Long term "high oncotype test" survivors
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Quinncat. Thanks for posting that. It makes me feel alot better!!
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IOUgirl,
Thanks so much for creating this thread and for continuing to post on it! I've learned a lot from everyone here and it has helped me navigate my own anxieties about my RS39!
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tkemp, hugs to you!!! Let me know how you are doing.😊
I am hanging in after my hysterectomy. But that's all it feels like I am doing. Praying for brighter days ahead.
Hoping to hear more good stories here.
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cajunqueen15. Hope you are doing well? Was there any reason you discontinued with the evirolimus? I was going to talk to my MO about it next week.
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thinking - I have hit my first real depression during this period. The instant menopause has proved really tough. I feel very unstable, angry, and sad.
Re: Everolimus, I had once of those rare but serious reactions nobody prepares you for. I started having symptoms mimicking a heart attack, called 911 and ended up in the ER. I was told there could be mouth sores, peeling hands and feet and reduced immunity. I was really frightened. I have never called 911 before in my life!
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Notoday - we are both 39's! You are the only other 39 I have ever met.
See my previous post on this thread for my stats. I suspect both of us got that score because of PR-.0 -
cajunqueen15...hope you are doing better!! I go to my mo today. Have not dropped a pound and I am not eating very much so I know it's the Fermara. Depressed over the weight gain. I know cholesterol is probably still high due to the Fermara.
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Thinking, I'm sorry about the weight gain... That must be very frustrating. Can you try another AI? I take Arimidex... Other than initial depression now being relieved by Effexor, no SEs...yet.
I'm actually feeling much better. I started the Everolimus (which is specifically for high risk of recurrence patients) trial with xanax this time and no ill effects.
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Cajun.. Glad you are feeling better. I mentioned not being able to lose any weight to my mo and he suggested if I wanted he would change me to anestrole?? Not sure how to spell it. Maybe the generic for arimidex? I told him I would think about it. I hate to change and end up with worse side effects. Right now I don't have any depression. Only minor joint pain when I get up and weight gain and high cholesterol. I also asked him about Prolia as recent studies have shown that to help with recurrence he said I could switch to that as well from actonel that I take
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yes, anastrozole =Arimidex.
I'm not taking anything for nine density yet - I'm afraid of the jaw necrosis thing. I need to go to the dentist and have a mercury filling replaced first, ugh.
Is the actonal causing the high cholesterol too? Everolimus can do that too...I get monitored regularly now.
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yes the Letrozole has caused weight gain and high cholesterol. Also caused osteoporosis in my spine. So I am hesitant sinceI have no other side effects other than minor joint pain when I get up after sitting about switching the Letrozole. Heard some horror stories about arimidex too! Not sure if the actonel causes high cholesterol with.
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It's all just fun and games, isn't it? If it's not one thing, it's another. Sheeeeeesh! Sending you hugs today!.
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I guess it's all better than the alternative ! Have a great day! First day the sun is out in a week here in Jersey
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I recently got my oncotype dx of 37! Recurrence rate with tamoxifen 27%, mo said with chemotherapy will reduce 3-5%! That's it? Just 3-5%!? she said even getting one percentage point is important ..but I thought chemo would at least drop it by half!? Why do chemo it's going to come back anyways...really need some advise from you ladies..how accurate is this oncotype dx test?thank you!
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mine was 34, had I very recent scare but still no cancer. I did not do chemo.
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I thought that chemo knocked recurrence off by a third, so in your case 9% down to 18%. Maybe there is some other factor coming in to play for you?
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Hi Scarysadday:
Elsewhere you mentioned you are "stage1, 1.1cm IDC, ER/PR +, Her 2-, negative neg nodes, grade 3. 39 year old. Just found out today from my MO I have a high oncotype score of 37! With tamoxifen, recurrence rate is 27%!"
As best practice, be sure to obtain a copy of your Oncotype report so you can personally confirm your Recurrence Score and the average 10-year distant recurrence risk with 5 years of tamoxifen. (These are clearly and prominently printed on page 1 just above (RS) and to the left (10-yr risk) of the first graph, if the sample report is current.)
Please do not hesitate to call your MO to ask about the size of the potential benefit of chemotherapy in your particular case. I am wondering if there may have been some miscommunication, but the only way to be sure is to ask.
