Distant recurrence risk
My oncologist ran Onco DX score for me which came back as 16. I asked her to run RSClin and my results came back 3-4% less chance of distant recurrence in 10 years with chemo (regardless of which endocrine therapy I choose). That puts me at 89-94% DFS without chemo. I’m trying to understand is that 3-4% a huge difference?
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Hello, I am someone with a double mastectomy and no reconstruction diagnosed with LCIS, lobular carcinoma in situ, which may be a precursor to lobular cancer. I asked my oncology surgeon if I should start on an endocrine therapy to further reduce my risk, she said no due to risks not justifying benefits. I am 52 years old and still having my period so my only option is Tamoxifen, which has the uterine cancer risk that is making me hesitate. I am thinking of waiting until I reach menopause and then start on an AI. Also, I feel that routine screening is important and am wondering whether breast mri for someone without reconstruction is possible. Does it involve laying on our stomach as if we had breasts except there would be nothing to insert into the hole where the breasts normally would go? Lastly, if you had continue doing yearly MRI’s,do you think your recurrence would have been caught earlier? Thanks for any input you can give me.
I travel 3 and a half hours each way to go to Mayo Clinic for some of the same reason. Plus I feel they are excellent clinicians and all staff is well trained.
I travel 7.5 hours to Mayo because that is where every staff member I encountered treated me with respect and compassion. Totally worth the time and expense to me to feel like I am being listened to and cared for.
I don't know what treatments my friend/colleague did for sure since it was 35 years ago. I only remember she elected a mastectomy because her twin sister had been battling more advanced breast cancer for a couple years and she didn't want to take any chances. It worked for her for sure. I worked with her for a long time after that and she still reaches out to me on occasion so I know she's doing well and is still full of energy. My cousin had stage III breast cancer with single mastectomy, radiation, chemo, AI and I'm not sure if any other meds. Ten years later she is still cancer free and they told her she could go off the meds. She decided if it ain't broke don't fix it and stayed on the meds. Many great long term survival stories out there. Best to you!
I'm glad you understand your results. I still am waiting for my explanation. I have an appointment on May 4th with the oncologist to learn how to interpret the results. I might end up calling back for the explanation. It stated my avg was 5% change of getting another cancer in xxx years?
Using my own tissue it said numbers are 0- 100 I am a 2, then it said If i took AI , then I have a 3% chance of getting another cancer. I told the home town nurse what I thought it meant, and was told I was wrong. I asked what it meant then? She could not tell me and couldn't I wait until my May 4th appointment. While at the C. C. they tried to explain without explaining bec it is to be my oncologist who tells me and not my radiation DR. At this point I am thinking of changing oncologist, but it would be so much better than traveling 1 1/2 hrs a way. I do not understand why it has to be so confusing. I did take some gene test, but do not understand them either. It said my STAT1 is defective. ??? Lots of love and May God Be with you in this journey.
Amazing! Did you find out what treatments did your friend do?
Hi Cindy, that was a very good suspicion. I was tested for 30 different cancer mutations including five Lynch ones. I do not see Lynch HNPCC on my list of tests - newer? I do have BRCA2 and CHEK2 (both umbrellas) and my son inherited both from me. No one else with cancer in the family has mentioned any mutations so not sure who all tested. Clearly, there has to be some genetic predisposition and it's mostly my dad's side of the family. My brothers' and grandparents' cancers are not linked to BCRA2 or CHEK2, but maybe those will be linked in the future. My son is turning 40 soon and has his list of screenings to start then. I hope he and his doctors follow the guidelines and he catches anything early. Not fun tests as you know, but I will encourage him. He particularly doesn't like that mammogram is on the list for his elevated male breast cancer risk. He finds that embarrassing and the actual procedure for a man puzzling. He said they should at least call it a manogram for men. At least he finds some humor in it all. My family has all been put on notice regarding my mutations. Some tested for BRCA2 and didn't have it. Family casualties include multiple myeloma, acute leukemia, lung cancer (never smoked), esophageal cancer, melanoma, uterine, stomach, prostate and I have breast cancer and lung NETs. On my family medical history, I just check D. All of the above. Thank you for your suggestions. Lori
I am wondering if members of your family have Lynch Syndrome-HNPCC, a genetic mutation. I have a dear friend who has eight siblings and her story sounds similar. They do have this genetic predisposition, which is an “umbrella” of cancers. She always says “knowledge is power”.
Best wishes to you and your loved ones. Cindy
@mdr3 Thank you for your kind words. You were the smart one getting a second opinion. I didn't think I had a complicated case, but apparently every case is complicated. Sorry about your side effects, but yes, the lesser of two evils.
As for attitude, I feel like I don't have a day to waste on moping around. It is what it is as they say. Each day is more precious and appreciated now more than ever. I want to be someone people still enjoy being around. I lost my brothers to cancer when they were 48 and 59 and they had poor physical quality of life from the day they were diagnosed were advanced cancers so I do feel like the lucky one at this point. Talk about genetics! We still laughed together right until the end sometimes hysterically as we reminisced and shared our Seinfeld-ish insights on life. I've already made it to 64 after first being diagnosed with cancer at 54. My family is like blackout cancer bingo with everyone getting a different kind. We will always find people better off and worse off than we are so I try to make peace with where I fall on the spectrum. Best to you on your journey and it really is a journey. We are each the captain of our own ship. It's up to us how we maneuver rough waters in search of beautiful rainbows, sunrises and sunsets.
You get A+ for best attitude ever! (and we all are learning more and more every day that attitude makes a huge difference with this stuff) Thank you for your honesty regarding endrocrine therapy. I wouldn't consider giving it up at this point, but after only 1 1/2 years in, have sufficient side effects to be tempted to do so! (elevated blood pressure, vaginal dryness which has progressed to lichen sclerosus which is in and of itself, a pre-malignancy and glaucoma). The way I look at it though, these things can be managed. A second opinion helped this post-menopausal woman move to an AI rather than a 5 yr. cookie cutter Tamoxifen treatment offered by our cottage hospital here.