Long term "high oncotype test" survivors
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Fairydragonfly Thanks for sharing all the context and history. I am glad we have each other to support and listen and contextualize on this site, and this thread.
"Weakly positive ER" is also what I have--I think mine is 14% I would have thought that AI treatment wouldn't matter that much, but my MO was very clear that it has a hugely important part in my treatment plan. Basically, it's a tool, and we need all the tools we can get, I guess is his point.
I know that as I was learning more details about my DX, each additional fact was certainly more clarifying, AND more worrisome, so I truly empathize with your anxiety about all this. On the other hand, it made the path forward quite specific, and there was a reason for each TX choice. That gave me some (just a little, but some!) peace of mind. It helps me that my MO is compassionate and kind, so when he gives difficult news and information, he also throws in a good helping of Hope, which I am happy to hang onto!
I love it that my DH is not full of platitudes and knee-jerk reactions of false comfort. When I share my real fears and my real anxieties, he usually says, "Yes, of course. It's normal for you to feel that way. This is serious stuff. You have every right to be angry/scared/overwhelmed/derailed, etc." My husband has a long career as a hospice nurse and nurse manager. He knows cancer is terrifying, and he knows that my anxiety and terror are justified.
ON THE OTHER HAND, the glass is also half full. I appreciate the fact that even though my DX is serious, so is my TX plan. It's aggressive, and it has a really good shot at working. I'm going forward now, healed and mostly recovered, as the New Me, and walking that weird tightrope between Still Furious That This Happened and Extremely Grateful To Be Alive.
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HikingLady - both my surgeon and oncologist said that no matter how weak, endocrine/hormonal therapy was needed. I do agree and I want to and will use any and every tool available. I'm lucky that my oncologist is pretty caring too.
Now just waiting for my first chemo session to be scheduled. Threw myself a "Kick Cancer's A$$" party tonight. It lifted my spirits immensely.
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I'm a weak ER/ Oncotype says TNBC (scored as 65 but also says it's not validated for TNBC) and my medical team said they could not make a recommendation either way about hormonal therapy. After much discussion, we decided against it. I'm 18months out from surgery.
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BUMP
There are a couple of similar threads starting up...high oncotype survivors need to find each other....enjoy this thread!
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Hey Ladies!!! It's 1OUGIRL here. Just wanted to touch base and say "I'm still doing great!" To refresh your memories, I started this thread because I didn't know a single lady that had breast cancer and had a high onco score and I had no one to commiserate with. I had an Oncotype score of 52 in 2005. I was treated with the whole medical protocol that was available at that time such as chemo, radiation and 5 years of Tamoxifen and I just had my bi-annual MRI and everything is still looking great. I feel great too. I love to hear about other ladies that have been cancer-free for years who had a high onco score. When reading this thread i have noticed that there seems to be different things that doctors are exploring with breast cancer patients from when I was diagnosed. When I had breast cancer, my oncologist didn't know much about what this score meant and I at that time spoke to numbers of breast cancer survivors and NO ONE seemed to know anything about the Oncotype Score Test. I am so thankful there are more avenues for those diagnosed with breast cancer and getting a high score such as I did. I remember having dose dense chemo back then and even THAT was kind of new on the horizon. I like to jump on this thread every now and again to hopefully lift another ladies spirits and to remind you that we are NOT just an onco score number and we have every reason to feel hopeful and confident that we can survive this period of uncertainty and go on to have a fantastic life.
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1OUgirl, thank you for starting this thread. It gave me such hope when I found it. My score was 46 and I was devastated and felt doomed when my MO told me over two years ago. I now feel fine because upon my last visit, he told me that I was no longer defined by that score because I had the mastectomy, strongest chemo and taking tamoxifen. That score told us that those treatments were useful and that it would significantly help me reduce recurrence. I see him today for my check-up!
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keep coming back 1OUgirl...no matter how far out I get, I still need a little encouragement, every now and then...
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Thank you, IOUgirl, for starting this thread, and to all others for posting here. I was diagnosed 5 years ago today, Oncotype score 39. I have had 5 wonderful years.
