Long term "high oncotype test" survivors
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Squidess: Actually, being ER+/PR- is one of the indicators that my cancer is Luminal B, which has a worse outcome than Luminal A subtype of IDC:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC343009...
So no, sorry - not such a great club to be in.
elimar, even the Oncotype DX website states that the test, "determines how specific genes are expressed (that
is, their level of activity) within a tumor sample. The measurement of
these genes is calculated to yield an individualized result called a
breast cancer Recurrence Score®. The Recurrence Score result correlates with the likelihood that a patient's breast cancer will return (distant recurrence) and also indicates whether he or she is likely to benefit from chemotherapy for breast cancer."So yes, a higher score does indeed mean a higher chance of recurrence. And the same website (and my report) indicate the RS is dependent upon the assumption that the person "will be treated with hormone therapy."
http://www.mybreastcancertreatment.org/en-US/About...
I'm looking for studies that explain how the RS is recalculated if one chooses chemo, but does not do hormonal therapy. My MO has said it pretty much halves the rate - so where I have a 28% chance of recurrence with only hormonal treatment, my chance drops to 18% with chemo and Tamoxifen. Without Tamoxifen but chemo, my MO says my recurrence rate is approximately 23%.
My MO and I always get a kick out of using CancerMath, which gives me a 2% chance of recurrence within 5 years, comparing it with the data received back from Oncotype.
In the end, though - no one knows what's going to happen. My high score and Luminal B status frighten me, but I can't change it. It is what it is.
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MsPharoah <=== cool name!
There's two studies I want to show you, but I can only get to one of them right now. I'm off on a cruise in a few hours and I left the second one at work. But here's the first one:
http://www.karger.com/Article/FullText/353099
If you can't see the text of that, google it and find it from another source online. Take a look at the factors predicting recurrence less than 10 years and greater than 10 years. If you have some knowledge of looking at studies, that will help it to make sense. Remember that you want a p-value less than 0.05. Look at the factors that are predictive of recurrence in table 4 and note progesterone negative at greater than 10 years. Also, figure 2 is pretty cool, but don't freak out over graph f). Notice the p-value.
I'll try to remember when I get back from cruising to post the other link, but feel free to remind me in a couple of weeks. That study stated specifically that the survival curves for pr+ and pr- cross after somewhere around 6-8 years and that this needs further analysis.
Always room for hope!
Squidess
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Nancy, very good article on luminal B ty. During my dx in 2012, they did not routinely offer Oncotyping, so question: did your path report also have a Nottingham score? Were your mitosis rate described?
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Squidness - as you can see, I've read various studies, but I can't link back to them. I tried to stay organized, saving journal articles, but it sort of fell apart over time. I have read that hormonal treatment is less likely to help ER+PR- BC than ER+PR+ BC, but I think something like 20% still got a benefit. Likewise, for luminal B (I think we can say ER+PR- high oncotype score is luminal
chemo only helps X% of the time (and it wasn't over 50%, but I can't remember the exact figure). Ofcourse, that would be a hard item to measure objectively. That low % for chemo was still the higher than for luminal A's, but that low % often makes me question chemo's usage at all. As I stated, how can they measure it's efficacy anyway? Well, maybe retrospective studies with large cohorts.My MO-Gyn was emphatic that the hormonals were hugely more important than chemo, though I caveat, she was there to do my SBSO, not treating me for BC, so she didn't have my personal stats. She had an effect on me, though, and I struggled through 3 months of exemestane hell....it did get better, or I forgot what good feels like?
btw, I am 5% (IHC) and barely PR+ on the Oncotyping....I've often wondered if that makes me PR-?
And thanks for recalling the Japanese study. I need to look at that one again.
