Pathology came back ADH - Need Lumpectomy

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Edel0224
Edel0224 Member Posts: 22
edited October 2016 in High Risk for Breast Cancer

Hi everyone,

Hope you don't mind if I hang out here. I just received the pathology report from my needle biopsy. ADH was found with a possible papilloma so I am waiting on an excisional biopsy to rule out cancer. I'm 31 years old and the biopsy was done based on clinical findings but was never seen on multiple ultrasounds and a mammogram. It's been hanging out in my breast for a while now, too. I had my mammo in January (Birads 1) and was told nothing was found and to follow up with a breast surgeon due to the clinical findings. There was no sense of urgency so I took my time making an appointment with a surgeon.

I have a few questions.

1. Is there anything about my age that ups the risk of this lump coming back cancerous?

2. Is ADH common in my age group and if it comes back benign, is it possible I may need to take tamoxifen?

3. I understand that there is roughly a 20% chance that the ADH may be upgraded, but if it is, is it likely to be in an early stage? I am petrified that if this is cancer that this was not found early and I've heard that cancer can be more aggressive in those under 40. From a clinical and imaging standpoint, there are no other areas of concern in my breasts. My breasts are mostly fatty with scattered density.

4. No masses have ever been detected on imaging. Does this infer that if it is cancerous, it might be early?

I know you all are not warlocks or wizards, but I am trying to come back down to earth and keep my anxiety in check as I'm anticipating it's likely a sold month before I will know anything definitely between scheduling the lumpectomy and getting pathology back. I appreciate any advice.

With kindness,

edel

Comments

  • Tmh0921
    Tmh0921 Member Posts: 714
    edited October 2016

    Hi

    I was diagnosed with Breast Cancer when I was 27 (17 years ago in December), and just this year was diagnosed with ADH in the same breast after a mammogram revealed Microcalcifications.

    Your age doesn't pre-dispose you to the ADH coming back with a more serious diagnosis of cancer. The finding of ADH does mean however that you are at higher risk for breast cancer down the road and you will be monitored more closely. Tamoxifen isn't a given, it will be something that you and your medical team consider along with your risk profile (including family history, personal history, etc.)

    If you have no palpable mass, and no mass detected on imaging, it's highly likely any cancer found (more than likely there is no cancer) would be early stage. Again - 80% chance that there is no further findings other than the ADH so take a deep breath.

    Cross the bridge on aggressiveness IF you need to, most likely you won't have to worry about it. I myself had a relatively non-aggressive cancer despite my young age at diagnosis. :)

    Tracy


  • Edel0224
    Edel0224 Member Posts: 22
    edited October 2016

    Hi Tracy,

    Your reply means so much to me. You have made me feel better. I do have a palpable thickening, not a mass persay.

    The truth is, I think I have had bad care up to this point. The surgeon's motives are in my mind questionable. He gave me 50/50 odds of malignancy and refused to explain the pathology report to me. I had to bring up the word papilloma to him, he didn't even mention it to me even though the pathology report stated that the aspirate was suspicious of a papillary neoplasm. He told me he had "no idea" why the findings were atypical. From what I have read, the presence of a papilloma would never warrant benign results (even though the majority are benign) because excising them is standard of care regardless of whether atypical cells are present.

    He only would say that it could be cancer so we have to have a lumpectomy (which I suppose is true). He also mentioned a plastic surgeon being there at the time of the lumpectomy to do reconstruction (up to me) and that he would essentially be able to give me a "free breast lift" that would be billed as reconstruction. All felt very shady, and I have a contact at Johns Hopkins that confirmed it is highly unusual to a. need or b. suggest reconstruction at the time of a surgical biopsy. The breast surgeon told me the plastic surgeon being there would mean he could "take more tissue" which also gave me pause. Wouldn't you be taking the tissue you need to make a diagnosis and nothing more? At this point, shouldn't his concern be detecting cancer only? I am not worried about aesthetics. He also was rather unkind to me and told me I was frustrating him, so I spent the last week seeking second opinions. I have an appointment at MSKCC on Friday morning, so I hope my fears will be alleviated once I can talk to someone with my best interests at heart. It has been a tough week and I feel like I have had to scrounge the internet for information about what my pathology report meant. He kept things vague and played into my fears and I've been a wreck since.

    I am glad to hear you're doing so well and that your diagnosis wasn't aggressive despite your young age. It seems like there is a lot of information out there points to young = aggressive so my mind has been going wild. I really pray I don't get a diagnosis, and if I do, I hope it is early.

    Thank you again for your kindness. xo

  • momoschki
    momoschki Member Posts: 682
    edited October 2016

    Edel, I think you are absolutely doing the right thing by seeking out a second opinion. I agree that at this point, your BS's prior should be to remove only the suspicious area, as you said, to rule out any cancer that could be lurking. Remember that this outcome occurs only about 20% of the time.

