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26 years old and just diagnosed with IDC

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hray1993
hray1993 Member Posts: 220
edited January 2020 in Just Diagnosed

I’m 26. I’m engaged and have one biological son, 8, and one step son, 7. I found a lump in my breast 11/23. I just found out today from biopsy that it is IDC. The enlarged lymph node they found was clear of cancer though. My breast tumor is 3.5cm x 3cm. I’m not sure if grade or stage though. I didn’t think to ask. Would they know the grade and stage from the biopsy or would I find that out with another test?

Side note: there is no cancer that runs in my family. So this was pretty shocking although I’ve had a feeling since I found it that it was cancer and today that was confirmed

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Comments

  • rrobin0200
    rrobin0200 Member Posts: 80
    edited December 2019
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    ugh. So sorry you find yourself here, but this is a great forum to be on. Lots of valuable info. Welcome.

    Hormone receptor status is normally found on the biopsy report... be sure to grab a copy for yourself. Start a file for everything. HER2 status takes a few more days, so that will be coming in a separate report. Final stage and grade won’t be determined until after surgery.

    I was 37 at diagnosis. It sucks. But, it’s doable. Once you get over the initial shock and you and your team have a plan in place, you’ll feel more in control. You’ve got this! Come back for questions or just to vent. We’ve all been there. Best of luck.

  • hray1993
    hray1993 Member Posts: 220
    edited December 2019
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    So they won’t be able to tell me any stage or grade until after surgery? Do most people do chemo before surgery or after? My tumor is pretty decent sized from what everyone keeps saying so I’m assuming I’ll have chemo and radiation at some point

  • dysonsphere
    dysonsphere Member Posts: 134
    edited December 2019
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    I was just diagnosed on the 10th of December. They told me the grade but I think stage is something they determine from pathology after the surgery, typically. Sorry we will be going on this journey together.

  • Arwa89
    Arwa89 Member Posts: 11
    edited December 2019
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    so sorry for you to be here I know it’s hard to accept the reality of breast cancer at the beginning i was diagnosed when i was 30 years old and my tumor size was 7*5 cm they did chemo first to shrink it as much as possible and my last chemo was a week ago next step is surgery lumpectomy and lymph nodes removal since it was there

    Don’t worry it’s difficult at the beginning but when you start the process you will just go with the flow

  • hray1993
    hray1993 Member Posts: 220
    edited December 2019
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    I think I want to do a double mastectomy. I don’t want to have to worry for the next 60 years of my life if it’s going to come back. Do they give you that option to choose mastectomy if you want to?

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435
    edited December 2019
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    hray,

    Grade usually is part of the biopsy report, although a tumor can sometimes include areas with different grades so this could change when you have the final pathology.

    Still to come from your biopsy is hormone status - ER, PR and HER2. Your treatment plan will be determined in part based on whether these are positive or negative.

    Chemo prior to surgery is not the norm but tends to be recommended in cases where the tumor is large and/or very aggressive and/or when it is known that there is significant nodal involvement. If neoadjuvant chemo is done on a large tumor and it successfully shrinks the tumor, some patients opt for a lumpectomy rather than a mastectomy. If you decide to have a bilateral mastectomy (BMX), that means shrinking the tumor won't be a goal, which might mean that you have surgery first, followed by chemo. But this recommendation (surgery first or chemo first) will come from your Medical Oncologist (MO). And yes, you get to decide if you want the BMX.

    Radiation is pretty much always recommended after a lumpectomy but usually is not needed after a mastectomy. Exceptions might be if the tumor is very large, if there is nodal involvement or if the surgical margins are close.

    Even chemo is not a foregone conclusion - if the cancer appears to not be aggressive and is treatable with hormone therapy (i.e. a ER+/PR+/HER2- cancer), the Oncotype test might be done to determine the risk of metastatic recurrence and the % benefit (i.e. the amount of risk reduction) you'd get from chemo. The Oncotype test assesses 21 genes within the tumor itself to see how aggressive the cancer is. A low Oncotype score usually means no chemo. That said, given your age and the size of your tumor, your MO might forgo the Oncotype test and recommend chemo. And if the cancer is either triple negative (ER-/PR-/HER2-) or HER2+, then chemo will definitely be recommended.

    Lastly, Stage. Stage is determined based on: 1) the size of the tumor; 2) the nodal status, i.e. node negative or node positive and the number of positive nodes; 3) whether there is distant metastasis; and if "No" to mets, then 4) the grade of the tumor; and 5) the hormone status of tumor. Grade and hormone status are new additions to Staging that were just implemented late last year.

