Long-term LCIS?
Hello,
Has anyone been diagnosed with LCIS and not developed invasive cancer after 10, 15 years? I've been diagnosed with LCIS and elected to take anastrozole and nothing else. But I'm nervous. Thanks
Comments
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Anne if you don't get much feedback I want you to remember something. Most people who are not in active treatment may not still be posting on a board like this 5 or 10 or 15 years after active treatment. There will be some but the majority of people who don't have a repeat diagnosis arent going to be here. So you will find many more people who have a repeat diagnosis arent but that doesn't mean the others don't existed there just arent tons of them around to give you the story of hope you might want right now.
Each of us are on our own path and no matter what the statistics are there are always going to be someone whose path isn't what they would hope. Try to find a way to find the joy in the every day and not let the fear of the what if consume your days. Wishing you the best.1 -
I totally agree with quietgirl.
I was first diagnosed with LCIS in Dec, 2005, and, as far as my breast cancer diagnoses, I have not been diagnosed with anything worse. (I have had subsequent diagnoses of DH (which is NOT ADH), I think some other spots of LCIS, and ALH, in both breasts, which is perfectly the norm for LCIS patients.) I did complete a total of 5 years of tamoxifen. I have had too many mammograms, breast MRIs, breast biopsies and breast excisions to count. I have not had prophylactic mastectomies. I also have a mutation that puts a normal person at higher risk of ovarian and breast cancer (its not BRCA 1 or 2), but have not had ovarian cancer either. I have had my ovaries and fallopian tubes removed. Obviously, there is no information about people both with my mutation and LCIS because both are uncommon/rare.
I have not posted for years, but from what I can glean, the statistics models are not good enough to predict anything to really help you make a choice. I know its very hard to live with uncertainty, particularly in these times of uncertainty, and particularly if you have a history of trauma , which I do.
Anyone with a history of trauma has a tendency to go to the worst case scenario immediately. I certainly did.
You might find a breast cancer risk model that puts your lifetime risk of breast cancer at some 95% (yes, I have seen some LCIS posters say that's what a breast cancer risk model said their risk was) or 10%, (yes, I have put my numbers in some breast cancer risk calculators after my LCIS diagnosis that put my lifetime risk as less than the average woman without any particular risk factors except being a woman) but whatever the value is, a critically important value is how well do they know the number they give you (if they give you a number.) In the case of breast cancer, the answer, particularly for women diagnosed with LCIS is: not very well at all. (They may know your breast cancer risk somewhat better if you do indeed have a BRCA1 or BRCA2 mutation.)
Uncertainly is hard to live with, especially if you have a trauma history. I chose to see a mental health professional to help deal with that. Some people choose that, and for others this is not the right choice for them.
Your choices will be different than mine, because we are different people. We have different values, histories and resources.
I know my answer will cause you anger or frustration because I am not giving you flat, dependable numbers about your lifetime breast cancer risk, or the best way to reduce your risk or handle your situation. I want to respond to your question with honesty.
I also want to send you my sincere compassion in the journey you are going through. It is hard. It is not easy to work through these choices, no matter your background. You are not alone.
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FYI, I was diagnosed with LCIS around '06 or so. In late 2015 I had a bilateral mastectomy because: 1) I was getting picked apart by constant needle & excision biopsies and 2) tired of living my life in 6 month increments of anxiety 3) I lost faith in the diagnostic technology when (during the same appt) I was told I was cleared for another 6 mos and then minutes later brought back for more imaging and then told I needed a biopsy in THREE locations. At that point I decided I can't do this anymore. When I had the preventative bilateral mastectomy they discovered LCIS in the other breast which had heretofore never shown up on any form of the many types of imaging tests I had been having. I have now been nearly 10 years free of all the breast anxiety and off the medical hamster wheel. It's been PRICELESS. I have not any reason to take any meds (tamoxifen etc) either. I have no regrets.
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