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Kam, thanks for jumping in - I often think of you when these types of threads become active. And Jojo, my pathology report is useless (and it frustrates me to no end). I do not have a Nottingham score, just a line that says, literally, "Grade: 2". My lab did not, at the time, perform Ki67 testing, but apparently they do now (so I plan to ask for it when I visit in June). And pathology can be a subjective science. So with a Stage 1a, Grade 2 cancer, my MO suggested minimal chemo only because my tumor size was 1.3 cm ("had it been just a smidge smaller, we would have said you didn't need it"). The resulting Oncotype test changed everything and really caught my MO off guard (I've said several times that she told me it was the highest score she had ever seen, which is sad for me but great for so many other of her patients). They were surprised I wasn't Grade 3 (but all things being subjective, maybe I am?!) The testing also changed my receptor statuses from ER+/PR+ to PR- and barely ER+ (and I mean 0.1 difference between + and -) so my MO now says my cancer "acts" like TN (and hence the Luminal B subtyping, too). So on that point Squidess is likely right - Tamoxifen probably wouldn't have much effect on me, but not taking it does increase my change of recurrence (but doesn't change my Recurrence Score).
And Squidess - enjoy your cruise! Can't wait to hear your stories when you return.
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Hi Kam and NancyHB,
I think women with high oncotype scores and/or luminal B cancer who have been aggressive with their cancer treatment are really in not such bad shape as their ominous sounding oncologists may drone on about. As a group, the 10 yr. survival rate jumps from 60% (without chemo) to 88% (with chemo). See the original paper from Paik on Onco DX from about 2005 about this. Hormonal treatments and radiation may add to that. So may the newer chemo regimens (which you all had) and aromatase inhibitors and radiation. There is TONS of HOPE in this!!!!
The thing about luminal B is that there is not a current standard for what constitutes luminal B. Sometimes it's defined as er+ and her2+ and sometimes it is defined as er+/pr- with high Ki67 (with a cut-off varying from 7% to 50% depending on the study). So you can't take what some studies indicate is a worse prognosis for luminal B without digging in to the study and finding out if you're really in the group it is talking about. This newer categorization of women is just another way to bin us into groups to make the statistics easier in studies (discrete vs continuous variables). It might be slightly better, but it's clearly not sensitive enough to really tell us completely who is at high risk for recurrence and when. For example, even within the triple negative group they are discovering that there are likely about 6 further categories that define who is at high risk and low risk in those groups. This luminal A/B/Her+/TN/etc categories is not the final answer - just another step along the path to personalized breast cancer treatment.
Just keep your stress level down and give your body the best chance it has at fighting back the cancer.
Kam, I've seen several studies where the PR is categorized as negative with a low value. Around 10% is a frequent cut-off for that. Other studies indicate that PR- doesn't matter so much if the ER is high. Definitely not clear. My suggestion is to consider yourself PR+ for the first 8 years and then switch over to PR- after that when the survival curves appear to cross! ;-)
As to the cruise, it was fabulous! We sneaked on board a cooler full of wine (oops, I mean medicinal compound) and had a great time.
~S
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Hi, I had 2 tumors one invasive ductal & one invasive lobular each tumor appeared totally independent about 4 cm apart each 1 cm. I was diagnosed Stage 1, ER+ PR- HER2- node negative 0/2. Nottingham score 6 & 5, but poorly differentiated. My oncoDx was 34. I chose mastectomy in Nov 2011, Diep reconstruction in April 2012 (Looks great). No radiation I just could not bring myself to do the chemotherapy. I took Anastrozole(Yuck) for 1.5 years and exemestane for 9 months now. Just had an MRI everything good my last mammo was good. Blood test always comes back good. I hate the weight I've gained finally it is stable with daily exercise.
Just did bone density it is normal for a 56 year old. Doctor says I should be done with exemestane in 2.5 years yeah if everything continues going well.
I still feel that the chemo was not the way to treat my cancer, I hope I was right I guess I'll never know.
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I don't know or see on my report a luminal A or B. My onco was very suprised at the oncoDx score of 34.
I didn't do chemo. I will be at the 3 year mark in Oct. 2014. So far so good. I hated anastrozole the exemestane is a little better I guess. I can't wait to ditch the pills.
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Meow13 - Luminal B is a subtype of Luminal. Usually ER+ PR- (or very low PR) and a high Ki67 (the cutoff is over 13% plus or minus). Usually they say Luminal A BC Stage 1 the best type of BC to have, but have broken it down to Luminal A and Luminal B...then there are several more higher risk categories. A is better to have than B. For all we know, it could be one has a recurrence sooner than the other, if it is going to recurr. I'd like to think that, I guess.
