confused about diagnosis and next step

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markone
markone Member Posts: 3
edited July 2016 in Just Diagnosed

Hello - My 81-year-old mother a few weeks ago discovered a lump in her breast. She went to her primary physician, who suspected that it was cancer and referred her to a surgeon. The surgeon by physical exam also suspected the same, did a fine needle aspiration biopsy in his office and ordered a diagnostic mammogram and an ultrasound. We had an appointment to go over the results today. But the lack of details in the reports is surprising to me - both the fine needle aspiration and the ultrasound report basically conclude that the lump is suspicious of malignancy. There was no definitive diagnosis and no information about the cancer type, grade, etc. The lump is between 2-3cm.

The surgeon has given us a choice now to either do an open biopsy first or to immediately proceed with a removal surgery. The surgery choices given are modified radical mastectomy or lumpectomy with axillary lymph node removal (followed by radiation). We are beyond overwhelmed as to how to proceed. From the discussion with the surgeon, it seems that the type of cancer will not necessarily alter the surgery choice between mastectomy and lumpectomy. The surgery choice appears to be based more on other factors such as risk of needing multiple surgeries (where, with lumpectomy, you have greater chance that the cancer cells might not be completely removed with first surgery); avoiding radiation (with mastectomy if no lymph node invasion found from surgery), avoiding local recurrence (with mastectomy); preserving the breast (lumpectomy); and complication of surgery (mastectomy being a more major surgery than lumpectomy, thus carrying more risk). If the choice is not dependent on type of cancer, does it even make sense to do an open biopsy first?

Given my mother's age, I think one major consideration is to avoid as many surgical procedures as possible. So we are leaning towards skipping the open biopsy first if that's not necessary. But I am not sure what we might be missing from skipping that, and whether the information from an open biopsy is in fact necessary before deciding on the surgery option.

Thank you in advance for your input.

Mark

Comments

  • GraceB1
    GraceB1 Member Posts: 213
    edited July 2016

    I always recommend that you see a Medical Oncologist (MO) before you have surgery done. Get to know all your options. Surgeons almost always thinks surgery first but there might be better options for your mother. There aren't any cut and dried answers here and that was one of the hardest things for me to accept. Treatment is still very much an art and many choices are left up to the patient. Best wishes to you.

  • tgtg
    tgtg Member Posts: 266
    edited July 2016

    MarkOne--

    I am glad that your mother has you to look out for her and to ask very important questions about her diagnosis and treatment suggestions. I was diagnosed at 71, so I can empathize with her and you, especially about avoiding major surgery if possible.

    My first reaction to your post, given the details you included, is that you really should get a second opinion, from a team of breast specialists. My second reaction is that I fear that your mother may be a victim of "ageism"--i.e., the attitude that "she's 81, so what we do really won't matter much, so we don't need to do much"--an attitude that my radiation oncologist told me is, unfortunately, still present among some practitioners when patients are in their 70's and 80's ("The patient will die soon, anyway, so what we do does't really matter").

    I suggest that you get a second opinion because of the current team's attitudes about biopsy. While I am not a physician, I have read and learned about this disease, and all the literature (plus my own, and others', experiences) have revealed the fact that the ultimate final picture of the tumor is determined by the pathology studies done on the surgically removed tumor and the sentinel lymph node and this pathology report in turn sets the course for future treatment plans. An ultrasound-guided core biopsy (different from a needle aspiration) identifies a host of factors (HR and HER2 status, grade of tumor, type of carcinoma, for example), but the pathology done after surgery adds staging and sometimes identifies different characteristics from the ones in the the core biopsy report as well. Knowing whether your mother's HER2 status is positive or negative before any surgery can determine treatment options too--including pre-surgery treatment for a HER2+ tumor--so, yes, a core biopsy might reveal key information that you don't have now (and it is a simple and non-threatening procedure under local anesthesia).

    I also suggest a second opinion because of the surgeon's categorical statement that lumpectomy is followed by radiation, which is true in general. BUT in the past few years researchers have shown convincing evidence in the medical journals that ER/PR positive women who are 70 and older do not get much, if any, added benefit from radiation and do just as well as by following a course of anti-hormonal treatment. This research, which comes from such venerable institutions as MD Anderson and Harvard, has been reviewed here on the BCO site--but your guys seem to be unaware of it, and to me that's a red flag about them.

