Any early (less than 5yrs) local recurrence of early stage IDC?

Posted by cashemire @cashemire, Aug 6 1:10pm

I was recently diagnosed, at 70 yrs, with a local recurrence (also hormone dependent) of my BC (2.5 yrs ago: ER+, PR+, Her -; 2cm with 2 smaller nodes) (IDC) that first occurred 2.5 yrs ago, had lumpectomy back then followed by radiation for 3 wks. I did not take the AI due to feared SEs (already borderline osteo). My Oncotype was considered low ('10') and I've been told by the oncotype people that the score is in relation to distant recurrence. For this recurrence in same spot (and into skin layers) I just underwent a mastectomy 1 week ago and axillary dissection.
I don't come across many instances on this site of local recurrences similar to mine and in my timeframe. Is this really unusual? (After my radiotherapy, I was told chances were only 5% of recurrence.) And is there a relation with distant recurrences later on?

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This is heartbreaking news! I know you have a lot of questions, local recurrence is more common than distant recurrence, for this we can be truly grateful. One of the doctors I saw in my first year, told me that your cancer stages itself and decides how to act when it is the size of a pencil point. Now they have the tests like oncotype to help figure out what that is. Making it less like a roll of the dice. There is an increased risk of distance recurrence with the node involvement. You said two small nodes, does this mean two nodes were positive for cancer?

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I know a woman who had local recurrence 4 years after lumpectomy, but no radiation or AI. Her bilateral mastectomy pathology showed more than one new primary. From what I understand, women who have experienced BC are at twice the risk of more BC than women who have not had it. The AI is to lower the estrogen positive environment, the terrain so to speak, that nutured the original cancer. It is all a question of benefit vs risk, taking into consideration one's diagnosis and age, and the realization that even with low risk, some women have to be those who are on the lousy side of risk. Sorry it was you, and the two women I know who have gone through this more than once. They are both on estrogen blockers now, one on Tamoxifen due to osteopenia and the other trying Aromasin after poor SEs with Letrozole. Neither wants to take them, and I don’t either.

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@auntieoakley

This is heartbreaking news! I know you have a lot of questions, local recurrence is more common than distant recurrence, for this we can be truly grateful. One of the doctors I saw in my first year, told me that your cancer stages itself and decides how to act when it is the size of a pencil point. Now they have the tests like oncotype to help figure out what that is. Making it less like a roll of the dice. There is an increased risk of distance recurrence with the node involvement. You said two small nodes, does this mean two nodes were positive for cancer?

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Thanks for your answer! By 2 smaller nodes I meant 2 smaller tumors near the main one. My lymph nodes were all clear first time around and I am waiting to hear about this time around. I wish I could at least have avoided the axillary dissection but I guess they didn't locate sentinel nodes and had to remove all.
Again, thanks!

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@vivi1

I know a woman who had local recurrence 4 years after lumpectomy, but no radiation or AI. Her bilateral mastectomy pathology showed more than one new primary. From what I understand, women who have experienced BC are at twice the risk of more BC than women who have not had it. The AI is to lower the estrogen positive environment, the terrain so to speak, that nutured the original cancer. It is all a question of benefit vs risk, taking into consideration one's diagnosis and age, and the realization that even with low risk, some women have to be those who are on the lousy side of risk. Sorry it was you, and the two women I know who have gone through this more than once. They are both on estrogen blockers now, one on Tamoxifen due to osteopenia and the other trying Aromasin after poor SEs with Letrozole. Neither wants to take them, and I don’t either.

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Thanks for your reply. I don't know why my radiation didn't eliminate everything; I wonder if the Covid delay had something to do with it. I was assured that studies showed waiting longer than 8 weeks to start rad would be fine, I ended up waiting about 12 weeks due to Covid back in 2020.

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@cashemire

Thanks for your reply. I don't know why my radiation didn't eliminate everything; I wonder if the Covid delay had something to do with it. I was assured that studies showed waiting longer than 8 weeks to start rad would be fine, I ended up waiting about 12 weeks due to Covid back in 2020.