    Hope that helps. You've been thrown into a whole new world and there is a lot to figure out!

  • hray1993
    hray1993 Member Posts: 220
    edited December 2019
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    Beesie, that helps so much! It is extremely informative. I’m glad to have an answer for all my questions especially the mastectomy one. I feel like everyone is going to try to push me to just do a lumpectomy but I just don’t feel that I’d feel comfortable and confident with just a lumpectomy so I was very concerned I wouldn’t have a choice in the matter. If I choose mastectomy even if doctors recommend lumpectomy do you think it will still Be covered under insurance? I’d hate to have to go against what I’d feel most comfortable with just because it wasn’t covere

  • hray1993
    hray1993 Member Posts: 220
    edited December 2019
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    Arwa, could they tell the size from ultrasound/mammogram/scans or did it seem. Smaller on scans

  • rah2464
    rah2464 Member Posts: 1,192
    edited December 2019
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    hray so sorry to hear about your diagnosis. You really will not know the true size of the tumor until surgical excision. Scans of all types can be misleading as to actual size. My actual tumor was quite a bit smaller than they originally thought, although my diagnosis from the biopsy changed from DCIS to IDC.

    You have found a great forum here to help with all types of questions. Do your research and trust your instincts on what is best for you regarding lumpectomy or mastectomy. It is a very personal decision and what matters most is what you want for yourself.

  • hray1993
    hray1993 Member Posts: 220
    edited December 2019
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    dysonsphere, seems like we will be having everything done around the same time. It may be good for us to keep in touch so we have someone to go through it all with. Have they done anything or told you anything else since you found out? I’m thinking I won’t be able to get any more appointments till after Christmas.


  • hray1993
    hray1993 Member Posts: 220
    edited December 2019
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    has everyone got genetic testing done? Is that standard protocol once you are diagnosed? I have an identical twin sister and wonder if me having it would also increase her chances. Wondering if I have the BRCA gene. Who would I ask about genetic testing and how is it done

  • MBPooch
    MBPooch Member Posts: 40
    edited December 2019
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    I was told that Genetic testing was protocol where I was being seen for anyone diagnosed under the age of 45. I have a sister and two daughters so was glad to have it done and have that piece of mind. It was done through a simple blood draw. Definitely ask but I imagine they would have you do it anyway. Hang in there, this is the worse time but as you continue to gather more info and put a plan in place you will feel more in control. Hugs!

  • samruns
    samruns Member Posts: 18
    edited December 2019
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    Sorry you're here hray.

    Once you receive your biopsy results, your doctors will probably give you an option to do chemo before or after surgery. My tumor was the same size as yours and the advantage to doing chemo before surgery (in my case) was to shrink the tumor, see if I was responsive to the chemo, then decide on what kind of surgery. My tumor was right under the skin so immediate surgery would have meant a significant loss of skin. Like you, I wanted a double mastectomy from the start (family history of breast cancer made that an easy decision for me) - and while the doctors had to give me all the stats and options, ultimately, it was my choice. My insurance covered the double mastectomy and reconstruction (lots of phone calls to get all the details squared away, but I was pretty lucky). I was incredibly fortunate and was able to do a skin and nipple sparing surgery, so while my breasts don't look the same as before, they're better than I had hoped.

    Genetic testing was considered protocol in my case. It was interesting to know that while I do not carry the gene, lots of my family members have struggled with cancer.

    Good luck - you'll find a ton of information on this site. Take it one day at a time, do the research, and make sure you're comfortable with your doctors. It made all the difference to me that my team listened to me, what I preferred, etc, and also seemed like decent humans.

  • hray1993
    hray1993 Member Posts: 220
    edited December 2019
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    Sam, that’s great news that they covered your mastectomy. Was it difficult to get it approved? Did they cover your reconstruction as well?


  • hray1993
    hray1993 Member Posts: 220
    edited December 2019
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    called back to get hormone receptor status and grade. The hormone receptor status was still pending so no results for it yet but the grade is grade 3. Not sure on stage. Waiting to hear from the breast care team

  • KBeee
    KBeee Member Posts: 695
    edited December 2019
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    First, I am sorry you are dealing with this. You have come to a great place for advice and support. Do ask about genetic testing and make sure they do a wide panel of tests 20-30 plus genes...not just BRCA. Insurance should cover the mastectomy and reconstruction. Some policies require preapproval for everything, but it should be approved. Call your insurance company now and find out details on such things.


