additional issues and changes going on, so don't fret it too much.

vmudrow

After my excisional biopsy showed ALH I was referred to an oncologist who recommended taking Tamoxifen.  Good luck and ask the surgeon what they would do if it were them - I always find they give an honest answer, laying out the options and then saying what they would do.  Keep us posted!

Hugs, Valerie

thatsvanity

I had ALH while my sister was diagnosed with METS BC. I had a nipple sparring prophylactic mastectomy 4 months after my sister passed away, for me it was the right thing to do for my health and peace of mind.

swimmom01

I met with the BS on Wednesday and feel more comfortable since I now have a plan. I had an MRI on Friday and am waiting on the results. If it doesn' t show any new areas of concern then will proceed with the excisisonal biopsy on Thursday. The hardest part is the waiting on the results! It has been a whirlwind of late at my house which usually I don't like but has really helped to keep my mind focused on my kids and not on all of this.

JayeGA

Glad you feel more comfortable, swimmom. My BS actually reviewed the MRI results with me right before surgery, pics and all. It was a smooth procedure and recovery and I know my comfort with her had a lot to do with it. Wishing you the best in your procedure!

Jaye 

swimmom01

So I received the results from MRI on Monday and went down for another biopsy but this time on my right breast.  BS called this morning and it is IDC.  She has cancelled my excisional biopsy on the left AHL breast for tomorrow.  I am meeting with her to formulate a new plan of treatment.  I still feel like I am in shock and that I am watching this happen to someone else. I feel like I should have so many questions but I don't know where to begin.......

JayeGA

{{Swimmom}} I know this is tough. Thinking of you...drop us a line whenever you can. You are NOT alone. 

Hugs....Jaye 

brendaks

Swimmom,

Sending a warm cyber hug your way! 

Remember that most breast cancers respond very favorably to treatment as you go forward, and that you are not alone.

swimmom01

I met with the BS and have decided that I will do BMX. I really came to this decision fairly easily as I just knew that for my sanity and my children that I couldn't have this lingering over me all the time. Now I am sure as I get closer to the actual surgery I will have doubts but I think that is normal but know I have made the right decision for me.

 Yesterday I met with 2 plastic surgeons, they both had very different opinions.  But I feel much more confident with one and his experience is so more extensive. This decision was much harder to make. It's one thing to say get this c out of me but another to choose a reconstruction path when there are so many options and hope that you choose the right one. I am going to have the free tram with immediate reconstruction depending on the results may or may not have a small implant as well.  I have always been on the very small side and figure what the heck might as well get something out of this.  I am waiting on the BS, PS and hospital to coordiante their schedules.

So once again I am waiting on a phone call, this cylce never gets easier. I hope to know in the next couple of days.

I now need to find an oncologist as I hope to meet with them before the surgery so I can feel comfortable with them when I meet with them to discuss my treatment. 

Has anyone had the Free tram or know where I should look on the boards to find discussions on it?

brendaks

Sounds like you're getting things lined up and in order nicely!

Check the Surgery - Before, During, and After board for surgery and reconstruction information.

beacon800

So sorry that it went this way!  Boo.

I had a bliateral mx after LCIS diagnosis and never looked back and it's all been ok.  Considering your young age and your family, I think you are making a good decision.  Hoping for good health for you!!

greenacres

I'm so sorry to hear of your diagnosis.  Can you tell us what your receptors are?  ER/PR and HER2?  Negative, positive?  I wish you the best of luck in your treatment. I am regretting now that I didn't have a BMX.  I wish I was given that option even at Stage one, but Her2+++ and they found ALH when they removed my original tumor they said "close to the cauterized margin", but that scares me wondering if it still there or if it strayed.  Good luck to you.

swimmom01

I haven't been given information yet on ER/PR and HER2 or even a real staging yet.  My BS mentioned she thought stage I.  But she was very vague and I am okay with that for now.  I would much rather know for sure after the BMX versus thinking one way and then ending up being surprised once the path report comes back. I used to want to know all information up front but since all of this has started I have realized that it is easier for me to take chunks of information so I can process it first.  My focus is now to get through the surgery, reconstruction and recovery.  Then I will tackle the treatment whether it is chemo or tamoxifen.