ILC & No Chemo?
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The research above said high PR and low ki67 correlated with low Oncotype score. I wonder if you can get a low Oncotype score with high PR and high ki67. My 2011 Oncotype was low but the cancer recurred. My 2011 path report showed high ER and high PR, but ki67 was not given. My 2014 path report showed high ER and high PR, and high ki67 (>20%). Could the ki67 have been high in 2011 in spite of the low Oncotype? If so I would have done more aggressive hormone therapy. I probably shouldn't, but I'mtrying to figure out what the heck happened.
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Hi ShetlandPony:
There is this report from 2011, which may be of interest. I do not know if there are any subsequent studies that either confirm or undermine these findings.
http://www.nature.com/bjc/journal/v105/n9/full/bjc...
However, since the above was published, some institutions no longer conduct Ki-67 testing (e.g., recent experience from someone seen at Dana Farber in MA). Apparently, there may be methodological issues (e.g., reproducibility concerns from interobserver variability) with the immunohistochemical (IHC) methods used to provide a semiquantitative estimate of the percentage of nuclei with positive Ki-67 protein staining.
In addition, there may be variation or concerns with the "cut-off" threshold to determine "high" or "low", and some possible lack of clarity around the prognostic significance of Ki-67 determined by IHC in some sub-groups.
http://www.nature.com/labinvest/journal/v94/n1/ful...
http://link.springer.com/article/10.1007/s10549-01...
http://www.nature.com/nrclinonc/journal/v12/n5/ful...
Keep in mind that Oncotype uses a different methodology that determines Ki-67 mRNA levels, and also measures mRNA expression levels from several proliferation-associated genes: Ki-67, STK15, Survivin, Cyclin B1, and MYBL2.
BarredOwl
[Edited to clarify the reason given related to reproducibility and revised wording in current paragraph #3]
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Shetlandpony - I'm so sorry you are dealing with this. I think the research published in that paper was trying to come up with a model where they could throw all of the numbers into an equation and arrive at some ability to predict a recurrence score. I don't think any of the numbers by themselves have that much weight. As far as I know, Oncotype dx is the only one that has been thoroughly tested by clinical trials.
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Thank you for the links, BarredOwl. I will read them.
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Hi Shet,
My Ki67 was 30% and my ER/PR is high. Surprisingly, Oncotype came back at 14.
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I was diagnosed with ILC in June 2015 plus bone METS, in addition to IDC in 2014. I declined chemo because my research showed less than a 15 percent survival advantage for me with chemo.
Instead, I started going to an integrative oncologist, Dr. Keith Block, the author of Life Over Cancer, who has practiced medicine for over 30 years at the Block Center in Skokie, IL just north of Chicago. He advocates a whole foods, low fat and low sugar, mostly vegan anti-cancer diet. He insists on aerobic, strengthening and flexibility exercise every day. He also has me taking 10 supplements, 2 OTC drugs, the aromatase inhibitor Arimidex, metformin, and gives me quarterly infusions of the bisphosphonate, Zometa. In addition, he has me doing meditation and positive imagery exercises every day.
Because of his holistic, individualized approach, I have more energy than ever and am able to lead a very active life style playing tennis and pickleball, biking, swimming and doing yoga.
Enjoying life more now than ever.
Sandie
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THank you SAndie........is his exercise program in his book?
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@MamaM - I was dx in Oct at age 65. My MO has put me on Letrozole. My BS was not able to get clear margins, and I will be undergoing a MX in Feb. I was assured that the MX will get rid of all the cancer, so I won't even need RT. So, other than the surgeries, I will just have the AI for 5 years. BTW my Oncotype score was 27.
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Hello all, just reaching out to see if any of you know of research articles specifically considering the effectiveness of taxanes for ILC in the adjuvant setting?
Thanks for any input!
