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Just diagnosed - IDC no special type w/DCIS Grade 2

barbojoy Member Posts: 47
edited March 2022 in Just Diagnosed

Hello community!

I had a mammo & Ultrasound 6/4- BIRADS 5 - masses and calcifications, left @ 9:00 and 12:00

Needle Core Biopsies 6/10. Confirmed IDC grade 2, nuclear grade high, solid and cribriform, necrosis present, E cadherin present. 2 lymph nodes tested (axilla and supraclavicular) both negative.

MRI 6/18: confluent mass and non-mass enhancement encompassing both biopsy sites 12:00 and 9:00 -- Total extent: 11.0 x 2.8 x 2.6 cm and involving the left nipple.

Now.. I meet with oncology and surgery on Tuesday, 6/22. They'll do bloods such then and I suppose I'll get more info then?

Anyway, I started having a flaky, bleeding left nipple around March of 2020 that wouldn't heal. I went to my PCP and told her that I'm really worried about this. I have a history of abnormal but non-tested suspicious mammos on left. She referred me to a breast specialist in May 2020. I told her that I feel like my nipple is dying. She did a punch biopsy of the nipple in office that same day and it came back negative. She told me to use cortisone. Fast forward to May 2021, my nipple never healed and has continued to look worse and worse. I went back to that breast specialist. She prescribed me RX cortisone and referred me to a dermatologist.

I had my annual mammogram scheduled anyway, so I scheduled that for 6/4 above and -- you know the rest.

Now... the cancer I have that involves the nipple seems to be pretty large by those measurements provided on my MRI report.

Turns out, that the surgeon used by our local cancer center is this same breast specialist who twice told me to use cortisone to cure my nipple. :(

I am really struggling at the idea of sitting across from her in an office on Tuesday and having her deliver her opinion or expertise on how I should proceed with my treatment. Does anyone have words of wisdom or some alternative perspective that can help me stay open minded and hear whatever it is she has to tell me on Tuesday?

I really appreciate your advice. I've looked at several posts in the community and so many of you have similar initial diagnosis and/or stories. Your experience is truly meaningful to me!!

Thanks in advance.


  • salamandra
    salamandra Member Posts: 703

    Oh man that really sucks.

    Can you bring a friend? A brash unabashed friend who will say whatever you're thinking but can't bring yourself to say?

    Also, record the conversation. Let the doc know you are doing it. You can say it's to help with your recollection. It can't hurt to have.

    Finally, it's never too early to arrange a second opinion. If you explain why, your local center might help you do it, or offer you a different doc. You can also get remote consultations these days by sharing your imaging. Insurance generally is very happy to pay for a second opinion in cancer cases because it's cheaper to get things right the first time.

    I think you will get a sense of her at the meeting. If she acknowledges that she was mistaken and explains what she has learned from it and how it will impact her going forward, and you feel a good rapport and confidence, it can be a good sign that she is an open minded doctor. No doctor is perfect, but one who is always learning and willing to talk about it is a gem. Anything less... if she tries to pretend it didn't happen, if she is overly defensive or refuses to discuss or just insists that followed professional guidelines, if she is not willing to engage with you as a human being, I would go straight to the second opinion doc.

    Mostly, bring a friend and make sure you are recording. Whether your friend says a thing or not and whether your recording ends up being any use or not, I think that doing those two things will help embolden you and make the experience easier.

    Good luck!!

  • barbojoy
    barbojoy Member Posts: 47

    Thanks, Salamandra. That's really good advice. I am uber emotional right now and I fear that I'll just cry, so bringing someone else makes a lot of sense to me. I started looking online this AM about those virtual second opinion options as well. It looks like insurance won't cover it, but I really like the idea of an MD Anderson, or Mayo Clinic or Cleveland Clinic 2nd option. My instincts tell me that I should be aggressive in my treatment plan- ie: dmx (I'm presuming they'll recommend left mastectomy based on findings). It's easy to get ahead of myself, as I'm sure you well know.

  • LivinLife
    LivinLife Member Posts: 301

    I definitely would go with a second opinion!! Even if your first opinion surgeon knows how to do surgery : ) how comfortable will you be in her hands....? This is such an unfortunate situation for you! Sounds like you're keeping that appointment so please let us know how it goes.... Hoping you have a good friend who can go with you.... Sending support and gentle hugs...

