Baystate (MA) Breast and Wellness? 2nd Opinion?

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reflect
reflect Member Posts: 576
edited February 2016 in Waiting for Test Results

Hi, I'm 6-7 weeks into testing for suspicious mass/es and am being referred to Baystate Breast & Wellness, who have reviewed my scans (mammmos, u/ss, MRI, sterotactic biopsy) and are recommending the exact same test I just had (ultrasound guided biopsy) which failed to hit the biggest mass. I have really large breasts and I'm afraid they'll miss again. Leaving me another $250 out of pocket and another week without diagnosis. Anyone have any idea why they might do this? Besides the arrogance of thinking they are better than the first radiologist (maybe they are?)? Surgeon orginally said it's gotta come out anyway b/c of ADH. So why not--pardon the pun--cut to the chase?

Anyone know anything about Baystate Breast? Should I have my stuff sent to Dana Farber or MGH instead?

Going mad with waiting.

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

    Hi reflect:

    I was initially diagnosed at a regional hospital in metro Boston, with a comprehensive breast health center. I wanted a second opinion, and my husband's work had a program which directed me to MGH.

    The initial recommendation was for unilateral mastectomy. The second opinion at MGH included a review of all imaging from the first center, pathology slides from all biopsies (benign and malignant), related reports, and advice regarding treatment. I was mostly interested in confirming the recommendation for unilateral mastectomy plus sentinel node biopsy (SNB) (due to widespread DCIS), so I was surprised when looking at the exact same mammograms from the first center, MGH recommended a further diagnostic mammogram for a closer look at a particular area on the other side. That led to another biopsy, diagnosis of bilateral breast cancer, and change in treatment plan to bilateral mastectomy with SNB. I sought treatment at MGH.

    Imaging is a science, but my experience leads me to think that the experience, skill, and judgment of the radiologist interpreting the result is important. Imaging is a key component of diagnosis and proper surgical planning.

    Many recommend seeking second opinions or treatment from an NCI-designated Cancer Center, and Dana Farber is one:

    http://www.cancer.gov/research/nci-role/cancer-cen...

    If you go with your local/regional facility, you may continue to wonder for years whether you should have sought advice from Dana Farber or MGH, because they are considered by many as centers of excellence. Which kind of answers the question in my mind, since you are already wondering.

    BarredOwl

  • reflect
    reflect Member Posts: 576
    edited January 2016

    Thank you BarredOwl,

    I just saw your reply, also just got off the phone with my mom (2 x bc and retired RN).

    Since I don't even have a diagnosis yet, I'm thinking perhaps I should ask for an excisional biopsy (of all lesions, on both breasts) and then go to DF for an opinion. I can not see why they want to repeat the same failed test (even with a better radiologist) when in the end, I think I have to have the excisional anyway. (There is ADH in there).

    Would there be any benefit in asking for a second opinion at this point, do you think?

    I'm going to talk again to the nurse navigator at my original surgeon's, and maybe the one at the new referral. Unless they offer a good reason to repeat, I'm going to ask for the excisionals. Unless they think a second opinion from DF would be good now.

    I am getting truly overwhelmed.

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

    Hi Reflect:

    A lengthy workup, with repeated worrying and waiting can be very difficult. Take a deep breath, and re-group. Do not hesitate to ask the questions you outlined above, or to request that the radiologist speak with you.

    The navigator at Baystate is not likely to recommend you seek a second opinion at another (competing) institution. She is likely to be non-committal about it, or simply say that she can assist with sending materials, if that's what you want (That is a quote from mine, lol).

    These are some things to think about and maybe follow-up on in your inquiries. I do think it would be a reasonable choice to seek a second opinion at Dana Farber at this point, prior to any additional procedure (especially if you may seek treatment at Dana Farber) or possibly after the pathology from the proposed ultrasound-guided biopsy is available (but prior to any surgical procedure).

    Please note that I have no medical training.

