How did you decide on breast cancer treatment based on Oncotype?

Posted by kszilvia @kszilvia, Jun 26, 2021

Hello, I was diagnosed with Invasive lobular carcinoma in February 2021. I had the lumpectomy in April, please see the final results attached. I was HER2 – and my genetics testing came back negative as well. Only radiation therapy was suggested at the time.
Now my Oncotype result came back and it is 24. My doctor suggested chemotherapy since I have a higher risk for the cancer to return.
Although he also mentioned to me that chemo usually is not effective for lobular cancer.
Was there anyone in the same situation?
Can I get any advise?
I would truly appreciate any comments.

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@windyshores

Just that intermediate scores don't have a clear cut decision. By the way the company phone line has well-trained folks who will answer all questions. I had a low Oncotype but high grade and other worrisome pathology results, a mismatch between lab and Oncotype basically, and they explained that 30% of grade 3's have low Oncotype so I was reassured. There is a study on intermediate scores. Breastcancre.org forum is a good resource too.

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Thank you so much. There was no such test when I was diagnosed. Even though I read about it, to learn, some things are just more complicated than a simple answer.

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Amazingly I was able to avoid chemo despite my grade 3 tumor. That is the main benefit of the Oncotype. And those with high scores can be sure they are doing chemo because it is necessary. The intermediate scores provide ambiguous guidance.

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@auntieoakley

I had ductal carcinoma, not lobular but I do have experience with chemo. If your pathology came back her2+, did it have a percentage of her2? This could be the reason why your doctor is recommending chemo. Your young age may have something to do with it as well, you have many years to enjoy life after cancer. I noticed on your pathology report that they implanted radiation seeds in your breast during surgery. This is a new type of radiation since I was treated, I hope you didn’t burn from them. I am a new mentor here, but I am hoping you will come back and have a conversation. Did you decide to take the chemo? Do you know what drugs you are taking?

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I had a radiation seed implanted the day before a lumpectomy. The surgeon explained that it helped identify the exact location of the biopsy, using equipment located in the operating room. It was removed, along with a titanium marker also inserted aforehand, during the surgery. I think, but don't know, that the purpose was to be expert vigilant in capturing any rogue cells that might have been displaced during the wide-needle, vacuum-assisted biopsy procedure.

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@schindler

My number was 21when I had a lumpectomy in 2013. My oncologist at the time recommended chemo because if the cancer came back “it will be hard to fight”. I had chemo. The cancer came back six years later and it has been hard to fight but I do not regret my doctors recommendation. I believe without the radiation and chemo in 2013/2014 the cancer would have come back sooner.

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It sounds as if your oncologist called it right, maybe based on some combination of data and experience dealing these cancers. I would also suspect it might have come back sooner, or even more aggressive, without the chemo giving your body a chance to recover to fight again if necessary. That's a success story in a way.

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I am not sure if this thread is still active but I am going to try anyway. @kszilvia @kszilvia, I was diagnosed in June 2022, with surgery in August 2022, with Invasive lobular carcinoma, grade 3, pleomorphic with necrosis. I am waiting for my Oncotype, but like you, I found studies that show Oncotype and chemo are effective indicators with lobular, see the below link.

add the w w w to this to et the link. I am new so cannot post links.
.mdanderson.org/cancerwise/What-is-invasive-lobular-carcinoma-8-insights-on-lobular-breast-cancer.h00-159539745.html

I had the radioactive seed as well and they said it was for location. I opted for a lumpectomy and am not sure what I will do when I get the Oncotype score.

I see some people had recurrence with chemo, some without, but this kind seems likely to come back.
@schindler, I am so sorry to hear your cancer is metastatic. I don't want to overstep, but was curious if you are willing to share, how long were you cancer free.

I have so many questions and feel so uncertain about so many things. This is so overwhelming.

I did find that Cleveland Clinic is researching as is Sloan Kettering and MD Anderson. I am shocked at how most stand of care for this cancer appears to be lumped with ductal when they are so different and I am so thankful for the research that Mayo, Cleveland, MD, and Sloan are doing. Terrifying that this become resistant to the treatments and equally terrifying how long you have to take them.

Any advice is appreciated.

