Genetic testing for breast cancer Revised guidelines

Posted by callalloo @callalloo, Jun 14, 2022

I had the OncotypeDX and learned a lot about the test and what can be inferred from it. I saw this article from and think people dealing with breast cancer might want to see the array of tests now available. For those with a first-ever tumor, please lobby for genetic testing...it can make a huge difference in your treatment options. One study of oncologists in Europe found that they are more likely to trust genetic test results than 'clinical history or observation.' And Oncotype occasionally gets tumor samples that were misdiagnosed as non-invasive while the tissue sample clearly showed invasive breast cancer. If your oncologist(s) opinion matches the later genetic test results, so much the better. The patient can be better reassured.

https://ascopost.com/issues/june-10-2022/asco-refines-guidance-on-using-biomarkers-for-adjuvant-endocrine-and-chemotherapy-in-early-stage-breast-cancer/

Interested in more discussions like this? Go to the Breast Cancer Support Group.

@mamanutts

Hi! New here. Im about to start my journey on AI's and in my research have found so many similarities between the different meds (with highlight on the concerns I have) I almost feel like its a crap shoot, and to go with one and see how it works and if there are too many side effects try another. I am 53 yrs old and this has been a pretty quick ride so far. My biopsy results (March 16) Invasive Lobular Carcinoma Early Stage (right breast). Surgery Was May 6 ( I opted for Double Mastectomy w/o reconstruction) and the pathology came back Invasive Ductal Carcinoma with Lobular features there was a lymph node excision and thankfully they came back negative. Pathology from surgery Grade 2 Stage 1 ER 100% PR 95% HER2 negative. I just received my Oncotype score today (13) I was also lucky enough to be able to have Genetic Cancer testing done and none of the genetic cancers came up ( I dont know if thats something smaller offices offer, God answered my prayers and I was able to get in at Duke). I am very happy with both my Surgical oncologist and my Medical Oncologist. They are both informative and take the time to answer questions. I had a partial hysterotomy back in 2003 (pre cancerous cells) so they ran hormone tests to confirm that I am post menopausal. My concerns focus highly on the depression and anxiety as I do have mental health dx Bi Polar & Generalized Anxiety prior dx of depression. Currently on Seroquel, Buproprion and Xanax. My other concerns are the Brain Fog/Memory issues. Anyhow, I just wondered if there was anyone with a similar history. Age? Hysterectomy, mental health history of dx or meds as I really wonder how much that effects things. Or any information at all honestly. My Dr. wants me to start on Anastrazole and will be calling in the rx in the next couple of days as soon as he gets the go ahead from me. We adopted our grandson who is now 11, I have to be functional. I see so much in regard to Quality of life vs quantity. Am I wrong to want both? TIA!

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I and several of my friends did 5-10 years of AI's without brain fog or any effect on mental health. Various forums have a lot of negative posts on these meds but those who do well are less apt to post. I would start and try not to assume there will be bad side effects!

I started with generic anastrazole and reacted to fillers. Different from side effects. I switched to brand name Femara. You can always try a different manufacturer or even brand name. You can also alternate days if you have any problems. My doc okayed that but I kept daily dosing.

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@windyshores

I and several of my friends did 5-10 years of AI's without brain fog or any effect on mental health. Various forums have a lot of negative posts on these meds but those who do well are less apt to post. I would start and try not to assume there will be bad side effects!

I started with generic anastrazole and reacted to fillers. Different from side effects. I switched to brand name Femara. You can always try a different manufacturer or even brand name. You can also alternate days if you have any problems. My doc okayed that but I kept daily dosing.

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Thank you. I usually try to stay away from forums for just that reason and stick to specific trusted sites and do research. Actually this is the first one I am on regarding this. It was a study on cognitive function that brought up those questions/concerns that I found while trying to research the depression/ mental health concerns, as this was the biggest concern for my Dr and naturally me. We have had discussions on some of the other more common side effects, the ones he has seen most often and things he has found to help with them. I wouldnt say Im assuming there would be these effects, I know things vary person to person, more so the question is if one reacts more than the others with mental health and or meds from personal experiences not just the research. ( due to both active or inactive ingredients) so I can be prepared. I feel like a fish out of water because I am always the one with all the bases covered, the ones who has handled all my husbands specialists/ dx's / meds for years, the go to for all the other family members regarding their issues etc and I am not feeling like I have found the same starting ground/ level of knowledge for this.
It sounds as though transitioning from one med to another is fairly simple and not uncommon, including going from the non steroidal (anastozole etc) to the steroidal (exemestane) so I will take that knowledge and proceed from there while I continue my research and education into all this. Again thank you for taking the time to respond. Im a more me this morning, less emotional/exhausted than by the time I posted last night And I apologize to all for the mis posted post. I did look to see if there was a way to delete and repost in the proper thread but did not see one, and I didnt want to have the same post on 2 threads.

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@windyshores

The recurrence risk is a percentage, the score is not.

So @huey your BCI was high risk and also showed benefit from continued anastrazole. Mine was high risk but showed no benefit from extended hormonal therapy.

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Correct. I wish OncotypeDX would use a different term for the Recurrence Score as a lot of people mistake it for the "risk of recurrence." Since the latter is a lower number, it's also more reassuring, so using terminology so similar was not well thought out I think.