    First, an interventional radiologist may indeed be both more skilled and more experienced at doing ultrasound-guided biopsies than a general surgeon (e.g., more experience interpreting imaging and planning biopsy sampling strategy, more experience and success using the devices used to collect tissue, etc.) This is a benefit of working with specialists.

    If further biopsy were warranted, then the pathology might reveal that excisional biopsy is not really the next best step (see below).

    Also, if you don't trust the recommendation regarding the biopsy, are you comfortable seeking care (surgical excisional biopsy under anesthesia) at that facility?

    From other threads it sounds like you had a routine screening mammogram, diagnostic mammogram, ultrasound; mammography-guided stereotactic first biopsy; MRI; ultrasound-guided second biopsy.

    Multiple masses on the right, including a spiculated mass noted on MRI.

    A suspicious mass on the left (by MRI).

    Biopsy Results:

    First (mammography-guided): ADH with some suspicion for DCIS;

    Second (ultrasound-guided): Benign; possibly missed area of concern; then referred to Baystate;

    You were considering genetic testing at some point due to family history.

    Presumably, the general surgeon referred you to Baystate in view of the need for expertise beyond his, and it seems that Baystate believes further biopsy is indicated before finalizing strategy. Hopefully, the team you are working with at Baystate includes experienced interventional radiologists (whose practice focuses on biopsy-type procedures) and a specialist breast surgeon (whose practice focuses almost exclusively on treatment of patients with breast cancer). If not, then that would be a reason to consult Dana Farber at this point.

    Questions:

    (1) Were the first and second biopsies performed on the right side?

    (2) Were the first and second biopsies performed by the first general surgeon?

    Perhaps the benign finding was a surprise to him in light of the imaging, and as your case appears to be diagnostically challenging with multiple masses, he referred you to specialists at Baystate.

    (3) Is Baystate proposing a ultrasound-guided third biopsy on the right?

    This might reflect that the first surgeon did not successfully sample the area(s) of suspicion for some reason, which yielded benign results, despite significant suspicion from imaging. This does not seem unreasonable to me. Please confirm the basis and need for recommended biopsy with Baystate.

    This has been going on a while, and you are naturally wanting to cut to the chase. You are wondering why a further biopsy is needed and whether you could just proceed with excisional biopsy now. That is a medical question I cannot answer.

    I can say that proper work-up is critical to surgical planning and to avoiding an inappropriate surgical procedure and/or multiple procedures under anesthesia. The use of imaging to inform biopsy strategy, and a sound and thorough biopsy strategy, are needed to accurately determine what conditions are present and their estimated extent. This information in turn is needed to ascertain appropriate next steps (e.g., excisional biopsy or another procedure), surgical strategy, and inform decisions.

    In this regard, please keep in mind the difference between excisional biopsy and lumpectomy as noted by MelissaDallas in another thread of yours. An excisional biopsy for ADH (with suspicion of DCIS) is more of a "surgical sampling" procedure that is done to check a larger area around the core needle marker to ensure there is nothing worse lurking in the vicinity, with no attempt to achieve "clean margins".

    In my understanding, an excisional biopsy would not be appropriate if malignant disease such as DCIS were actually known to be present from biopsy (and not merely suspected). The additional biopsy may be recommended to get at this question.

    In contrast, a lumpectomy removes a known cancer, while attempting to achieve clean margins (and avoid re-excision procedures). If a lumpectomy were indicated (e.g., if a further biopsy found DCIS or other malignant disease), radiation might also be indicated, and other surgical options (e.g., mastectomy) would likely be discussed. That decision may be further informed by the results of genetic testing.

    There may be concern that the second biopsy failed to properly sample the targeted area and/or there may be another area(s) of concern that should also be targeted. This is not uncommon. These might explain the need for an additional biopsy. Please ask Baystate to explain to you (a) the basis for their recommendation of further ultrasound-guided biopsy on the right (and why is it a better approach than proceeding directly to excisional biopsy); and (b) what their recommendation is regarding the findings on the left; and (c) ask about the timing of a possible referral for Genetic Counseling for consideration of genetic testing.