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IOUgirl was an early point of inspiration for me. Thank you.
Nottoday-my oncoscore also 39. Dx’d 11/11/11. Grade 3 ER+ 1.4 cm. Seven years going on 8 years
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I’m a 39 too! Love to hear longevity stories.
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hello all, I sure hope that I do not offend anyone with this question, but is there anyone with a high Onco score that had a recurrence? I know that there are a lot of long term high onco people that are doing fine. Also, some with low onco scores that had a recurrence. I did surgery, chemo, now facing rads in September. My score was a high 48. I think recurrence will always be in the back of my mind, unfortunately.
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I am 8 years NED, my score was 34 and I did not do chemo. Having a high oncodx score doesn't mean you will get a recurrence remember it is a statistical model that shows chemo may reduce your risk of recurrence. The same is true with low scores you are never certain you won't be the one that has a recurrence.
My risk of distant recurrence at this point is less than 10%.
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hi meow13, Cancers run in my family and my score being so high, doctors felt I really would benefit from chemo. My risk of recurrence without chemo was 37% , I believe. With chemo and higher score, I was told by the pathologist to be getting close to a 25% absolute benefit. Hopefully my risk now is reduced to 12%. Chemo was very hard on me, but looking back, glad I had it. May I ask your age at diagnosis? I was 63.
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I was 53, in your case chemo may have been a good treatment especially given you were grade 3. I had mitotic scores of 1, and I had 95% er receptors. I looked at the data and was not convinced. It was the lack of pr receptors that drove my score higher. Also oncodx was comparing tamoxifen use not AI drugs. For er+ pr+ cancers tamoxifen is about equal as far as results but for er+ pr - cancers AI drugs are almost 2x as effective as tamoxifen.
I decided to not do chemo and take anastrozole and then exemestane. I am 8 years out no cancer.
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hi.kaylie here I was dx'd on annual mammo in June 2017 at age 68
.my world rocked on its axis...had lumpectomy.slightly larger than 2cm with 2/2positive nodes on setinel bx..grade 3..oncotype came back at 45 so all agreed I would get good results with chemo..4rounds cytoxan/taxtotere..really pretty tolerable .I used cold capping and kept 75-80percent of my hair..I had radiation and have been on letrozole for 18 mo ths with only mild joint pain and hair shedding.am also im the letrozole only arm of the Pallas trial so am followed closely every 3 months. ..I am in my 3rd year out from dx and doing fine.life is 95 percent back to normal ...the worry never goes away but does lessen over time..have done all I can and the future is a crap shoot. I reached 68 with no major health. problems so feel.was blessed...fingers crossed and moving on with life..you will too.lots of hugs
We so get it..Kaylie..Candace
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Meow13 & Kaylie57410,
God bless you both. Thanks for sharing your stories.
Meow13- I did not mention before that I actually had 2 tumors 4mm apart. The larger tumor was 13mm er+/pr+ her2negative, the second tumor was 8mm er+/pr negative. MO only did an onco score on the larger tumor. I wonder if onco score would have been even higher on the smaller tumor due to its being pr negative. Guess I will never know. I am post menopausal, so probably will be put on an AI , not Tamoxifen. Are you still taking exemestane and why did you switch from anastrozole? If still taking will you be on it for 10 years?
Kylie-Sounds like you are doing well. So happy that you were able to keep most of your hair during chemo. Also for getting through with C/T tolerably. First 2 C/T were an absolute nightmare for me- horrible migraines with flu like body aches and fatigue. MO cut my dosage 10% on final 2 txts, thank God, and it did help mitigate those se's. Does the study you are in require you to be on letrozole for 10 years? Wishing you continued NED. Hugs to you too, and thanks for your response. Pat😳
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No, I was on anastrozole for 1.5 years then due to side effects I was switched to exemestane. I wish I never took exemestane terrible dry eye and I was afraid I might lose vision in the eye. I did a total of 4 years. I am off all drugs for over 3 years. I stilll have some residual side effects but much much better.
My 2 tumors were about 4 cm apart and found to be totally separate occurrences with 95% confidence. I only had one tumor oncodx tested I believe it was my ILC grade 2 tumor.
