NEW to discussion group....am I in the right place?

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dilloa
dilloa Member Posts: 16
edited December 2019 in Waiting for Test Results

Hello

I am actually writing on behalf of my 57 yr old wife, probably because I am more of a wreck than she is while we wait for results. This might be a bit long, sorry...but essentially...

My wife has been on the bi-annual screening program since she turned 50. In march 2018 an abnormal screening mammogram was returned. She was called back for a diagnostic mammogram which came back normal and recommendation was to resume screening at regular 2 yr intervals. 19 months into the 2 yr window, she felt a lump in the upper outer quadrant of her right breast...Fast fwd. to this week, one month since she detected the lump, and she was seen for a mammogram and ultrasound in a specialized breast clinic. The radiologist found a 2 cm mass and recorded a BI-RADS rating of 4c, which after looking this up, means 78% probability of malignancy. A biopsy was performed and we are now on the 10 day waiting game to get pathology results.

This all happened so fast and we are both a bit in disbelief, maybe wrongly assuming that the screening program was more effective. After all, we didn't think her fingers would detect a large lesion before a mammogram. there is no family history of breast cancer.

We are both very concerned and scared at the moment, and wondering how much trust we should but in the radiology report. I have been reading that there are some benign conditions that can mimic malignancies in imaging, but with a BI-RADS rating of 4c, should we just resign ourselves to accepting that it will be malignant and do away with false hopes?

The report notes no other lesions, and that there are no enlarged axillary lymphadenopathy. Also noted in the mammogram is that the lesion is seperate from the pectoralis muscle and does not abut the skin. Don't know what that means but if anyone thinks this is a good finding, let me know. The report conclusion states " Irregular spiculated lesion in the right breast for an ultrasound guided biopsy will be performed". Left breast is unremarkable.

so....we are kind of scared as you probably sense from my text and we are hoping we fall into the 12% that the BI-RADS says will not be malignant. After all, someone has to be in that 12%, correct? :)

Thank you all for reading.....

Comments

  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited December 2019

    Welcome,

    I am sorry that you have to join us, but this is a wonderful place. We do have a separate area for family members and caregivers:

    https://community.breastcancer.org/forum/16

    That being said, try not to get ahead of yourself. You can spend a lot of time speculating and worrying about what you currently know but the reality is that the biopsy results will be what drives the next steps. In other words, though waiting is stressful, only the biopsy results will dictate what happens going forward. Playing a guessing game is pointless and, IMO, creates more stress. Please wait, as difficult as it may be, for the biopsy results. I will say that 10 days seems quite long, but doctors and pathology reports do differ. I hope you get the results soon so you can move forward based on facts, not speculation. Take care

  • Beesie
    Beesie Member Posts: 12,240
    edited December 2019

    "...with a BI-RADS rating of 4c, should we just resign ourselves to accepting that it will be malignant and do away with false hopes?"

    I'd say that with a BIRADs 4c, you should mentally prepare yourselves for a diagnosis of breast cancer, but you certainly should continue to hope for a benign result.

    I've been hanging out here for a lot of years, and I've seen many BIRADs 5 come back benign, and those have a 95% chance of malignancy. So there is no reason to not hope that your wife will fall in the 12%. That said, with a 4c and a spiculated mass, the odds lean towards malignancy so it's best to not be too optimistic.

    The fact that the lesion is separate from the muscle and does not abut the skin is good, since it means that if this is cancer, removal with a lumpectomy, and the achievement of good surgical margins, should be possible.

    Keep busy while you wait for the results, and good luck to your wife. Let us know the result.


  • Moderators
    Moderators Member Posts: 25,912
    edited December 2019

    Dear dilloa,

    Welcome to the BCO community. We are glad that you reached out on behalf of your wife and yourself. We hope that you will find support from our members. Please keep us posted on what you learn and how we can be of continued help to you.

    The Mods

  • AliceBastable
    AliceBastable Member Posts: 3,461
    edited December 2019

    I always suggest scheduling fun things while you play the waiting game, like going to a concert, seeing a funny movie, or just going to a local park. Bonus points if the park has a zoo!

