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hodgepodge
hodgepodge Member Posts: 92
edited July 2019 in Just Diagnosed With a Recurrence or Metastasis

In 2004, just before I turned 35 I had a suspicious lump in my right breast but it didn't show up on mammo. Was too worried to take the wait and monitor approach and request a biopsy. The biopsy showed DCIS. I elected to have a lumpectomy and radiation. The first lumpectomy did not have clear margins and had a second lumpectomy that then had good margins and was able to start radiation. My skin did really well with radiation and healed so that you can't even tell it was ever radiated; only a scar from the lumpectomy to show anything had ever happened. Pathology showed it was mildly ER+, tested BRCA negative, and the MO didn't push doing tamoxifen. I've been feeling like I was in the clear with so much time passed.

Here we are, 15 years later and I started having a lot of pain in my left breast. I went for a mammo that showed nothing but with my previous experience with the mammo not showing anything I went to see a breast surgeon and they agreed to have an MRI done. When I got the call with the results the left breast was fine, but right behind the scar of the previous DCIS was an area that appeared benign but with my history was decided to be suspicious enough to warrant a biopsy. It was 6mm and not palpable so they did a MRI guided biopsy. It came back as IDC, grade 2, strongly ER+ and PR+, HER2 inconclusive (they are doing a FISH test now and will have results next week). I am in a state of complete shock right now and feeling so overwhelmed. Trying to figure out what comes next. :(

Feeling so mad at myself for not doing tamoxifen and having a mastectomy!

Just getting started reading posts and information about where to begin. Glad to have found this resource!

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  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited April 2019

    Hi!

    What's done is done; no need to beat yourself for past decisions. Next steps: See what the FISH test says. Your case will be more complicated if you're HER2+. Think about surgery -- if you want a mastectomy, it's on the table again. Also, think about whether or not you want reconstruction because there are multiple ways you can do that. Otherwise, you've done the right things. You pushed for a biopsy, and you found out what you needed to know. ((Hugs)) It sounds like they've caught it early, which is a good thing.

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  • Spookiesmom
    Spookiesmom Member Posts: 9,568
    edited April 2019

    Nope!Don’t beat yourself up. I was dx 7 years ago. Poision, slash, burn. 4 years aramidex, about a year on tamoxifen. Had bmx then. Ca was on left side. In January I started haveing pain in right arm pit. PET/ ct lit up 3 nodes positive. They came out past Wednesday.

    I felt I’d done everything recommended and if it came back, I’d deal with it. So here I am. Dealing.

    But not beating myself up. I’m not going to let it run my life. The many appointments might try, but not cancer.

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  • akmom
    akmom Member Posts: 272
    edited April 2019

    Hodgepodge, please don't be mad at yourself - save that energy as you'll need it for your upcoming treatment.

    I have decided to forgive myself for not being able to see into the future! Was just reading over notes I made during DCIS treatment a few years back and saw "declined Tamoxifen". Had totally forgotten it was even offered, but now thinking back, I remember that the oncologist figured it would not make a significant difference to the odds of recurrence. Yet here I am again... wondering if taking the Tamoxifen would have prevented this.

    I was also beating myself up this time around because the surgeon didn't do a sentinel node biopsy since it was "just" DCIS. I was a bit concerned but hesitant to speak up (figured, oh well, less chance of lymphedema this way). Guess what, turned out it was IDC Grade 2. Surgeon said it was a small area with clean margins so it would be "overkill" to go back in to try to get the sentinel nodes after BMX... Now I have that niggling worry that there will be another surprise somewhere down the road. But hopefully the Letrozole is doing its job, so I try not to think about it too much.

    It is good to be able to share with others who understand. Thanks for posting xoxo



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  • KBeee
    KBeee Member Posts: 5,109
    edited April 2019

    I am sorry you are dealing with a recurrence. I had BMX and had a local recurrence. It can happen after mastectomy too. There is a fine line between treatment and over treatment, and we all have to just make the best decisions we can with the information available at the time. You did that. Do not look back. Move froward. You are in the toughest (for me anyway) phase mentally right now...limbo-land...waiting for results just spinning your wheels in place. Hoping you get results soon, so you can have a plan and plow forward. (((HUGS)))

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  • hodgepodge
    hodgepodge Member Posts: 92
    edited April 2019

    Thank you for the quick responses. It was nice to wake up this morning and see encouragement in my inbox. :) I have a plastic surgeon consult today to see what my options are for reconstruction in case I go that route.