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Mairew. Wow. So you are giving me an example of a low oncotype with high ki67. In premenopausal ILC. My oncotype was just two points different from yours. You had grade 2; I wonder if a grade 1 (mine) could have that situation. I wish they had tested and reported my ki67. I wish I had been at a more specialized cancer center back then; maybe they would have done that. Did your doctors consider that ki67 score in devising their treatment plan for you?
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most ILC is grade 2 when found as it is often found later than other types of BC
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Lily, do you mean Stage II (instead of grade 2) which is area involved? Grade, I thought, was just the speed at which it grows--the aggressiveness. The dx I got was high grade 1, but stage II, because I had positive nodes and over 2 c. in size.
Claire
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No I was told often Stage 2 and Grade 2 before its discovered by an Oncologist at the Royal Marsden
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Marie, I had a high ki-67 (44%) with a low oncotype (15). I was post-menopausal, but some women have "estrogen dominance" in pre-menopausal years. I wonder if that could cause it. I had been on HRT, so when I stopped it and started neoadjuvant Femara, my ki-67 dropped to 3% with a month. My cancer LOVED HRT! So if the estrogen and progesterone become out of balance, as they can as your egg supply dwindles, perhaps that makes you more susceptible to ILC. This is just a guess.
Mrock, I've read that standard chemos in general, including taxanes, don't work well for ILC. It also appears you've had very aggressive treatment already. You have IIIC, which is different, and may call for such treatment. I hope this does it for you.
I became a IIIa only because advanced technology found micromets in my sentinel node after initially declaring it negative, then doing an ALND and finding 3/22, all 2mm or less. Doing an ALND was questionable, but I wasn't going to do chemo or radiation on my straight-to-implant breasts. The risk didn't warrant pain and loss of function to me.
Claireinaz, you might be a stage III, based on 6/11 positive nodes. What was your tumor size? But after reviewing stages, I'm wondering if my ALND was necessary, and I'm still stage II because my nodes were micromets. So stage is based on size of tumor and # of lymph nodes, and how it's interpreted.
ILC is usually grade 1 or 2. This is based on a list of tumor characteristics after biopsy.
And I'm probably repeating myself too much in various threads, but I encourage everyone to learn about their cancer and take charge of treatment. There's studies saying more isn't better. We know this with ILC, and other types of cancers have their own versions of "too much tx." Ask questions, and if you get resistance from your Dr, find another
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Thanks, Leslie13. Yes, exactly as you say. Although chemotherapy is not as effective for ILC, both my oncologist and the 2nd opinion I sought believe I should complete 12 cycles of taxanes as well, given my disease burden. I would find that easier to accept if I could find any evidence of effectiveness. Thanks for answering.
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I'm trying to get my Onco to use Faalodex + Femara. Both are hormone based. There's a clinical trial out there for using both as Neoadjuvant therapy prior to other treatments. Seems like since my ILC is so responsive to anti-estrogens, that it makes far more sense. It may for you too after this treatment.
It's important to remember the caveat, that what's right for me may not be what's right for you, even if we have the exact same results. I'm childless, over 55 and retired. I also live with chronic pain from what's likely an Auto Immune disorder and quality of life comes first. When the Cancer first started I had sky high Lupus markers, but lousy follow-up. My cartilage is wearing out too fast, among other symptoms. I'm not risking further neuropathy or joint damage than I had at my Big C DX. Of course I needed a BMX and follow-up hormones. But if I had children or another scenario, my choices may be different.
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Sorry to hear about the chronic pain, Leslie13!
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Shet, At first my MO was really pushing for TC based on pathology, tumour size and age. She said everything about my cancer was intermediate and my Oncotype would be too. So she was surprised when it came back low risk. Had I had any node involvement or came back even barely intermediate she was having me do chemo. So that being said, the Oncotype Score trumped the Ki-67. I wont lie, my Ki-67 makes me very nervous. The Ki-67 was run at two separate university hospitals and both times came back high. My treatment plan is lumpectomy (done) followed by whole breast Rads (upcoming), followed by 10 years tamoxifen.
