Fill Out Your Profile to share more about you. Learn more...

Blindsighted, 2nd ER+ Tumor Just 3 Years Into Hormonal Treatment

minisub
minisub Member Posts: 4

Hi everyone, long time listener, first time caller. I was diagnosed in 2018 with ER+/PR+ IDC. Went through lumpectomy and radiation, then started on Tamoxifen + Lupron injections. After a year, I was switched to AI + Lupron and have been on that "gold standard" regimen for two years. Imagine my shock when I developed a tumor in the opposite breast (thankfully small and DCIS) that is strongly ER+.

Freaking out a little as to how this is happening just 3 years later and wondering what the future holds (I'm 41). Does anyone have access to data on how common a second ER+ tumor is while on hormonal treatment? My estrogen levels had been checked just a few months prior to diagnosis and confirmed to be in the post-menopausal range. I realize nothing is bulletproof but this has me really scared.

Has anyone else been through this? How do you deal with the anxiety that this is going to happen over and over again despite being on the "gold standard" for treatment?

Comments

  • saltmarsh
    saltmarsh Member Posts: 192
    edited September 2021

    minisub, I don't have answers to your questions, but I hear you. And I'm sorry. That's stressful.

    *sigh* honestly, I believe I've got "gold standard" treatment as well, and I've only just come through reconstructive surgery and am on Tamoxifen for the next five years. That said, have pretty much made my peace with the fact that I may well end up with breast cancer again. It's a thing that happens to a lot of us, so I kind of decided to just keep doing my testing and deal with that if it comes up, just like I did this time.

    Is this easier said than done? I don't know. I'm not where you are. But I know that I do not want to live in a state of anxiety as much as I can help it. I've got plenty of other stressors; I need to let go of any of the ones I can.


  • kathabus
    kathabus Member Posts: 45
    edited September 2021

    SO sorry you have to go through this again. Ugh.

    I don't have the info you're asking for....but I found myself wondering as I was reading your post....was this possibly there before you started your treatment? Usually these are very slow growing. In that scenario, you didn't develop it while on treatment....you know? Just wasn't big enough to see three years ago? Just a thought. It would be interesting to ask your MO about that. At the same time, it seems that developing a second cancer is not all THAT rare. I hear you though....if I got a second cancer while taking letrozole, I'd be anxious, too, like you are...and asking lots of questions. I worry about it, too. Hugs to you as you go through your treatment for this......

  • minisub
    minisub Member Posts: 4
    edited September 2021

    Thank you both for your thoughtful responses. Good to know I am not the only one going through this anxiety.

    You know, I had not considered that this tumor could have been there 3 years ago and was just very slow growing. I will have to bring that up with my MO.

    Even with the prospect of more regular monitoring after this (dense breasts so may be looking at regular ultrasounds or MRI's), I am trying not to freak out too much that I am "prone to" developing tumors/BC. I'm going through the post-diagnosis imaging right now and everything is lining up for a lumpectomy and radiation. I did bring up a double mastectomy with my MO and she definitely didn't rule it out but understood that I may just want them gone. Again, I know that may not guarantee I never have to worry about BC again, but will I ever stop worrying if I don't do it?

    Thank goodness for these forums! I would be seriously lost without them.

  • waves2stars
    waves2stars Member Posts: 98
    edited September 2021

    I just had a mx for an IDC. I had a mammogram, ultrasound, and mri done on that breast. Imagine how surprised I was to get the post surgery path report saying there was DCIS scattered through areas of the breast, too! No imaging detected it! But it was probably there even in 2019 when I had a clean mammogram, maybe the sources of my eventual IDC.

    Your DCIS was probably there a while undetected, too. Something triggered it to proliferate, and maybe your treatment team can get to the bottom of it. There aren’t any guarantees in prevention, surgeries, or treatments for BC. For the first time in my life, and just since surgery, I’ve learned to focus on the present, accept the task in front of me today, and accept the uncertainties of the future. I regret now not having a double mx, but even that’s no guarantee against distant recurrence, so I let that go. I’m sorry you have to go through this process again!!

