Metastatic Breast Cancer: Really want and need to connect with others

@bgt26
Hi, thank you for your reply! Can you advise on this liquid biopsy?? I have not heard of that. Also, what bloodwork would I ask for? Thank you for any information you can give me!

@marietheresa
Hi. The one I have been getting yearly is Guardant 360. Ask your oncologist as there are a few out there like FoundationOne, and Signatera. I think each one is different. Some top medical centers will have their own version of it. You may want to ask which one would he/she do and why and make sure cost is covered by your medical insurance. Next appointment I will ask about Signatera and see whether it should be added to my testing. Wishing you the best.

Hi, thank you! I have been doing Signatera , but that is from 2021. All have been clear, even when I found out I was metastatic! But metastasis is hormone positive from 2002. I will definitely check out those other ones. Would be nice if insurance did cover one!
Wishing you the best as well! (:

@marietheresa
I think I did mentioned in a previous message that In addition to monthly blood work when I was newly diagnosed and then when I had progression the Onco center did a Guardant 360. Also this journey requires learning new vocabulary and terminology so happy to provide you things helped me a “ Patient Resource booklet titled Advanced Breast Cancer A treatment guide for patients and their family. One side deals with Advanced Breast Cancer and the side with Triple Negative Breast Cancer. Given out at at my breast cancer center. Ask your social worker to help you source the materials. Also a booklet by NCCN ( National Comprehensive Cancer Network) which is titled Breast Cancer Metastatic. It may be available online but they do not allow to post link. They were both great sources of information and helped understand my oncologist better and help get questions written up prior to my appointment making my journey easier. Also ask for the two page print out of the drug/treatment so you can be prepared for side effects. We cannot control but knowledge can help us minimize fear and anxiety. Hope these suggestions can make your journey easier and less confusing.

There mustvbe links to additional breast cancer groups that might be helpful to you and all of us.
I just had surgery and radiation for triple negative bc. I know of no other groups but would like to join some!

@bgt26
I am at City of Hope in California, and they only use Guardant reveal. I have insurance that covered it. I am not metastatic but i had breast cancer ER+/ Her2 +. PR- . Two years later MDS. Can be caused by Lynparza which i took for 1 year.
I do wonder when i hear it came back after 10 or 20 years, if chemo/radiation or surgery happened originally. I know treatments were i am based on the diagnosis and what has worked for others.

@katgob
Mine also uses Guardant. I was also on Lynparza for 1 1/2 years. Complications like an appendectomy with infection. I had ER+, PR+, HER2 -. Now is HER2 low. Those pesky cells travel through our body via bloodstream and some lay dormant but can be sneaky and bad when they want to be. It does not help that I have the BRCA2 gene mutation so it seems to be a bit of a different ball game. I have to worry about mets but I also have to be screened for pancreatic, skin, and ocular melanoma. While getting monitor for my secondary primary cancer. Well no more sun for me and I wear sunscreen, sun glasses and a hat when I am out in spring and summer. I believe medicine is rapidly changing and the microbine gut will be an area that will help developed tailored made treatments. I am all in for research and different treatment studies.

@bgt26 Thank you! I will definitely look into all these things! Knowledge is power, as they say.
You have been great, and I will be in touch ! Were you treated at Mayo? I need to research metastatic more.

I am at Weill Cornell Breast Cancer in NYC. Just ask your oncologist if they test for metastasis. Mine was diagnosed because I got a scan requested by a surgeon. So it was not a routine procedure but it got it on the onset so I was lucky. Hope all goes well for you.

@bgt26
I have Brca2 as well, Two of my 4 siblings tested and have it too. TP53 mutation and 5 q deletion causing MDS. Funny time. I was a platelet donor at the Red Cross for 25 years. Who knew i would have blood issues.
As for skin, my uncle died from a melanoma on his head. Another a squamous that metastasized. We are surely in a ball game with different bases runners. You never know if and when a new odd result occurs. Lynparza i hope did what it was supposed to. My sister did not want to take it because of my results. I told her so far it has been 3 years since i am done.
I hope my yearly or semiyearly blood test and the guardant test will reveal any of those pesky cells that do not want to remain dormant. I am at City opf Hope as i mentioned, so i to believe their goal is to find solutions before they grow into big deals.