Leslie13, Yes, I wonder what pulls the Oncotype score down to low risk, when the Ki-67 is so high. I am slightly higher on progesterone I think. I need to look at the path again. I don't think I am or ever have been estrogen dominant. I have never had any symptoms of estrogen dominance. I have no family history, good BMI, no birthcontrol in over 20 years, breastfed for 4 years with my daughter, and am only finished 3 years since DX. Always had regular ontime periods. Even BFing I got my period 8 weeks after having baby. (Total bummer). I kind of think that's when all this bad shit started up. MO says she is seeing more and more younger ILC patients. Sorry to hear you are dealing with chronic pain. That sucks.
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That would make me nervous, too Maire. I would want second and third opinions about possibly using ovarian suppression and maybe an aromatase inhibitor instead.
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Ki67 is the product of MKI67 proliferation-related gene. But, high positivity od Ki67 doesn't mean tumour grow quickly. Generally Ki67 marker alone doesn't show how fast does tumour grow, but we only know how many (percent) cells are in cell-cycle irrespective of phase. Mitotic index is better marker of cancer growth rate, but Ki67 is better prognostic index.
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Thanks to Grandma for link to the study about Pr% and recurrence rate risk (Oncotype score). I haven't yet undergone lumpectomy but I know from initial biopsy that Pr% was only 5%. Not encouraging for me but I guess I'll know more after surgery. ER% was 100% strongly stained so at least I've got that going for me. My docs also downplayed the importance of Pr status compared to ER but this study shows it might be important to give it at least some attention. Once I have surgery, if my MO balks at doing Oncotype test, I may reference this article and urge her to order it.
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I don't understand the study. My ER is 90%, PR is 40% Her2 negative - what does that mean? Is it good or bad? Don't see a Ki67 score anywhere.
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Thanks to Grandma for link to the study about Pr% and recurrence rate risk (Oncotype score). Grandma, forgive me if you've already posted the answer to this question but what was your PR%? Did you have Oncotyping and if so, did the two (inversely) corelate?
I haven't yet undergone lumpectomy (next week) but I know from initial biopsy that Pr% was only 5%. Not encouraging for me based on the study in link you provided but I guess I'll know more after surgery. ER% was 100% strongly stained. My docs also downplayed the importance of Pr status compared to ER but this study shows it might be important to give it at least some attention. Once I have surgery, if my MO balks at doing Oncotype test, I may reference this article and urge her to order it.
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Sunnyone - my PR was 80%. I don't have my Oncotype score yet, and I have not met with an oncologist yet. Although the ILC histology and biochemical markers are favorable, I'm pretty sure he will order the Oncotype test because of the size of the tumor.
It's important to note that the relationship between high RS and low PR is only a correlation. The authors of the paper suggest that the biochemical markers they used to identify this correlation may someday take the place of the Oncotype test, but they have no clinical data to support this. However, it does give you something to take to your oncologist if they are reluctant to order the Oncotype test.
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grandma3x
I got my Oncotype DX score yesterday and it was 20. Im really struggling with chemo or no chemo question. Chance of distant recurrence is 13% without chemo and 7% with chemo. That's DISTANT recurrence, (in other words, metastisis, not local recurrence). its got me spooked.
Appointment with Oncologiat in 5 days. Any thoughts?
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gohan
You wrote that classic ILCs like many Luminal A tumors don't respond well to Chemo. Can you please tell me where you found this information? I would like to research it as it relates to my own BC.
Thank You!
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Hi Sunnyone! First, your score is certainly at the lower end of the intermediate range. My question is where did you get the information that your risk of distant recurrence goes from 13% to 7% with chemo? I had an oncotype of 24 which had a distant recurrence risk of 16% and with chemo lowered to 13%. I decided the 3 points was worth the risks of chemo....a decision I don't regret. But I would suggest that you get more information about the risk reduction with chemo in your situation. I think it could be much less than you believe and could definitely change your chemo decision.
