Oncotype DX Roll Call!
Comments
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Ditto Harley44!
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Moody...did you see my previous post that my percentage said 24% for a score of 35? didn't know if you missed it. sorry.
Artsee
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Ooops! Thanks artse, that makes more sense--LOL-- I fixed it.
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This has been a very interesting thread - thanks to all who have shared their stories and information. I found the following web site very helpful in understanding cancer and how it can spread. My understanding is that even if my lymph nodes are totally clear of cancer cells, with IDC there is still a risk that cancer cells infiltrated my blood stream DIRECTLY - not through any "dumping" action of the lymph nodes. I hope the following information quoted from the web site below is helpful to other people:
Adjuvant chemotherapy for cancer is a difficult treatment to understand. As one patient said: " You are suggesting that I have treatment which will make me temporarily unwell, to treat cancer that you can't find, and can't be sure you have eliminated even when treatment is finished". That is what adjuvant treatment is about. It is similar to life insurance. When you pay your premiums to the insurance company, you are recognizing a potential risk to your life that may or may not happen (car crash, sickness, earthquake, hurricane, etc.). Treatment with adjuvant chemotherapy is designed to reduce the risk of cancer returning. Large scale clinical trials have shown significant benefit from adjuvant therapy for patients with breast cancer, colon cancer, testicular cancer, lymphomas, etc. However, like so many things in life, adjuvant therapy does not come with a written guarantee. In spite of this "no guarantee" clause; when the length of time on treatment along with its side effects are balanced with the possible benefits such as a longer life, then for most patients eligible for treatment the benefits usually outweigh the risks.
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Regarding statistics - read the following essay written by a Harvard professor who suffered from abdominal mesothelioma. It was very helpful for me:
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Nope, no guarantees with this cancer stuff. Cancer is some unpredictable "crap" and it also has to be handled as a "crap shoot" as it were. We do what we have to in order to HOPEFULLY prevent a recurrence. I chose adjuvent treatment and happy I did. Microscopic cells can escape and go into our systems so we owe it to ourselves to do what we can to kill what ever may be left behind.
I had a 4.5 cm tumor. I went through a PET/CT scan at dx to see if there were any mets and thankfully none were found BUT anything microscopic cannot be seen so really, truly, what good is it. I mean yes, if you have mets, it helps in determining treatment but even without mets if there are microscopic cells "sitting" somewhere...mets are sure to follow. I was also told at surgery that my 2 sentinal nodes were clean...however, after a further, more microscopic examination ONE microscopic cell was found in my first node....thank God that "reader" slept well the night before
so at my pathology reading we were told that instead of node negative I was now considered node positive. Although a "set back" I felt blessed that this cell was found and it did alter my treatment plan. So I did it all....mastectomy, 8 doses of dose dense chemo, 28 radiation treatments and 1 year of herceptin receiving it every 3 weeks. Also, I decided an a prophylactic left breast mastectomy when a suspicious area of calcification was found. So, yes, we do all we can.........one never knows. We do what we can control and the rest is out of our hands. What will be will be...
In the meantime...One day at a time.
Mary Jo
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Okay seabee you got my curiosity up enough that I had to research how cancer cells get into our blood stream and I found out!
According to Emory University (Here in Atlanta) cancer cells often secrete enzymes that enable them to invade neighboring tissues. These enzymes digest away the barriers to migration and spread of the tumor cells.
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I wanted to remind the Newbies that the score is only one tool for deciding on treatment and that each of us is an individual with a different pathalogy, consitutiion, family situation, pain tolerance, personality, financial situation, ect. What you finally decide is right for you is the right decision for you. And if you do someday, lord forbid, have a recurrance please remember that you still made the right decision. You will never know what going down the other road would have brought. You may never see cancer again which ever decision you make and you may have a recurrance regardless of the choice you make. How we live our lives is in our control, but our lives are not. How we live our lives effects what our live are, but does not completely control what they are.
I will add my background and reasoning FWIW. If it ring true in someway for you use it. If not ingnore it, don't worry that your way of reading similar results was different because you are a different person and your path and your view point is supposed to be different.
I had a score of 13 which has a recurrance rate of about 8%. (I am probably closer to the 12% end of that margin actually.) But the Adjuvant! (or whatever the name of the other tool the doctors use is) indicated a recurrance rate about double that. My Onc feels my score should really be higher given mostly the invastion of the lymph system (but not the nodes) which is not concidered in the ontoype mode. He also felt that my tumor size (2.4 cm) (with two smaller tumors in the same breast) and my age (44) deserved higher weight that he thought the were given in the model (If I understand his explaination properly.) He recommended I do chemo and I am following his advice. He is one of the doctors on the panel of NCCN that created the BC practice guidelines and explained everything well so I have alot of faith him. But I also really liked my other doctor, who is with Dana Farber (a highly regarded cancer center) and she said I could reasonable forgo Chemo, if I took shots to turn off my ovaries along with the Tamoxafin. I think I probably would have had chemo even if I went with her because even if the max benefit was 3%, for me it was worth the pain and the risks of chemo. Though I grilled my doctors about long term side effects to be sure I was going in with my eyes open.
I think I will feel more at peace knowing I did the chemo, if lord forbid I do have a reaccurance. I can tell my family that I did all that I could to be health and to live. And for me, chemo is a spiritual challenge I am accepting and which I can learn from if I choose to be open to the lessons. Seeing this way rather than a toture I am being forced to endure backs it all much more doable for me. I feel that I am controling that which is within my control while accepting that which is not. This is not an approach that works for everyone, but many of the approachs that do work for others, such as thinking of this as a war, does not work well for me. So I found one that does.
