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Topic: I do not understand what’s going on

Forum: Waiting for Test Results —

For members not diagnosed with breast cancer, but waiting for test results:  Biopsy, mammogram, ultrasound, or other screening tests. Waiting is VERY difficult but remember...

"Worry does not empty tomorrow of its sorrow. It empties today of its strength." -- Corrie Ten Boom

Posted on: Aug 3, 2020 09:54PM

ladybug92 wrote:

Hi,

So 8 or so months ago, i noticed clear nipple discharge from one breast. about 6 months ago, i had mammogram, ultrasound, mri, and 2 biopsies on same mass in left breast (irregular and measuring 3.2 x 1.3 x 1.7 cm). the results were PASH in the left breast and another likely benign mass in right (that wasn't biopsied) there was also nipple enhancement in left. I have very dense breasts but am BRCA negative.

I went for my 6 month follow-up mri last week and got a call the next day to come back for another mri guided biopsy this week. They aren't biopsying either mass but they are biopsying "central linear enhancement," believed to be one process with the nipple enhancement/discharge—what does this mean? Nobody really explains anything to me and i don't understand when i try to google. I don't feel comfortable asking the radiologist anything because I don't want her to think I'm crazy...I just want to understand what's going on in my body. This central linear enhancement is BIRADS 4, which from google i understand to be low suspicion of anything serious anyway, compared to 4c for the mass that turned out to be PASH. There was also a mass on my liver but they said not to worry. I know that when doctors start scans, they find lots of inconsequential things anyway.

Also, my left nipple discharge now sometimes forms a slight scab of dried blood on my nipple. But it's so minimal, so I'm pretty certain it's just from th PASH.

If anyone can explain anything from similar experience, i would appreciate it. I'm 28 years old and both grandmothers had breast cancer, one in old age and one in late 40s.

My mom is begging me to get a breast doctor to manage this but is that really something people do when they don't have cancer and aren't positive for brca genes? I'm so confused and out of my element. If someone could help explain what this jargon means, i would really appreciate it. I don't know if i could be worried, watchful, not worried and i don't know how to handle this from a management perspective re making appointments and acquiring a breast doctor.

I did have follow up with breast surgeon ~5 months ago and she said to leave the pash and not to worry about it because it would be unnecessary surgery, but I've read pash tends to grow.

Thanks for reading if you made it to the end of this post, and please share your experience and guidance if you are comfortable.

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Aug 3, 2020 10:34PM exbrnxgrl wrote:

Hi ladybug,

It sounds like you have a lot of anxiety over the unknown, which is quite normal.
I don’t know anything about PASH but regardless of what your breast concerns might be you should never, ever be afraid to ask a doctor about anything and everything that concerns you. A caring compassionate doctor will not mind and many are very happy to have informed patients who are an active part of their care and treatment You really should find a doc that you are comfortable with as you are the boss! It’s your body and your life 😊

As far as a breast doctor, I’m not quite sure what your mom means. An ob/gyn? I don’t know of a medical specialty that deals with non-malignant breast conditions, but there may be such a thing🤷🏻♀️. Lastly, you mentioned BRCA testing. Were you just tested for those genes or did you do the more complete panel that tests for 30+ genes?

Bilateral mx 9/7/11 with one step ns reconstruction. As of 11/21/11, 2cm met to upper left femur Dx 7/8/2011, IDC, Left, 4cm, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Surgery 9/7/2011 Lymph node removal: Left; Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Dx 11/2011, IDC, Left, 4cm, Stage IV, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Hormonal Therapy 11/21/2011 Arimidex (anastrozole) Radiation Therapy 11/21/2011 Bone Hormonal Therapy 6/19/2014 Femara (letrozole) Hormonal Therapy Aromasin (exemestane)
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Aug 3, 2020 10:44PM - edited Aug 3, 2020 10:46PM by ladybug92

Hi there,

You're right, i do have a lot of anxiety. So PASH is a benign condition, but i am worried about the central linear enhancement biopsy. I am not sure what that could be, and I've tried to figure it out but i didn't understand what i was reading.

I don't know what my mom means by a breast doctor either. She is also insisting i have surgery and trying to make surgical consults for me but i do not want surgery since it was not recommended by the breast surgeon i saw late last winter. I wish she didn't feel the need to be so involved.

Finally, I do not know if i was tested for all of those additional genes. But I do know I'm BRCA negative for both of those. Thank you for your response. I hope i can find a compassionate doctor who is honest. I used to babysit for my previous radiologist's child and when she was following my case, she kept assuring me there was nothing to worry about. Then after she retired she ran into my mom and I In the community and said she was shocked my benign PASH wasn't cancer as she was sure it would be malignant. I mean, I'm glad it was benign of course but i would just like more honesty from my doctors. I feel i can't trust them now.