    I was dx'ed almost 6 years ago. I still see my BS 2x year for some kind of imaging (we rotate mammos, US's and MRI's). This is another good reason to seek out another doctor, since you will be followed by your BS long term and you definitely want to establish a relationship with someone you trust and feel comfortable with. You have the right to ask as many questions as you like without your doctor complaining that you are "frustrating" him.

    I can't speak to the papilloma issue (didn't have that), but feel free to pm me if you have ADH questions or just need to vent. I think women with our dx fall into a weird grey zone: no cancer, but the high risk thing can carry a lot of anxiety, especially in the beginning.

    Let us know how you make out on Friday

  • trish01254
    trish01254 Member Posts: 128
    edited October 2016

    hi. I had two papillomas. First biopsy resulted in lcis. 2nd in dcis. Find a new surgeon and get that papilloma excised. The lumpectomy is not that bad. Take care and best wishes for benign findings.

  • Ddw79
    Ddw79 Member Posts: 533
    edited October 2016

    my experience too what Momo said.

    I definitely got a second opinion on ADH and I suggest you do .

    Facing this again next week . The anxiety

    Close to takes over my life in the week prior to imaging. Asking my doc for Xana

  • momoschki
    momoschki Member Posts: 682
    edited October 2016

    Ddw, after nearly 6 years of this 6 month thing, I am convinced that sadly, as the date approaches, drugs are really the only thing that helps. I don't think there's any shame in that. Wishing you the best for next werrk

  • Djabi53
    Djabi53 Member Posts: 184
    edited October 2016

    momoschki - I agree with you - drugs are the only way to get through the week before tests - and the week after is often difficult too - fatigue. Grateful for this group.

    Frankie

  • Tmh0921
    Tmh0921 Member Posts: 714
    edited October 2016

    Edel

    I agree with the others, you are doing the right thing getting a second opinion. Any doctor who doesn't want to sit and walk through things, go over results, answer your questions is not necessarily someone you want providing you care. You should feel comfortable with your medical team.

    Let us know how your appointment goes tomorrow.

    Tracy

  • Ddw79
    Ddw79 Member Posts: 533
    edited October 2016

    I think you are right Momo.

    I'm asking for Xanax.

    The worry seems to cloud everything .

    Thanks for the good wishes. Six years is a long time .

  • Edel0224
    Edel0224 Member Posts: 22
    edited October 2016

    Thank you to each of you who took the time to reply to me. You're all very, very sweet people.

    My appointment yesterday was a total 180 from my prior experience. The BS I saw was kind and clear and alleviated a lot of my fears. First of all, she couldn't find anything suspicious in my breast through clinical breast exam. She is speculating that the thickening is likely cyclical breast change or even postpartum (i'm two years post baby) since she couldn't feel anything concerning and i'm a week and a half past my period. She then ordered all new imaging (reg mammo, 3d mammo and ultrasound) which all came back clear as day with no suspicious findings.

    She said we need to take a step back, that we wouldn't be jumping into surgery, and said we would cross that bridge if we come to it. She spoke with me about my pathology report and explained that while the findings were atypical, the specimen was "paucicellular" which means that there weren't many cells, just abundant blood. She seemed to think the biopsy report could mean many things, and based on everything else, it's very unlikely I have cancer. So, the pathologists at MSKCC are going to reanalyze my slides (the other lab sent them over) and she said she was curious if they would agree they were papillary etc. She said that papillomas are very tiny, so they wouldn't usually cause a lump (and she didn't feel a lump anyway - just normal glandular tissue) so we will see. She also didn't seem convinced that my atypical findings were ADH. I imagine they'll call me sometime next week after their pathologists look at my slide.

    The FNA with the original surgeon was blind meaning he basically just extracted fluid in the area - not a specific known lesion and the findings don't really correlate to the other findings (no lump, clear imaging). It's worth noting that the original surgeon decided to biopsy my breast based on how they felt 6 days before my period. The actual biopsy took place 3 days before my period. I'm a lot less worried now. She mentioned an MRI if we have to go there, but I'm not sure if she thinks that's necessary. We'll see.

    Having good care is incredibly important. I went from a 50/50 chance of breast cancer with a lumpectomy needed as soon as possible to a low likelihood of cancer with surgery not necessarily happening in a week. Last night was the first night in weeks that I slept and didn't wake up feeling like my world was out of control.

    God is good!

    xo



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

    Edel----good thing you went for a 2nd opinion. she sounds very thorough and it all sounds like good news. Just be vigilant about your follow-ups.

    Anne

  • Tmh0921
    Tmh0921 Member Posts: 714
    edited October 2016

    Edel

    So glad you got a second opinion, the right doctors make all the difference.

    Tracy

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