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I had a lumpectomy last fall and was told that site-specific radiation could lower the risk of recurrence for the cancer I had from 10% to 2% but that those numbers were assuming that I had the radiation within 3 weeks. (This was 3 weeks after the surgery.) The radiologist said that they've done radiation later than that during covid chaos and thought it was just effective.

I also had the OncotypeDX and was told by two scientists at the firm that the 'risk of recurrence within 9 years' (aka the risk percentage score, not the Recurrence Score from which its derived) applied to loco-regional, anywhere in the body' recurrence. And I that's true.

I am so sorry to read that you're dealing with this, yet alone again. I read that the greatest risk for cancer is aging which is, when one thinks about it, at least an irony as aging is itself winning against a lot of health challenges that befalled earlier generations. And therefore lucky.

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@callalloo

I had a lumpectomy last fall and was told that site-specific radiation could lower the risk of recurrence for the cancer I had from 10% to 2% but that those numbers were assuming that I had the radiation within 3 weeks. (This was 3 weeks after the surgery.) The radiologist said that they've done radiation later than that during covid chaos and thought it was just effective.

I also had the OncotypeDX and was told by two scientists at the firm that the 'risk of recurrence within 9 years' (aka the risk percentage score, not the Recurrence Score from which its derived) applied to loco-regional, anywhere in the body' recurrence. And I that's true.

I am so sorry to read that you're dealing with this, yet alone again. I read that the greatest risk for cancer is aging which is, when one thinks about it, at least an irony as aging is itself winning against a lot of health challenges that befalled earlier generations. And therefore lucky.

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Thank you Callallou for your reply! I am perplexed about the oncotype info, since you report you've been informed it applies to local recurrence along with distant, so I just wrote the company again and received a rapid reply:
''Your Oncotype DX recurrence score predicts the distant recurrence risk at 9 years with endocrine therapy alone, as well as your estimated chemotherapy benefit. Unfortunately, recurrent tumors were not validated in the Oncotype clinical studies therefore we are unable to perform testing on recurrent tumors since they are outside of our criteria.

We did not observe local recurrence risk in our validation studies, only distant recurrence risk. We are only validated to report out information on patient's distant recurrence risk.''

I also asked what features in the genomic assay were associated with the distant risk, but did not receive a reply about that. I realize this is probably not of great interest to others, but since I am recovering from this recent local recurrence, I am just really hoping I remain protected from the a distant recurrence given my relatively safe, low Oncotype score.

Again, thanks for your input!

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@cashemire

Thank you Callallou for your reply! I am perplexed about the oncotype info, since you report you've been informed it applies to local recurrence along with distant, so I just wrote the company again and received a rapid reply:
''Your Oncotype DX recurrence score predicts the distant recurrence risk at 9 years with endocrine therapy alone, as well as your estimated chemotherapy benefit. Unfortunately, recurrent tumors were not validated in the Oncotype clinical studies therefore we are unable to perform testing on recurrent tumors since they are outside of our criteria.

We did not observe local recurrence risk in our validation studies, only distant recurrence risk. We are only validated to report out information on patient's distant recurrence risk.''

I also asked what features in the genomic assay were associated with the distant risk, but did not receive a reply about that. I realize this is probably not of great interest to others, but since I am recovering from this recent local recurrence, I am just really hoping I remain protected from the a distant recurrence given my relatively safe, low Oncotype score.

Again, thanks for your input!

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Hmmm. I can understand if Oncotype's reply is differentiating between 'spread' of an original cancer versus a later, new cancer deemed a 'recurrence' by virtue of chronology, though conceptually the same cancer just not fully destroyed by treatment or surgery. That could be considered, incorrectly, a 'local' recurrence?