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  • Lisey
    Lisey Member Posts: 1,053
    edited April 2019

    hodgepodge, in case you want to not go the recon route, I'd like to invite you to join 'Flat and Fabulous' on Facebook while you are making your decision (anyone can join who is in the deciding realm).  So many of us younger women are rocking being flat, without all the surgeries and foreign objects in our bodies (plus google implant lymphoma to make an educated decision).  I don't feel the Doctors really discuss the positive factors of being flat, so I do my best to help spread the word.

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  • Ingerp
    Ingerp Member Posts: 2,624
    edited April 2019

    hodgepodge--you're similar to my history (including the re-excision for the DCIS lumpectomy!). After 15 years I think it's *much* more likely that this is a new primary and has nothing to do with your previous diagnosis. Mine certainly was, particularly since it was on the other side and had very different tumor features.

    At this point do what you have to do in terms of treatment. When that's behind you, maybe think about lifestyle changes that can maximize your probability to never have to deal with this again. I never had any genetic testing--two of my docs said they were sure it would come back negative--and I occasionally wonder why these things keep popping up (in addition to the 2016 DCIS and 2018 IDC, I had ALH in 2008). All I can do going forward is try to follow guidelines re: diet/exercise/supplements/. . . for minimizing recurrence probability. FWIW, another poster recently shared this, which I found really helpful. Sometimes it's good to have a concise list of the current thinking on what helps, what hurts, and what doesn't matter.

    http://www.cmaj.ca/content/189/7/E268

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  • Salamandra
    Salamandra Member Posts: 1,444
    edited April 2019

    Oh my gosh this is NOT your fault!

    In fact, I would assume that this is a totally different cancer (it is different hormonally for sure), and that even if you'd done tamoxifen, this would've happened. Tamoxifen helps but it is not 100%, and plenty of women recur despite tamoxifen. Especially so many years later.

    Shit happens. There were no good reasons/explanations for you to get your first DCIS diagnosis and there's no good reasons/explanations for you to get this one.

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  • hodgepodge
    hodgepodge Member Posts: 92
    edited April 2019

    Lisey, I am strongly considering this route! Especially after my visit with the plastic surgeon today. Thank you for the information. I'm not really active on FB but may have to change that. :)

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  • hodgepodge
    hodgepodge Member Posts: 92
    edited April 2019

    Ingerp, thank you for the link! Great advice!

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  • mom2e
    mom2e Member Posts: 10
    edited April 2019

    Don’t beat yourself up. My strongly ER+ cancer came back after tamoxifen and then again (just diagnosed today) after BMX and letrozole. Some of these cancers just don’t want to go away.

    Be good to yourself. No one makes this happen. It’s just the path we have to walk. Together.

    Blessings,

    Jodi

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  • rrshannon
    rrshannon Member Posts: 117
    edited April 2019

    hodgepodge Sorry you have to do this all again. I too was diagnosed at 35 and had 15 years free then a new primary BC was diagnosed. I look at it this way I had 15 healthy years with my breast now the time has come for them to leave. Even with just the lumpectomy I battled some side effects from the surgery, I don't think I was ready to face a mastectomy then but now I am at the stage were I am ready. I hope that your tests come back favorable and that you can find peace in your treatment decisions. We are all here on your side through this new journey.

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  • hodgepodge
    hodgepodge Member Posts: 92
    edited April 2019

    Thanks again for the words of wisdom and encouragement! :) Surgery is scheduled for 4/23.


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  • Belinda977
    Belinda977 Member Posts: 381
    edited July 2019

    This thread has been so helpful. Just diagnosed with DCIS in my right breast after IDC in my left 7 years ago. So many decisions to make. Meet with my surgeon on 8/7.

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  • hodgepodge
    hodgepodge Member Posts: 92
    edited July 2019

    Belinda977, my thoughts are with you! In some ways it's easier the second time around... but in others it is much harder. These boards have been such a help to me!

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