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@ilcpfightee

I am not sure if this thread is still active but I am going to try anyway. @kszilvia @kszilvia, I was diagnosed in June 2022, with surgery in August 2022, with Invasive lobular carcinoma, grade 3, pleomorphic with necrosis. I am waiting for my Oncotype, but like you, I found studies that show Oncotype and chemo are effective indicators with lobular, see the below link.

add the w w w to this to et the link. I am new so cannot post links.
.mdanderson.org/cancerwise/What-is-invasive-lobular-carcinoma-8-insights-on-lobular-breast-cancer.h00-159539745.html

I had the radioactive seed as well and they said it was for location. I opted for a lumpectomy and am not sure what I will do when I get the Oncotype score.

I see some people had recurrence with chemo, some without, but this kind seems likely to come back.
@schindler, I am so sorry to hear your cancer is metastatic. I don't want to overstep, but was curious if you are willing to share, how long were you cancer free.

I have so many questions and feel so uncertain about so many things. This is so overwhelming.

I did find that Cleveland Clinic is researching as is Sloan Kettering and MD Anderson. I am shocked at how most stand of care for this cancer appears to be lumped with ductal when they are so different and I am so thankful for the research that Mayo, Cleveland, MD, and Sloan are doing. Terrifying that this become resistant to the treatments and equally terrifying how long you have to take them.

Any advice is appreciated.

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Hi @ilcpfightee, I noticed that you wished to post a URL to a resource with your post. You will be able to add URLs to your posts in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe. Clearly the link you wanted to post is not spam. Please allow me to post it for you.

– 8 insights on lobular breast cancer https://www.mdanderson.org/cancerwise/What-is-invasive-lobular-carcinoma-8-insights-on-lobular-breast-cancer.h00-159539745.html

When do you expect to get the results of your Oncotype test and to review treatments options?

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So here I am trying to make a decision regarding chemo treatment after an oncology meeting next week. The facts are single mastectomy for invasive carcinoma no specific type, grade 1 stage 1 ER PR positive, Her 2 negative, clean nodes and margins following surgery. I started on letrozole 2 months prior due to delays in scheduling and continue with minimal side effects. The Oncotype score of 28 is intermediate and surprised the oncologist. Does letrozole prior to surgery affect the Oncotype score? At 75, I am reluctant to have chemo when I consider all the positive results of my cancer. What to do now?

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I don't know if Letrozol does have an effects but if it did then it would rather I prove the test results. That means the results would be worse without the Letrozol.
You did not have any affected nodes? If you have you can ask your Do Tor about CDK 4/6 inhibitors together with letrozole. That is not as heavy as a chemo. But don't know whether you can get that without affected Lymph nodes or high risk. Personally my chemo fehlt like a Wall in the Park compared to the treatment with zoladex and exemestan that I have to do now. It is 'only' 6 months and there are good treatments for side effects. So don't be too scared about it. I was really really scared and was amazed of how 'easy' it was to get through it. I even worked! Since the exemestan I am unabke to work. Have heavy depression and fatigue :/
Talk to your Do Tor about it and See what he recommends. And if you're still u sure get another professional opinion. If both say chemo I think I would Do it.
Greetings

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@nlb122

So here I am trying to make a decision regarding chemo treatment after an oncology meeting next week. The facts are single mastectomy for invasive carcinoma no specific type, grade 1 stage 1 ER PR positive, Her 2 negative, clean nodes and margins following surgery. I started on letrozole 2 months prior due to delays in scheduling and continue with minimal side effects. The Oncotype score of 28 is intermediate and surprised the oncologist. Does letrozole prior to surgery affect the Oncotype score? At 75, I am reluctant to have chemo when I consider all the positive results of my cancer. What to do now?

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@nlb122, how did the meeting with oncology go? I hope you got some clarity about letrozole prior to surgery and the Oncotype score. I would love to hear what you learned and what treatment decisions you made with your team.

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@colleenyoung

@nlb122, how did the meeting with oncology go? I hope you got some clarity about letrozole prior to surgery and the Oncotype score. I would love to hear what you learned and what treatment decisions you made with your team.

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We did meet with the oncologist who reviewed fully every item on my pathology report. We discussed the all clear with a bilateral mastectomy and low possibility of recurrence and additional treatment. She did not think letrozole prior to surgery would affect the results. With a mid-range score of 28, we decided that chemo was not an option at my age. She ordered a mammaprint test to get more clarification but we are still waiting for the results. Because I will be more than 120 days from diagnosis, chemo benefits may be reduced anyway. That’s a consideration for anyone who is delayed for treatment. The process is now in place with mastectomy completed and an AI for 5 years with regular monitoring. We hope that is a good ending to my health story.

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