    If you are not comfortable with the team at Baystate for some reason, or they are not communicating clearly with you regarding the basis for their recommendations, you may wish to seek a second opinon (and optionally seek care) at Dana Farber at this time regarding the pathology, imaging, and recommended next steps: further biopsy, excisional biopsy, or other action(s)?

    It may be beneficial to have the pathology slides (deemed benign, and deemed ADH with suspicion for DCIS) reviewed by pathologists at Dana Farber prior to undergoing a surgical procedure. In a recent report, disagreement among pathologists was greatest with atypia and DCIS:

    http://jama.jamanetwork.com/article.aspx?articleid...

    Again, since I am just another patient, please confirm everything with your doctors. I send you good vibes for obtaining the advice you need and finding the best path forward.

    BarredOwl

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

    Hi Reflect:

    Breastcancer.org has several pages on second opinions and examples of when to seek one. Please see this page. There are links to additional sections at upper left:

    http://www.breastcancer.org/treatment/second_opini...

    Examples of when to get one: http://www.breastcancer.org/treatment/second_opini...\

    BarredOwl

  • reflect
    reflect Member Posts: 576
    edited February 2016

    BarredOwl, thank you so much for all the time and care you have given me. I am very moved and your summary is accurate and helpful. I will reread later today during my break at work prior to calling Baystate. You are correct that the most recent biopsy of the most worrisome mass did not hit the target (per the radiologist). (And, it was the radiologist who did this u/s guided biopsy.) Reminding me of the distinction between excisional and lumpectomy is probably my answer: if they can dx via core biopsy, we may proceed directly to surgery to remove all (hopefully).

    Again, thank you so much for all your careful, thoughtful work. I will post again with next steps when I know them.


  • Ddw79
    Ddw79 Member Posts: 533
    edited February 2016

    I am also in MA. I sought a second opinion at Dana Farber . In my case sadly I guess was same as first at Newton Wellesley. I am not familiar with Baystate Wellnes

  • reflect
    reflect Member Posts: 576
    edited February 2016

    Thank you all for your thoughtful words. Baystate Breast & Wellness called me on Monday morning and told me they had decided not to charge me for any repeat procedures I had done. (My original hospital is a part of theirs.) This was surprising and helpful of course. I spoke with the supervisor and she was helpful regarding the need to repeat procedures.

    So, I did go on Tuesday for 3 hour appointment, which ended up: more mammos (for locations of marked areas), an ultrasound during which radiologist decided to do fine needle biopsy of two nodes which were somewhat enlarged. He then decided that my two most suspicious lesions would be best approached through stereotactic (mammography guided), so we did that. They were very professional and kind and it took a very long time but they believe they have finally biopsied the right location.

    This is good, and I hope to have some more definitive results by tomorrow. Then I can get going on a plan. They have said the ADH needs to come regardless, and we'll see what else, if anything. I am concerned about the addition of nodes into the picture, but I am just waiting for results and trying not to worry. I may indeed get a second opinion after results and treatment plan are presented.

    Thanks for all your care and concern, it helps so much.

    Diane

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

    Hi Reflect:

    Thanks for the update and fingers crossed.

    BarredOwl

  • reflect
    reflect Member Posts: 576
    edited February 2016

    Hi BarredOwl,

    Got my call this morning, it is IDC, multifocal, so....mastectomy and I will ask for BMX as there is a suspicious lesion in the other breast also. No word on the nodes yet. At least I know what I am dealing with, now for the many steps ahead I suppose. Meetings next week with surgeon and PS. Thank you so much for your help so far.

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

    Hi Reflect:

    I am sorry to hear this news. I am hoping the nodes were just reacting to the recent insult of previous biopsies.

    BarredOwl

  • reflect
    reflect Member Posts: 576
    edited February 2016

    Thanks, I am also hoping the nodes are not involved. Meanwhile will begin sorting things out at work so someone can take over my classes and other responsibilities for a while, and get the house sorted out too.

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