Luminal subtype is not on any report that I know of, but is an interpretation by the MO. My MO did not offer this info to me - I just asked her. Also, Ki67 is not done by all labs. Mine was done on the biopsy. It is, though, one of the factors in the Oncotype test, though results are not explicitly stated for Ki67. Does that help?
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Ahhhhh! Just have to share my oncotype story. I had a score of 25 back in September, 2011. 16% chance of recurrence with chemotherapy and hormonal therapy! Fast forward to April 2014.....diagnosed stage IV! Like my oncologist said, someone has to be the 16%....UGH! Never in a gazillion years did I think I would recur this soon. I always figured somewhere down the road....maybe 10-15 years from now....no such luck!
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I'm so sorry wildrumara. I live in fear most days about this. I wasn't aware they even did oncotype scoring when there were nodes involved (well, they do now, but not in 2011). Is there a cut off in the node number? Why did you not get Adriamycin, do you know? How are you feeling?
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Hee hee.....Bowe Bergdahl's father is a Republican. In June 2010 he gave a speech at an Idaho Republican fundraiser. In his speech at the fundraiser he claimed to be the lone Santa Barbara surfer who voted for a Republican - Ronald Reagan. The irony....POTUS supporting him while his own party calls him a Taliban sympathizer and his son a deserter.
Like I said, they're lousy at picking heros and likewise lousy at picking their villains. They need to put their thinking caps on and stop their knee jerk algorithm of "how can we make this hurt Obama?" Loving the irony.
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Squidess, thanks for the link and the research. I am late looking at the threads and missed it earlier. I definitely see where being PR- is an advantage after 10 years. LOL. From the research I have done, it seems like the only studies that found hormone therapy to be less effective for ER+/PR- was with Tamoxifen. I don't know of any studies that are around AI's. Do you know of any studies that question the effectiveness of AI's for ER+/PR- BC?
Also, I am very highly ER+. My MO told me that my high ER+ compensates for the low PR but I think she was just trying to make me feel better. Has anyone else been patronized by their MO?
MsP
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Thank you Kam.....Long story short, at diagnosis saw the breast surgeon, who sent me immediately to an oncologist. I had two tumors in my right breast, one was about 2 cm and the other was barely 1 cm. The oncologist decided to do an oncotype on the biopsy sample, because together we decided that if I needed chemotherapy, neoadjuvant chemotherapy was the way to go, to possibly save the breast and have a lumpectomy. So, she ordered the oncotype and that came back at 25. Because I was only 42 and premenopausal, we decided that I needed to have chemotherapy. In the meantime, I had an ultrasound, an MRI and even a PET scan.....nothing was ever seen in my nodes on any type of imaging, nor were any of them enlarged on palpation, so I went through six cycles of T/C. My tumors reduced 50%, which is about the norm for ER/PR positive, Her2 negative BC. I decided not to have the lumpectomy and do a BMX. Ended up having two sentinel nodes biopsied at the time of surgery and SURPRISE, they were positive.....continued on with ALND for a total of 17 nodes removed with only those two sentinels being positive. There was no dead tissue in any of the other nodes indicating that they were once positive either. If I had to do it over again, I would have had the surgery first.....those two nodes would have been found much earlier and might have changed the chemo cocktail. Doubt the adriamycin would have done the trick though.....who knows? Maybe would have given me a few more years before recurrance. The good news is that there is nothing else showing up now in the body....not one spot in my bones, which was very surprising. I think my oncologist thought for sure they were going to find more. The liver lesions were found while I was being worked up for possible kidney stones.....they were an incidental finding! No symptoms whatsoever! Had I not had that CT scan, the lesions may not have been found for another 9-12 months when I would have started having symptoms! Anyway.......that's my story! Sucks!
