8 1/2 years later, and in the waiting room again...

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Hi everyone. In 2008 when I was dx with bc, I found such an unbelievably supportive community here. I attended an in-person support group, but the women were in such different stages of their cancer journey, that there was nobody I could relate to. I was a 35 year old mother of 3 little boys and had found out I was BRCA 2 pos. So, I turned to these boards, and was blessed beyond measure. So often, people think that it's bad for you to research too much because they're afraid it's feeding your anxiety. I am just the opposite. I need information, and for me, knowledge strengthens me; it doesn't scare me.

So. Here I am, 8 1/2 years after my first dx, and I found a lump in the same breast (left) that had the original cancer. I had a mastectomy with TRAM flap recon in 2008, 4 rounds of chemo, 2nd breast removed with an implant when I found out I was BRCA pos, total hyst., and close to 7 years on Tamoxifen. My BS performed an ultrasound in her office on Thursday morning, and was concerned enough that she had me come back later that afternoon for a core biopsy. She will call me as soon as she hears anything, which I hope will be Monday.

I have no idea what to think. Could it be fat necrosis? It's possible, but 8 1/2 years later for it to just pop up? It's definitely a new lump because I am meticulous about my breast self-exams, and I still see my onc 2-3 times a year, so he checks me, too. My BS wasn't sure what to make of it, and she's usually super reassuring about things. Twice I've seen her in the last handful of years for little issues with my breasts, and she was immediately able to tell me that they were nothing to be concerned about. Sure enough, they resolved with no problems. This time her demeanor was different. She said as she was doing the ultrasound and biopsy, "I sure hope this is nothing." Before you recoil in horror, this is the type of rapport she and I have. We would be friends if she wasn't my doctor, you know? And when she finished the biopsy, she said, in a more professional tone, "We need to discuss possibilities. If this is cancer again, it's very likely that it's just a local recurrence and I can go in and remove it. It doesn't mean that you have metastases." The very fact that she initiated these lines of conversation make me concerned. She is a wonderful surgeon, but has tended to minimize things, I think because many of the patients she has get very upset. She is quick to assuage concerns and fears ( I call this minimization, but maybe it's just good bedside manner). Anyway, with my history with her, I was really not expecting her line of conversation to take such a sober turn. I couldn't believe she would say that sort of thing prior to getting the results UNLESS she was concerned that it was cancer again. Again, I don't think this was unprofessional or anything simply because of the nature of my history with her. Trust me on this.

I want to be careful to not read too much into her demeanor and word choice. But it's really impossible for me not to. I know you all get it!

I'm just wondering if fat necrosis can pop up over 8 years after surgery? Is that even possible? What could she have seen on the US that made her concerned enough to 1) not immediately reassure me that it was just necrosis and 2) engage in a line of conversation about recurrence?

I've looked at US images of fat necrosis, and they can look very similar to cancer. But what do I know? I'm just not sure what to think, and I need some support from those who get it.

Thanks to anyone who can respond, or who just wants to (potentially) welcome back an old-timer. :)

Comments

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

    Emily - I sure wish this stupid cancer had a "recur-by" date and we could all relax after a few years. I don't have any experience here, but just wanted to welcome you back, and let you know we are here for you. It sounds like you have a really great team. Please let us know how everything goes. I'm crossing my fingers and toes for nothing but benign results.

  • 123abc1611
    123abc1611 Member Posts: 29
    edited October 2016

    I don't want to scare you, but this is my story. I was diagnosed in 1997 with IDC. I had lumpectomy, 4 rounds of chemo, radiation, and Tamoxifen followed by Femera. Just last month, after 19 years, a spot was found via a 3D mammogram. The first one I had had. Like you I had been seeing my doctor on regular basis and having blood work and mammograms regularly. I too was hoping it would be fat necrosis or scar tissue. I wasn't so lucky. This time I was diagnosed with ILC ( invasive lobular cancer) which was right on my scar line from previous surgery and in same place as my original tumor but was determined to be new primary, not recurrence. I was totally blindsided. I was told that ILC was missed regularly by mammograms and often wasn't found until it has beem growing for some time. My BS said it was a sneaky breast cancer. I had no idea. I ended up having bilateral mx the 6th of October. ER+, PR+, HER2- . My margins were clean and I had no positive lymphnodes this time around. The first time I had 6/8 positive. My oncotype score was only 6 so I will not be having chemo this time around. Since I had bilateral mx, I will not be having radiation. I am praying for you and that it's fat necrosis. I feel like I've had a good outcome. I am presently 63 and I will be happy with another 19 years.

  • Emily2008
    Emily2008 Member Posts: 605
    edited October 2016

    Thanks, ladies.

    I have a bad feeling about this, but I have to wait to find out for sure. From what I've read, necrosis usually shows up sooner than 8 years, which is why I'm uneasy.

    Thanks for the good wishes. I'll keep you posted!

  • KBeee
    KBeee Member Posts: 5,109
    edited October 2016

    Welcome back. I do have to say that I wish we did not have to welcome you back because I wish that you did not have reason to return.

    Hoping this is a benign lump, but of course, anything is possible. It sounds like you have an awesome breast surgeon who is both diligent and honest...such a great combination. She is obviously concerned, but as we all know, only a biopsy can tell for sure. Hopefully it is not cancer. If it is, it sounds like she's one to hop on it quickly. I had a recurrence after reconstruction. They did a wide excision of the lump, node dissection, and radiation. Because my oncotype was high, we did chemo as well. So far, all is good since then. The point you're at now, with no knowledge of what's there and no plan is by far the hardest mentally. Hoping you get answers soon. Please keep us posted. Thinking of you!

  • Emily2008
    Emily2008 Member Posts: 605
    edited October 2016

    Thanks for commenting. I'm finding myself slowly going nuts...can't seem to think of anything but Monday getting here and finding out. I've never been one to hate the weekends, but this one can't pass soon enough for me!

    Fortunately, I have a pretty good poker face and can busily get to work on various tasks around the house so my kids don't pick up on my anxiety. I've discovered over all these years that's it's impossible for me to NOT think about certain things, so rather than chide myself for it, I'm accepting it. Even if it all turns out to be B9, I won't consider this weekend a loss. I have allowed myself to feel anxious without judging myself about it. That's gotta count for something, right?!


  • Sjacobs146
    Sjacobs146 Member Posts: 770
    edited October 2016

    I think that you have to prepare yourself for the worst, and hope for the best. You have every right to be anxious about this. For goodness sake, I'm anxious every time I drive past the hospital where I was treated. You're in my prayers tonight, praying for B9 results

  • Emily2008
    Emily2008 Member Posts: 605
    edited October 2016

    Well, sorry to say, the beast is back. My breast surgeon called me with the news, and now we're waiting on final path report for the grade, hormone receptors, etc. I have an appt scheduled with my onc on Friday (regular 6 month check-up...coincidence?!), and we will determine the game plan then.

    I guess I'll be posting on the "Just diagnosed with a recurrence" board now. Thanks for the well wishes, ladies.

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

    Oh no! Oh Emily, I'm so sorry.

  • KBeee
    KBeee Member Posts: 5,109
    edited October 2016

    well shoot. I am sorry to hear that. Keep us posted how your appointment goes

  • Smurfette26
    Smurfette26 Member Posts: 730
    edited October 2016

    So sorry Emily. Thinking of you.

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