    My biggest piece of advice through this is to remember that people WANT to help. Your friends feel helpless and accepting help from them not only helps you, it helps them too; you will be on the other side of this before you know it and paying the help forward, so when someone says what can I do??? Come over and make some freezer meals with me...make a meal train for me so people can sign up to bring dinners... come over and go for a walk with me each week so I can get some fresh air and some time to just chat with a friend...come have tea and help me fold laundry...can you drop off my kiddo or pick him up from XYZ activity once per week... ......I also had one friend who was my "stand-by". She had a flexible schedule and agreed to be my go-to should I have any type of emergency. When I was admitted once with a fever, it simply took a text and she took care of making sure our family had dinner, my kids had rides, etc. These things made life SO much easier for me and were extra helpful since I had no family in my area and 3 busy kids. You CAN do this, but you do NOT need to do it alone. We kept a list of all who helped, and when I was done, we had a big picnic/celebration to thank them all. Everyone thought, "but I only cooked dinner once...stopped over for tea once.........." but those little things all added up to a HUGE relief for me.

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435
    edited December 2019
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    Stage becomes complicated if you have neoadjuvant chemo.

    As I mentioned in my earlier post, normally stage info is not available until after the pathology report is available from surgery. This is called Pathological Staging.

    You might get a Clinical Stage estimate now, based on the biopsy results and the tumor size estimates from imaging, but surgical results can differ and that could change the staging. However if you have neoadjuvant chemo, it will hopely shrink the tumor - and could wipe it out completely- and also could kill off small areas of cancer in the nodes. So accurate Pathological Staging can't really be done after neoadjuvant staging. I think therefore in those cases the Clinical Stage is considered the final Stage, but perhaps someone who's had neoadjuvant chemo can confirm.

    I'm in Canada but I believe it's the law in the U.S. that insurance companies must pay for a BMX even if a patient has breast cancer in one breast only, and must pay for reconstruction.

    Genetic testing isn't the norm for patients over 50 unless they have family history but certainly is the norm when someone is diagnosed at a younger age. Breast cancer is more likely to develop naturally as we get older, so when someone is diagnosed young, they want to see if there is something unusual, such as a genetic mutation, that is driving the development of the cancer. While the BRCA gene is the best known, there are many more genes that could increase breast cancer risk. Given your very young age, you should have a full panel test done. Several years ago I had a 23 gene panel test done (and came back negative on all) and I know that the current panels include many more genes than that. First thing to do is get a referral to a genetic counsellor - it's best to get your testing done through someone who specializes in it.

    Edited to add: KBee, we were typing at the same time, saying the same things. Smile

  • santabarbarian
    santabarbarian Member Posts: 2,310
    edited December 2019
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    Beesie I think clinical stage can *sometimes* be pretty clear from imaging. I have non-dense breasts and there were no mysteries other than at the cellular level when pathology finally happened. I definitely had a met in a lymph node upon diagnosis, and a >3cm tumor, the question was the # of other swollen nodes (were there 2, or 3?) and did they too have cancer, or not? No matter what, I would have been be 2B based on when I was diagnosed, and 3C under the rubric today. Because each stage does have a bit of wiggle room. The real unknown is has there been an invisible escape of cancer into another part of the body, which nobody knows for sure.

    However, if you have hard-to-image breasts I know there can be more mystery. I have seen grossly wrong guesses which surgery discovers.

    BTW I was told that in pathology they found evidence of cancer having been in 2 of 4 nodes but it was dead/scar tissue. So I think they can still be pretty close on estimating original clinical stage even with neo-adjuvant chemo. The size of my tumor might have been off, no way to know now-- but as mine was very palpable, in my case the estimated size felt correct.

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435
    edited December 2019
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    santabarbarian, of course Clinical Stage can often be correct - most diagnoses don't change materially once the final pathology is in.

    The point of my post was to provide information to hray so that she understands what's ahead and to help arm her with questions for her doctors. hray made mention of the fact that she had some results from her biopsy (the grade), was awaiting other results (the hormone status) and was "Not sure on stage". I have no idea if her surgeon or MO will provide her with a Clinical Stage when she sees them, or if they will wait for the Pathological Stage. So I explained both, and explained the difference. Given that hray may be a candidate for neoadjuvant chemo, I explained how this impacts staging.