  • SparkleTBD
    SparkleTBD Member Posts: 10

    Oh my goodness... do not go back to this surgeon. You need to be able to trust your healthcare team and communicate with them. You have some very important decisions coming up that require you to be clearheaded.

    There are way too many breast surgeons/specialist out there to settle on this one. Find someone who takes your complaints seriously. if you want MD Anderson go and do it... have no regrets at the end of the day.

    Also... everything that I have regretting doing on this BC journey.... I knew in my heart I was uncomfortable (either with the dr or the procedure). If you have that feeling don't ignore it. Usually you are right!

    The Radiologist told me that my DCIS was a complicated cyst and I could wait on the biopsy - graded it a 4a. They were so certain and smug and told me I could wait until after the holidays. The biopsy was "just a formality" because they couldn't prove it was a complicated cyst from the imaging.

    Well guess what... they were very wrong! And the dr didn't even call me to give me the diagnosis... had the nurse do it. And I will never use them again in the future. Fortunately it was "just DCIS" but it could have been worse.

  • barbojoy
    barbojoy Member Posts: 47

    @sparkleTBD thank you for the reassurances. You are right, I know that I won’t ever feel fully confident in this surgeon. I know/know it. I am kinda caught in this network cancer treatment loop where they are determining all the players so, i think I still have to follow these early steps. I’ll still meet with her but you guys are helping build up my confidence in selecting someone else for the procedure. Thank you!

  • mommamonaster
    mommamonaster Member Posts: 13

    I don't usually post, but had to come out of the shadows and share my experience to help boost that confidence.

    The surgeon I was initial refered to is one of the most respected breast surgeons in my city. I didn't like her from the start, but figured I could deal with it for the sake of having a great surgeon. I went back after my first surgery, and she "misrepresented" the results of my procedure. Scared the shit out of me by leading me to believe one of my samples was found to be full of cancer, when what was found was a .7mm area that was a bit too close to the margin. When I got home I read my path report and it was nothing like what she said. At my next appointment with my MO she confirmed what I was reading in the path report. I asked her what other surgeons were associated with the cancer center and *immediately* started the process to change to the surgeon she recommended. I love him. He is just as qualified as the other surgeon, but all around a better doctor.

    It's okay to stop, take a breath, and redirect. Go to the appointment, get copies of all your reports, and call the cancer center you want to work with about recommendations.. Let the surgeon you're seeing know that you don't wish to continue with her, and it should be good with insurance because you aren't getting a second opinion, you're transferring your care. Always double check with your insurance provider to make sure, but I didn't have any problems with mine doing it that way.

  • Esther01
    Esther01 Member Posts: 229

    Hi Barbojoy,

    So glad to see the kind, wonderful advice these amazing ladies are giving you. I agree 100%. I just want to mention, I know at first it feels like you've been hit by a truck, but the feeling does pass and sooner or later we find our sea legs and things do begin to even out.

    I did not go to the surgeon my PCP recommended. I could not even get an appointment. She did not have time for me as a new patient. I chose a different clinic under my plan and sent myself there. Within three days, they had set up a team for me and finished all of my pre-treatment exams (MRI, Pet/CT, etc.). By the time that first doctor had time for a consultation, I was already two weeks into treatment!

    I know it feels like things are moving very fast and decisions need to be made. You do get personally make your own decisions, and if something is recommended to you that you are not comfortable with, you can make your own decision about continuing with it or not. I hope that you will receive wonderful wisdom from the oncology surgeon that you choose for yourself. I never connected well with my medical oncologist but had great rapport with, and respect for, my surgeon (I'm only 8 days past my surgery right now).

    I know I did a few things differently that were outside the tight boundaries drawn by my mainstream oncology team. I sought out a really good integrative MD because if I was growing unhealthy cells, I wanted to know how to make my body hostile to them and start fighting them and growing healthy cells instead. (I'll share below what she had me do, because it has had great results for me).

