AM I crazy for wanting a PBMX for ALH and no family history?

dmarie,   ALH doesn't always turn into cancer, but from what I've read, it increases your risk of breast cancer in the affected breast by 3 to 5 times than the unaffected breast.  With that much increased risk factor already, I wouldn't think family history was relevant at this point.  Your personal risk has increased.  You're not crazy for wanting the PBMX.  But you might want to consider that while a PBMX does lower your risk it doesn't take it down to zero.  They do leave a small amount of breast tissue.  Whatever you decide is right decision for you.  I hope all goes well for you. 

Sounds like a reasonable choice. You are not just interested in detecting cancer early - you don't want to get it at all. And sounds like you were very close to the LCIS line.



Are you planning to reconstruct? If so, immediately or delayed ?



I like the idea mentioned earlier of seeing a counsellor a couple times. They can be really helpful at any major decision. Help you clarify your pros and cons so you won't have regrets later, even if you run into complications. Help you prepare for the mastectomy - any special way you want to honor your breasts before surgery? Anything you need to prepare for as far as sexuality goes with altered breast sensation?



You should be prepared for some people around you to not understand your decision. Worth deciding who you will tell, who you won't. Are you confident enough in your approach that you can handle it if you someone in your life doesn't "get it"?



Good luck

dmarie71 - I was one who chose NSMX for ALH.  I was tired of the worry, I would have to have had constant monitoring, MRIs every year which find more things, which would mean more biopsies.  The oncologist also wanted me to take Tamoxifen and I had talked to ladies that were on it and they hated the side effects.  My surgeon also agreed with my decision and said she would do the same if it were her.  I have been very happy with the whole process and would make the same decision again.  If you have any questions please feel free to ask - or send me a message and I'll give you my phone number if you would like to chat about it.  There aren't many ladies on here that have had masectomies when there diagnosis has been ALH.  I will bump up a thread on it for you - look under active topics.

Hugs, Valerie

dmarie71-  NOT crazy,  as a matter of fact, it sounds like you have proceeded through all the right pathways and asked the right questions. 

Your history sounds very much like mine.  First there was ALH,  several years and biopsies later, I am now upgraded to LCIS.  I also do not have a strong family hx, paternal grandmother had BC in the 1950's..... one cousin on my mom's side.  Mom's been deceased for many years and I have no sisters. 

It is true that ALH seems like a very gray area but if you look at the research out there, some experts say that there is very little difference between ALH and LCIS.  Some even say they are one and the same. 

No matter how you look at it, either dx puts you in a high risk category and if you put meds and PBMX aside , your only other option is hyper vigilance for the rest of your life.  If that option is increasing your anxiety to the point of interefering with your quality of life.....then I say, your body, your choice.  It's even better if your BS supports your choice!

I, myself am jumping off the hypervigilance wagon next year in May.  I am in the process of building a plan to rid myself of the monkey on my back.  BS, DH, and all wonderful kids and friends are on board with me!

My best wishes go out to you.......

Not at all. I was diagnosed with ALH and ADH.  Had 11 biopsies in 5 years.  Diagnosed with LCIS with the last surgery. That was it for me.  I am having a pbmx on aug 14.  I made my decision on the day the LCIS diagnosis came in and never looked back.  I am nervous but not nearly as nervous as I was while waiting for all those biopsy results.  Good luck to you!!

I decided to go with surgical biopsy for the second time. This is the last. Much worse than the first time. Started with 2 needle biopsies. Alh was diagnosed. Sent back for one more. Benign. Went for wire placement before surgery needle went in and was not in the right spot. The second try i became very hot,

sick and dizzy with introduction of the numbing agent. The needle was incerted and the last mammo was in progress. . . I woke up laying down with the doc holding my breast in his hands and the nurse putting cold water on my face. Went into surgery after that already worn out. If i get another diagnosis requiring surgery i will elect double mastectomy. I am not trying to scare anyone or enfluence anyone elses decession, but i am tired. I have had 6 biopsies counting 1do over, 3 wire placements and 2 surgeries. It takes an emotional toll and a physical toll. And the thought of doing this again and maybe again after that is terrifying to me. Right now i am waiting for the results of the surgical biopsy. I go for an mri in 2 days to diagnose a mass that is in my abdomen. More waiting. . .I try not to feel or sound doom and gloom but that is where my emotions are taking me right now.

Hi Dmarie71,

I just wanted to let you know that I was diagnosed with ALH in May 2011 and had a Bilateral Mastectomy June 2011.  Due to many factors including:ALH, maternal breast cancer at young age, biorads 4 results, numerous biopsies, calcifications, lumpectomies, my breast surgeon suggested that I have the surgery as well as an oophorectomy. Of course, I was very scared. 

Here I am a year later and I am doing great.  Before, I was at the doctor's office monthly in 2010 for one test after another. I was hoping that 2011 would be different. Tests were still being performed.  

Now, 2012, I am more relaxed and I am not at the doctor's office as often.  You have to feel comfortable with your own decision for yourself.  Don't let anyone try to sway you into anything that you are unsure of doing.  I have come a long way since surgery.  I had true belief in both of my surgeons.  I had a positive attitude because I have seen my Mother live as a survivor for many years.  She has always given the goodness of her heart to others.  I knew that if she could survive, so could I.

This is my first posting; new to the site.  I wish that I had known about this site before I had my mastectomy.  Such a great resource for women. 

I wish you the best in your decision.  Plz let us know how your surgery goes in November.  You will do great. Big hugs to you and all the other women that visit this site. I know there are many of you out there that have endured so much more that I. 

Do risk factors increase every time alh/adh are found? I recieved the results from surgical biopsy no cancer. Relief. . .but still making choices for the chance there is a next time.

Hi Dawn,

How are you doing with the tapering off of lorazepam? I hope you are doing well. I take it every day so I know how you feel if you run out especially if you have generalized anxiety disorder as I do. I have been taking it at night for good sleep maybe that would work for you taking it at night.

Also how are you doing with your elective surgery?

Amy Lynn

Thank you. That does help. After the second surgery I am making choices for what if there is a next time. Already dreading my six month mammo.