A 2016 ASCO guideline states: "An overview by the Early Breast Cancer Trialists Collaborative Group suggested that the reduction of risk of recurrence (ROR) with adjuvant chemotherapy is at least 30%," citing to the following study:
http://www.thelancet.com/pdfs/journals/lancet/PIIS0140-6736(11)61625-5.pdf
Generally, the risk of very serious adverse events from chemotherapy is considered to be around 2 to 3%, so some practitioners like to see an absolute chemotherapy benefit of around 3% or a bit more. Because of this, I am wondering if your MO told you that in general he likes to see a minimum 3-5% benefit before considering/recommending chemotherapy based on risk/benefit.
Maybe you missed it when he provided you with a different personal estimate of the potential benefit of adding chemotherapy to endocrine therapy in your case (which seems like it may be more like 8 to 9% as suggested by Doxie)? We are laypersons, so you need to ask your MO.
To ensure you have correct and accurate expert advice on this very important question, please call, contact via portal, or meet with your MO to ask, for example:
(a) By how much does the addition of chemotherapy to endocrine therapy reduce the 10-yr risk of distant recurrence provided by Oncotype in general (e.g., an ROR of 30%? other?)?
(b) Based on that and my Oncotype test results, what is the estimated size of the risk reduction in my case?
Both NCCN guidelines and ASCO guidelines include the use of the Oncotype test for invasive disease in hormone receptor-positve, HER2 negative disease that is node-negative ("N0"). This indicates that they consider the Recurrence Score (and associated recurrence risk information provided by the test) to be sufficiently validated to help inform decisions about whether or not to add chemotherapy to endocrine therapy in this setting.
Best,
BarredOwl
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- thanks for the info barred owl. I actually saw my MO today and had a long list of questions, including her previous 'conclusion ' of my oncotype and recurrence rate/reduction. She did provide me with the report ( from my previous visit), and pg 1 clearly states my score, a graph to show recurrence rate with 5 yrs of tamoxifen only, on the graph it showed 27%(b-14 sample size) HOWEVER, I read through the report once I got home and on pg 2 of the report based on b-20sample size, shows 2 plotted lines one with tamoxifen, the other one with tamoxifen +CMF( which I know it's an older regiment)' and the recurrence rates are very different...from 19% reduced to 10% with tax +CMF...and should really be lower, as treatment s should be more effective nowadays . So I ask my MO today about the second page. Her reaction immediately showed me that it was a 'missed' on her end...she gave me some sort of explanation on why she said 3-5% from our last visit...very high level..but what's important is she confirmed the b20 sample is very valid...
Do you guys also get the b14 and b20 sample size report? And which one does your mo referto?0 -
My mo said chemo could take my risk of 23% to 10-15%. I just am not sold on the oncodx test results.
I can't believe how different doctors seem to approach the treatment plan. Mine thought at 53 in excellent health I should take the most aggressive chemo regiment but afterwards do AI treatment for only 5 years. Mo didn't think I should have bmx just because I had ilc and idc.
Aside from my horrible scare last week. I've been good and cancer free with no chemo. My scare was in my DIEP not my good side, go figure it was scared tissue. I hate this poking and proding and scaring me half out of my mind.
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Scarysadday, my second opinion expert at UCSF used the B-14 page to give me my recurrence risk of 14-20% This range spans the confidence interval for my score of 26 on the B-14 graph. He said chemo would reduce the risk by half, which makes my risk 7-10% because I'm having the chemo. Since the B-20 page is the only place that shows risk reduction with chemo, I assume that's where the estimate comes from. When I use the B-20 page to estimate my risk with chemo, it looks like 5-10%. That graph is hard to use. I wish it had a better grid. But at least it's in the right ballpark.
Having the two different pages with two different studies is certainly confusing
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Could someone tell me what is meant by the b14 and b20 sample size report? Thank you.
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Hi Warrior_Woman:
In the node-negative ("N0") oncotype report, the first section of the report provides your Recurrence Score and the average 10-yr distant recurrence risk with 5-years of tamoxifen that is associated with that particular Recurrence Score (to the left of the graph). This information comes from the results of Paik 2004, which was an Oncotype validation study that used archived (stored) tissues for Oncotype testing that were from patients who participated in the NSABP B-14 trial ("B14"), and for whom long-term distant recurrence data was available. The first graph in the node-negative report is based on Figure 4 from this study, which illustrates the relationship between Recurrence Score and 10-year distant recurrence with 5-years of tamoxifen alone:
Paik (2004): http://www.nejm.org/doi/pdf/10.1056/NEJMoa041588
The second section of the node-negative report concerns the potential benefit of adding chemotherapy, and is based on the results of Paik 2006, another Oncotype validation study. This study used archived tissues and distant recurrence data from the NSABP B-20 ("B20") trial, in which patients received tamoxifen alone or chemotherapy plus tamoxifen. See e.g., Figures 4 and 3B.