  • dilloa
    dilloa Member Posts: 16
    edited December 2019

    Thank you all for your replies, and my apologies for the long delay in updating you. Was hoping for a benign result from pathology but that was not the case. IDC (of the colloid type) Grade 1, ER+/PR+ HER2-

    Seeing the surgeon this wednesday for next steps. I understand that this is a "one step at a time" game, and trying to predict what the future brings is futile right now.

    I'm almost afraid to ask about survival stats in my wife's situation but I am really hoping that her 2 cm lesion with the pathology above responds well to treatment and that the disease can be controlled for many years to come.

  • AliceBastable
    AliceBastable Member Posts: 3,461
    edited December 2019

    Grade 1 is good. Er+/Pr+/Her- is good. Chances are that it'll be less a matter of "controlled for many years" than a one and done surgery, a course of post-surgical radiation, POSSIBLY chemo if she has a high oncotype score, and a daily pill for 5 or 10 years. Those are all to try to prevent future recurrences or metastases, not to control anything still there. Think preventive maintenance rather than treating something still there.

  • letsgogolf
    letsgogolf Member Posts: 263
    edited December 2019

    Grade 1, ER+, PR+ probably has the best prognosis. Keep your chin up....chances are excellent that your wife will be fine. I imagine her Oncotype score will be very low and she won't need chemo. Hearing the diagnosis throws you for a loop, I remember well. Best wishes! BTW - I had a very similar tumor and 3 years later I am fine. My Oncotype score was 3 and my chance of recurrence is said to be 4% over the next 10 years. I like those odds and I am guessing her prognosis will be very similar with a grade 1, hormone positive tumor.

  • Beesie
    Beesie Member Posts: 12,240
    edited December 2019

    "I'm almost afraid to ask about survival stats in my wife's situation"

    Until the final surgery, anything is speculative because the pathology can change. But you will get the stats once your wife gets her Oncotype results after surgery. Unless there is something very unexpected in the final surgical pathology, with a grade 1, ER+/PR+/HER2- mucinous (colloid) type breast cancer, the long term survival stats (i.e. effectively cured) are likely to be very good.

  • dilloa
    dilloa Member Posts: 16
    edited December 2019

    thank you for your encouraging words to my last post. I am so glad I found this support group. As I stated earlier I have come to learn (and accept) that this is truly a "one step at a time" journey. Thinking too far ahead and playing the "what-if" game can take one to very dark places no matter how much they don't want to go there. Tomorrow is our first consult with the surgeon, and with biopsy pathology in hand, we'll see what direction it takes us in. Will provide an update as I am sure the consult will generate more questions than answers.

  • Beaverntx
    Beaverntx Member Posts: 3,183
    edited December 2019

    dilloa, take notes, make lists of questions to ask at the next appointment, etc. What may seem very clear at the appointment will likely be hard to remember afterwards no matter how hard you both try to listen attentively!

  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited December 2019

    Remember - surgeon's cut. That's what they are trained to do. You might take time to meet with a medical oncologist before going forward if surgery is suggested.

  • dilloa
    dilloa Member Posts: 16
    edited December 2019

    Hello MinusTwo

    if i understand correctly, are you suggesting that surgery may not be required and that other treatment options should be considered? I don't know enough about the disease to know what options truly exist. We were told after the biopsy report that the next step is to consult with a surgeon who specializes in breast cancer.

  • Beesie
    Beesie Member Posts: 12,240
    edited December 2019

    dilloa, no, with a breast cancer diagnosis, your wife will definitely need surgery to remove the cancer. I wonder if MinusTwo perhaps didn't seen your post where you provided the biopsy results indicating that your wife does have IDC.

    Your wife will definitely need to see an Medical Oncologist. Whether this is done prior to surgery or after surgery depends on the diagnosis and how straightforward the initial options are. With larger tumors and/or more aggressive tumors, in some cases chemo is done prior to surgery, either to shrink the tumor (sometimes so that a lumpectomy can be done instead of a MX) or to start the direct attack on the cancer cells as quickly as possible. Surgeons don't have anything to do with anything other than the surgery, so if neoadjuvant chemo is even a possibility, then your wife should see the MO first. But if it's an easy and obvious decision to have surgery first, then there is no need to see the MO until the complete surgical pathology is available.

  • letsgogolf
    letsgogolf Member Posts: 263
    edited December 2019

    I believe Beesie is correct. The only situation in which your wife might not need surgery would be if her cancer was metastatic (spread to other areas of the body) and that is extremely unlikely in her case, having a smaller, low grade, HR+ tumor.

