ALH- Tamox, pmx, watch?

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gnoz8
gnoz8 Member Posts: 28
edited May 2018 in Benign Breast Conditions

I posted this in the high-risk forum, but I meant to place it here.......


I just received the results of my first ever biopsy- MRI guided. Nothing on mammo 6 months ago. MRI saw the spot.. ALH, PASH, columnar cell changes all listed on the report. I am 43 yrs old. No children.

Family history: My mother was diagnosed with stage 3 bc at 52 (she's still NED- whoo-hoo!), and her mother died of bc the the age of 47. I have no other 1st degree female relatives, and my mother's older sister has never developed bc. I have tested neg for BRACA1/2 and I'm awaiting results of the updated panel (of all the other known genetic mutations). My mom has agreed to get tested as well.

My breasts are very dense, so I have been getting yearly MRIs and diagnostic mammos each year for the last 6 years or so. This was my first biopsy, and now I'm scared and saddened about the choices I have.

I am scheduled to see (my mom's) breast surgeon next week. I always thought I would get a pmx at the first sign of trouble, but I'm freaking out way more than I expected. From what I know, my choices are careful surveillance, Tamoxifen, (some combo of the 2), or pmx. I'm emotionally all over the place. I'm mourning the loss of my breasts before it happens. I would like to find a way to keep them for a bit longer at least, but feel like I'm under the gun to make a decision now (self-inflicted...again, I haven't even seen the surgeon yet). But then...if I developed bc while I was holding out for a while I can't imagine my regret if it was invasive. But I'm having an incredibly hard time imagining no sensation in chest and to be without mine.

Anyone BRAC neg with family history and ALH that didn't choose pmx? Regrets? Stories? Any feedback would be helpful.

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  • Mechq
    Mechq Member Posts: 19
    edited April 2018

    I am sorry you are going through all this. I went on this forum to search for similar info. I don't have a family history I'm adopted. My adopted mother's cousin and her mother who is in her 90s both had mastectomies. They both seems happy either their choses and to my knowledge haven't had any issues.

    I just had a lumpectomy to remove a 5 cm, mass. My dx is PASH, radial scar and ALH. I will go for more testing to assess my risk, which I am not sure what they do, but depending on the risk I may need to take medicine and either way will have to get and MRI every year. I have had a total of three biopsies in the last two years. While I'm not where you are at I tend to put the cart before the horse a lot. I am trying to take a more logical approach which is still hard. I had no idea how complex breast cancer is. I would go with what my gut tells me. I guess you really don't know until you are faced with the discussion.


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  • gnoz8
    gnoz8 Member Posts: 28
    edited April 2018

    Thank so much for responding! It's a tough decision. I'm sorry you're having to go through this as well. I see my surgeon on Thursday to discuss removing the mass in my breast that they found/biopsied via MRI. I've been rotating mammos and MRIs every 6 months, high-risk program watch. They are not bad at all. I watched my mother go through sooo much with her cancer. She's fine now, but I want to do everything I cam to ensure I don't have to follow that path. It's emotional and nerve destroying, but I'm grateful to have choices. I know what you mean about the cart before the horse- guilty!

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  • tiana
    tiana Member Posts: 2
    edited May 2018

    i'm new here - what's PASH? Was just told i have ALS by surgical biopy. Nothing in family history, haven't had BRAC test. Meet w/dr. next week to hear his thoughts (nurse called me with results today.) I'm 49 with a 3 yr old.


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  • gnoz8
    gnoz8 Member Posts: 28
    edited May 2018

    Hi tiana- PASH is a benign growth in the breast. Mine just happened to have been found in the same spot as the ALH. Here's a link to another conversation on the boards....that also has a couple other thread links in one of the messages:). I have also listed a link from this site about ALH, just in case you haven't read it yet. This site has great info. Good thoughts coming your way for your doc appt.

    http://www.breastcancer.org/research-news/20140307

    https://community.breastcancer.org/forum/83/topics/852748

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