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good morning -the Pallas Trial requires monitoring over 24 months of letrozole and the results as far as possible recurrence are compared with people who are in the other arm which is letrozole and Ibrance which currently is only approved for use in metastatic disease. the goal is to see if using Ibrance will have a preventative effect on early stage patients .
I have to be on letrozole for the standard time of 5 years, but am at higher risk for recurrence due to 2 nodes and a grade 3 ,so will likely be on the drug for up to 10 years--one step at a time--I am well now-almost 2.5 years out so am grateful--have a nice day-Kaylie-(Candace)
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Everyone,
I wanted to share this article about the success of chemo for high oncotype breast cancers....some good news for some of us!
Here is the link to the JAMA article where you can look at supplemental charts with detailed results based on the type of chemo you had and other stats related to the diagnoses of the women in the study:
https://jamanetwork.com/journals/jamaoncology/fullarticle/2752332
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Only 6% with high oncodx scores received no chemo. Exactly why collecting data from patients outside small studies might shed more light on results.
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Hello Scrafgal,
Thanks for this, a very informative article. I guess that taking chemo was definitely worth it for me. May I ask how you're doing on anastrozole? I have been taking it since Sept. 5th and I am doing ok with it so far. My recent bloodwork shows a spike in my cholesterol. I am hoping it is not due to the AI.
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UpstatNYer
You're welcome. That's how I felt after reading these results. Lately I've been thinking about my checkup next month. This article gives me some comfort. I particularly liked the detail related to different chemo regimens. It was rough but maybe it was worth the agony!
I am doing pretty well on the AI. At first, I was more constipated and my sleep was disturbed. However, that has subsided. I had some arthritis before BC and I think that I have some increased joint pain. Yet, it is hard to disentangle effects from aging, menopause and the AI, which are interrelated:) Overall, I find it tolerable.
Meow13...I agree that a targeted study with a purposive sample would be best approach to study high oncotype/ no chemo populations.
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And AIs are known to increase cholesterol..That is why I took a baseline before I started the AI. My cholesterol is normal but not much room to spike. I am concerned about it but my pcp and mo say we will cross that bridge when if or when we get there! I will avoid a statin...my weight is already normal and I exercise regularly but am I am willing to lose more and make dietary changes before taking a statin if my cholesterol goes up. In the end, I will keep the AI and add a statin if necessary...
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My cholesterol didn't seem to be effected when I was on anastrozole and exemestane. I am with you in avoiding a statin by diet and exercise if possible. My Mom has always had high cholesterol regardless of what she tried so she has been on cholesterol reducing meds quite along time.
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My sister just got on a statin... she is overweight and hoping to get off of it one day by improving diet and and exercise. I am hoping for no cholesterol effect due to the AI. My heart has been checked a few times since chemo and is in excellent shape. I feel trapped. I want to stay on the AI because it is more effective than Tamoxifen...but I tolerated tamoxifen well and it actually can lower your cholesterol...it's such a trap!
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Scrafgal,
Thanks so much for posting this. Always good to see positive news. Hopefully, these distant recurrence risks will come down further in the future with new and better adjuvant therapies. The risk of distant recurrence among those with a score of 30+ seems very consistent with what my Oncotype report predicted would be my 10-year risk, given a score of 39, but it's good to see the estimate born out in this larger population.
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Agreed, nottoday!
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scrafgal, I asked to have cholesterol levels drawn every 6 months rather than once a year just to keep a better eye on it. Totally unchanged from prior to BC , so far anyway.
Do some research on niacin for reducing cholesterol levels then speak with your Dr. It can lower the bad cholesterol and triglycerides and help increase the good cholesterol when paired with nutrition and exercise.
You mentioned your sister..family history of high cholesterol is a risk factor that can be overlooked so if others in your family have increased levels definitely keep a close eye on things! Great news that your heart function is excellent!!!
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DebAL
Thank you! I certainly will check into this and share it with my sister. Heart disease runs in my family so I have worked hard my whole life to be heart healthy....never saw breast cancer coming!
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keep it up scrafgal!
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