  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited December 2019

    Thanks Beesie - I didn't mean that surgery wasn't indicated - just that she might want to meet with an oncologist up front too. Personally, I did choose to meet with an oncologist BEFORE my surgery just so I had a grasp of where we might going. (even for my first BC that was DCIS only - yes OK, I'm a control freak). He drove the bus for me and worked closely with the surgeon & the PS and eventually the radiation oncologist. And he's the one who took my case to the tumor board. Beesie is correct - a breast surgeon is a good place to start.

  • obsolete
    obsolete Member Posts: 466
    edited December 2019

    "IDC (of the colloid type)" ... FYI... is another term for IDC subtype, Mucinous Carcinoma. More info at link below, which serves as a wealth of information for MC patients. Hugs & best holiday wishes to all.

    Topic: Mucinous Carcinoma of the breast

    https://community.breastcancer.org/forum/137/topics/733018?page=76#post_5491612

  • AliceBastable
    AliceBastable Member Posts: 3,461
    edited December 2019

    I also had an appointment with an oncologist before surgery, because I'd been referred to her by my primary due to a wonky blood count. It turned out for the best (I guess!) because the MO is who ordered the chest CT that led to my other surgical adventures last year. But in general, it's just nice to touch base with the MO first to get more information and possible options on the medical, rather than surgical, side.

  • dilloa
    dilloa Member Posts: 16
    edited December 2019

    Hello

    Thought I would provide an update on my wife's diagnostic work-up....

    First, thanks for the clarification on med-onc vs surgeon, and in which order. I may have misunderstood the post by MinusTwo

    We received the biopsy path report from a med onc. He seemed quite convinced that a surgery consult was the next step. We met the surgeon on Wednesday this week who took a very long time to explain next steps. He very much echoed Beesie and letsgogolf's posts above. He was also very technical which was ok for me, maybe less so for my wife.

    He told us that the colloid type tumors have very good prognostic outcomes. The ER+ at 100% was also a strong prognostic factor. He did state that the mass being greater than 2cm (measured 2.1 cm on ultrasound) and PR+ results at 12% will require an oncotype testing, but he expects that to come back low. He also stated that this type of tumor usually has a 90% node negative result. He appeared quite confident in this after doing over 500 BCA surgeries a year for many years. So.....if he called it right, he expects lumpectomy followed by +/- 18 fractions of radiation therapy (i don't recall the exact no of fractions), then followed by hormone therapy for 5 years.

    Needless to say, this was very encouraging news. Of course, only the pathology after surgery will dictate how accurately he called it.

    A big take away for me now is that I am SO HAPPY that I joined this group. I learned so much from all of you in such a short time that allowed me to go into the consult armed with good questions. Fingers crossed. Surgery is scheduled on Jan 13. I find that too far out, but even after I asked him if the cancer could be up-staged by waiting this long, he did not seem to think it would change the outcome.

    Happy holidays to all of you !

  • Beesie
    Beesie Member Posts: 12,240
    edited December 2019

    dilloa, I'm glad the appointment went well.

    As for the surgery date, think of it this way. I've read that most breast cancers have been in the breast for 3-5 years before they become large enough to be detected, and the timeline might be even longer for cancers that are low grade and not aggressive. So in that context, you can see why the doctor isn't concerned that another few weeks will make any difference. The schedule your wife is on is pretty normal and is actually quicker than many.

    When we face a new diagnosis, it's 'Cancer!' and it seems like an emergency. But to doctors, who deal with breast cancer every day, it's definitely not a medical emergency.

    Hopefully your wife's diagnosis will not be upstaged once the final pathology is in, but if it is, the odds are extremely high that whatever is found that changes the diagnosis was there all along, but simply not visible in imaging either because it was too small or because it was hidden (breast imaging unfortunately misses more than you'd think). That said, it's more likely than not that your wife's diagnosis will not materially change.

    With a few weeks off, and with a plan in place, I hope you and your wife are able to enjoy the holidays

  • AliceBastable
    AliceBastable Member Posts: 3,461
    edited December 2019

    My tumor was a little larger at post-surgery pathology, and I did have a micro-met in the dentinal node, but my oncotype score was still low enough for no chemo.

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