Breast MRI results

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ella23
ella23 Member Posts: 36
edited March 2016 in Diagnosed and Waiting for Test Results

I had a breast MRI done this morning and my breast surgeon called me a few hours later with the results:

I have a cloud of what appears to be cancer measuring 8cm in my right breast and two additional masses measuring over 2cm in the left breast that wasn't initially picked up by the mammo (I have "extremely dense breasts," whatever that means).

She is a very conservative surgeon and rarely recommends mastectomies but she said that I really have no other option for my right because it's so extensive, and that it might be a good idea to do the left as well. I trust her.

My mind is blown. I'm numb...I'm 38. I have a 3 year old son.

I can't think right now but I know there's so much I need to be doing to process, plan, prepare. I have a second opinion scheduled for next week and am waiting for brca test results. What else should I be doing?

Thanks for listening, and for any advice you may have to offer.

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  • LisaAlissa
    LisaAlissa Member Posts: 1,092
    edited March 2016

    Hi Ella,

    I'm so sorry to hear your news. It sounds like you're doing all the right things. However you didn't mention talking with either a Medical Oncologist or a fertility preservation specialist.

    The MO will be "leading the team" once the surgery is done, and often it is useful to have their viewpoint before surgery. Why? Sometimes they want to do neo-adjuvent chemo before surgery, particularly with large tumors. If sufficiently shrunken by chemo a lumpectomy may become a possibility. Secondly, doing chemo in advance (while the tumors are still in place) gives you the chance to see if the chemo chosen is working with your particular cancer. (Instead of having to simply hope/guess whether the chemo regime after surgery is the "right one" for your cancer.)

    If there is even a remote chance that you may be concerned about future fertility, you might also want a fertility preservation consultation. Ask your Medical Oncologist for a referral.

    My best wishes,

    LisaAlissa

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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited March 2016

    Ella - I'm so sorry you find yourself here. My number one recommendation is to ask your surgeon for some antianxiety meds. They really do take some of the edge off the fear so you can breathe a bit. Then I would join the chemo and surgery sisters for April. It helps so much to be walking with another soul who is going through the same thing. Your little one is going to give you the strength you need to face this. Sending you gentle hugs.

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  • ella23
    ella23 Member Posts: 36
    edited March 2016

    Thanks LisaAlissa and FarmerLucy for your responses. I have anti-anxiety meds and sleep meds but unfortunately they're not helping much.... Any recommendations for what's worked for you?

    Since my last post, my BS has called me several times to discuss the possibility of neo-adjuvant therapy and has referred me to an MO. She said there isn't a clear-cut answer for what type of game plan would be right for me right now, since Oncotype testing cannot be done until after they get in for surgery. (I am aware that it is possible, but with such a large arra of cancer it might not be as informative to test a blind sample.) Anyway, she is concerned about the extent of the cancer and therefore wants me to get an MO's opinion about my case.

    Neo-adjuvant therapy seems fairly rare.... Is there anyone out there who has had this be their treatment plan? What were the reasons for it?

    Thanks in advance,

    E.

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  • Molly50
    Molly50 Member Posts: 3,773
    edited March 2016

    There are many women here who had no adjuvant chemo. Check out the chemo forum and I am sure you will find some. I am very sorry for your diagnosis at such a young age. Hugs.

    Chemo forum

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  • Italychick
    Italychick Member Posts: 2,343
    edited March 2016

    The value of neoadjuvant chemo is to see if the chemo you are doing works on your cancer. Some women get a pathological complete response to chemo so that when their tumor bed is excised all the cancer is dead. If chemo is done after (as I did) the only way to know if it didn't work is if cancer comes back. So you never get a positive yes, the chemo was effective for my cancer. So now I always wonder.



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  • 614
    614 Member Posts: 851
    edited March 2016

    Dear Ella:  Neo-adjuvant therapy is not rare.  It is used to shrink tumors prior to surgery and to insure that the chemo is working.  I am sorry that you were diagnosed so young.  I doubt that your doctor will recommend oncotype testing.  Oncotype testing is usually done to see whether chemo is necessary.  With 3 bilateral tumors and one tumor being 8cm, it seems that chemo will be recommended for you.  I am sending you hugs and prayers.  Good luck.  It sounds like you are working with an excellent, caring, and concerned set of doctors.  That is wonderful.

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  • ella23
    ella23 Member Posts: 36
    edited March 2016

    Thank you ladies for the advice, encouragement and info.

    One thing I'm confused about is the oncotyoe test...my dr is wanting to do it to determine if my cancer would respond to chemo. My understanding is that even if the cancer is large, it may or may not respond to chemo, so her reasoning makes sense to me. 614, can you explain what you mean when you say that you don't believe my doc will order oncotype testing based on the extent of my cancer?

