Long term "high oncotype test" survivors
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Nottoday, are you done with your AI? My plan is to have ctDNA measured when I hit year 5 of my AI. That would be the only reason I might stay on this hell drug beyond 5 yrs. Hoping in the next 1.5 yrs that test becomes more mainstream.
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Hi Murfy,
I did 5 years of AI, finishing in March 2020. My MO and I discussed the evidence we could find, and it did not indicate a big benefit beyond 5 years. I was getting concerned about bone density issues, and general fatigue.
Are you able to get your ctDNA measured at your medical center? If so, maybe I'll go there.
This kind of testing seems to have been in development for years without having yet become routine.
Hang in there on the AI! Sorry it has been difficult.
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Hi
With on other score 50 was there any recurrence
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Looking for some more information from high oncotype score survivors. Any node positive survivors out there. 🙂
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Bump
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Any new high oncotype scores out there especially those who may have positive nodes as well!
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My Oncotype was 35, stage 2A with a positive node. Right now I'm three and half years out and healthy. My oncologists watched me like a hawk for the first two years.
I've adopted every healthy lifestyle measure that's been recommended: weight loss, no alcohol, mostly plant-based diet, daily exercise, and never miss my meds - ever. I also joined a survivorship program that was very helpful and we formed a support group after it ended that has continued. That's been hugely helpful for my peace of mind.
I knew I needed chemo from seeing slides of the node. The pathologist was actually the one who told me I needed it. I don't know why they bothered with the Oncotype. Frankly, it did nothing for me except raise my anxiety.
The pathologist gave me way more information about my situation than the Oncotype report, which I found very disappointing. When I tried to get more specific information about my scores from the company, they were very resistant and I had to go through a number of channels before they released my medical information to me. I was not impressed. While I recognize that trials have been done on the test, all it did for me was delay the start of treatment for 3 weeks.
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Hello Boston12,
So happy to hear you are doing so well. We are certainly not defined by our Onco scores! I , too, met with my wonderful pathologist who went over my slides with me as well. But, the Onco score gave my oncologist the information needed to recommend chemo. I was a high 48. There was no indication of me needing chemo prior to receiving the Onco result. But, over 2 years later, I am doing well and feeling pretty good. Pat😊
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I'd love to keep this page active. Any more high scores out there. 💐
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Just out from oncology appointment, it seems my high oncotype score and recurance risk is due to 3 positive lymph nodes and lvi. I don't know whether that is good or bad, I have approx 15% benefit from chemo that leaves me with 27% risk of recurance in 9yrs. Fuck that's high.
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Was diagnosed stage 2 August 2018. Had lumpectomy no nodes involved. Surgeon assured me there was no need for chemo or radiation. But then the Onco score came back 48. Had 4 rounds chemo with 37 radiation treatments. I am going for my 6 month checkup in 2 weeks and praying that I am still negative. Only doing anastrozole
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Hi Patk,
My diagnosis is similar to yours. I had lumpectomy (3 times due to unclear margins), chemo, rads, negative nodes, stage 1. The good news is that Chemo is giving us a high percentage of effectiveness for higher onco scores . My Onco was 48 also. Also taking anastrozole. Hair is thinning and bone density loss as a result of anastrozole. Been on it 2 years. Seeing oncologist this month. Let us know how your appointment goes. Wishing you well.
Pat:)👍
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Well prayers for all of us going through this. I have to say kind of forgot about myself because my husband was diagnosed with stage 4 colon cancer right after I finished my chemo. So he was going through surgery, chemo and I started radiation. Unfortunately he just passed away in April but I am still here. Kind of scared for my next appointments due to all the stress I have been under for the last few months but praying all will be OK. Wishing you the best as well
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So sorry about your loss, PatK. Will be praying for your health and wellbeing.
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So sorry for the loss of your beloved husband. That certainly would account for higher stress levels. Try to make time for yourself. Mediation helps. My hubby lost his mother to Covid this past January. He contracted Covid in January with double pneumonia. He was sick over 3 months. Thank God, I never contracted it. Go figure. It was difficult taking care of him, but at least I was healthy enough to do so. He has recovered since, but still dealing with " long hauler" effects. I feel so badly for those people going through their cancer treatments during this pandemic. It has to be so difficult for them.
Keep the faith, will pray that your upcoming appointments bring good news to you.
Pat🙏
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Again thank you so much and prayers for you and your husband.
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How's everybody doing today, would love to keep this thread active x
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Hi everyone,
I meet with my oncologist tomorrow for my yearly check up. Have many questions regarding getting the ctDNA test, as well as bone density result. Also wanted to go over my original gene scores that determined my high oncotype score. She's going to really love me tomorrow.😚
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I hope she is delighted to talk with an engaged forward-thinking patient! Please come back and share how things go!