    Bottom line--I think you need more input from different breast cancer specialists, perhaps at a different facility. You would also be well advised to ask the surgeon who has seen your mother just how many breast cancer surgeries he does in a week, month, year--and how many of those have recurred and what kind of fellowship training he has had in surgery for breast cancer.

    Good luck to you and your mother on this journey--it is manageable, especially if you continue to ask questions and learn as much as you can. T.

  • Annette47
    Annette47 Member Posts: 957
    edited July 2016

    I agree with a second opinion. It’s not odd that the ultrasound would not give a definitive diagnosis, as imaging can only be suggestive. What I’m wondering is why they did a fine-needle aspiration (which gets fewer cells and therefore is less accurate) rather than a stereotactic biopsy which still uses a needle, but it is a bigger/thicker one and collects more cells allowing for a more definitive answer.

    You mother’s course of treatment will really be driven by her exact diagnosis and at this point you don’t really have one. For what it’s worth though, my mother had a mastectomy with no further treatment at age 76 and is doing well now, 4 years later. In very early stage cancer, as a previous poster mentioned, she might be able to skip radiation based on her age, but if a re-excision is needed, she would still need to proceed with that. Essentially you are taking a chance - easier surgical recovery with the lumpectomy (and most likely a sentinel node biopsy if they suspect invasive cancer) than with a mastectomy, but you do run the risk of needing a second surgery if they don’t get clean margins the first time. An experienced surgeon might be able to tell from the imaging and biopsy results whether they thought it would be difficult to be assured of clean margins (some cancers are more likely to be multi-focal and spread over a wide area than others which clump together better, but at this point you don’t even have really have that information.

  • markone
    markone Member Posts: 3
    edited July 2016

    Thanks so much everyone for the responses and advice so far. I do feel as if we are making a major decision without definitive diagnosis. But I also worry about putting my mom through extra steps and delaying treatment to end up at the same place with the same surgery options. It feels as if we are racing against time here. We will take to heart all the input here.

    So, generally, when biopsies are done pre-surgery to obtain a breast cancer diagnosis, what kind of biopsy should be done? Are core biopsies as mentioned above more common and preferred? Will they give us more information to help us make the surgery decision? What's the opinion on need for an open biopsy first (that's the option given by my mom's surgeon if we choose to not proceed with the removal surgery right away)?

  • BarredOwl
    BarredOwl Member Posts: 2,433
    edited July 2016

    markone:

    I second, third and fourth the advice above to seek a second opinion.

    Is she seeing a general surgeon (who does many different types of surgery) or is she seeing a breast surgeon, who specializes in the evaluation and treatment of patients with or at high risk of breast cancer as essentially their entire practice? The latter is preferred, and if you seek a second opinion, please find a breast surgeon specialist.

    Did you receive only a top-line summary of the pathology and imaging findings? If you are in the US, you are entitled to the complete copies of the original written reports of the pathologist and radiologist, and should request copies for your review. The office and/or medical records division should provide these to you on request or make them available via a patient portal.

    For example, a proper ultrasound and mammogram report will include a detailed description of what was seen, and assign a "Bi-Rads" score, which is a very rough estimate of the level of concern for malignancy. It will include an overall impression and a recommendation regarding further imaging, follow-up, and/or biopsy for use by the breast surgeon.

    Jumping straight to surgical treatment in the absence of a specific diagnosis or finding is unusual and risks over-treatment, which is highly undesirable in an 81 yr-old. This suggestion clearly warrants a second opinion.

    It is possible that the Fine-needle aspiration ("FNA") results were not clear or definitive, because of the small sample removed. If the FNA pathology was inconclusive, a further biopsy may be indicated, and the question is what type of biopsy as you asked: a minimally-invasive biopsy or a surgical biopsy?

    A suspicion of malignancy is just that, and a minimally-invasive biopsy could potentially show benign disease. In an elderly person, a minimally-invasive biopsy might be a preferred next step, rather than diving into a surgical (excisional) biopsy procedure. A second opinion will provide you with expert input and another recommendation on this important question.

    With something clearly viewable on imaging, ultrasound-guided or mammography-guided minimally-invasive biopsy is usually possible (e.g., core-needle biopsy). When it is not possible, there should be a reasoned statement as to why a minimally-invasive biopsy is either not feasible or not recommended. These types of biopsy procedures are very common, sample more tissue than FNA, and thus can be more successful in yielding key information that could inform the advice received regarding treatment recommendations, such as the presence or absence of malignancy.

