Need advice on ADH/PASH & follow-up plan from doctor

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knitgirl
knitgirl Member Posts: 10
edited June 2014 in High Risk for Breast Cancer

I just found out the results from my lumpectomy and they confirm the pathology from my core needle biopsy - ADH & PASH,lots of other benign issues, and no cancer.  I met with my doctor on Friday and am really not sure if the follow-up plan for me is the best.  I've been questioning whether or not to keep her as my doctor.  I'm very pleased that at this time, my test results say no cancer.  However, I'm in the high risk group with the ADH/PASH.  She told me that I just need a yearly mammogram and to continue my monthly self exams.  She wants me to excercise 5 times a week, diet, and not to drink or drink no more than one drink a week (no problem because I'm not a big drinker anyway)

I'm confused because everything I've read (not dr. google, but from reputable organizations - Mayo Clinic, Susan G. Komen, Johns Hopkins,) that I should be monitored closely - mammo/mri every 6 months, tamixofen for 5 years, etc...  When I asked her, she says that she doesn't do 6 month mammos/mri even on her cancer patients because the radiation is too high and is not good for you.  She is not recommending tamixofen because I don't have a family history of bc.  I feel like that eventhough I'm high risk - my monitoring is nothing more than what you do anyway - yearly mammo's and sbe.  She also told me that mammo's aren't great, but still need to be done.  Since my breasts are very dense and that I have ADH/PASH, the mammo is not going to be the best screening for me, but there is nothing else that is any better and my insurance most likely won't pay for mri's, even if I had cancer. She also added that the ADH/PASH is most likely throughout my breast.  The masses on my ultrasound measured 2cm and 1 cm, when the lumpectomy was preformed, my mass measured 5.5cm x 4.5 cm and they can't tell if it was two that grew together or one that grew big. I didn't think ADH/PASH grew that big - but I guess they do. 

She told me that I could even remain on my birth control pills - till I told her I was on a high dose because of my hormone/cycle issues - then she said I need to speak to my gyno about a hysterctomy... I'll be 41 in a few weeks and don't want anymore children, but this still seems drastic to me.

I also have unknown family history, but do know that most of my family has had cancer of some kind - she said I could get genetic counseling if I want, but she didn't recommend it.  Kind of gave me the impression it would be a waste of my time and wouldn't prove anything.

I'm still worried that they missed something - my little voice keeps telling me something isn't right. When I expressed that feeling to my doctor - she couldn't understand why I felt that way and told me I don't have cancer.  Now I'm wondering if I'm making this bigger than it really is or are my concerns/worries part of the normal range of emotions that one goes through when this is found. 

I'm more confused now than when I first met with my doctor.  Anyone out there who has ADH/PASH?  What has your doctor recommended?  Treatments, follow-up's etc...?  What has been your experience emotionally?  How do you cope? 

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  • Stix
    Stix Member Posts: 723
    edited January 2013

    Hi

    I was just diagnosed with ADH. I will have not chatted with my doctor yet- but will this week.  I have a history of DCIS in the other breast and that was diagnosed at about your age- 2.5 years ago

    But, what i do know is that you are considered at higher risk and I would get a second opinion especially on the monitoring and the birth control and if you should stop.  Usually your insurance will cover MRI's if you have ADH.

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  • ballet12
    ballet12 Member Posts: 981
    edited January 2013

    I had a diagnosis of ADH 17 years ago, and the only monitoring I had after that was yearly mammos and occasional ultrasounds.  When I had a stereotactic biopsy back in June 2012, I was again diagnosed with ADH, but the excisional biopsy showed DCIS, and I actually required two more lumpectomies to get clean margins.  Even with the DCIS diagnosis, my only follow-up plan (after radiation and possibly hormonal therapy--still about to do the rads), will be mammography.  I asked the surgeon about sonography, and she agreed, due to the dense breasts.  So, it'll be mammo and sono, but no MRI's after I graduate from a current cycle of MRI's monitoring a nodule in the other breast).  So, even with the DCIS, the only monitoring is the yearly mammo and sonos. Although I was initially worried about the ADH 17 years ago, that fear faded.  Now, I will be a bit more worried.  About the PASH, I don't really know, but from what I've read on these boards, it is considered a benign and not pre-cancerous condition, although someone just posted that they found DCIS next to the PASH on her biopsy, so who knows. 

    If you live in Maryland, maybe you want to get a second opinion at Johns Hopkins.  The nurse who is the Director of their Breast Cancer program is amazing, from what I see on the website.  She is the person who personally answers all the questions that are posed on their Ask an Expert site.  I do regret not going to a Cancer Center for follow-up after the original ADH diagnosis.  I was followed by a general surgeon.  If you can get to Hopkins for at least one visit, it's probably worth it.  And for the record, they'll probably also re-read your slides, and that will reassure you that you don't have more than ADH and PASH, as well.  Good luck.

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  • knitgirl
    knitgirl Member Posts: 10
    edited January 2013

    Thank you ladies... I think I just needed to hear from someone else who has gone through this that I'm not crazy and my feelings, fears, etc... are normal. 

    ballet12 - I do live in Maryland and am only a little over an hours drive from John's Hopkins. My only regret is that I didn't go to them for a 2nd opinion before my lumpectomy.  I've been on their website, emailed Lillie Shockney (her email was so kind and made me feel like someone understands was wonderful), and am planning on calling them for an appointment.  I will not go back to the surgeon that did my lumpectomy.

    Thank you ladies- hugs Smile

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  • ballet12
    ballet12 Member Posts: 981
    edited January 2013

    Good luck.  Let us know how it goes at Johns Hopkins.  I hope you will develop a treatment plan that makes sense, and which you feel secure with.

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  • marie5890
    marie5890 Member Posts: 3,594
    edited January 2013

    Knitgirl,

    Just wanted to add my .02.

    The ADH is something that you should be followed for. The PASH on the other hand is a B9 condition and doesnt increase your risk in and of it's self.

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