Here I am, Back Again

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MNSusan
MNSusan Member Posts: 305
edited March 2020 in Just Diagnosed With a Recurrence or Metastasis

2005 DCIS - lumpectomy

2012 small (1.1cm) IDC and DCIS - bilateral mastectomy with reconstruction

2020 Stage IV

I felt a couple of hard lumps in my armpit a little while ago, ultrasound and biopsy showed metastatic adenocarcinoma in most nodes in the left axilla. I had a PET scan last week and it shows metastases to several lymph nodes in the mediastinum and a couple of very small spots in my lungs. The hormone receptor status hasn't come back yet, but assuming its the same as in 2012 (ER+PR+ Her2-), my doctor is recommending Verzenio with Faslodex.

I'm bummed to be here again but I'm sure grateful you're all still here and I have a place to read, learn and ask questions as we go down this road. Hugs and love to you all! <3

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  • DorothyB
    DorothyB Member Posts: 305
    edited January 2020

    I'm sorry

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  • blah333
    blah333 Member Posts: 270
    edited January 2020

    Sorry to hear this. I'm scared that this is the path I am on. In the middle of a recurrence scare and had to wait 3 weeks just to get a biopsy scheduled. Doctors make it seem like DCIS is no big deal.. the fact that DCIS or Stage 1 can jump to Stage IV is alarming. It's like this never actually leaves our bodies, it just reduces itself to the point of being imperceptible, until it's perceptible and threatening again.

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  • romashka
    romashka Member Posts: 62
    edited January 2020

    Hugs and love to you too. You are not alone in your journey.

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  • berries
    berries Member Posts: 277
    edited January 2020

    Im so sorry you are back here :( Were you on any HT in 2012? Best wishes to you xx

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  • MNSusan
    MNSusan Member Posts: 305
    edited January 2020

    Thank you, ladies.

    Blah, I know what you mean about thinking DCIS is no big deal and then getting a diagnosis that seems more serious. The IDC and DCIS in 2012 had a different signature and was deemed a second primary. The margins from my bilateral mastectomy were very very close in the deep margin. So, in a way, I'm not totally surprised that its back. I think when you've had it once, its always sort of in the back of your mind. That said, my mantra has always been "don't bleed till you're shot." I'm sorry you've had to wait so long for a biopsy.

    Berries, I wasn't on any hormonal treatment in 2012. I had severe side effects from Tamoxifen and then Armidex in 2006-10 for the DCIS. My oncologist at the time of my mastectomies said she would be happy with a margin of even one cell, and seeing as I had problems with the drugs, I opted out with her approval. Hopefully, I won't have similar reactions this time around.

    Wishing you all a peaceful day! <3


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  • Moderators
    Moderators Member Posts: 25,912
    edited January 2020

    Sending love to you MNSusan. We're so sorry to hear this news, but we're glad we can still be here for you to support you through this continued journey.

    Please let us know if you need anything at all!

    --The Mods

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  • Ingerp
    Ingerp Member Posts: 2,624
    edited January 2020

    (((MNSusan))

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  • KBeee
    KBeee Member Posts: 5,109
    edited January 2020

    I am sorry you are dealing with this. Hoping your plan is in place as soon as those results come back, and hoping the Verzenio kicks it back to get you to NED. Hoping for minimal side effects for you.

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  • MNSusan
    MNSusan Member Posts: 305
    edited January 2020

    Its all about the side effects, isn't it, Kbeee? My oncologist wants biopsies of the mediastinal nodes and I met with the pulmonologist yesterday. That procedure is scheduled for Tuesday 1/28. Then breast MRI on 2/4 and we should have all the information to be confident going forward with the treatment plan.

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  • Rah2464
    Rah2464 Member Posts: 1,647
    edited January 2020

    God bless you - I am so sorry you are having to face this. But I want to thank you for telling your story as we all learn from each other's experiences. Sending you hugs and hopes that you can tolerate the anti hormonals better this time around.

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  • KBeee
    KBeee Member Posts: 5,109
    edited January 2020

    Mayo does pharmacogenetics testing now to help determine if there are reasons that you react to certain medications, if certain medications may work better for you, etc. Perhaps your doctor could order this since you have a history of horrible side effects. You don't have to be a Mayo patient. Then once you have your test results, you'll have an extra piece of information to make the best treatment decision for you. I think this is the link to it so you can see what I'm talking about..... https://oneome.com/

    It sounds like you've got a great care team in place and that they're being very thorough.