    I really appreciated my oncologists for their creativity in my treatment. My tumor was ER+/PR+/HER2- (hormone positive) and instead of rushing me straight to surgery they gave me neoadjuvant (i.e., advance) hormonal therapy for several months with tamoxifen (I'm pre-menopausal) to shrink it down. They did an ultrasound every 4-6 weeks to check on it, and it was shrinking. This is what they are doing a lot in Europe but not as much yet in the U.S. From the studies I read, most of which are on post-menopausal women, the sweet spot for when the pre-surgery hormonal therapy is done can be about 7 months. I had my surgery six months after starting hormonal therapy. I had several involved nodes and while those did not shrink much over those months, my surgeon was able to get all of them out so I did not need an axillary dissection, just a sentinel node biopsy.

    Before I forget, here is what my wonderful integrative doctor put me on when I was first diagnosed:

    - Water (half my body weight in lbs, in ounces daily. So, 116 lbs = 58 oz)

    - Digestive enzymes (OrthoDigestzyme) for when I eat (she thinks my blood type A was a main cause of my cancer. A's don't digest as well, so this began helping me get nutrients from my food)

    - Vitamin D (w/ K2) 10K IU to get me up around 85, and she monitors me every few months.

    - Iodine 12.5 mg daily ( for some reason cancer pts are often deficient in both D and Iodine and I sure was)

    - Juice Plus (to lower my fructosamine and not feed cancer cells)

    - Low carbs (to lower insulin as cancer cells have insulin receptors)

    - I quit sugar and alcohol entirely to maximize starving the cancer cells

    - Systemic enzymes early a.m. and p.m. on empty stomach (VitalzyXe) clears out cellular debris, fibrin, lowers inflammation, and I think they help uncloak the coating on cancer cells . These are huge for cancer patients, and after any type of injury or surgery. They clear out scar tissue even after many years.

    - There's more but this just gives an idea of the types of ways an integrative doctor can come alongside a patient going through cancer treatment. They do more specific labs than any my PCP ever thought to order.

    Early on my brain was spinning and trying to absorb the information coming at me from so many sources. Over time, my personal path became clear. I trust and pray the same for you.



    Feel free to PM me. You have lots of support here in this wonderful community!

  • barbojoy
    barbojoy Member Posts: 47

    Thank you mommamonaster and Esther01. Thanks to all of you for your feedback.

    Met with the surgeon today. Took my husband with me. She started the consult saying she was sad to see me there and that she's glad that I had the follow-up mammogram. She said when she saw my name on the clinic schedule, she went back through to see if she missed anything. She said she's still not 100% confident that the problem with my nipple is related to the cancer.

    She said there's no point in biopsy for the nipple again (we did one over a year ago)- she said that it wouldn't change my treatment or her recommendation. She said it does present as pagets (WHICH IS WHAT I THOUGHT IN MARCH OF 2020, BTW)... but she went on to say that the treatment plan is the same regardless... ?

    Her initial recommendation was lumpectomy. Then she eased into mastectomy for left. Then as we talked more, she ultimately wrote down/recommended double mastectomy due to my age (46), my HERS2+ an the growth within a year's time.

    I explained to her that I want to get a second opinion. She said that's fine, but asked me to agree to notify them quickly if I choose to go elsewhere. They don't want to hold surgical spot for me, if I'm going to back out.

    I called a different group/hospital network when I got home and have a nurse navigator appointment with them on Thursday, then will have a consult with one of their surgeons for second opinion.

    All of you who shared an opinion or advice on this helped me to advocate for me. :) Thank you!!

  • LivinLife
    LivinLife Member Posts: 301

    Good for you!!!!

  • SparkleTBD
    SparkleTBD Member Posts: 10

    The surgeon may have not "missed anything" and followed protocol exactly. I doubt she/he would tell you if they did miss something. LOL

    The real question is will you feel comfortable after the surgery if you have complications or need to talk to her. Can you really communicate and feel at ease?

  • cangold
    cangold Member Posts: 35

    I'm also glad your looking at getting a second opinion for a BC surgeon. I was able to get an excellent BC surgeon by asking the referral manager at where i had my MRi & biopsies.

  • cangold
    cangold Member Posts: 35

    I can't believe it's been a year since my BC surgery. I'm doing good, just need to exercise a little more lol.

  • rosebush
    rosebush Member Posts: 1

    thank you so much share your detailNerdy