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Diagnosed ... but why didnt I ask these questions?!

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olympicmtgirl
olympicmtgirl Member Posts: 29
edited January 2022 in Just Diagnosed

I so appreciate this site and my pathology workbook! My cancer and confusion … not so much.

07/2021 Had a clear mammogram (heterogeneously dense breasts) and physician exam.
12/2021 Identified a lump in left breast. Super lumpy breasts so only identified when lying down.

Mammogram report: 5.0x2.5x1.3 cm

Ultrasound: may be two tumors
hypoechoic lobular mass, mildly vascular with non-circumscribed margins and a tail-like extension extending to within 10 mm of the nipple,
radiologist verbally said did not see anything in lymph nodes but nothing in report

Pathology: DCIS, ER/PR positive (strong), no invasive carcinoma identified so no HER2 testing
DCIS involves ducts and an intraductal papilloma

Both Breast MRIs – scheduled February (but may get in earlier if cancellation)

I was encouraged to make surgeon appointments immediately and assembling my question list from articles and posts on forum.

Wish I asked these questions when my doc called me with results but I am a delayed thinker! Will take them to surgeon but appreciate any insights (or prompts for more things I should explore)
1. Kind of freaked by speed and size of tumor(s). Do you ever know if it is fast growing or just hidden by dense breasts?
2. Why did they not look at right breast to confirm nothing there? (MRI will be both breasts)
3. How do we tell if in lymph nodes – just the ultrasound view is enough?
4. I am thinking my B cup and tumor size means mastectomy. I love gravel biking and swimming and worried about losing strength. Do I just ask surgeon best surgery for cancer removal AND muscle retention?

Thanks. Appreciate having you on this journey.

Comments

  • parakeetsrule
    parakeetsrule Member Posts: 605
    edited January 2022
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    Those all sound like questions for your oncologist! Your surgeon will simply perform the surgery your oncologist recommends. They won't remove muscle unless there's cancer in it, and that's pretty rare.

    Read through this page and the links, and it will help you figure out what to ask! https://www.breastcancer.org/symptoms/types/dcis

  • olympicmtgirl
    olympicmtgirl Member Posts: 29
    edited January 2022
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    Thanks for the link.

    In my town for DCIS, I have been told your primary care sends you to the surgeon and you get surgery, then you go to Radiation Oncology and you get radiation, then Medical Oncology for hormone treatment. I meet with the surgeon next week.

    At the regional center (Seattle Cancer Care Alliance) DCIS protocol at intake is to meet with the surgeon only and you don't go to Tumor Board (per the scheduler's description - my appointment in a few weeks).

    So my only person to ask questions is surgeon, unless I can get access to the Radiologist when I have the MRIs?

  • parakeetsrule
    parakeetsrule Member Posts: 605
    edited January 2022
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    Oh, interesting! I've never heard of that order before. I'm curious to see what others say!

  • threetree
    threetree Member Posts: 1,465
    edited January 2022
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    OlympicMtGirl - I saw the surgeon first and he ordered all of the initial scans, did the biopsy, etc., and then he referred me to the oncologist. I had gone to the UW ER, for another issue, but told them that as long as I was there, I also had a "breast issue" and could they render an opinion. They did an ultrasound in the ER and then referred me to the surgeon. After I saw the surgeon and had the biopsy and all the scans, he referred me to an oncologist at SCCA. A bit different from what you have described as protocol, but then our situations are different also. After seeing the oncologist at SCCA, I got neoadjuvant chemo, then surgery, then radiation, then the hormone therapy. I realize that you are dealing with DCIS, whereas I have IDC. My surgeon was wonderful and headed up the whole thing. He was my "rock" throughout my treatment and then he retired. If I were you, I would ask those questions of the surgeon and make good use of the surgeon's abilities. I'm sure you will have a chance to talk to the radiologist before you actually get any radiation; I think that's standard everywhere.

    ( I was just thinking of the Olympics the other day, because they are covered in snow right now.)

    Good luck to you!


  • olympicmtgirl
    olympicmtgirl Member Posts: 29
    edited January 2022
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    Thanks for your reply! I have only heard good things about SCCA (except its parking). Fortunately my partner is retiring this month so driving North for treatment is doable.