    A minimally-invasive biopsy may reveal a condition that is not malignant, obviating further treatment at this time. Certain results might support a recommendation for an excisional biopsy alone (e.g., atypical ductal hyperplasia (ADH)), without lymph node biopsy and its risks. These are essentially "surgical sampling" procedures that are done to check a larger area around an established area of ADH or other condition for possible malignancy (e.g., DCIS, or invasive cancer).

    A minimally-invasive biopsy may reveal the presence of malignancy, and important details such as the type of malignancy (non-invasive or invasive), histology (e.g., ductal, lobular, etc), estimated size or extent of disease, grade, estrogen receptor (ER), progesterone receptor (PR) and, if invasive, then also HER2 status.

    In addition, if breast cancer is proven, in the case of certain types of invasive breast cancer, especially larger (2 cm or more) and/or HER2-positive or "triple-negative" (ER- PR- HER2-) disease, instead of proceeding to directly surgery, for various reasons, a medical oncologist may recommend "neoadjuvant" drug therapy before surgery (e.g., one or more of chemotherapy, HER2-targeted therapy, and/or endocrine therapy). This option (if indicated) would be lost by jumping immediately to surgical excision.

    At the end of the day, you do not have enough information and do not understand what you are dealing with and cannot make really an informed decision about next steps. Please seek a second opinion. If you are in the US, an NCI-designated cancer center can be a good choice. Otherwise, a metropolitan hospital with a comprehensive cancer center may be a good choice, and should have breast surgeon specialists on staff.

    http://www.cancer.gov/research/nci-role/cancer-centers/find

    Best,

    BarredOwl

  • BarredOwl
    BarredOwl Member Posts: 2,433
    edited July 2016

    Hi again:

    I have edited my lengthy post several times, as usual. For more information about second opinions in general, here is a link to the main site here with information regarding the second opinion process.

    http://www.breastcancer.org/treatment/second_opinion/why

    There are six separate sections (see e.g., menu options at upper left at the link above).

    BarredOwl

  • tgtg
    tgtg Member Posts: 266
    edited July 2016

    And a PS from me--don't feel pressured into instantaneous action! While it makes sense to act quickly once you and your doctors know what you are dealing with (which you don't know right now)--it is crucial to have as complete a diagnosis as possible first (which you don't have right now, since the only pathology information you have is skimpy, based on a very limited sample from the needle aspiration).

    Before rushing headlong into action, do get more information, preferably in consultation with another breast cancer team. Besides, in us older folks, cancers seem to grow fairly slowly (just like everything else that moves slowly in us), so spending a month or so getting fully and adequately informed is likely not going to shorten your mother's life--on the contrary it should produce the best possible treatment plan for her particular stats and tumor presentation, info that you certainly do not have now.

    As barredowl suggests, unless you live outside the US, you should have been given the paperwork (another red flag about this surgeon, by the way, if you are in the U.S.).

    Your second opinion doc should shed more light on the various types of biopsies and help you understand what's involved in each. One big advantage of the ultrasound-guided core needle biopsy is that the radiologist (or surgeon) attaches a titanium marker on the suspicious mass after taking all the material from it, and that titanium marker then enables the surgeon to locate the tumor during the lumpectomy and help him/her to cut out sufficient tissue around it to get clean (cancer-free) margins all around, which in turn eliminates the need for additional surgery for your mom to get fully clean margins the second time around. And if the mass turns out to be benign, that marker remains in place so that interpreters of future mammograms know that this mass has been evaluated.

    Lastly, before the surgeon starts the lumpectomy itself, he does an excisional biopsy of the sentinel lymph node (anywhere from 1 to 3 are removed, depending on what the radioactive dye shows) and it undergoes a quick pathology review immediately (the sample later undergoes a full post-surgical path study as well, to be positive that it is clean). So, for example, since the first node (the sentinel one) showed no cancer cells at all in my case, the surgeon left the other two alone--and having only one or 2 removed eliminates a lot of grief later on, by the way.)

    Best, T.


  • markone
    markone Member Posts: 3
    edited July 2016

    Thank you. I will ask my mom's surgeon (he's a general surgeon) more questions first, especially about the option of a minimally-invasive core biopsy. I will also ask my mom's primary physician about getting a second opinion and seeing an oncologist. Your responses are truly appreciated!!! You guys are wonderful.

  • msphil
    msphil Member Posts: 1,536
    edited July 2016

    2nd opinion is always a good idea i believe take care n we are here for u. msphil. idc stage 2 Lmast 0\3 nodes chemo rads n 5 yrs on tamoxifen

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