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@mamanutts

Thank you. I usually try to stay away from forums for just that reason and stick to specific trusted sites and do research. Actually this is the first one I am on regarding this. It was a study on cognitive function that brought up those questions/concerns that I found while trying to research the depression/ mental health concerns, as this was the biggest concern for my Dr and naturally me. We have had discussions on some of the other more common side effects, the ones he has seen most often and things he has found to help with them. I wouldnt say Im assuming there would be these effects, I know things vary person to person, more so the question is if one reacts more than the others with mental health and or meds from personal experiences not just the research. ( due to both active or inactive ingredients) so I can be prepared. I feel like a fish out of water because I am always the one with all the bases covered, the ones who has handled all my husbands specialists/ dx's / meds for years, the go to for all the other family members regarding their issues etc and I am not feeling like I have found the same starting ground/ level of knowledge for this.
It sounds as though transitioning from one med to another is fairly simple and not uncommon, including going from the non steroidal (anastozole etc) to the steroidal (exemestane) so I will take that knowledge and proceed from there while I continue my research and education into all this. Again thank you for taking the time to respond. Im a more me this morning, less emotional/exhausted than by the time I posted last night And I apologize to all for the mis posted post. I did look to see if there was a way to delete and repost in the proper thread but did not see one, and I didnt want to have the same post on 2 threads.

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PM'ing you @mamanutts

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@mamanutts

Thank you. I usually try to stay away from forums for just that reason and stick to specific trusted sites and do research. Actually this is the first one I am on regarding this. It was a study on cognitive function that brought up those questions/concerns that I found while trying to research the depression/ mental health concerns, as this was the biggest concern for my Dr and naturally me. We have had discussions on some of the other more common side effects, the ones he has seen most often and things he has found to help with them. I wouldnt say Im assuming there would be these effects, I know things vary person to person, more so the question is if one reacts more than the others with mental health and or meds from personal experiences not just the research. ( due to both active or inactive ingredients) so I can be prepared. I feel like a fish out of water because I am always the one with all the bases covered, the ones who has handled all my husbands specialists/ dx's / meds for years, the go to for all the other family members regarding their issues etc and I am not feeling like I have found the same starting ground/ level of knowledge for this.
It sounds as though transitioning from one med to another is fairly simple and not uncommon, including going from the non steroidal (anastozole etc) to the steroidal (exemestane) so I will take that knowledge and proceed from there while I continue my research and education into all this. Again thank you for taking the time to respond. Im a more me this morning, less emotional/exhausted than by the time I posted last night And I apologize to all for the mis posted post. I did look to see if there was a way to delete and repost in the proper thread but did not see one, and I didnt want to have the same post on 2 threads.

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There are several threads on Mayo Connect dealing wiith aromatase inhibitors and many posts that cite supporting studies (so not only anecdotal, though any pattern of anecdotal reporting is worth a consideration in my opinion, but just a "consideration").

I have two friends who took aromatase inhibitors for 5 years with no cognitive effects that they, or their friends, noticed. The drugs do have side effects that need some attention, like accelerated loss of bone density as estrogen production is blocked so the 'estrogen shield' that women still producing estrogen have is lost. So it's a good idea to have a current DEXA so bone density can be monitored more closely and addressed if necessary.

I hope you ask your oncologist for a list of every kind of support available for cancer patients. There usually a lot, especially for breast cancer survivors. You have a lot of responsibilities and deserve all the help you can get and it's out there. Some will be online or by phone but nonetheless valuable.

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@callalloo

There are several threads on Mayo Connect dealing wiith aromatase inhibitors and many posts that cite supporting studies (so not only anecdotal, though any pattern of anecdotal reporting is worth a consideration in my opinion, but just a "consideration").

I have two friends who took aromatase inhibitors for 5 years with no cognitive effects that they, or their friends, noticed. The drugs do have side effects that need some attention, like accelerated loss of bone density as estrogen production is blocked so the 'estrogen shield' that women still producing estrogen have is lost. So it's a good idea to have a current DEXA so bone density can be monitored more closely and addressed if necessary.

I hope you ask your oncologist for a list of every kind of support available for cancer patients. There usually a lot, especially for breast cancer survivors. You have a lot of responsibilities and deserve all the help you can get and it's out there. Some will be online or by phone but nonetheless valuable.

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Thank you, Yes my Dr is scheduling a Bone density scan for July 1 as my last one was 4 years ago. I have received some support information from the Dr's ( Im still under the care of my Surgical oncologist as well as now the medical oncologist as well). One of the reasons I chose Duke for my care is how comfortable I have become with their services dealing with my husband for over 5 years now and for my kiddo. I have always felt like you matter with the providers, you dont ever feel like your taking up their time, your a real person not a tick on their list of appts. Teir medical equipment and labs are great. I will be honest and say I havent spent much time on their Cancer site yet. (unfortunately besides my ordeal we have had a few big family issues to deal with during this same time) however they have an entire section for services, groups, support etc on the DukeCancerInsitite.org That I will be delving into. Phone or virtual is not an issue for me. Sometimes that can help because it is a 90 minute ride to get there.

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@windyshores

Im not sure how to access that. My settings say its not disabled but it says I have no private messages.

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@mamanutts

Im not sure how to access that. My settings say its not disabled but it says I have no private messages.

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I wrote it but the site says I need to write the message before sending. I did write a message! I'll try again in a bit.

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@windyshores

I wrote it but the site says I need to write the message before sending. I did write a message! I'll try again in a bit.

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Still won't send my message. Oh well!

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@windyshores

Still won't send my message. Oh well!

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I sent one to you

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