Paik (2006): http://jco.ascopubs.org/content/24/23/3726.full.pdf
BarredOwl
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Ah, got it. Thanks BarredOwl.
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Hi all, I'm posting this link to a research paper by two Canadian doctors who found that a protocol of over the counter supplements could have the same effect as bisphosphonates without the side effects. I came across this article doing research after I experienced severe pain from a single dose of generic Boniva, including throbbing teeth. My dentist said I was at risk for losing teeth on bisphosphonates because of a history of dental trauma (lost some teeth in a high school car accident). I started on the OTC protocol in the Summer of 2013 and had a scan done in March this year which showed a reversal of Osteoporosis in my spine and improved density in the hip, although it's still classified as Osteopenia. I've had no side effects from the supplements, which include Strontium Citrate and vitamin K (get both through Amazon) and then DHA (found in fish oil), D3. Here's the link, I think it's worth a read for those who are reluctant to do bisphosphonates: http://www.hindawi.com/journals/jeph/2012/354151/ Best to all.
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omg thank you so much for posting your update!!! I have an oncotype score of 50 and just finished chemo and radiation. I've been so scared of recurrence and your story gives me so much hope
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Wendyohms - were you Her2+ at all with that score?? I notice, sometimes, before it is known one has a Her2+ tumor, it get's oncotyped and that will always score very high. My score was 39 and my MO at OHSU said he'd only seen one score higher, at 42. (I've seen a few higher here at BCO, that are ER+ but Her2-.) Not saying 50 is not possible with an ER+ Her2- tumor, but less likely, so just checking, for your sake. The cohort does not include Her2+ as not included in the cohort that determines recurrence score, nor does it consider the affects one gets from Herceptin treatment.
Never the less, I'm nearing 5 years out with my 39 score, come January, 2017.
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Wendyohms might be DCIS which has a different oncodx scoring. QuinnCat are you still NED? I am afraid I might have a recuurrence in my spine, I didn't do chemo with my score of 34. I don't know yet, need a scan to find out.
Really scared this weekend, the bulging-disk just happened sudden last saturday. The pain has me through the ceiling. Just talked to my gp she said unlikely it is cancer. Didnt show on xray just bulging disk. If i stay perfectly still I don't have the pain. Sorry for rambling my fear has hit the ceiling.
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Meow - totally understand your fear. I have had two scary events in last 5 years, one requiring a biopsy, the other just an ultrasound; those days between symptoms and results are tortuous. From my understanding bulging discs can be painful. The worst pain in my life was an irritated sciatic nerve in my early 20's. Even morphine didn't quell it. Think positive!
As far as I know I am NED, but I would never ask for an MRI or PetScan to confirm it. I'm going thru an experience with a friend who went from ok one day, to having trouble speaking / confusion. He has a grade IV Glioblastoma brain tumor (cancer). The tumor was nearly 4 x 4 x 4 cm and the doctors at UCSF said it probably only took 2 months to grow to that size. He may have months to live or maybe longer (you know). Made me look at the growth rates of cancer. I was specifically interesting in how long it would take to double, then double, again in size. Breast cancer was considered a slow grower (though both of us would have fast growers within the category of slow growers). What hit home with me is that by the time our current imaging techniques find the tumor (what we often call "early detection") it is not really early at all and the cancer has had a long time to spread. If the original tumor took 5 years to get to detection, than any mets would take another 5 years to be detected - and why they say BC is never really cured, especially the lower graded ones 10 years plus later. They also stressed that their results determined the rates of growth were constant over time between primary and secondaries, and poo poo'd the concept of dormancy of tumor cells. How often have I hard that BC cells can "hide out."
Having to stay perfectly still sounds like a disc pressing on a nerve. That's how my sciatic was - if I didn't move or sneeze, ok. I think bone cancer is constant pain - at least that is what I have remember reading. Hope that helps?
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@ quinncat hi ....my report says - INVASIVE POORLY DIFFERENTIATED ER POSITIVE PR NEGATIVE AND HER2. Not sure if that answers your question. The study done by the company behind the oncotype test states that the 10 year survival rate goes up by 28% with tamoxifen and chemo. Without chemo my recurrence score is 33%. With chemo it is supposed to be 17%. Hope this makes sense
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Well, I'm still NED despite my recent scares. When can I finally celebrate, 5 year NED in October.
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