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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I didn't receive those scores in 2013 when I had my stage 1 cancer, BRCA2+, double mastectomy. Receiving two different percentages indicates to me that it's not an exact science, but an estimate. I didn't do chemo or radiation since it was stage 1 and I had a mastectomy. My oncologist at that time told me my chance of survival with endocrine therapy was 99.6% and without was 99.2% because we caught it so early and mastectomy. He advised me not to take the endocrine therapy that would cause side effects since it would make little difference for me. Fast forward 7 years and my breast cancer was back in my chest wall right behind where the breast tumor was only now 3x as aggressive. My new oncologist said he totally disagrees with the other oncologist's assessment and I should have been on endocrine therapy. Maybe they have better tests now than 10 years ago? My breast surgeon who saw me 15 times during those 7 years and knew I wasn't on endocrine therapy acted surprised I wasn't and said it would have lowered my risk of recurrence by 50%. If I could go back in time I'd take the endocrine therapy. I'm on it now along with kisqali and it's tolerable. Take all precautions. Keep up your self-exams even if you have a mastectomy because I found the recurrent tumor myself. If you have any concerns or confusion about what you're hearing, don't hesitate to get a second opinion from an outside breast oncologist. Prayers for you that you'll be one and done. Although varied, your percentages are very encouraging. Take all preventative measures you can and live your life without worrying about what may or may not happen. I've been stage 4 for 2.5 years now and still get up and look forward to every day. I'm enjoying life. I have a good friend who had stage 1 at 35 years old, had a double mastectomy, not sure what other treatment, but is now 69 with no recurrence. She's living a great life with so many blessings. You will too.
First of all, I am sorry to hear that you did not receive the best information from your original Oncologist. I am in total agreement with you on seeking second and even third opinions when it comes to BC.
I had my double mastectomy in October and will be doing reconstruction with implants in June. This was a very difficult decision and I am concerned about how I will check for reoccurrence with implants in place. Did you have implants when you discovered your reoccurrence? Appreciate any information you are comfortable sharing.
No. I was not a good reconstruction candidate due to a keloid scarring disorder and my pre-existing neuropathy so the marble-sized, hard, immobile, painless lump was very noticeable on my bony chest. I just wear silicone prosthetics if going out when I want my clothes to fit nicer like work or a nice evening out. When I'm at home, walking dogs, running errands, I just wear a loosely fitting top and don't worry about it. I like comfort. Each person needs to do what is right for them. 🙂
You do ask a good question though. Definitely ask your oncologists. I just googled your question. Breastcancer.org states baseline MRI in case future issues arise, then yearly physical exams and monthly self-exams are considered sufficient. So I guess you can feel any lump through the reconstruction.
cancer.org states: reconstruction rarely hides a return of breast cancer so you should not consider this a big risk when deciding to have breast reconstruction.
Without reconstruction, I had a breast MRI the first couple years then an annual ultrasound for the next 5 years. Luckily, my annual ultrasound was scheduled just two days away when I found the lump so no waiting. Maybe they monitored me more heavily due to my BRCA2 mutation? I hope your reconstruction goes smoothly.
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.
@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.
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
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
Amazing! Did you find out what treatments did your friend do?
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.
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!