    As an FYI, while your nodal involvement was evident prior to surgery, most often this is not the case. I've read that ~70% of nodal involvement is not identified on imaging. So understanding that Clinical Stage is based on imaging and could change once the final pathology is in from surgery seems to be something important to point out.

    The issue isn't that Clinical Staging might not often end up being the same as Pathological Stage, as it was in your individual case (and many others, including my own), but that sometimes Pathological Stage will be different, and that there no way to know in advance.

    By the way, I don't know if hray has dense breasts or not, but given that she is only 26, the odds are very high that she does. And that certainly could impact the accuracy of Clinical Staging in her case.

  • hray1993
    hray1993 Member Posts: 220
    edited December 2019
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    thank you all so much for all this info. Every time I read your comments I find so much more useful information. I hope that it is true about insurance having to pay for bilateral mastectomy and reconstruction. I feel pretty dead set on that decision unless my consultation with the breast care team changes my mind but I honestly don’t know anything they could say to make me change my mind

  • hray1993
    hray1993 Member Posts: 220
    edited December 2019
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    So far all I’ve had is a mammogram, ultrasound, and biopsy. Will I have other scans like a PET scan and MRI or anything else done before I meet my breast care team on Jan 7th or will they do all those tests after I meet with them?

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435
    edited December 2019
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    It's the surgeon and Medical Oncologist who determine which other tests are required or appropriate so I wouldn't expect that you'll have any tests until after your appointment.

    Who is part of this breast care team that you will be meeting with on Jan. 7th?

  • hray1993
    hray1993 Member Posts: 220
    edited December 2019
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    I’ll meet with a surgical oncologist, a medical oncologist, and a radiation oncologist.

    Does this mean they don’t expect me to have chemo? Or is there just not a chemotherapy oncologist? That may be a dumb question lol

  • melissadallas
    melissadallas Member Posts: 929
    edited December 2019
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    Medical oncology ISchemotherapy and other cancer medications

  • hray1993
    hray1993 Member Posts: 220
    edited December 2019
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    oh okay! Thank you!

  • santabarbarian
    santabarbarian Member Posts: 2,310
    edited December 2019
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    hray, do you have a "navigator" in your system? Things like scheduling imaging or tests do sometimes lag... whether due to insurance pre approvals taking time, or people having a stack of work on their desk... and it seems like two intervening holidays might also cause some lags.

    I often felt , as a patient, that I had to be "on top of things" and had to push a bit-- just to get tests to happen in a timely way. So if you have a navigator, it might be good to put a call in to her and make sure what the overall calendar is, and ask to get scheduled asap for any needed things.

    In my case from presenting with my lump to first chemo was about 30 days. I had a mammo & US, a biopsy, a second HER2 test, an AR test, a genetic panel, an MRI, and a chemo educational session w nurse, plus a port placement, all inside that month. I know being somewhat quick is considered prudent-- especially with a high grade tumor, which mine was.

  • hray1993
    hray1993 Member Posts: 220
    edited December 2019
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    Mine is high grade as well, grade 3. I think I may have a coordinator I’m not exactly sure though. From presenting with lump to diagnosis was about 27 days so that already took forever. I don’t have my first team consultation till Jan 7 so I figure probably another month before anything really gets started

  • santabarbarian
    santabarbarian Member Posts: 2,310
    edited December 2019
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    hray I want to let you know: you also have the right to receive all your tests and reports and results in writing. It can be a lot to memorize and it is nice to have copies in one file. You often have to specifically ask for them.

    If you have a grade 3, did they tell you your ER, PR, and HER2 results yet?

    With a grade 3 tumor of the size estimated for yours, I suspect you will be getting chemo and likely chemo first. They may want a genetic test due to your age; genetic results may guide the choice of chemo. I would call tomorrow am and see what the navigator situation is and let them get you scheduled for anything thats needed.

  • hray1993
    hray1993 Member Posts: 220
    edited December 2019
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    The hormone receptor status was still pending as of Friday so maybe they will have it tomorrow. What all do I need to ask tomorrow? This will be my last chance for information till after Christmas so I want to ask anything I need to tomorro

  • hray1993
    hray1993 Member Posts: 220
    edited December 2019
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    How will they know what to do if they don’t even know what stage it is yet? I’m so confused about that. Idk how they can have a treatment plan without knowing if it’s spread anywhere else in your body or not