    Also, I've been told that the cancer (at least 3cm of tumor and a large "cloud" that is "highly suspicious") is so large on one side that a mastectomy is the only reasonable option I have. If doing chemo on the front-end is to shrink tumors, what benefit is there for me when I'm heading towards a mastectomy anyway (aside from experimenting on which chemo protocol would work best against my cancer, if it even works at all)? I kind of hate the idea of just assuming that I'd benefit from chemo if there is a real possibility that I could have a low oncotype score.

    Any thoughts, anyone? These are questions I'll be asking at my MO appt but I'd love to have some knowledge before walking into the dr's office tomorrow....

    Thanks for your wisdom. :)

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  • Italychick
    Italychick Member Posts: 2,343
    edited March 2016

    ella23, even if you do a mastectomy to remove all cancer in the breast, chemo may still be recommended because the purpose of chemo is to hunt down and eradicate any cancer cells that may have escaped into the body and are trying to set up in a new location. So chemo is for systemic treatment, not the breast. Responding to chemo neoadjuvantly by getting a response in the breast can be a benefit, but it is not the main purpose of chemo. Cancer that migrates out of the breast is the most problematic. Breast cancer can migrate and set up in bones, liver, brain, lungs, etc. it is still open to debate how often breast cancer migrates in the body.

    I really hated the thought of doing chemo, but it is really about whether you would look back and be regretful of not doing chemo if it is recommended, and if you have a recurrence or if your cancer goes metastatic. There are no guarantees with chemo, but right now it appears that chemo, hormonals, radiation and drugs like Herceptin are the best tools available.

    So I looked at the faces of my husband, children and grandchildren and I did the chemo and Herceptin.

    I was not er or pr positive (meaning I am hormone negative) so anti-hormonals were not an option for me, I only had chemo and Herceptin available for treatments. There are women who did not do chemo and have done well with just hormonals like tamoxifen or an aromatase inhibitor with ovarian suppression, but the oncotype should help with that decision.

    There are no easy answers, only ones you can make and not look back on with regret.


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  • NancyHB
    NancyHB Member Posts: 1,512
    edited March 2016

    ella, the Oncotype test is used to determine the efficacy of chemotherapy in early-stage (Stage I or II) breast cancer, with up to three positive nodes. The test was designed specifically to prevent over-treatment of early-stage BC, not to determine the response cancer will have to chemo, so I'm confused about your doctor's reasoning. In your case, with an 8 cm tumor (assuming it's invasive and not DCIS), you would no longer be considered "early stage" and chemo would be an expected course of treatment.

    Neo-adjuvant chemo is not all that uncommon, especially in multi-focal and larger-tumor diagnoses. Given the size and number of tumors, neo-adjuvant chemo would give you the chance to possibly shrink the tumors down to a reasonable size that would allow for lumpectomy - or could give you a pathological complete response, meaning the cancer would be gone. Even if you then opted for mastectomy, you have shrunk the tumors back so that the mastectomy surgery is even more successful.

    I hope some of that information helps you. I know this is a confusing time; keep asking questions and we'll do the best we can to help you prepare for your appointments so you feel you have all the information you need.

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  • ella23
    ella23 Member Posts: 36
    edited March 2016

    NancyHB, thank you for the info and response. It is so helpful!

    I think maybe I should clarify a few details:

    On the right side, I only have a 3cm tumor confirmed to be IDC via biopsy. The 8cm "cloud" discovered by my recent MRI has not been biopsied but has been labeled as "highly suspicious."

    On the left side, I have a 2cm area that has been confirmed to be DCIS vis biopsy. The 2 new tumors that were discovered via MRI have not been biopsied.

    I'm not quoting my BS here, but she inferred that the right side is a crazy mess. And in both breasts, there's a lot going on. I was given the option to biopsy all the new masses/areas but if I'm going to have a mastectomy, there really is no need to biopsy now. Additionally, because the 8cm cloud is so large, it would be hard to get a complete picture of what's going on with just a biopsy of a sampling of it.

    Which brings us to the question of what to do with chemo, with what we know right now. Technically, we've only confirmed stage II BC, which puts me at "early stage," but there is a bunch more abnormal stuff that the subsequent MRI has now revealed. We don't exactly know what that massive cloud is right now, along with the 2 additional tumors, but from what my BS could tell, there's a good possibility that it's cancer.

    It seems as if my best two options right now are:

    1) neo-adjuvant chemo, to see if it does anything to both my confirmed BC and the suspected BC; or

    2) do surgery (mastectomy) first, then do oncotype + biopsy all the suspected and confirmed cancerous areas, and go from there.