I talked to a senior science guy at the company and when he used the word 'local' he meant in the same general area, but not necessarily the same site. And said the risk percentage applied to 'loco-regional' recurrence. To me, the reply you received raises more questions, starting with exactly what they're calling 'distant.' Would cancer in the opposite breast be 'distant'?
The terms are important.

I'll try to talk to the same senior person at the company who clarified some stuff before for me. I have some lingering questions anyway, including how to get a copy of which genes were assayed and if there were any mutations found and what the Recurrence Score means. One thing that he told me, which I found interesting, is that the test result is based strictly on what the lab sees. The results aren't further tweaked for any demographic variables or other risk assumptions.

If I get a clearer answer, if it's OK with you, I'll private message you to prevent skewing off topic for those not interested.

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@callalloo

Hmmm. I can understand if Oncotype's reply is differentiating between 'spread' of an original cancer versus a later, new cancer deemed a 'recurrence' by virtue of chronology, though conceptually the same cancer just not fully destroyed by treatment or surgery. That could be considered, incorrectly, a 'local' recurrence?

I talked to a senior science guy at the company and when he used the word 'local' he meant in the same general area, but not necessarily the same site. And said the risk percentage applied to 'loco-regional' recurrence. To me, the reply you received raises more questions, starting with exactly what they're calling 'distant.' Would cancer in the opposite breast be 'distant'?
The terms are important.

I'll try to talk to the same senior person at the company who clarified some stuff before for me. I have some lingering questions anyway, including how to get a copy of which genes were assayed and if there were any mutations found and what the Recurrence Score means. One thing that he told me, which I found interesting, is that the test result is based strictly on what the lab sees. The results aren't further tweaked for any demographic variables or other risk assumptions.

If I get a clearer answer, if it's OK with you, I'll private message you to prevent skewing off topic for those not interested.

Jump to this post

I’m very interested and would greatly appreciate it if you message me as well. I

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@callalloo

Hmmm. I can understand if Oncotype's reply is differentiating between 'spread' of an original cancer versus a later, new cancer deemed a 'recurrence' by virtue of chronology, though conceptually the same cancer just not fully destroyed by treatment or surgery. That could be considered, incorrectly, a 'local' recurrence?

I talked to a senior science guy at the company and when he used the word 'local' he meant in the same general area, but not necessarily the same site. And said the risk percentage applied to 'loco-regional' recurrence. To me, the reply you received raises more questions, starting with exactly what they're calling 'distant.' Would cancer in the opposite breast be 'distant'?
The terms are important.

I'll try to talk to the same senior person at the company who clarified some stuff before for me. I have some lingering questions anyway, including how to get a copy of which genes were assayed and if there were any mutations found and what the Recurrence Score means. One thing that he told me, which I found interesting, is that the test result is based strictly on what the lab sees. The results aren't further tweaked for any demographic variables or other risk assumptions.

If I get a clearer answer, if it's OK with you, I'll private message you to prevent skewing off topic for those not interested.

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Yes, will be looking forward to what you find out!

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@jaynep

I’m very interested and would greatly appreciate it if you message me as well. I

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I will. It might take a week to get it done, but I promise.

Medical usage can get very precise and we need to know what so many terms mean. When reading medical research studies, they talk about mid-point targets and end-point targets and phase results. I read a that was lamenting that many patients don't understand what they read….buy the irony is that neither did many participants who work in health care!

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@jaynep

I’m very interested and would greatly appreciate it if you message me as well. I

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Me too

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@cashemire

Yes, will be looking forward to what you find out!

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Of course all the scientific language is new to me but I’m beginning to understand it more as I read studies etc. I am not a medical professional but this is what I have gathered… please continue to check with your physicians for accuracy.

My understanding is that “ distant “ refers to a metastatic cancer of the tumor removed ( secondary to and related to the original cancer showing up elsewhere in the body).
A new cancer in a second breast would be a new “primary cancer” . My breast surgeon told me that a primary cancer does NOT jump to a second healthy breast.

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