Long term "high oncotype test" survivors
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good morning to you- I am almost 4 and a half years out from my dx and doing fine--2cm lump with 2/2 nodes grade 3- onc-45 so high risk of recurrence.I had lumpectomy chemo-4 TC and full course rads-have been on letrozole for 4 years this January and have minor side effects--stiff joints in am and insomnia-very doable--I take naps-lol. At last doc visit she let me know she would recommend 7 full years of letrozole as studies show- 10 years doesnt offer much additonal in the way of prevention, She also started me on every 6 months infusions of Zometa-helps ward off osteopenia,which I have , progressing to osteporosis, and has a positive effect in bone metz prevention.
I did cold capping with Penguin and saved 75-80 percent of my hair- was so helpful to my emotional health to look normal thru it all
life is 98 percent back to normal and looking forward- rarely backwards anymore--sending hugs your way from Vermont--
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PatK, we are Onco sisters, my score was also 48, diagnosed just a few months after you. Also did lx, chemo and rads and on anastrozole for past 2 years. So happy to hear that you are doing so well. My MO congratulated me on getting past the 2 year mark. Congrats to you too on reaching the 3 year mark. Yes, initial diagnosis was devestating to me too. Did alot of research and was lucky to have an excellent team of doctors. Pat👍
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Oldladyblue,
So sorry to hear about your friend in stage 4 bc. Will keep her in my prayers. I think you have a great attitude and made the best informed decision regarding having chemo. Have to hit this thing with everything you can. Hoping chemo goes well for you. I had a rough time, but very happy that I got through it. If you want to hear some good tips regarding handling side effects, etc., Please feel free to PM me. The ladies on thee boards are so supportive and helpful. That is how I got through my journey. Best wishes , take care. Pat🙏👍
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Hi UpstateNYer, thanks for your reply. I appreciate your prayers for my friend Lori, she has a great attitude, it was better than mine. She says she will just keep doing chemo/treatments until they don't work for her anymore. She went out and played tennis the other day and has inspired me to start exercising again. I haven't run in years, but used to. I think any woman with Stage 4 is very brave for not crumpling down totally, but when Lori reached out to share with me, it made me willing to fight through all treatments recommended. I will PM you later today, thanks for offering to give me tips.
Kalie57410, I needed hugs, thanks! My husband has backed off touching me much since my diagnosis, few hugs and kisses. So thanks for yours. It is great to know you are 98% back to normal and rarely look backwards anymore. If I hadn't been so disbelieving for so long that my doctor felt 28 was a high enough score to do chemo, I might have decided to do cold capping, but there's not time to set it up now. I hope to be able to tolerate hormone therapy for years too. I'm glad you are.
It makes me very very hopeful to see all the earlier posts on this thread too. I hope your lives continue to get better.
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Hi, Can I ask if any of my high oncotype friends are on Zometa (zoledronic acid???) and or baby asprin, as an added boost to our protection against mets. I just walked the pink 10km today, I really don't appreciate the assignment of a colour such as pink to an ugly deforming catastrophic shit show as BC but I walked the walk cos s I can and hopefully my money and effort will help someone. Anyway, happy Autumn
X Anne
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I'm taking the bisphosphonate Fosamax for AI-induced osteopenia. Thinking that taking that, calcium, and vit D will help prophylactically strengthen bones. And, exercise...thanks for walking for BC research!
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Thanks Murfy, Laura, hope all is well with you, have you made it home yet? I hope that hip pain has moved on. I'm getting a list of requests together for my BS visit, my oncologist doesn't give me much time to talk, I generally see a young registrar. Not good. So I want to make sure I'm on everything I should be on. Are you on fosamax long? Otherwise all is good, walking, swimming, living. Anne.
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Hi, I've just read an interesting article in relation to approval of verzenio for use in combination with anastrozole in patients with high risk of recurance in hr+ her2 neg breast cancers. This has shown to reduce risk of recurance by a further 25%. It is most beneficial in the first 2yrs. I feel that I am a good candidate for this treatment and yet it has not been mentioned to me. Have any of you high oncotype ladies had that conversation.?
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Hi Emily,
Seems like you're in the perfect position to take advantage of this new development. Good for you. I am too far out from it, but would certainly ask about if I were more recently diagnosed. Good luck!
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Thanks nottoday, I will have to make an appt to see my mo very soon. Thanks for your support, your doing great 6yrs out. 💐
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Emily, I think high-risk individuals are those with LN involvement and you fit that description. Bring a copy of the paper to your next appt. Tell your Doc you want to start taking Verzenio and see what s(he) says! They may just be unaware!
