Chemo or not

Posted by cedar @cedar, Nov 21, 2022

My wife was recently diagnosed with Lobular Carcinoma. She had a partial lumpectomy and had one node removed which came back positive. She is 43 and her Mammaprint came back ultra low risk, but clinical high due to the node. We were really excited when we read the results but just had a meeting with her Oncologist who stated because of her age recommending chemo. I have read in so many places that chemo vs drug therapy are pretty equal in this type of cancer. Can anyone help? Thanks!

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What was her score for ER and PR? Can she also have an Oncotype Dx test? If her ER is highly positive, hormonal meds (tamoxifen or ovarian suppression with an aromatase inhibitor to follow?) may be effective.

The Oncotype tells whether chemo will be of benefit or not, with hormonal meds assumed. So the Onctype is only used for those who are ER+ and HER2-.

I had different tests done at diagnosis (Oncotype) and the 5 year point on meds (Breast Cancer Index and Prosigna Assay) and the risk was different on all of them. It would be reassuring for you if the Oncotype says no chemo.

Do you have grade 3? The one node is probably what is concerning to your MD. Is radiation being discussed? Tough decisions!

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Thank you for the reply.
She is grade 2, and she did the Agendia Mammaprint test which her result was low risk and at the 5-year mark says no benefit to chemo. He believes at the 8-year mark is where the recurrence rate jumps from 6% with chemo to 12% without.
She is ER+ PR + and Her2 -
Luminal A Type.
MD believes Chemo followed by Radiation as well as ovarian suppression and AI to follow. He believes her age 43, and being premenopausal plays a role in his decision. We are just stuck thinking does she actually need chemo or would the ovarian suppression, AI, and radiation be just as beneficial? Yes, very tough decisions.

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@cedar - I’m so sorry that your wife has to go through this.
There are so many decisions to make - and confusing treatment options.
I’m not able to give advice on current testing and hormone therapy.
I was diagnosed 30 years ago, invasive ductal, hormone receptors negative.
I was 48- premenopausal and had mastectomy and chemo.
I went to Sloan Kettering for a second opinion- they were in agreement with the treatment plan.
My only advice for your wife is to get a second opinion- and a third if necessary. You should go to a university hospital with an excellent oncology department.
Wishing your wife the best!

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What is the actual ER score?

For hormonal cancers, we all have an increase in risk over the years, past 5 years.

Risk and benefit from chemo may be independent of each other.

I would
1) request an Oncotype as well. In my experience tests can vary in results but it would be reassuring to get a similar risk level. You will have to locate and ship post-surgical specimens. I actually got involved in choosing which block to try to get the highest risk area sent to the Oncotype lab.
2) get however many opinions you need to feel sure (I got 4!). Consider seeing an oncologist who specializes in lobular, like Oscar Metzger https://www.dana-farber.org/find-a-doctor/otto-metzger/ He has some videos online about lobular. One example of specific concerns with lobular: lobular is always tubular. how does that make the grade look worse than it is?
3)Is tamoxifen a possibility?

Again the key question is not necessarily risk but whether chemo is of benefit (and how much benefit from hormonal treatment). I say that as something to explore, not something I have definitive info on (especially for a younger person). But the common idea that a cancer is "worse" if chemo is given is not necessarily true. I know women with one positive node who did not do chemo. Get more opinions!

Lobular is different from ductal and there is some advocacy going on for that subset. https://lobularbreastcancer.org/ Get in touch with those who are expert in this area.

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@windyshores

What is the actual ER score?

For hormonal cancers, we all have an increase in risk over the years, past 5 years.

Risk and benefit from chemo may be independent of each other.

I would
1) request an Oncotype as well. In my experience tests can vary in results but it would be reassuring to get a similar risk level. You will have to locate and ship post-surgical specimens. I actually got involved in choosing which block to try to get the highest risk area sent to the Oncotype lab.
2) get however many opinions you need to feel sure (I got 4!). Consider seeing an oncologist who specializes in lobular, like Oscar Metzger https://www.dana-farber.org/find-a-doctor/otto-metzger/ He has some videos online about lobular. One example of specific concerns with lobular: lobular is always tubular. how does that make the grade look worse than it is?
3)Is tamoxifen a possibility?

Again the key question is not necessarily risk but whether chemo is of benefit (and how much benefit from hormonal treatment). I say that as something to explore, not something I have definitive info on (especially for a younger person). But the common idea that a cancer is "worse" if chemo is given is not necessarily true. I know women with one positive node who did not do chemo. Get more opinions!

Lobular is different from ductal and there is some advocacy going on for that subset. https://lobularbreastcancer.org/ Get in touch with those who are expert in this area.

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ps Lobular is harder to find in imaging. Did they do an MRI or ultrasound of the entire breast as well as the other breast?

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@windyshores

ps Lobular is harder to find in imaging. Did they do an MRI or ultrasound of the entire breast as well as the other breast?

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@windyshores thank you so for the info. Her ER score is 8. They did a follow up CT and MRI 1 week prior to meeting with Oncologist. There was nothing found. We have a teach this morning with the Oncologist's nurse. Again, I am just trying to weigh the benefits of Chemo vs Endocrine Therapy only and it's so difficult as information is changing daily.

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@cedar

@windyshores thank you so for the info. Her ER score is 8. They did a follow up CT and MRI 1 week prior to meeting with Oncologist. There was nothing found. We have a teach this morning with the Oncologist's nurse. Again, I am just trying to weigh the benefits of Chemo vs Endocrine Therapy only and it's so difficult as information is changing daily.

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Glad nothing else was found! Hope you can get another opinion....if only to feel reassured.

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I am waiting for a second opinion apt. I was on Verzenio for 42 days and ended up in the hospital. From side effects too much to handle
The drug caused a blood clot in my lung, and I am on blood thinners to ensure I do not develop any more clots. I was nonfunctional, so weak, and unable to do anything at all.
My current oncologist wants me to stay on this drug at a lower dosage.
Unless the second opinion is hopefully with another chemo drug. I will live the rest of my life without chemotherapy.
I have lived a wonderful life, and thank God.

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@millard

I am waiting for a second opinion apt. I was on Verzenio for 42 days and ended up in the hospital. From side effects too much to handle
The drug caused a blood clot in my lung, and I am on blood thinners to ensure I do not develop any more clots. I was nonfunctional, so weak, and unable to do anything at all.
My current oncologist wants me to stay on this drug at a lower dosage.
Unless the second opinion is hopefully with another chemo drug. I will live the rest of my life without chemotherapy.
I have lived a wonderful life, and thank God.

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I hope docs have another treatment option for you. Or perhaps blood thinners will help you stay on this one. Let us know!

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Hi @cedar I would encourage you to ask these questions of your oncologist as well, take the list in and ask. We all have differences in our cancers and the choices we make at original diagnosis can affect our lives far down the road. The younger we are at diagnosis, the more important those choices are. I was in my 30s when I was diagnosed, and I took the full boat of treatments, surgeries, chemo, radiation, and endocrine therapy. It was really hard, but I am at 18 years almost to the day. I am still here to whine about it, and I don’t look back and wonder if I did all I could do.
I would also consider a second opinion if I am not confident in the doctor I have. A conversation never hurt anybody.
Thirdly I would get into this conversation, because lobular cancer is a horse of a different color from ductal carcinoma. These are people who have made these choices and can talk to you about that experience.
Lobular breast cancer, let’s support each other. https://connect.mayoclinic.org/discussion/lobular-breast-cancer/
How did it go with the oncology appointment?

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