Invasive ductal carcinoma (IDC): Anyone else?

Hey elliej

I had stage 1 no node IDC. Had my surgery in july and finished my radiation in September (3 weeks)…..still struggling with a bit of side effects.

Will be on anastrazole for 5 years and very concerned about side effects. However, whatever they may be ,its better than not giving it a chance …
My SIL has been on letrozole for about a year and got some hot flashes….. her bone density test is ok so far … ..
Sometimes moving forward is difficult.

Good luck to you🙏🏻

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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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I declined radiation but it was very site-specific and would not have affected distant recurrence rate or even risk of recurrence in other breast or another area of the same breast. The lumpecfomy was in my left breast and I was concerned about any possible radiation damage to my heart.

I don't know what hyperplasia cells are so can't shed any light on the effect of radiation on them. Don't hesitate though to ask your oncologist or cancer team to explain anything that seems confusing as that's the only way you can have confidence in whatever decisions you ultimately make. I wasn't opposed to radiation per se, just felt that it didn't decrease any risks I was worried about.

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I had a diagnosis of invasive DCIS in early May of this year. I had a lumpectomy on May 27 and a lymph node removed. Was told the lymph node and margins of the duct were clear. I waived radiation and my oncologist was fine with that. I was conflicted about taking anastrozole due to the many side effects I had read about, both short and long term. I started it about 7 weeks ago, and was given a one week 'reprieve' from taking it last week when I realized my knee pain and dry eyes were much worse. I am still conficted about resuming the medication. There seems to be a very low percentage of difference between my chances of recurrence without vs. with the med. So I think I need to discuss this with the oncologist to see what other options there may be.

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I had a diagnosis of invasive DCIS in early May of this year. I had a lumpectomy on May 27 and a lymph node removed. Was told the lymph node and margins of the duct were clear. I waived radiation and my oncologist was fine with that. I was conflicted about taking anastrozole due to the many side effects I had read about, both short and long term. I started it about 7 weeks ago, and was given a one week 'reprieve' from taking it last week when I realized my knee pain and dry eyes were much worse. I am still conficted about resuming the medication. There seems to be a very low percentage of difference between my chances of recurrence without vs. with the med. So I think I need to discuss this with the oncologist to see what other options there may be.

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Hi there, my IDC was diagnosed late 2019 stage 1 but they did the oncotype test with the tissue and strongly recommended radiation, chemo and then aromatase inhibitor. I was really shocked to have to do chemo but only for 2.5 months.
The oncotype test helped convince me to do chemo.

I have been on arimidex and do get some joint pains, sometimes i need to wear a brace on my left ankle due to the pain there which allows me to walk better.
There are other aromatase inhibitors I’m told so yes talk to your oncologist about your side effects and maybe try another one. I’m told to get to the 5 year mark with AI and I’m almost 3 years in. Anything to keep this awful disease away.
I wish you the best on your journey, for the best outcome. 😊

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Hi… so everyone responds differently to meds. I typically get side effects… from almost everything.. but nothing major thats obvious ( some flashing) from Anastrozole; 7 mos in now. I do worry about the unseen bone density issue so I’ll do a DEXA in one year vs. two .

Some people do better with other AI meds.

I would love to read more about the percentages of reducing recurrences. The tissue was 98% estrogen positive so I felt a great need ( safer) to reduce estrogen in my body.

Hoping for best possible outcomes in our journeys.

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I had a diagnosis of invasive DCIS in early May of this year. I had a lumpectomy on May 27 and a lymph node removed. Was told the lymph node and margins of the duct were clear. I waived radiation and my oncologist was fine with that. I was conflicted about taking anastrozole due to the many side effects I had read about, both short and long term. I started it about 7 weeks ago, and was given a one week 'reprieve' from taking it last week when I realized my knee pain and dry eyes were much worse. I am still conficted about resuming the medication. There seems to be a very low percentage of difference between my chances of recurrence without vs. with the med. So I think I need to discuss this with the oncologist to see what other options there may be.

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The general current rule of thumb is that aromatase inhibitors may reduce the risk of ER+ breast cancer recurrence by about 42-50%.

For someone with a high risk of recurrence, that 45-50% reduction is significant. Conversely, aromatase inhibitors won't significantly reduce an already low risk.

The tricky part therefore is knowing what the baseline drug-free risk is. If your oncologist ordered genomics or other testing that yielded a risk of recurrence that you can have confidence in, you could calculate the expected possible benefit of the drugs. There are no guarantees with any of this stuff so it's hard to come up with a perfect answer while balancing actual (unknown) risk, perceived risk, quality of life and myriad possible side effects. But a second opinion, from a different doctor, may shed more light on the decision choices and relative risk.

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