Diagnosis: just how bad is it?

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kjybaby
kjybaby Member Posts: 15
edited December 2014 in Just Diagnosed

I was recently diagnosed at 28 years old with Stage I, early stage II IDC of the right breast (ER+PR-HER2-; grade 3; Luminal B; ki-67 rate of 93.4%). There is also extensive DCIS in the upper right quadrant of the same breast (left breast is completely clear, thankfully).

I'm in the process of soliciting a third opinion (the first two surgical oncologists I met with had quite conflicting approaches to treatment).

Yesterday I realized that I don't know just how "bad" it is. I'm starting to realize that the stage is less important than the grade and type of tumor. From what I gather, ER+ is a positive thing considering it will respond well to hormonal treatment. However, I read a few threads and studies that mentioned ER+ tumors that are PR - don't respond as well to Tamoxifen; Luminal B tumors don't respond as well to chemo. I also read, however, that tumors with a high ki-67 rate respond extremely well to chemotherapy.

It's all quite confusing and I'm trying to grasp the severity of what I've been diagnosed with. Cancer is severe in any capacity obviously, and though the oncologists I've met with have all been positive about the outcome, I can't help but to feel like maybe nobody has given me the "raw truth".

I would greatly appreciate any knowledge or any insight you can share.

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  • ml143333
    ml143333 Member Posts: 658
    edited December 2014

    KJYbaby - so sorry to hear your diagnosis, but don't despair.  I too am ER+ and also PR+ and grade 3 Luminal A.  From what my MO told me, my prognosis is great!  Once we got the oncotype score back, we decided to go with chemo (score of 23) just for added insurance.  Chemo isn't great, but it could be worse.

    At your third opinion, make sure to write a list of questions out and then take someone with you to help you remember the answers!  It does help.

    Once you have decided on surgery and get the final pathology back and then a treatment plan, you will feel a little better about the process. 


     

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  • juneping
    juneping Member Posts: 1,594
    edited December 2014

    i just want to add, regardless of the KI% and grade, at the age of 28, most MO will approach it with a very aggressive tx. i was 41 when i was dx which is considered young as well. so the tx presented to me was aggressive.

    the way the MO see this is: the average life expectancy is 80 years old. so they want you to live another 52 years. and you are young enough to take the tx. i am just repeating what my MO told me.

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  • Moderators
    Moderators Member Posts: 25,912
    edited December 2014

    We're sorry to hear of your Dx. It is a confusing time as you need to make very important decisions, based upon the professional opinions.

    What were the Oncologist's treatment options - where were they the same and what were the confusing differences?

    We wish you the best for your decision process.

    The Mods

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  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited December 2014

    kjy...I strongly recommend you register on the NCCN's website and read the professional version (red log) 2014 breast cancer treatment guidelines. Since you are young and ER + make sure you read about endocrine therapy beginning on page 100.


    Furthermore, since the guidelines were published earlier this year, an important study Regarding premenopausal ER +/ HER - clinical trial was announced last month at the annual San Antonio Breast Cancer Symposium. The conclusion of the study was that younger women who receive chemo and continue to menstruate appear to do well with ovarian suppression AND an aromatase inhibitor. The trial is known as SOFT. Another trial, TEXT, was folded into the SOFT trial.


    Regarding the raw truth....in recent years, breast cancer has become a very treatable disease for many women. Being diagnosed today will bring with it many treatment choices that were not available a decade or two ago. Hopefully, the choices you will make in the coming days will help you enjoy a full, happy and long life. I wish you well.

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  • kjybaby
    kjybaby Member Posts: 15
    edited December 2014

    Thanks to all of you for your input and feedback.

    @moderators - the first surgical oncologist told me that I should have surgery first (skin-sparing, not nipple or areola-sparing) followed by chemotherapy. She also mentioned that the results of the HER2 test would dictate whether or not I would have neoadjuvant or adjuvant chemotherapy. The first surgical oncologist also brought up cyropreservation (which I looked into and eventually decided was not for me). However, the second surgical oncologist from Johns Hopkins felt strongly that he could save the nipple, that I should have chemotherapy first and that HER2 had absolutely nothing to do with whether or not to have chemo first. In addition, when I posed cryopreservation to him, he looked astonished that someone my age in my circumstances would consider it; in fact, he turned to his nurse who was also in the room to ask if she'd ever heard of someone my age undergoing cryo. These things, coupled with the amount of time both surgical oncologists felt I'd be out of commission (again, also somewhat conflicting) gave me pause. I didn't feel at east with such conflicting opinions about treatment so I sought a third. I'm quite glad I did, as she is a pioneer in nipple-sparing mastectomies and after an examination, she doesn't feel she can save the nipple, but feels we can save the areola. Also, the third surgical oncologist wants to do chemotherapy first if the MRI shows the cancer touching the skin as opposed to being towards the back of the breast and being more contained.

    @voraciousreader Thank you! I will certainly look into the reading you've mentioned.

    @juneping I agree. I've only met with one Med Onc, but have a second coming up next week. The med onc I met with never once used the word "aggressive", but I figured this as well.

    @ml143333 I keep seeing Oncotype in the forum. The first med onc I met with mentioned it briefly and didn't feel it was necessary. I am curious to know if the second med onc (who is highly, highly-regarded in his field) will have to say.

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  • juneping
    juneping Member Posts: 1,594
    edited December 2014

    what I meant aggressive was if I was in my 60s....the mo would not push chemo on me.

    So age plays a factor to the tx plan....

    Re onco type....I can't recall its for Er pr positive only.....if you are triple positive then it's not recommended but I could Ben wrong

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