Good luck! MsP
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Sunnyone - I would take the paper to show your oncologist and get his opinion. He would have a lot of experience with patient outcomes that may be totally different from what was reported in the paper, or he may leave the decision up to you. I think I would also ask what kind of chemo and how many rounds he would recommend for your situation. I've heard that many of the new chemo regimens are easier to tolerate. Your age would also be an important factor. If you are still young, you will have many more years for cancer to recur, and chemo might make a difference. The older a person is, the more likely they will live out our natural lives without a recurrence because the time left would be shorter.
For my situation, the MO looked at node status (same as yours), Ki67 % (mine was10%), 95% strongly positive ER and HER2- status, grade, and the lobular histology, and told me that my cancer would respond well to endocrine therapy. I think the only difference between my pathology and yours was that my PR was higher but the size of the tumor was also much larger than yours.
As MsPh noted, your score is barely into the intermediate range. If you are not comfortable with your MO's advice, you may want to get a second opinion.
Best wishes! Let us know how things are going!
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Ms Pharoah,
Many thanks for your very quick reply. The 13% to 7% figures came from my Oncologist yesterday when she read my Oncotype DX report and called me with the score. She DID say, exactly as you did, that the score was in the low-intermediate range. Later, she emailed the report and based on the "Prediction of Chemo Benefit after 5 Years" graph, it looks more like 10% to 6% to me. (Like you said, benefit might be smaller...............)
I have an appointment with Onco on Monday to discuss all this and I will question her further. I'm just now starting to research Chemo for ILC and realize there's a lot more to consider.
I notice your tumor was similar to mine however Grade 1 (mine was 2). An initial glance at your very hopeful tumor stats would not necessarily point to chemo (in my totally uneducated and naive assessment). Can you tell me if your 24 OncotypeDX score was the determining factor for you chemo decision or was there something else?
Also, how long did your chemo last and what side effects did you experience?
Many thanks,
Sunnyone
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Hi Sunnyone. My decision regarding chemo was based on the Oncotype DX score of 24 and my MO's recommendation. Her recommendation included the following: 1) I had a grade 1 tumor, no nodes, but my K167 was 17% which is not considered low and 2) my PR was negative. MO feels that this is a more aggressive tumor type but only recently being researched and 3.) I am in good health and have a great support for the treatment. I also consulted with my husband and grown children about this and they were unanimous that I do chemo. I had 6 rounds of TC (Taxotere and Cytoxan) every 3 weeks. I worked throughout chemo....missed work the day of the infusion and on two of the cycles I had to call off an additional day because I didn't feel well. My MO knew I was going to work so she and the nurse did a great job of helping stave off the side effects. The side effects I experienced were 1) a rash on my chest after the first infusion (no repeats) 2) some problems with the IV site (I did not have a port, so my infusions took a toll on my veins 3) increasing fatigue. My husband took care of the household duties. By the time I got to the last few treatments, I pretty much went to bed as soon as I got home from work but otherwise, I maintained a normal schedule 4) hair loss. I loved my wigs; had several 5) dry mouth 6)taste issues. I lost about 10 pounds because there were many days when food tasted terrible. 7) diarrhea and nausea. This only happened a few times and generally because I didn't keep up with the preventative medication I was given 8) on day 3 and 4 after the infusion, I felt like I had the flu. Body aches mostly.
I hope this is helpful. I did NOT want to do chemo, for sure. I was lucky that my husband is retired and was able and willing to take care of all the household duties, errands, etc. so that I could use my energy for working and having fun. (Yes, we had fun during treatment too because the 2 weeks before the next cycle, I felt pretty good. For me, working was good. It kept me distracted.
You can PM me if you need any other details. Good luck with your decision. And don't look back. The decision you make is the RIGHT decision.
MsP0
