Screening guidelines for first line family members

Posted by gillbell84 @gillbell84, Aug 8 6:16pm

Hi - Has anyone come across official guidelines for screening guidelines if you have breast cancer at the age of 43 and your have sisters - when they should start screening for breast cancer? Cedars Sinai said at least 10 years before my diagnosis so from the age of 33 but I cant find this anywhere on any of the official websites like ACS.

Be great resource to refer to as my sister lives in Ireland and they are so far behind with screening programs for breast cancer - average risk doesnt start till 50 and there are no guidelines for higher risk just that you need to be referred.

Thanks
Gill

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@gillbell84

Here are American Cancer Guidelines for average and high risk:
https://www.cancer.org/cancer/types/breast-cancer/screening-tests-and-early-detection/american-cancer-society-recommendations-for-the-early-detection-of-breast-cancer.html
Myself and 2 sisters have been diagnosed with breast cancer, though genetic testing does not indicate a genetic mutation. I am advising my nieces to be tested early.

There is also a risk predictor based on age, family history, genetic, ethnicity, first period:
https://bcrisktool.cancer.gov/
But always best to discuss with provider.

Did you do genetic testing?

REPLY

My breast surgeon- Dr. Ami Polvirini and Medical Oncologist Dr Patel went to Cedars from City of Hope in 2022. Both recommended genetic testing and COH does it for free. They also test family for free although there is a time limit. My sister in NY went with her dr to get it done. My brother finally to Kaiser. Both carry the genetic mutation I do. My sisters daughter found out she carries it. Our older sister did not get tested. Ovarian cancer came to her 2 years after me in 2023.
Thank you for the guidelines. Like the family letter i got from Genetics, I will share this too.

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My aunt lives in the UK. Unfortunately the because of the NHS its really difficult to get early screening for any disease. She would need to start with her GP and convince him or her to refer her for early surveillance.
Here is the link to the Nhs screening. https://www.nhs.uk/conditions/breast-screening-mammogram/when-youll-be-invited-and-who-should-go/#:~:text=You'll%20automatically%20get%20your,be%20invited%20for%20breast%20screening.
I would encourage her to compete an online risk assessment for breast cancer like the Gail model or IBIS and take it to her next appointment. She will have to be persistent, it will be difficult. There are options for enrolling or buying into private healthcare but I think its expensive.

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When I was diagnosed there was only BRCA 1 and BRCA 2 that they could really identify and test for. Now they understand many more and I have two, getting it from both sides of my family. If relatives cannot get genetic counseling because of where they live, encourage them to maintain a rigid screening schedule. It is difficult in the times we live in to get that done, but worth the effort if it finds a cancer early.
If you have had genetic counseling, do you know what your increased risk is? Do you know what cancer or other diseases to look for?

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I don't have official recommendations just personal experience. I was diagnosed with IDC in October 2022 as a result of my annual mammogram. I am very bad about self examination, even now. So screenings are important. It was only 4mm with 8 mm margins with no node involvement. I had a lumpectomy with radition. I also did the genetic testing and do not have any of the markers that they currently screen for. My family history of breast cancer tells a more complete picture. Breast cancer first touched my extended family through my material aunt who had a double mastectomy, which she survived for many years. She died of bone cancer in 1996. Was it breast cancer that had metastasized? We don't know the answer to that question. My older sister, on her first mammogram, was diagnosed with breast cancer in 1992 and had a mastectomy, as that was the only option then. There was no genetic testing then either. She is a 32 year survivor. When she was diagnosed I started having yearly mammograms at age 36. Five years ago, my younger sister was diagnosed with breast cancer and had a lumpectomy, chemo, and radiation. She had genetic testing done with no markers found. She just celebrated being 5 years of no breast cancer. I share to stress the genetic testing is a good tool but isn't the only tool in our tool box. Screening are vital and we have to be our own advocate. We need to be assertive in getting the screening, treatment and answers to our questions.

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