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thanks for posting your stories... it's only recently we have heard from women with mets about their oncotype experience, so thanks for sharing, it helps to fill in the picture
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Wildrumara - thank you for taking the time to post your story. i wonder, since you had 2 separate tumors, did they oncoscore both? I see you had a liver resection. I don't know how often that is done. Was it advantages to have found the liver lesions early so they were able to do this? You sound very strong. xxo
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wildrumara - I'm so sorry you've had a progression, but thank you for sharing your story. I find your story interesting because you fall into that "grey area" in Onco testing - the dreaded "between 18 and 30" score where we often have to weigh the risks vs. benefits. Before my score came back my doctor was encouraging me to consider 6xTC, but hoped I would be able to complete 4. Shee offered chemo because I was "young" (first time that 48 is considered young!) and because my cancer was just over 1 cm. Otherwise, she said she wouldn't have offered it. I prayed for either a high or low Onco score - I was terrified of having to make a decision in that grey area, because I'm not sure what I would have chosen. My high score shocked us all; my doctor says it's very rare in their practice to see a score that so vastly differs from the path report in front of them. She says that makes me special - but she doesn't smile when she says that. Oh well - I do. :-)
I try to think that my Onco score gave me the opportunity to throw everything and the kitchen sink at my cancer; like Kam I worry about recurrence but I try to have faith in the choices I've made. Thank you again for sharing your story, wildrumara - I'll keep you in my thoughts. *hug*
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At Kam - So funny you asked the question about "oncotyping" both tumors. My oncologist only ordered the oncotype on the bigger tumor. I had a second opinion with another oncologist a few weeke ago (after my Stage IV diagnosis) and she and I discussed that. She said that the smaller tumor may have indeed been the more aggressive tumor, as we are now learning that the size of the tumor does not have much bearing on the aggressiveness of a tumor!! I remember asking my first oncologist why we didnt send two samples a few years back and I think she said "i would have treated you the same regardless of the score", as far as giving me T/C??
So, someone above asked why the liver resection. Well, its a long story, and it certainly isn't standard of care when there are mets to the liver, but I am considered "oligometastatic" at least for now. IGoogle that word and see what you come up with. Just in the last few years, if you are young, very healthy, and have very small lesions on the liver, and cancer showing up nowhere else in the body, they will consider RFA, SBRT, or other aggressive procedures. They've been doing this for years with colon cancer patients and its starting to make its way over to breast cancer as well, with very selective patients. Anyway, I would have had SBRT (stereotactic body radiotherapy) to both lesions, but one was too close to the stomach and that was definitely a no-no as the radiation would have damaged my stomach. So, they recommended a resection. It was easy-peasy.....I was in and out of the hospital in two days and I am very fortunate. In addition, during the resection, they took an ultrasound probe and ran it over my liver to check for other lumps, bumps, possible freckles of cancer and nothing was found. I am in the process of having the other lesion treated with the SBRT....only have three more sessions left for a total of 5.
So, my hopes is that I will have a long period of NED from these procedures, along with ovarian supression with Lupron, (Probably going to have the ovaries removed in September) and I am currently on Arimidex too. I talked to my oncologist about having chemotherapy now, as opposed to waiting and she said she said its just not necessary, and the second oncologist also agreed. I have zero symptoms, LFTs are normal, tumor markers normal...why go through chemotherapy. I will eventually need it, but now apparently is not the time...not sure what I think about that though...UGH!
Who knows what will happen? Again, with cancer, it really is a crapshoot. And like the one oncologist said to me, there were certainly no "red flags" with my primary diagnosis.....to indicate that I would be sitting here Stage IV within three years!
Thanks for all the well-wishes. I have three beautiful kids and a husband whom I adore......My kids are 16&13 (boys) and an 11 year-old daughter. Have a lot to live for and that is exactly what I intend to do.....LIVE!.
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Wildrumara - you just sound like a wonderful person! I'm sorry you have to deal with this, and your family, but your positive attitude sure does come across. Thanks for all of the information too. It may be helpful to someone else (though, in general, I hope not). Please keep us posted. I keep this thread in my favorites, so will see anything here. No chemo - yeah!!!
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Meow - did your doctor recommend chemo? The Oncotype test score ultimately decided my treatment plan. My score was 11; I had 33 RADs treatments. I had already decided that if my score came back in the high middle range I was doing it.
