Invasive ductal carcinoma (IDC): Anyone else?

Posted by 6750 @6750, Mar 2, 2019

I have rec’d 4 chemo + 16 radiation treatments for invasive. Has lumpectomie 1st....then one week later...
Dissection 17 lymph nodes & 3 tumors removed tumors
Got clean margin.

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@windyshores

@elliej: Atypical ductal hyperplasia (see below) is not cancer yet so that may be why radiation doesn't affect it. Your Oncotype score was 16 but your risk of recurrence was 4%? Assuming this was with tamoxifen. That seems low for a score of 16 but there may be mitigating factors so that is an encouraging number. From googling:

Atypical ductal hyperplasia is a histologically borderline lesion that has some, but not all, of the features of ductal carcinoma in situ. Sometimes the distinction between Atypical ductal hyperplasia and ductal carcinoma in situ are simply defined on the number of ducts involved.
Pathology
Atypical ductal hyperplasia is a lesion with malignant potential. It lacks the strict criteria for ductal carcinoma in situ, with <2 ducts involved 3.

I think we all need to be careful in comparing our cases. @callalloo had DCIS (invasive), you have invasive ductal grade 1, I had invasive mixed ductal and lobular grade 3. All I can say is that if you feel trust on your doctor, move forward. If you don't, then get another opinion(s).

It sounds like you are ready to roll with radiation. Since you had a lumpectomy, that seems reasonable and your doc suggested it (though you have a choice of course). I really hope you give hormonal meds a good chance. Side effects change and ease up over time, in my experience, if not others'. I am around your age and get it!

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Wow, such great info, thank you. You are very knowledgeable and have given me reassurances in regard to upcoming radiation and pills too. I’m planning on moving forward, have my simulator radiation this Wednesday. Followed by the 5day course.
Input from helpful and concerned girls like you, really do make a difference when our heads seem so confused and wavering about the unknown and scary outcomes. Blessings, Windyshores😘

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@elliej

Thanks Again for good advise. My rate of recurrence on the OncoType test is 4%. Did you say that you opted out of radiation? One of my concerns is the pathology report of Hyperplasic cells. The radiologist said radiation would Not affect those. That I don’t understand. Do you know anything about that? More confusion……

Jump to this post

@elliej: Atypical ductal hyperplasia (see below) is not cancer yet so that may be why radiation doesn't affect it. Your Oncotype score was 16 but your risk of recurrence was 4%? Assuming this was with tamoxifen. That seems low for a score of 16 but there may be mitigating factors so that is an encouraging number. From googling:

Atypical ductal hyperplasia is a histologically borderline lesion that has some, but not all, of the features of ductal carcinoma in situ. Sometimes the distinction between Atypical ductal hyperplasia and ductal carcinoma in situ are simply defined on the number of ducts involved.
Pathology
Atypical ductal hyperplasia is a lesion with malignant potential. It lacks the strict criteria for ductal carcinoma in situ, with <2 ducts involved 3.

I think we all need to be careful in comparing our cases. @callalloo had DCIS (invasive), you have invasive ductal grade 1, I had invasive mixed ductal and lobular grade 3. All I can say is that if you feel trust on your doctor, move forward. If you don't, then get another opinion(s).

It sounds like you are ready to roll with radiation. Since you had a lumpectomy, that seems reasonable and your doc suggested it (though you have a choice of course). I really hope you give hormonal meds a good chance. Side effects change and ease up over time, in my experience, if not others'. I am around your age and get it!

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@callalloo

I opted out of site-specific radiation (5 sessions over 10 days). I had an OncotypeDX 'risk of recurrence' score of 3% so no chemo was recommended. I tried an aromotase inhibitor, twice, with resulting side effects that were, for me, not tolerable for such a low recurrence risk.

If the number 16 you cite is your OncotypeDX 'risk of recurrence' number (not the trade-marked Recurrence Score on your report), you can roughly calculate your predicted risk of recurrence as around 30% if you do NOT take aromatase inhibitors or tamoxifen according to the OncotypeDX algorithm. I would consider that a high enough risk that I would at least try the aromatase inhibitors and get an endocrinologist or rheumatologist to help monitor osteoporosis.
It's a personal decision that a lot of us are faced with so you might also get a second oncologist to opine. There may be something that she/he sees in clinical evaluation to suggest a prognosis based on real-world oncology experience.

I would likely at least seriously consider the short-course radiation. Nothing is risk-free but I've known people who've had it without side effects or complications. But that too would be something I'd get a second opinion about.

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Thanks Again for good advise. My rate of recurrence on the OncoType test is 4%. Did you say that you opted out of radiation? One of my concerns is the pathology report of Hyperplasic cells. The radiologist said radiation would Not affect those. That I don’t understand. Do you know anything about that? More confusion……

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@callalloo

I had zero positive lymph nodes and had the OncotypeDX. Ditto two friends.

