I don't know what I don't know.
My mom was diagnores pretty recently. I know it's ductal carcinoma. But she was too rattled to tell me if it's in situ or invasive and I don't know if there are more than that. Not sure it matter in terms of next steps. It's very small regardless. 1.5mm. So maybe even it's it's invasive it doesn't make a difference in terms of treatment at this point?🤷♀️
She's has her first onco team soon. Lumpectomy in the next couple weeks and they will check nodes during I guess. Then radiation. All of this is unless onco team decides otherwise since she doesn't have all her receptor results from biopsy yet. I guess that could all change treatment plans.
So stemming from that...Is it better to NOT have receptor based stuff or does that actually make it easier to treat? For example if it's estrogen receptor positive...is that easier to treat than if it's receptor negative? Is positive receptor stuff good or bad! I can't even tell based on internet stuff. I hope that makes sense. I'm trying to learn terminology at this point. Also, how long is radiation usually? Or is that totally varied depending on person?
Please, any insight about this. It sounds so small. I find myself wondering how it didn't all just get sucked up in the biopsy! (Naive I know).
Also, if this triggers any questions in your brain could you let me know? Not only do I not know terminology, I don't know what info I'm missing. All I have is a broad type of cancer and a size. What should we be asking? I don't know what I don't know so I don't know what to ask.
How much do I actually even know right now? The doc so far says it's curable. Didn't seem to have any doubts.
Comments
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Generally it is considered favorable to be ER+, because that means that anti-hormonal drugs can help prevent recurrence, to be PR+, because that tends to slow down the progression of ER+ cancer, and to be HER+, because nowadays there are some medications that work very well to treat HER+ cancer. ER+/PR+ also sometimes means avoiding chemotherapy.
On the other hand, even with a triple negative cancer, with such an early stage tumor, prognosis can be excellent.
Radiation can vary, but for many women it is about 20 treatments.
There is so much to know and it will all keep trickling in. I'd say the main thing is that actually, there's a lot of info that won't be known (for certain) until after the lumpectomy/SNB and pathology, and even after that you may be waiting for genomic testing results. It's a long haul and it can be very nerve wracking. But the bottom line is that, like her doc said, the prognosis is excellent. Her life will be turned upside down in the short term, and depending on her treatment plan and her body's response to meds, the short term might start feeling annoyingly long. But she should not be planning on dying from this
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In situ vs. invasive is the first most important thing to find out, because it makes a big difference in what comes next.
With DCIS (in situ), nodes don't need to be checked and chemo is completely off the table. Endocrine therapy (anti-hormone therapy) that is prescribed for ER+ invasive breast cancers is also usually recommended for ER+DCIS, but it much more of a choice than a necessity, because in situ cancers don't present a risk of metastasis. And HER2 status, which is critical for invasive cancers, is irrelevant for DCIS.
Can you get a copy of the pathology report for the biopsy?
And how old is your mother? Age counts when it comes to recommending treatment based on as assessment of future risk.
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Thanks. I figured the in situ vs invasive is critical to know. I think it must be invasive because she's having the lumpectomy and they said they'd check nodes during. If there is no reason to worry about nodes with DCIS, I guess that wouldn't be happening. Does that sound right?
Pathology is still working on receptor stuff but it'll be ready Friday I think. I'm going to ask if she will let me see it. She hasn't mentioned Her2, but maybe it's too early to know until after biopsy...
She's 63. So far the plan is lumpectomy in the next few weeks and then radiation with mention of medication before the lumpectomy (I think) but I don't know what the goal of that is or even what it would be directed at
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So if it's none of those, is that when they say it's triple negative? And then it's harder to treat with targeted meds possibly? I always thought the receptor things were BAD so this is all new to me. Thanks!
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Mebechamp--there really isn't good or bad when it comes to these things. The "triple positive", "triple negative" refer to estrogen receptors (ER), progesterone receptors (PR), and HER2 status. Be aware the initial HER2 test is often equivocal, so they may have to re-test and it can take a while longer to get the final determination. For my DCIS, the breast surgeon said it was up to me as to whether or not to look at lymph nodes, but he wasn't expecting to find anything so I said no. My guess is your mother has IDC, caught very early (good!!). I was told that while HER2+ tumors are more aggressive, they also have a better outcome, specifically because of Herceptin. It's also possible that if your mother is ER+/PR+/HER2-, they may do an Oncotype test, which will predict whether or not chemo would be effective. It's increasingly common for women with small Stage 1 tumors *not* to need chemo.
Bottom line is it is very treatable--your mom might have a rough couple of months/year or so, but she'll get out the other side and life can move back toward normal. Also, as has been echoed often on this site, it's this initial time before you have all of the specifics that is in some ways the roughest. Once she has a complete diagnosis and treatment plan in place, she can put her big girl panties on and get on with it. Best to you both.
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Thank you for this. I'm so impatient and I know it. Thank all of you for your patience and the explanations I can't get from my parents right now because they've forgotten or not absorbed it because of shock. I'm getting so much info second hand. It took me until yesterday to finally figure out if the measurement was in mm or cm. My mom and dad both couldn't remember. Finally my dad said "it's so tiny I could barely see it on the ruler" that I finally could make an assumption. So thanks for splicing together all the bits I do get to make sense of it for now
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Actually, contrary to what Ingerp implies above, triple negative is usually a worse prognosis because you don't have receptors to target. As Salamandra points out, being ER+ means you have anti-estrogen therapy options.
The development of Herceptin two decades ago was like the creation of a miracle drug. There was a lottery to determine who would be able to get the med when it was in short supply.
Also keep in mind that no one dies of cancer which remains localized in the breast. It only becomes life threatening when it spreads to organs like lung, brain or liver. Metastatic disease is what kills, not early stage...
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