Also, thank you for your reply. I see at the bottom of your post you are dealing with a heck of a lot and I wish you well on this journey. You are compassionate even though i am worrying eedlessly, and I appreciate that. :)

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Aug 3, 2020 10:46PM MinusTwo wrote:

ladlybug - Exbrn is right. You should always ask questions. And ask again if you don't understand. And maybe again. However the radiologist is probably not really the one to ask.

Who ordered the biopsies & the mammo & your MRI and other testing? This is usually the doc that would explain the results.

If that isn't working for you, your Mom is right in that you need to find a doc who can explain and discuss all your concerns. That might be a breast "specialist", who might be a surgeon - but also might be an OB/Gyn who sees breasts every day. Or maybe your town has a 'breast center'. But you do need someone more specialized than a primary care doc. And no, breast health isn't just about cancer.

Please come back & let us know what happens.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Aug 3, 2020 10:59PM ladybug92 wrote:

Hi MinusTwo:


I wish i had the confidence to talk to them and the trust that they would be forthcoming, without thinking I’m crazy. A nurse practicioner ordered the first mammogram for nipple discharge, and then breast specialist doing the mammogram said she felt a mass. They couldn’t see anything on the mammogram or ultrasound though because of my dense tissue, so they ordered an mri. I have never seen her since then, and so I’m not sure who is ordering the tests since then. I assumed it was a radiologist. They have a nurse call me after and say come in for this or that, but nobody talks to me about it. I do live in an area with a breast center, but I don’t know if any of what’s going on with me “qualifies” me to reach out to them when they have people with actual definite serious things going on.



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Aug 3, 2020 11:05PM - edited Aug 3, 2020 11:06PM by exbrnxgrl

ladybug,

Both of my daughters are older than you, 30 and 36. However, even at age 28 they would not have been happy if I was trying to manage their medical care. My older daughter is on the bossy side and she'd gladly try to manage my medical care 😂Take care.

Bilateral mx 9/7/11 with one step ns reconstruction. As of 11/21/11, 2cm met to upper left femur Dx 7/8/2011, IDC, Left, 4cm, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Surgery 9/7/2011 Lymph node removal: Left; Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Dx 11/2011, IDC, Left, 4cm, Stage IV, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Hormonal Therapy 11/21/2011 Arimidex (anastrozole) Radiation Therapy 11/21/2011 Bone Hormonal Therapy 6/19/2014 Femara (letrozole) Hormonal Therapy Aromasin (exemestane)
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Aug 3, 2020 11:10PM MinusTwo wrote:

ladybug - I'd start by making an appointment with the doc behind the nurse practitioner. It's my understanding nurses have to work under an MD. If that is a general primary care doc, I'd still start there since that's who ordered or approved the tests.

Of course they won't think you're crazy. All of us learn things every day and they will think better of you for asking and taking responsibility for your own health. You should get copies of all your test reports to keep from any docs you've seen. They are yours by right and you need them in your personal files. Even if you don't understand them, other docs you see later in life will.

That said, you may or may not get along with this doc - but don't give up. All of us are different and we don't always see eye to eye. Find someone who you can relate to and count on in the future.

Anyway after that, I certainly would want to see an OB/Gyn - who is a specialist in "all things women". No Matter what!!! In fact since you are hesitant about questions, you might want to look for a female OB/Gyn.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Aug 4, 2020 09:59AM mtspacekace wrote:

I am 38, and noticed a lump. I went to my regular NP who I have seen for my yearly checkup for 5 years now. She ordered A mammogram and ultrasound. Which was done about a week later. Immediately after those 2 tests, the dr which read them, said I needed biopsies and I was sent onto the breast health clinic for them. I had someone call me to make the appointment at the breast center. The biopsy was done about 2 weeks after the mammogram. (The breast center is a department of the regular clinic I go to.). After I had the biopsy, the nurse that was there when the biopsy was done called to tell me the results, about 10 days after the biopsy was done. Which showed cancer. I then had a nurse navigator from the breast center contact me to make all my appointments with oncologists and my team of doctors. My appointments were scheduled about 10 days later. Overall, from original mammogram to meeting with my oncologist was about a month.

I know it seems as if time is moving like a turtle and they should be moving along faster, I mean...they might be talking the “C” word and that’s serious!!! I know how you’re feeling, I felt the same way! It seemed to me like I was waiting 2 weeks between each and every step...but you need to trust your doctors...if you don’t...don’t feel bad about finding different ones! I absolutely love my team, and couldn’t imagine going thru this with anyone else behind me.

Advice: do not google. It does nothing but get your mind wandering and most of it ends up being false info that doesn’t apply to your situation. Go on and live life and once the dr know what is going on they will explain it in detail...if they don’t, ask a million questions until you are satisfied with what is going on with your body.

