Anyone live with ALH/ADH for decade(s) with no progression?

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center1
center1 Member Posts: 21
edited August 2016 in High Risk for Breast Cancer

I was diagnosed with ALH two years ago and have lived with severe anxiety ever since.  I've researched it like crazy but what I really want is to hear from people that were diagnosed decade(s) ago and have had no further problems. I think we could all use some reassurance that this actually does often turn out okay.  Much appreciated!

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2014

    I was diagnosed 11 years ago with LCIS ( a step further along the bc spectrum and twice the risk of ALH) and my risk is further elevated by my family history of bc (mom had ILC).  I haven't had any further problems in all these years even with that high risk combination.  I just returned from another clear mammo a few hours ago actually; so I guess I can offer some reassurance in this situation.  I do high risk surviellance of alternating mammos and MRIs, took tamoxifen for 5 years, still take evista, and  get clinical breast exams on the opposite 6 months.  I would just encourage you to be vigilant with your breast exams, report any changes, try to live a healthy lifestyle with diet and exercise; don't spend your life being anxious about it! Consider tamoxifen if you haven't already.

    anne

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  • Annette47
    Annette47 Member Posts: 957
    edited October 2014

    My neighbor had an area of ADH removed well over 10 years ago and has had no further problems.

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  • center1
    center1 Member Posts: 21
    edited October 2014

    thank you so much for your response.  It's nice to hear a positive story of hyperplasia.  

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  • center1
    center1 Member Posts: 21
    edited October 2014

    thank you so much for your reply.  It is comforting to hear about the ones that don't go on to develop BC.  So since you are 10 years post diagnosis, your risk now starts decreasing if what I read is correct?

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  • ballet12
    ballet12 Member Posts: 981
    edited October 2014

    Hi Center, I had the ADH/ALH diagnosis 17 years prior to the DCIS diagnosis, so I guess you still need to be alert many years later.  Fortunately it was only DCIS, which is not invasive and easily treatable.  I didn't drive myself crazy over all those years, just did the regular screenings (yearly), and didn't really expect to have any progression, since I'd had so many good years. 

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  • center1
    center1 Member Posts: 21
    edited October 2014

    Hi Ballet12.  Thank you for sharing.  Do you have any tips for how not to drive yourself crazy?  I've got anxiety disorder so it is hard for me to put worries in a proper place to begin with.  It's all I can think about and every time they call me in for an ultra sound, I almost lose it with anxiety.  I can't live like this.

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  • JayeGA
    JayeGA Member Posts: 82
    edited October 2014


    Hi, I'm not ballet12, but I have anxiety and I understand too well about the worry and anxiety. For me, I worried about just about everything Smile so I really had to make some changes. I've learned to listen to meditation and affirmation tapes every day, especially at bedtime. It calms my fears and helps me stay grounded. I walk a lot and try to stay active. I also talk to people I trust. All of those actions help me stay sane.  I'm going in this month for my annual recheck and in the year since my last recheck, I've worried very little about my breasts. I just plug into Louise Hay during the day and I'm good to go. Hope that helps.

     

     

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  • momoschki
    momoschki Member Posts: 682
    edited October 2014

    Not sure if I have any particular wisdom to share with you, but I wanted to let you know that I am in the same boat.  Dx'ed with ADH about  31/2 years ago.  I was a total basket case in the beginning, but better now.  Of course, I still get very wound up right before screenings every 6 months (I have a mammo coming up the week after next), but there are times now when I don't really think about it.  I think the passage of time helps somewhat.

    Like you, even before this, I have always been an anxious person.  I've tried therapy, meds (antidepressant and anti-anxiety), you name it.  My SIL had stage 4 BC, so that is always hovering in the background,, which isn't easy on many levels.  

    Part of what helps is having assembled a treatment team I have faith in. I found an oncoplastic surgeon who believes in breast reduction as a risk lowering measure and had the surgery.  This is not a strategy that a lot if other doctors recognize as legitimate, but my reasoning was that it couldn't hurt.  Also found an integrative oncologist who works with me to do everything possible to thwart future cancer and has me taking a number of supplements.  So- I think  that if you have a strategy and are actively involved in proactive measures it  is helpful... no guarantee, of course, but still better than doing nothing and expecting the worst.  Remember, 75-80% if women with ADH/ALH never develop anything worse.

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  • center1
    center1 Member Posts: 21
    edited August 2016

    I wish I could hug every one of you right now for chiming in with your experiences, advice and words of comfort. Thank you! I wish you all continued health.

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  • Lisa123456
    Lisa123456 Member Posts: 56
    edited August 2016

    Unfortunately, the risk associated with lobular hyperplasia doesn't decrease overtime. For example, for LCIS it's 1-2% per year for as long as one shall live.

    Regarding anxiety, some people have great results with mindfulness; Others just learn to accept their risk as part of life, like risk of a car accident or sudden heart attack. I'm sure there are many other coping strategies.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2016

    center----just about to respond and saw my response from nearly 2 years ago! Still doing well, 13 years out from diagnosis of LCIS., just had another clear MRI. In fact, my oncologist feels I don't need to stay on the evista and have MRIs any more (she's concerned about possible long term affects) ; just wants me to continue with the 3-D mammos (tomosysthesis), which apparently work well with me as I don't have any breast density at all (thanks to 5 years of tamoxifen, an added benefit !). Hope this finds you well,

    Anne

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  • Tmh0921
    Tmh0921 Member Posts: 714
    edited August 2016

    I was diagnosed with IDC almost 17 years ago (in December), have been cancer free since completing treatment. I was diagnosed with ADH very close to my original tumor site in June of this year. I will be starting Tamoxifen again this week (stopped after 2.5 years the first time to have a baby). I'll be going back to having mammograms/ultrasounds every six months.

    The obessivness and anxiety gets easier over time. If not, but if it gets to be too much consider getting help - holistic or conventional. I myself have taken anti-depressants and anxiety meds at various points over the years, and it's been a huge help when needed

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