    (There is the third option of biopsying all the new tumors/areas but I don't really want to do this, for several reasons.)

    I should also note: I have BC in the family. Not sure if that changes anything re: evaluation of the oncotype test?

    Sorry for the confusion and if I've missed any terms or labels. I'm very grateful for your knowledge and input..thank you so much.

    I have my MO appt in a few hours...will update with what she says.

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  • ella23
    ella23 Member Posts: 36
    edited March 2016

    ps: thank you Italychic for your response, too. I do believe chemo is likely in my future but was considering my option of doing it before surgery rather than after. Thank you for your input. :)

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

    Hi ella23:

    You indicated you have a "3cm tumor confirmed to be IDC via biopsy" (right) and "a 2cm area that has been confirmed to be DCIS vis biopsy" (left). If I understand correctly, you are 38 years old, with biopsy-confirmed bilateral breast cancer, and some family history.

    I am a layperson, but note that under the NCCN guidelines for "Genetic/Familial High-Risk Assessment: Breast and Ovarian" (Professional Version, 1.2-16), this appears to clearly warrant a referral for further genetic risk evaluation with a professional with expertise and experience in cancer genetics, such as a genetic counselor. Under the NCCN guidelines, "genetic counseling is highly recommended when genetic testing is offered (ie, pre-test counseling) and after results are disclosed (ie, post-test counseling)."

    If you have not received such a referral, please request a referral for genetic counseling. A genetic counselor would work with you to collect a family history of cancer on maternal and paternal sides of your family (breast cancer, other cancers, age at onset, etc.), conduct a formal familial risk assessment, and help you to understand your overall risk in light of your family history, personal medical history, and other risk factors (e.g., breast cancer diagnosis, early age onset, two primaries, etc.). A genetic counselor will advise you about whether and what kinds of genetic testing may be recommended in light of your personal and family history, and explain the pros, cons, and limitations of genetic testing.

    Genetic counseling is an important component of informed decision-making about genetic testing, and I found it very helpful. You may either choose or decline genetic testing. However, if you carry a mutation that strongly predisposes you to breast cancer, for example, it might influence your choice about surgical options. I note that one might still receive neoadjuvant treatment, if indicated, regardless of the ultimate surgical choice.

    Best,

    BarredOwl

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  • ella23
    ella23 Member Posts: 36
    edited March 2016

    BarredOwl,

    Thsnks for your advice. My BS drew my blood last week to send off for genetic testing. There were several options for types of testing (some more in-depth than others) and she recommended what appeared to be middle ground.

    Do you think additional genetics counseling is warranted? Also, if I am leaning towards bilateral mastectomy, would additional genetics info/testing be useful to me in any way?

    Thanks so much,

    -E.

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  • ella23
    ella23 Member Posts: 36
    edited March 2016

    i met with an MO this morning who is sending me to get further testing: a PET scan, and a biopsy of the new mass on DCIS side. She'll be recommending neoadjuvant chemo if the cancer in the left is different from the cancer in the right. She also stated that due to the mess and size of the stuff going on in the R breast, neo-adjuvant would be beneficial in getting the best likelihood of negative margins after surgery. There's a lot more we discussed but those were the two biggest take-aways for me.

    I need some dark chocolate and a glass of wine....

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

    Hi ella23:

    Perhaps your surgeon has specialized genetics training, but most breast surgeons do not. So I would still recommend requesting a referral to genetics counselor to discuss the test results, regardless of the findings. Both NCCN and ASCO recommend genetic counseling pre- and post-testing. The pre-test counseling is done to help decide what type of testing is indicated and to help decide if you want it or not. With the test already ordered, at this point, I would just recommend a referral for post-test counseling, regardless of the findings.

    If positive, you should receive full information about what is known (or not) about the level of risk associated with the particular mutation, including the type(s) of cancer(s) associated with it, available screening options, and suitable risk reduction measures, if any (e.g., chemoprevention, prophylactic bilateral salpingo oophorectomy, bilateral mastectomy). Other findings, such as "variant's of unknown significance" are conceptually difficult to deal with, and not well understood even by medical professionals. If negative, the counselor can explain the limitations of test results (e.g., may not completely exclude the possibility of undetected mutation in genes tested; do not exclude the possibility of a heritable syndrome; possible "uninformed negative" in certain cases). If there is a finding, they should also cover sharing of information with potentially affected relatives and potential issues that can arise with such sharing, etc. All in all, I think you would find counseling valuable.

    Will keep my fingers crossed for you for negative results on all upcoming tests and biopsy.

    BarredOwl


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