Diane
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wildrumara,I am so sorry. I have a friend that had colon cancer that moved to her liver prognosis was really bad. She went to Germany and had some kind of immunotherapy, insurance didn't cover it. She suffered very little side effects had her liver resected and thank god she seems ok they are able to monitor tumor markers. Did you have tumor marker your onco was monitoring? My friend never had breast cancer. Maybe you can be a candidate to try something new. Wish you the very best; the bottom line is they don't know for sure what will happen.
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Edwards750, Oh yes. There were 2 chemo options that would result in a decrease in % recurrence maybe 10%. I just decided no chemo, my mind kept saying no. My onco said ok you are high surveillance and are taking the hormone drug he would work with that. After the 1st year he seemed to be a lot more relaxed. I do exercise atleast 60 minutes a day 3.5 miles on treadmill. Also I swim on the weekends a mile each time. Unfortunately I still gained weight. You never know what is going to kill you or what the future holds.
I have another friend at work that was diagnosed with ILC about 1cm close to her chest wall (my 2 tumors were close to the surface but not involving the skin) her OncoDx was 4 yikes compared to my 34. She had lumpectomy and radiation(internal), not 6 months later it was in her hip bone. So she is doing more radition on her hip and spine. But she never did Chemo. I just when it comes back in the bone radiation is used. I asked her if they said it was a reoccurance and they said they didn't know if it was there before but it was metasized BC, so I thought it must be the originated from her ILC.
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Meow - you do gave a good exercise regimen. Mine- not do much but I am a hyper kind of person who is constantly moving and doesn't require much sleep. I do do some form of exercise every day like mowing the front and back yards- and the back is huge, ride my bike around thud neighborhood and I also do the treadmill but only 4 20 minutes not 60. I do set it at 3.5. I also walk the track at the Community Center with a friend. So I try.
I get that some people with low scores have recurrences. The test is not infallible. I am sorry for your friend. I am sure she is devastated. I had RADS too and was told if the beast came back I couldn't have radiation again. The reality is none of us have guarantees.
Diane
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sorry meant have have not have
Diane
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Diane,Sounds like you are doing well. Keep active and positive. My friend is finding people with bone cancer that have been dealing with it for a long time many feel it can be "cured" or treated and go on to live long lives. She is still working.
I always thought bone cancer was like a death sentence; hopefully in the future the word cancer won't carry the fear and desparation that it does now.
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Thanks Meow, so far, so good. I am doing better not focusing on what might happen. I'm the worrying kind. I do keep my game face on around my family. I joined a BC support group at church that has helped a lot. We help others in the church who have been DX and each other. One of the ladies is a radiologist - in fact she is the very one who did my biopsy. We pepper her with questions when she can make one of our meetings. She had BC 10+years ago. All in all one day at a time.
Diane
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six-month follow-up with oncologist this week. Our lab just started doing ki-67 testing two months ago. She dug around and discovered there is enough of my original tumor left to test, so I'll finally have that last piece of the puzzle I've been wanting. I'm really curious to know if it will help explain my high Onco score.
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Nancy,
Let us know, there is a strong correlation between ki-67 and oncodx. Remember 42 is just a number and it won't determine your outcome. Sounds like you are well on your way to staying cancer free. So much exciting information in recent news I was just looking at this article:http://www.newsday.com/news/health/li-researcher-wins-grant-to-solve-a-cancer-mystery-1.8450530
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Hi Ladies -
I am trying to sort out my cancer in my mind. My MO does not know if it is Luminal A or B. It's one of these cancers that doesn't fit neatly into a category and I hate that. From my own research, I always thought ki67 was the big determinant but from reading this thread I am not sure.
IDC .7 cm, LCIS & DCIS
ki67 is 40% & initial two pathology reports said ER+/PR+ but oncotype came back saying ER - with a score of 24 and a 15% recurrence risk.
And so, BMX, CT x4 and Tamoxifen for 10 years. I've always exercised and eaten healthy. There isn't much more I can do. But still, I'm not resting comfortably with unanswered questions about the nature of the beast. If anyone has any insights I would love to hear them.
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WW - what was your PR score - slightly positive or very positive?
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