Got my results today, now what? Freaking out in Arizona

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LisbethS
LisbethS Member Posts: 145
edited June 2016 in Just Diagnosed

Hi,

I just got my results today from my biopsy. Not surprised it was positive being the ultrasound/mammo said I had a 1.6 cm mass with a rating of 5 on the Bi-Rad scale. This is all happening so fast, found the lump Sunday, mammo-U/S Tuesday, Biopsy Thursday, results today-Friday.

Diagnosis:

Right breast biopsy, 2 o'clock, 10 cmfn:

- invasive ductal carcinoma

- Predicted Nottingham Grade 3 (architecture 3, nuclear 2, Mitosis 3)

- Greatest dimension of involved core, 1.1 cm

- High-Grade Ductal Carcinoma in Situ, Solid and Cribriform

- Ancillary Studies

Comments: The in situ carcinoma comprises less than 5% of the lesional tissue.

I know that this is the most common form of breast cancer, and I know that grade 3 is not good, but don't know much beyond that. The ultrasound didn't show anything in the lymph nodes. The radiologist read me the results so I didn't have to wait until my doctor was available next week. So nice of her. I don't know what all the diagnosis means. I guess my next step is to find a surgeon.

Thanks.

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  • BLS
    BLS Member Posts: 31
    edited April 2018

    Hi lisbeth! I know it's a major shock and it can be horrifying. Most people do well once they have a solid plan in place. Find a great TEAM. You will need a surgeon, an oncologist and a Mental Health support group. Find out what TYPE and stage you are too. Ask for onco testing, mammoprint and KI 67 rate too. Get a binder and keep track of everything. Try to rest and remain calm. One day at a time and you will make it!

    Brandi

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  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited June 2016

    Hi Lisbeth!

    Sorry to hear you got the results you did. Where you go from here may depend on other aspects of your cancer. If it is HER2+ or triple negative (ER-PR-Her2-), your doctors might recommend chemo before surgery (neoadjuvant chemotherapy). If it is ER+Pr+Her2-, you may just do surgery first. Then, your medical oncologist (MO) should order an Oncotype test to determine whether or not chemo will be helpful in your case.

    So, you may be looking for a medical oncologist first (manages chemo) or a surgeon first. If radiation is determined necessary, you may need to find a radiation oncologist at some point.

    I'm sorry to hear you have POTS. I'm not sure whether that will cause complications or not. I do know that some chemos are gentler to the heart than others. In any case, your plan of action will probably involve some kind of surgery and some kind of systemic treatment (chemo or hormonal therapy).

    ((Hugs)) I hope your doctors recommend a plan of action for you soon.

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  • Kawigirl1260
    Kawigirl1260 Member Posts: 60
    edited June 2016

    Hi Lisbeth!

    Does your doctor or the radiologist have recommendations for surgeons? I agree, you need a good team. I have a breast surgeon, medical oncologist who provides counseling contacts, and a radiation oncologist. They meet weekly as a team to discuss all of their cases. And they keep my PCP up to date too. They were recommended to me by my radiologist.

    The more you know, the easier it will be. Both in regards to what exactly your dealing with and what the treatment plan will be. Being in limbo is the hardest part, whether you're waiting on test results, or waiting to create that plan, or waiting to meet with your docs. You have a great support system here. Lots of knowledge and experience, not to mention empathy and caring. We're all in this together and willing to help out where we can.

    Keep visiting here. Keep posting with your questions, concerns, and updates. And keep breathing........

    Peace to you!

    Pat

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  • LoveMyFamily
    LoveMyFamily Member Posts: 58
    edited June 2016

    I was recently diagnosed as well... I was in a tailspin when I found out (June 6) and didn't know what to do but felt such a sense of urgency to do something... my doctor was out that day, too, so I ended up calling (at home) a doctor I know in the area (used to be my primary years ago) and she gave me the name of a surgeon (and also called the surgeon's office and told them to call me to set up an apt)... does your doctor allow you to call him/her or page on weekends? It might be worth it to try to page him/her to get some kind of guidance as to the next steps. For me, the next step after the diagnosis was meeting with a surgical oncologist. Hopefully you'll soon be paired up with a nurse navigator at your nearest breast center (you can read more about them on this board -- mine has been so so supportive and compassionate and helpful regarding next steps (and also in helping me tell the kids without scaring them too much). I know all this seems crazy and chaotic right now... for me, too. You are not alone. Sending you good thoughts.

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  • LisbethS
    LisbethS Member Posts: 145
    edited June 2016

    I've been trying to find information about breast centers on this site, and can't find it. The radiologist gave me a list of doctors which I will start calling Monday morning. And I am hoping my gyn will get me a list too. I wish I knew how long it takes to get in to to see the doctor. Don't know if I should cancel vacation plans or not. Just don't know how urgent or fast things move or if they move faster when it is grade 3. I feel such an urgency to get the tumor removed or even a full mastectomy. I supposed everyone feels that way.

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  • dtad
    dtad Member Posts: 2,323
    edited June 2016

    lisbeth....IMO you should be treated at a university based teaching hospital. Hopefully there is one close by. Good luck.

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  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited June 2016

    Lisbeth,

    You can always google NCI-designated cancer centers, if that helps. When is your vacation? I took a vacation between my first and second chemo infusions with my medical oncologist's approval. Things usually move pretty quickly in the US if the cancer is invasive. Best wishes!

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