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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@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……

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@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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@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

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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Blessings to you too @elliej. What a great attitude you have 🙂

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@windyshores

@anjalima and @polianad22

Again, Oncotype is done for 1-3 positive nodes and chemo is not assumed.

From the Susan G. Komen site: Oncotype DX helps predict the chance of metastasis and the likelihood of benefit from chemotherapy for early breast cancers that are all of the following [14,32-34]:

Tumor size smaller than 5 cm
ER-positive (and will be treated with hormone therapy)
HER2-negative
Lymph node-negative or 1-3 positive lymph nodes

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@windyshores You mentioned that the Oncotype test is done for 1 - 3 positive sentinel nodes. Would you mind sharing where you found this information?

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@anjalima

Unilateral right breast mastectomy. No chemo. ONCOTYPE 14 and 20. After a ton of research and the fact that I qualified for the TAILOR RT clinical trial ( AI only or AI plus standard fraction radiation) I declined radiation am doing AI only . 6 mos on Aromatase Inhibitor ( Anastrozole) and tolerating well . Unknown possible side effects will emerge over time ( inc. cholesterol and/or reduced bone mineral density).

What is your age? Did you get the ONCOTYPE scheduled ?

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@anjalima . Per today I am choosing to do left breast mastectomy, Dr. Alexandra Heerdt from Memorial Sloan Kettering. She told me at the meeting that they usually do an Oncotype DX. Should I schedule with the Dr. before the surgery? How many positive sentinel nodes did you find?

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@polianad22

@windyshores You mentioned that the Oncotype test is done for 1 - 3 positive sentinel nodes. Would you mind sharing where you found this information?

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@polianad22 the info on Oncotype for 1-3 nodes is honestly all over the place. Here is just one:

https://www.oncolink.org/cancers/breast/screening-diagnosis/the-oncotype-r-dx-breast-recurrence-score#:~:text=The%20Oncotype%C2%AE%20DX%20test%20is%20mainly%20used%20in,negative%20or%20you%20can%20have%201-3%20positive%20nodes.

"Who should have this test?" One factor:
"The stage of your cancer is I, II, or IIIA.
Your lymph nodes can be negative or you can have 1-3 positive nodes."

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@windyshores

@polianad22 the info on Oncotype for 1-3 nodes is honestly all over the place. Here is just one:

https://www.oncolink.org/cancers/breast/screening-diagnosis/the-oncotype-r-dx-breast-recurrence-score#:~:text=The%20Oncotype%C2%AE%20DX%20test%20is%20mainly%20used%20in,negative%20or%20you%20can%20have%201-3%20positive%20nodes.

"Who should have this test?" One factor:
"The stage of your cancer is I, II, or IIIA.
Your lymph nodes can be negative or you can have 1-3 positive nodes."

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Thank you.

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@polianad22

@anjalima . Per today I am choosing to do left breast mastectomy, Dr. Alexandra Heerdt from Memorial Sloan Kettering. She told me at the meeting that they usually do an Oncotype DX. Should I schedule with the Dr. before the surgery? How many positive sentinel nodes did you find?

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BRAVA on making your decision; such a steep and swift learning curve we must engage in.

ONCOTYPE will be performed on surgically removed tumor tissue referred to as foci. Mine was done on biopsy tissue.

You may need to have a radioactive needle insertion into the breast the day before surgery ( I DID). Then the surgeon traces the path of the foci to sentinel and axillary nodes. I had two positive sentinel nodes … the 5 above those ( next layer) were negative.

My ONCOTYPE numbers indicated no benefit from Chemotherapy… so I avoided that.

As I have Er/Pr + I am taking Anastrozole for 5… possibly more ( to be determined at year 5) . Fortunately I do not have any immediately obvious side effects ( in month 7) but Possibly some thinning of hair but may be anesthesia related. I do what I can to mitigate bone loss on AI . Will have a DEXA at one year to determine problems there. ( insurance only covers every two years).

Blessings on your journey. We will be here ready to support you on every step. 🌸

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@anjalima

BRAVA on making your decision; such a steep and swift learning curve we must engage in.

ONCOTYPE will be performed on surgically removed tumor tissue referred to as foci. Mine was done on biopsy tissue.

You may need to have a radioactive needle insertion into the breast the day before surgery ( I DID). Then the surgeon traces the path of the foci to sentinel and axillary nodes. I had two positive sentinel nodes … the 5 above those ( next layer) were negative.

My ONCOTYPE numbers indicated no benefit from Chemotherapy… so I avoided that.

As I have Er/Pr + I am taking Anastrozole for 5… possibly more ( to be determined at year 5) . Fortunately I do not have any immediately obvious side effects ( in month 7) but Possibly some thinning of hair but may be anesthesia related. I do what I can to mitigate bone loss on AI . Will have a DEXA at one year to determine problems there. ( insurance only covers every two years).

Blessings on your journey. We will be here ready to support you on every step. 🌸

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Deeply grateful for your words, wisdom and kindness. I had a very hard one / two days. I feel good today. Our narratives, thoughts are so sneaky and come in our minds without any permission. How important is to stay connected and see the whole person body, mind, and soul. We have the tendencies to go a lot in our intellect and play mind games.
Making a bean soup for my loved ones today. Wishing you a beautiful Sunday.

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@elliej

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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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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