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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There are parameters for the various Oncotype tests, including the OncotypeDX. (The parent company is Exact Sciences.) I mention this in case someone had a cancer that was not submitted for an OncotypeDX and wonders now if the oncologist was remiss in failing to explore that option.

And there are several different tests now available from the company, each with a very specific objective. So when someone mentions 'the Oncotype' test, ask which specific test is being referred to in order to avoid confusion. Or accidentally talking about very different tests.

There is an increasing selection of genomics tests for breast, and other, cancers so expect some new names to ask doctors about too probably. I wish I'd known more about this before my Bad News Biopsy but glad that my oncologist did as the OncotypeDX made treatment decisions simpler.

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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

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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

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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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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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@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 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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@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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@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

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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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@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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@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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