Diagnosed at 38. Dog mom. Wife. Rancher turned warrior, currently busy kicking cancers ass. Dx 6/3/2020, IDC, Left, 2cm, Stage IIA, ER-/PR-, HER2+ (FISH) Dx 6/3/2020, IDC, Left, 2cm, ER-/PR-, HER2+ (IHC) Targeted Therapy 7/6/2020 Perjeta (pertuzumab) Chemotherapy 7/7/2020 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 7/7/2020 Herceptin (trastuzumab)
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Aug 4, 2020 02:37PM - edited Aug 4, 2020 02:45PM by ShetlandPony

Ladybug, not getting your questions answered causes worry that can be allayed by a discussion with the right professional. In my opinion, the breast surgeon you saw before, and the radiologist, are the ones likely to be able to explain what is going on. They are involved in diagnosing and treating both benign and malignant breast conditions. GPs and PCPs not so much. It is perfectly reasonable to want to understand your reports and the recommendations, so nobody should think that is crazy. As far as your grandmothers, the one with premenopausal breast cancer could be of concern, and a cancer genetics specialist is the person to talk to about that, and what if any further genetic testing would be advisable. When you call to ask for a consultation or phone call, be polite and assertive with any desk person or nurse who thinks it is their job to keep you from talking to a doctor. When you call and when you talk to the doctors, try to reign in your emotions a little so they cannot write you off with “anxiety". For visits or calls, have a list of questions ready in order of importance. You have a right to have your tests, results, and recommendations explained to you.

Djmammo says the person who orders a test is responsible for explaining the results. But that does not mean you can’t consult whoever you need to consult.

2011 Stage I ILC 1.5cm grade1 ITCs sn Lumpectomy,radiation,tamoxifen. 2014 Stage IV ILC mets breast,liver. TaxolNEAD. Ibrance+letrozole 2yrs. Fas+afinitor nope. XelodaNEAD 2yrs. Eribulin,Doxil nope. SUMMIT FaslodexHerceptinNeratinib for Her2mut NEAD
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Aug 6, 2020 08:30PM ladybug92 wrote:

hi everyone,


I followed your advice and brought my list of questions in today. The doctor taking my biopsy samples was patient and responded to my concerns. I didn’t feel like I was being written off at all. So that was a relief!

I will follow up with biopsy results when I get them, but thankfully after my discussion with the doctor, I feel like it’s all going to be good news. It was really good to just talk to her about it and understand what these tests mean and whatnot.

Thanks to every one of you for your responses and support.



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Aug 6, 2020 10:01PM exbrnxgrl wrote:

That’s good to hear, ladybug! I never give medical advice but this is just general life advice. You are the consumer and your doctors are the service providers. Any doctor who doesn’t gladly answer your questions or treats you dismissively should be fired by you, the consumer! I’m keeping my fingers crossed for you.

Bilateral mx 9/7/11 with one step ns reconstruction. As of 11/21/11, 2cm met to upper left femur Dx 7/8/2011, IDC, Left, 4cm, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Surgery 9/7/2011 Lymph node removal: Left; Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Dx 11/2011, IDC, Left, 4cm, Stage IV, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Hormonal Therapy 11/21/2011 Arimidex (anastrozole) Radiation Therapy 11/21/2011 Bone Hormonal Therapy 6/19/2014 Femara (letrozole) Hormonal Therapy Aromasin (exemestane)
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Aug 6, 2020 10:01PM MinusTwo wrote:

ladybug - so glad your 'interim" news sounded good and that you liked the doc. That's a major hurddle.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Aug 10, 2020 05:21PM ladybug92 wrote:

hi, I just got a call from radiologist. I have a fibroadenoma, pash, scelorising adenosis (unsure of spelling), fibrosis?, a papilloma and one other thing i cannot remember. Good news is it is all benign! I will have surgery soon to remove the papilloma and then i can put this all behind me.

I am so relieved, and wish each of you the same good fortune.

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Aug 10, 2020 06:00PM - edited Aug 10, 2020 06:00PM by Beesie

That's great news! Good luck with the surgery for the papilloma. I expect it will be quick and easy.



“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Aug 10, 2020 06:52PM ShetlandPony wrote:

Thank you for letting us know, ladybug. You handled it, will handle the surgery, and then yeah, get on with life!

2011 Stage I ILC 1.5cm grade1 ITCs sn Lumpectomy,radiation,tamoxifen. 2014 Stage IV ILC mets breast,liver. TaxolNEAD. Ibrance+letrozole 2yrs. Fas+afinitor nope. XelodaNEAD 2yrs. Eribulin,Doxil nope. SUMMIT FaslodexHerceptinNeratinib for Her2mut NEAD
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Aug 12, 2020 09:57PM ralphisko wrote:

Ladybug I am glad to hear your results are benign! Great news!

I would recommend you find a breast health specialist to follow you and schedule your routine checkups with.

That provider will also be able to order further genetic testing and imagin

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