On the one hand I'd like to get a ctDNA test, on the other hand....
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Upstate, a number of us 'earlies' are curious about getting the ctDNA test. We also await what your MO has to say!
Good luck tomorrow!
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You are both so sweet, I will certainly let you know what she has to say. I am willing to pay for the ctDNA test if my insurance doesn't cover it. I think you were supposed to be Stage 2 for insurance to possibly pay for it. I feel that with my Onco score bring as high as it was, I may be a reasonable candidate for the test. Hope she will at least be willing to order it for me. Pat👍🙏
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Hi all,
Sorry for not responding sooner😙. Saw my MO on Wednesday. We discussed quite a bit. She did not think that the ctDNA test would be indicated for those of us previously diagnosed with breast cancer. FDA approved it for colon cancer and some blood cancers. She also stated that if test were to be done and tumor DNA was detected, she would not know what would need to be extrapolated for potential treatment. She would not have me go through chemo again, for example. She explained that if residual disease was present, it doesn't mean that the cancer cell(s) would ever result in another tumor. She said that if I wanted to pursue being in a trial study, I should go to a facility that is doing such for breast cancers. Another interesting thing that she said was that with my high Onco score, having had such an aggressive tumor, I have gotten past the 2 year mark. She feels that if recurrence was to happen, it probably would have by now. If I get to the 5 year mark, recurrence would go to the single digits. This made me feel a bit better. She wants me to continue AI. We discussed diet and my bone density results. She spent almost an hour speaking to me, for which was quite unexpected, but much appreciated by me. Hope this information helps someone. Feel free to PM me any time.
Love to all,. Pat😘
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Thank you for that information. I was wondering about ctDNa test as well.
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Thanks Pat, it sounds like you got your mos absolute attention, it makes all the difference,I will be seeing mine on thursday, I have a lot of questions. Anne
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I have an onctotype score of 44 and will start Tamoxifen later this month. This thread is lifting my spirits and giving me hop
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Good for you, AvaG! Has the hair started growing back yet?
I'd like to know if ctDNA present in determining whether to stay on AI beyond 5 yrs. But doesn't look like a Doc will allow for that reason in early BC. Will look to see if any clinical trials available who might be doing that. If I find one, will let all know!
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nope, my hair has starting growing back but hopefully it will in the next couple of weeks
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Hi Murfy,
There was a recent study that showed the same result with being on AI for 7 years instead of the full 10 years. That is certainly good news☺️☺️. Please post if you find any trials for ctDNA testing. I would he willing to travel to participate if need be. Let's keep this thread active, love keeping in touch with everyone. Pat👍
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My Onco score was 48 and I was terrified. Started treatment Oct 2018 followed by 37 radiation treatments and daily Anastrazole. Just had my 3 year exam and everything looks good. Have met others with much higher Onco scores and many more years than me and they also are doing very well
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Since the cutoff from Oncotype is 26, my doctor said I had a "high" score at 28 after originally telling me after surgery that probably I didn't need chemo. Took me "forever" to make up my mind on chemo, but I did decide to go ahead, and will start in 2 days.
I want to be able to look back from the "future me" to the "present me" and be glad that I did everything I could to prevent recurrence and especially recurrence in the brain, lungs, bones or liver. One of the kind ladies I met on this site answered my PMs and called me to help me make up my mind, with no pressure. It was her suggestion to try to be in the future looking back, It worked for me, unstuck my mind. She was years out from her surgery/chemo/rads and said she looks back at her treatment now like it was just a "short time" in her life. To me, looking ahead, it all looks like such a long road, and gosh, no hair for a year really upsets me, even though it's "trivial" per my husband who said he will shave his head too when I go bald .... But looking backwards from 15 years out, it will be a short treatment time for me to do chemo/rads. I hope I can tolerate hormone therapy when it is time.
Also, I got a call a week ago or so from a mother I knew 15 years ago when my boys were children and playtime and overnight sleepover friends with her son . She called because her now-adult son heard from my now-28 year old son that I had breast cancer and was trying to make up my mind about chemo. She has Stage 4 breast cancer in her bones, after a double mastectomy 10 years ago (no chemo was recommended to her then) and she never got Oncotyped. She spent $50k on "alternative" treatment to protect herself. Now she has an estimate of 4 years to live and she is 10 years younger than I am. She cried for 2 months 10 months ago when she found out, but says now she is just living life as full as she can, and doesn't cry anymore. She is glad her kids are all grown up and don't need her as much. I cried for 2 days for her after that call.
Good luck to everyone struggling with decisions and fear. Thank you for being there for me and everyone else who reads these posts.
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