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  • MNSusan
    MNSusan Member Posts: 305
    edited January 2020

    KBeee, yes I've had my blood drawn for genetic testing. I just looked on their website (you can register and enter the serial number of your test, which the MO gave me), and the results are currently in clinician review. Hopefully, I'll hear soon. They tested 84 different genes. I think that's similar to the oneome testing but I'll ask my MO to be sure. We spend our summers in a suburb of the Twin Cities - there's SO much great biomedical research/startups/companies in that area.

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  • MNSusan
    MNSusan Member Posts: 305
    edited January 2020

    Well dang. My MO just called with the news that the hormone receptor status is ER- PR-. Her2 is pending. Ki-67 is 70. Ugh. I've got a haircut appointment this afternoon. Methinks I'm getting it cut short!

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  • purple32
    purple32 Member Posts: 3,188
    edited January 2020

    MNSusan

    I never did understnd the KI67. can you elaborate

    or direct me pls >THX

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  • MNSusan
    MNSusan Member Posts: 305
    edited January 2020

    Purple32 - I found this on the main breastcancer.org site. https://www.breastcancer.org/symptoms/diagnosis/rate_grade

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  • KBeee
    KBeee Member Posts: 5,109
    edited January 2020

    I am sorry that it is hormone receptor negative this time. Uuuuugh. (((HUGS))) If they recommend chemo, which they likely will, I highly encourage you to join the chemo board for the month you start. I can say that my Sept 2013 gals and my March/April 2015 gals that I traveled that journey with are still close. We're still in a group together, and I've met many of them. I read a ton of chemo blogs and read the boards, and made a survival list. I am happy to PM it to you if you'd like if your doctors decide on chemo. Thinking of you.

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  • KBeee
    KBeee Member Posts: 5,109
    edited January 2020

    I am a bubblebrain sometimes (chemobrain???). It sounds like your doc did the second generation genetic testing which will best guide treatment. That is AWESOME!!!!! They did that with my mom and it really helped to make the best decisions about what her tumor would respond to. You sound like you have a great team in place.


    The ONEOME testing would actually be most helpful for purple32. I read both threads back to back. She had some horrible reactions to Tamoxifen and AIs, and it could potentially give reasons as to why.

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  • MNSusan
    MNSusan Member Posts: 305
    edited January 2020

    Thanks, KBeee. Yes, I'm assuming chemo as well and will look for a February group. The Her2 results should be back on Monday. I'd love to know more about your survival list.

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  • purple32
    purple32 Member Posts: 3,188
    edited January 2020

    MNSusan

    Im sorry about your receptor status ...I think our posts crossed and I just didnt see it.

    Best of luck to you ... get yourself a pretty haircut!!!!!!!!!!!!!

    HUGS

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  • KBeee
    KBeee Member Posts: 5,109
    edited January 2020

    MNSusan, I sent the list. It is LONG, so it'll be easier to read on a desktop computer than a phone!

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  • MNSusan
    MNSusan Member Posts: 305
    edited January 2020

    Thanks, purple32. I got my hair cut pretty short - think Ellen Degeneres. :)

    Thank you, Kbeee. I'll go take a look at your list.

    Weekends used to just fly by, but when you're waiting for results hopefully on Monday, they draggggggg.

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  • mplspl
    mplspl Member Posts: 1
    edited January 2020

    I was diagnosed with left sided dcis in 2014. Had a bilateral mastectomy. Felt a lump spring 2019 that was a papillary carcinoma. There was an additional tumor dcis+. One node positive. Stage 3. Had chemo. Surgery removed the tumors and nodes. All other nodes clean but they weren’t able to get clean margins. I’m almost done with radiation. Doing hormone therapy. Living with a lot of positivity but also a lot of uncertainty and fear. Thank you for sharing your story! Prayers to you. 

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  • MNSusan
    MNSusan Member Posts: 305
    edited January 2020

    Thanks, mplspl. Once radiation is done, I hope you'll feel better very soon. Do you live in the Minneapolis area? We spend summers in White Bear Lake.

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  • Nana2-8
    Nana2-8 Member Posts: 66
    edited March 2020

    Hi MBSusan- Just read this thread and want to say I'm sorry you had to find this "Club" again.....as do I. I want to follow along with you on your journey in hopes of learning along the way. From your signature it looks like you might be a 'snow-bird' - between Vero and Minnesota ~ We go back and forth from Wis and SC.

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  • MNSusan
    MNSusan Member Posts: 305
    edited March 2020

    Hi Nana2-8, Please feel free to message me anytime. We used to be snowbirds, but have moved to Vero Beach and now spend some time in MN only during the summer. Nothing better than summer in the Midwest. btw, two of my three grandkids live in WI, one in Amery and one in Eau Claire.

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