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

Forum: Second or Third Breast Cancer — For those confronting a new primary diagnosis or undergoing treatment.

Posted on: Sep 22, 2021 10:36AM

minisub wrote:

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?

Dx 6/2018, IDC, Left, 3cm, Stage IIA, Grade 1, ER+/PR+, HER2- Dx 9/2021, DCIS, Right, Stage 0, ER+, HER2- Hormonal Therapy Aromasin (exemestane) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Whole-breast: Breast, Lymph nodes Surgery Lumpectomy: Left; Lymph node removal: Sentinel, Underarm/Axillary
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Sep 22, 2021 10:59AM saltmarsh wrote:

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.


Dx 3/8/2021. LCIS, ILC. Surgery 4/19/2021 mastectomy, right
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Sep 22, 2021 11:04AM kathabus wrote:

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......

Diagnosed at 43 Years Old, Oncotype DX 10 Dx 2/17/2020, IDC, Right, 2cm, Stage IB, Grade 2, 1/1 nodes, ER+/PR+, HER2- Surgery 3/23/2020 Lumpectomy; Lymph node removal Radiation Therapy 5/14/2020 Whole-breast: Breast, Lymph nodes, Chest wall Surgery 7/20/2020 Prophylactic ovary removal Hormonal Therapy 8/20/2020 Femara (letrozole)
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Sep 22, 2021 11:15AM minisub wrote:

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.

Dx 6/2018, IDC, Left, 3cm, Stage IIA, Grade 1, ER+/PR+, HER2- Dx 9/2021, DCIS, Right, Stage 0, ER+, HER2- Hormonal Therapy Aromasin (exemestane) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Whole-breast: Breast, Lymph nodes Surgery Lumpectomy: Left; Lymph node removal: Sentinel, Underarm/Axillary
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Sep 22, 2021 11:55AM Waves2Stars wrote:

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!!

DX @ 47. IDC 2 cm, Luminal B Dx 7/19/2021, IDC, Left, 2cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (FISH) Surgery 9/1/2021 Lymph node removal: Sentinel; Mastectomy: Left; Reconstruction (left): Stacked DIEP flap Hormonal Therapy 9/20/2021 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Sep 22, 2021 12:35PM Spookiesmom wrote:

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.

First time IDGgrade 3, stage 3. Second time, found lump myself. That made me stage 4. Dx IDC, Stage IIIA, Grade 3
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Sep 22, 2021 12:52PM minisub wrote:

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.

Dx 6/2018, IDC, Left, 3cm, Stage IIA, Grade 1, ER+/PR+, HER2- Dx 9/2021, DCIS, Right, Stage 0, ER+, HER2- Hormonal Therapy Aromasin (exemestane) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Whole-breast: Breast, Lymph nodes Surgery Lumpectomy: Left; Lymph node removal: Sentinel, Underarm/Axillary
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Sep 22, 2021 01:47PM gb2115 wrote:

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.


Dx IDC in Oct 2016, stage 2A, 1.2 cm ER/PR+ Her2-, Grade 2, 1/3 nodes, Lumpectomy + rads + tam. Age 38. 5/21 Dx IDC. 1.3 cm ER/PR+, Her2 -. Gr 2. 2/3 nodes positive. AC/T. Age 42
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Sep 22, 2021 01:57PM minisub wrote:

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?

Dx 6/2018, IDC, Left, 3cm, Stage IIA, Grade 1, ER+/PR+, HER2- Dx 9/2021, DCIS, Right, Stage 0, ER+, HER2- Hormonal Therapy Aromasin (exemestane) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Whole-breast: Breast, Lymph nodes Surgery Lumpectomy: Left; Lymph node removal: Sentinel, Underarm/Axillary
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Sep 22, 2021 02:06PM LillyIsHere wrote:

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.

“Within five years, cancer will have been removed from the list of fatal maladies.” That was the optimistic promise to U.S. President William Howard Taft in 1910 when he visited Buffalo’s Gratwick Laboratory, “What’s taking so long?” Dx 7/31/2019, ILC, Left, <1cm, Stage IIA, 2/5 nodes, ER+/PR-, HER2- Surgery 9/19/2019 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic ovary removal; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 11/30/2019 Femara (letrozole) Targeted Therapy

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