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Happy Christmas and a Happy New year to all my high oncotype friends. Best of health and Happiness for 2022.xAnne
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Same to you, Emily and everyone💕
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hi there I’m glad you started this thread. My onco was 30. I had a partial mastectomy but had to refuse chemo and Verzenio because they both decked me. I also refused radiation for fear of permanent nerve damage. My surgery was just August 4 and now I’m looking at having my ovaries and fallopian tubes removed. How are you doing and where are you in the process
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good morning to you--my onco score was 45 4.5 years ago at dx- stage 2 --- 2cm tumor- 2/ 2nodes positive -estrogen/progest positive and Her neg--had lumpectomy, 4 rounds TC ,radiation and have been on aromatase inhibitor for 4 years next month and other than stiff joints in the morinings-have done well and am one who will need to stay on it beyond 5 years due to high risk of recurrence. I am followed at an academic cancer center in the hospital where I work as an RN
not sure what you referring to as to nerve damage from radiation--it can be quite effective in eliminating any remaining microscopic cells left behind in your breast area--maybe weigh your fear of side effects against your fear of a recurrence. Same with chemo as kills any remaining circulating cells that can cause a recurrence--going thru the variouis treatments isnt fun but is our best chance of coming out the other side lowering recurrence risk as best possible-nothing is 100 percent and the recurrence risk will always be a possibility
I think my advice would be to work with a team you hopefully trust and have confidence in and put your faith in their expertise and guidance- they are trying to save you per the latest protocols. also what helped me was to do lots of research thru legitimate sources--like this site and other sites connected with reputable cancer centers--beware of many sites that put out false- possibly harmful info--
I also cold capped with Penguin caps thru chemo and saved 75-80 perpcent of my hair--yea!
I did well with chemo -suprisingly so with the premeds and post meds-never had any nausea-mostly fatigue and some diarrhea-
with 33 radiations treatments I had mild skin inflmmation but resolved quickly after treatment stopped
stay with us on this site- there is so much helpful support as you continue on this journey--best to you in the coming year--You can do this--you can---hugs from Vermont,Kaylie
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Although my score of 28 was "barely high" per my surgeon, and my age is 65, I did the recommended TC chemo, will start radiation mid Jan for 16 treatments, and will be on hormone suppression pills for 5 years . I have a friend who had a double mastectomy 10 years ago call me to urge me to do all possible treatments I was recommended for as she had breast cancer spread to her bones 1.5 years ago and is thus stage 4 terminal with 3.5 years left per her doctors. She didn't know her oncotype score from 10 years ago, but she scared me enough to do all the treatments no matter how they affected me. My side effects from TC chemo were bearable, I hope the rads and AIs go well too.
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Bump
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My score was 34, I am glad I didn't do the chemo kind of wish I didn't do 4 years of AI treatment. I think I aged a great deal these past 10 years but you know I am still NED. Treated myself to a neck/facelift and I am really happy the way it turned out.
Still happy with my DIEP, still looks great. Almost like the mastectomy never happened.
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Hi Meow
I’m glad you are well. I’m cancer free also it will be 10 years this October.
Like you I had a high Onco score too. Only took Tamoxifen. But then we see articles like this and still wonder.
“Risk of Early-Stage Breast Cancer Recurring 10 or More Years After Diagnosis Linked to Estrogen Receptor Status, Other Factors”
Take Care, oh I want a neck lift too👍🏼👍🏼
Loral0 -
Thanks for posting Meow and Loral. I wasn't brave enough to skip the chemo, though I wanted to. It sure has aged me. I am nowhere near how active and well-feeling I was before chemo, rads and now the horrible little tiny daily hormone pills. I sure long for the days of feeling "well".
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Dear Anne,
Thank you for all you have done to help us navigate this terrible disease. You will be in my prayers for a peaceful transition. May your last earthly days be filled with love and comfort. Well done, good and faithful servant.
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6 years cancer-free...
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Thanks to those of you who have posted your high oncotype numbers. I really need to see them as my score was 39! :-(
I'm doing chemo now followed by hormone therapy.
Also, this is a bump so more long term survivors of high oncotype numbers will post!
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oncotype score 36, 4 rounds of chemo, and 5 years of tamoxifen, one + years NED and then diagnosed with dcis in May 2022, opposite breast 7 years later. This time just surgery and rads, nothing else. I know the odds are not in my favour but I also don’t gamble. What will be will be and I will continue to be me. Xox
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Hello High Oncotype sisters! I was diagnosed July 2014 with a score of 39. So far, so good. We can't be sure what's ahead. I try to live each day with gratitude. Sending love to all of you.
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Hi ladies. This is 1OUGirl (the original starter of this thread) and I am now 18 years out from diagnosis and just finished my yearly rounds of testing which showed I am still clear even though my Onco test score was a whopping 52!!! I am living happily and am thankful to my Lord for such huge blessings. I hope I can be an encouragement to those who are just beginning their journey and those who are wondering, as I did; if there really are long term high Onco score survivors out there……
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love hearing from long term survivors, my score was 34. I didn't do recommended chemo, on year 12 NED.
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I also love hearing from long-term survivors! My oncotype was a whopping 49 in 2016. I did 4 rounds of surgery, rads, 4 rounds of TC, and 5 years of AIs/tamoxifen. I’m still here and doing A-OK
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in 2019, at almost 71, my oncotype score was 42, had surgery, and radiation only, declined recommended chemo
I feel that my active life , positive attitude, exercise, new diet, and determination have been the contributing factors. I am sure that there are a lot of us everywhere that we never hear from or about in clinical studies
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Bumping this thread hoping some more people will post. My oncotype was 37... I'm 4 years NED. Just been feeling down lately because of my high oncotype score at a young age. I was also stage 2a grade 3 with a 5cm tumor. So I just feel like my recurrence chances are high....
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