I've not heard of it being specifically recommended for 1-3 positive nodes but 0 positive isn't precluded.

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Yes, 0 is likely precluded. I believe that 1-3 positive nodes means anything over 3 is not eligible for the ONCOTYPE analysis ( perhaps non predictive).

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@elliej

I finally received my ONCOType score of 16, which I believe is good. I have Stage 1, IDC and wondered if anyone else has opted to not take radiation or an AromatasevInhibitor. I am 73 and my Radio-oncologist said I could opt out of the radiation or choose 5day course. The Oncologist suggested taking the pill for 5 years. I have a family history of Osteoporosis. I’m afraid to take it, and afraid not to. Please advise or let me know if you opted out. Thank you

Jump to this post

I opted out of site-specific radiation (5 sessions over 10 days). I had an OncotypeDX 'risk of recurrence' score of 3% so no chemo was recommended. I tried an aromotase inhibitor, twice, with resulting side effects that were, for me, not tolerable for such a low recurrence risk.

If the number 16 you cite is your OncotypeDX 'risk of recurrence' number (not the trade-marked Recurrence Score on your report), you can roughly calculate your predicted risk of recurrence as around 30% if you do NOT take aromatase inhibitors or tamoxifen according to the OncotypeDX algorithm. I would consider that a high enough risk that I would at least try the aromatase inhibitors and get an endocrinologist or rheumatologist to help monitor osteoporosis.
It's a personal decision that a lot of us are faced with so you might also get a second oncologist to opine. There may be something that she/he sees in clinical evaluation to suggest a prognosis based on real-world oncology experience.

I would likely at least seriously consider the short-course radiation. Nothing is risk-free but I've known people who've had it without side effects or complications. But that too would be something I'd get a second opinion about.

REPLY
@windyshores

We don't know grade, whether you had lymphovascular invasion, size or other factors so hard to "advise."

I had Ontotype of 8, grade 3, LVI. I was told that one in 5 radio-oncologists would recommend radiation. I opted to take Femara (letrozole) but did not do radiation. But that's me.

I already had had osteoporosis when I went on Femara and my doc did not want to do Reclast (due to my afib, but that issue has since been resolved). I lost more bone the first year, but then the bone loss eased- similar to what happened with menopause.

You can take Prolia or a biphosphonate during treatment, if the bones become an issue. I am now on Tymlos and regaining my bone density, I hope.

There is so much fear about aromatase inhibitors. I have to confess I was eager to take them and miss the feeling of safety!

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Hey, Windyshores,
Thank you for your response. I have Stage 1, no node, IDC. Surgery on Sept. 27th. I met today with my team. We decided on a short course of radiation ( 73 years old), so 5 days. Also, I will try Letrozole and watch for any intolerable side effects. Feeling relieved about decision making. Finally moving forward!

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I am 65 and had a 12mm tumor removed in July with a lumpectomy. I had stage 2, I think, and an oncotype of 23 I think, so need for chemo, and managed to get the radiation during surgery. I was grateful for that. I have been taking an AromatasevInhibitor for a few months, and so far, I have not had any side effects, though at the beginning it did make me a little hyper, so moved to taking it to the morning, and that has helped that issue.
It's too soon to tell how this will effect osteoporosis, though I'm told I will be checked yearly, and am encouraged to do strength training exercises, eat a good diet with calcium. I do all of that in hopes that it will help offset the side effects.

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@flowers7777

I have invasive ductile carcinoma in left breast - very small, slow growing and Stage 1. Trying to decide between lumpectomy and mastectomy- thoughts?

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Hello @flowers7777 . Did you have lumpectomy or mastectomy?

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I noticed that some major hospitals do the axillary nodes removed after on week or two. @6750 Was it hard to remove the lymph nodes after the surgery?

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@elliej

I finally received my ONCOType score of 16, which I believe is good. I have Stage 1, IDC and wondered if anyone else has opted to not take radiation or an AromatasevInhibitor. I am 73 and my Radio-oncologist said I could opt out of the radiation or choose 5day course. The Oncologist suggested taking the pill for 5 years. I have a family history of Osteoporosis. I’m afraid to take it, and afraid not to. Please advise or let me know if you opted out. Thank you

Jump to this post

We don't know grade, whether you had lymphovascular invasion, size or other factors so hard to "advise."

I had Ontotype of 8, grade 3, LVI. I was told that one in 5 radio-oncologists would recommend radiation. I opted to take Femara (letrozole) but did not do radiation. But that's me.

I already had had osteoporosis when I went on Femara and my doc did not want to do Reclast (due to my afib, but that issue has since been resolved). I lost more bone the first year, but then the bone loss eased- similar to what happened with menopause.

You can take Prolia or a biphosphonate during treatment, if the bones become an issue. I am now on Tymlos and regaining my bone density, I hope.

There is so much fear about aromatase inhibitors. I have to confess I was eager to take them and miss the feeling of safety!

REPLY
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