    Will hold my growing question list till I meet the surgeon ... and maybe she will answer them all or send me on to the appropriate resources.

    Olympics are my mountains - my dog and I are there every week!

  • minustwo
    minustwo Member Posts: 13,184
    edited January 2022
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    I would not have proceeded without meeting a medical oncologist before surgery. Even thought they didn't expect I'd need chemo. Surgeon's cut - that's what they do. the MO drives the bus to coordinate surgery, chemo, radiation, etc. Good luck.

  • beaverntx
    beaverntx Member Posts: 2,962
    edited January 2022
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    On the other hand, I have never met with a MO! My post rads treatment is followed by PCP and BS. On diagnosis, PCP referred to BS who operated and worked with the local oncology center for tumor board review and radiation. She prescribes the Tamoxifen I take and still follows me. PCP checks blood work, etc. The fewer doctors I have to see, the better!

  • minustwo
    minustwo Member Posts: 13,184
    edited January 2022
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    That's weird Beaver. I never heard of a surgeon prescribing Tamoxifen. Glad it's working for you.

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435
    edited January 2022
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    Patients with Stage 0 DCIS often don't see an MO until after surgery - that is common. In some cases, DCIS patients don't see an MO at all - that's much less common but in my years on this site, I've seen it happen. In those cases, the surgeon is responsible for prescribing Tamoxifen.

    Even with early stage invasive cancer, if the tumor is small, ER+ and HER2-, the patient may not see an MO until after surgery - I didn't and I know from this site that I am certainly not alone in that. Often MOs want the whole picture from the final pathology before speaking to the patient. The situations where an MO must be seen prior to surgery are when there is any possibility of neoadjuvant therapy, which might be considered when an invasive cancer tumor is large or ER-/PR-/HER2- or HER2+ or if there appears to be extensive nodal involvement.

    OlympicMtGirl, the description of your imaging does not sound like classic DCIS. Only about 10% of DCIS cases present with a mass. The unusual presentation might be because of the intraductal papilloma, or it might be because some invasive cancer is also present - invasive cancer is found during surgery in about 20% of cases when the initial needle biopsy diagnosis was DCIS, and I believe the risk may be higher when the DCIS presents as a mass. The MRI is critical and should be helpful in assessing the likelihood that some invasive cancer might be found. Nothing is ever certain however - a tiny microinvasion (as I had along with a huge amount of DCIS) likely wouldn't show up on any imaging.

    My suggestion is that if the MRI suggests the possibility of invasive cancer, at that point you ask for a consultation with an MO. Otherwise, with a diagnosis of DCIS, there is probably no need to see the MO before surgery.

    As for the size of the tumor, because DCIS cells spread out within the ducts of the breast, areas of DCIS tend to be larger than invasive cancers. That's just the nature of DCIS. So if your mass is all DCIS, the size is not a concern, other than the impact it may have on your surgical choices. Because DCIS is non-invasive, a large area of DCIS is less concerning and presents a lower risk than a small invasive cancer.

    Hope that helps!

    For more info on DCIS, read here: Topic: A layperson's guide to DCIS https://community.breastcancer.org/forum/68/topics/790992

  • olympicmtgirl
    olympicmtgirl Member Posts: 29
    edited January 2022
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    This really helps. I will spend time reading the links provided tomorrow and expanding my questions/plan.

    I want to be my best advocate and this points me in that direction.

    I am so appreciative everyone took the time to post. Enjoy your night!

  • threetree
    threetree Member Posts: 1,465
    edited January 2022
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    OlympicMtGirl - Just wanted to say a couple of things about SCCA that you may or may not know. One, I agree parking is not the best!$$ Two, SCCA as an entity is actually going away this spring/summer. It will be absorbed into Fred Hutch and then Fred Hutch will become the UW's cancer center, with some amount of limited autonomy from what I understand. Right now Fred Hutch and SCCA are related and Fred Hutch is the research arm, and SCCA the clinical treatment center. They will merge into one Fred Hutchinson, but will continue to have a research component along with a separate clinical component (the current SCCA). All will be UW essentially when the transition is completed in the coming months. I don't think there will be any real noticeable changes, however, for those getting routine treatment - you'll just see a UW Medicine sign on the building instead of an SCCA one.