  • spookiesmom
    spookiesmom Member Posts: 8,147
    edited September 2021

    The first time around in 2012, I was stage 3, grade 3. Did the whole Poison slash, burn thing. Had bmx. Then did 4 years on AIs. Thought I was done. Until I found a pea size lump on the other side. That was 2019. Slash burn. On ibrance and letrozole now. Jut had mri on shoulder for a different issue. Showed a spot.

    Is it back for third time? Don’t know yet. Scan next week. Point is, it can and does come back. How to deal? Keep on doing your normal life. Sure, I’m upset with this. But I haven’t disolved into a puddle of tears. Wouldn’t help anyway, probably get a headache.

    Don’t worry till you need to. You can do it.

  • minisub
    minisub Member Posts: 4
    edited September 2021

    Good to hear all of these perspectives! Learning to live with the uncertainty and worry. That will be a process... If I've learned nothing else, it's that life is unpredictable and if you're lucky, the bumps in the road are small. But, you can't expect there to be no bumps. None of us wanted to be in this sorority and yet here we are, lucky and unlucky in our own ways.

    How I wish there was a clear-cut answer to any of this! But in the absence of certainty I am garteful for the community here and ability to talk it out.

  • gb2115
    gb2115 Member Posts: 551
    edited September 2021

    I don't have answers for you, but I also developed a recurrence, but I was on Tamoxifen at the time. The new tumor managed to grow in exactly the same spot, and while still pretty small, traveled to a couple of my lymph nodes. I'm now trudging through chemo after a mastectomy.


  • minisub
    minisub Member Posts: 4
    edited September 2021

    I'm so sorry to hear that, gb2115! I'm realizing this is more common than I realized. Did you have the option to do another lumpectomy, or were you told/encouraged that a mastectomy was best?

  • lillyishere
    lillyishere Member Posts: 769
    edited September 2021

    I'm sorry to hear this minisub. The same happened to my friend, while in Anastrozole. She developed new cancer in the other breast, 3 years later and she is starting the whole process of surgeries, etc. So scary! I assume Anastrozole hasn't worked? Doctors don't even know if AI and tamoxifen work or not while we are taking them. Sometimes I feel we are just dodging the bullets with these meds. I'm glad yours was caught early. Can you ask your MO how did this happen? I mean, no estrogen in your body and a new cancer is created who feeds in estrogen. I just don't get it.

  • cathy67
    cathy67 Member Posts: 408
    edited April 2022

    Hi,

    I am experiencing same thing, but the suspicious lump is at different location of the same side. I have not got biopsy yet. Looking back the imaging before last diagnosis it said lots of cysts there, all seem benigh up to 1cm. My new suspicion is 5x4x5mm, who knows how big post surgery. Thanks for this post, it let me this is not uncommon. I wonder it is already there, cause the other 7mm lump was there 2 years 9 months ago.

    It will be greatly helpful if some of you can update the follow ups thanks.

    Cathy


  • exbrnxgrl
    exbrnxgrl Member Posts: 4,628
    edited April 2022

    minisub,

    The unfortunate reality of bc is that there is no guarantee, despite treatment, that you will not have a recurrence or even a new primary. There’s also no way to predict who will or won’t have to deal with bc again. Focus on what you know now and don’t borrow trouble from the future! Take care.

  • parakeetsrule
    parakeetsrule Member Posts: 605
    edited April 2022

    Recurrences are unfortunately common. And they usually occur within the first few years after diagnosis and treatment, so finding another one at three years isn't unusual. Estrogen blockers don't block 100% of the estrogen your body is producing, and even if they did, cancer finds a way around it. That's why so many cancer treatments eventually stop working. You're super lucky it's just DCIS! But it's definitely scary to have another trip around the cancer ride. :(