Strenth to all of you as you wrestle with you decisions. I wish you all peace with the decision you make. Good love you you all.
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Renrel, for what it is worth, I think your doc was right to recommend chemo. Especially because of how big it was. And you are also right that these tests are merely tools in a big box. AND you were right that they dont to into account angio-lymphatic invasion- which just happens to be the most common way breast cancer cells migrate. That is why pathologist look for it.
I pray you wont have too many SE's and good drugs for the ones you do have! Keep us posted on how you are doing!
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Hello All,
Well I go the answer on my Oncotype results re: PR score, which showed I was PR neg when the pathology report was PR positive. My onc is going with the pathology reports and calling my PR positive as he feels the cutoff on the oncotpe is an arbitrary number...and I'm close enough to positive to say I am.
I've had three tests for HER2 - the initial test was "equivocal" - not positive or negative, so I had a FISH test, which was negative at 1.8 ( positive is 2.2--so it seemed like I was close), and the oncotype was profoundly negative.
I don't think they know what to make of the differences in tests - I guess it's an uncertain science yet. And have to trust his 30 years of experience. Wouldn't change my course of treatment anyway. First round of TC done today.. On my way.
Kathy
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High Moody...Otter is the queen of info isn't she? Matt- thanks for your post as well...I find this very interesting since my ocono score changed the course of my treatment. I was a 49, and initially was only going to do my blm with a slight possibility of a mild chemo. When my score came back my onc strongly recommended 4x AC, 12 Taxol/Herceptin then 10 more months of Herceptin every 3 weeks. I was 35% ER, 90% PR, Elstons grade was 9 (although I forget what that meant) and I forget the HER2 score...
yellowrose...I love your signature...I'm going to have to read up on Ms. Roosevelt and see what other wise things she had to say....
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Moody--
Thanks for sharing that nice bit of information. That would certainly account for the "slipping," the metaphor used on the UK site.
I'm counting on Otter to add more, especially about the lymph nodes. I suppose size and nodes involvement are considered important for prognosis because there is some statistical correlation between them and recurrence and survival. But why assume that a cancer cell would choose to slip from a secure node into the bloodstream, unless it was getting crowded in there. A node is a pretty good place to replicate and build a colony, which is often what happens. On the other hand, escaping from a capillary and setting up shop in a lung or a liver makes perfect sense.
My radiation onco pointed out that sometimes cancer cells do extend outside the nodes for no apparent reason. This is called extracapsular extension, and nobody knows if it's significant or not.
The article Mattscot linked to was interesting, but unsettling. The idea of those stem cells mutating like viruses or super bacteria would explain why recurrent cancer is more resistant to treatment, but then I wonder why some cancers recur and others don't.
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To anyone that wants to answer....So for the cancer cells that extend themselves outside the nodes...why are they not taken care of and killed off by the chemo and the AI's? and the radiation?
Thanks, Artsee
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kt57 how did it go? You shoulda told me and I would have sent up a prayer just for you. of course you may have told me, I still have chemo brain!
flyrzfan, welcome! I added you to our roll call. Do you know what your recur % is? if not, no biggie, but if you do, i'd like to add it. you did have a really high score! glad your doing chemo--even though i know you are not glad!
but we are here for you and most of us have had it or are getting it, so feel free to lean on us. You too kt57seabee im waiting on otter to as she is def the "go to gal!" hopefully she can answer artsee's question!
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Yoohoo Otter....are you out there to answer the question that I'm sure a lot of us would like to know? Or are you still vacationing?
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Thanks moodyk13 TC #1 day 2 - so far so good. was pretty "woogie" from steroids and zofran and I think anxiety played a huge role. No adverse reactions. Pouring in the fluids and peeing like a race horse. Only side effect so far was hearburn last night - pepcid took care of that. Took an ativan before bed - slept good between potty breaks. I am using all the tips from these boards - what a godsend you all are. It is a great place to connect.
Kathy
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Artsee-- I'm guessing that either surgery or radiation would get the extenders, because they are detected in the pathology report. Since they just move out into fatty tissue, I'm not sure how chemo or hormonal would get them, but I suppose neither would do them any good.
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Kew--Do you have a reference for the theory about the effectiveness of chemo? I'm intrigued by it and would like to see the whole argument.
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I'll give a shot at the answer to artsee's question....from the way my oncologist explained it to me......we'll see how I do (it's all jumbled up in my mind . . let's see if I can get it out to make sense)
Cancer cells can break away from the original tumor and go into the blood stream. The reason we do chemo and radiation....and AI's if those are what you need - in my case herceptin. We do all that to HOPEFULLY kill any microscopic cancer cells that are "floating around in our bodies." However, that being said..............we all no that there are plenty that will have a recurrence. The reason the recurrence happened was because the chemo, radiation, AI's or herceptin did not successfully work on the microscopic cells that escaped (if there were any and there is no way to know that. Scans don't show microscopic activity) That is why we are given many different "chemo cocktails" or chemo combinations. They use the one that the they think will do the best with our tumor. Unfortunately, cancer is some sneaky stuff. It was explained to me that it can "hide or evade" the chemo in some of us. In some of us the chemo just doesn't "work" on our cancer.
That's why this stuff is so frightening. There is no rhyme or reason. Just because we did all we could gives us no guarantee that it will not return. I was told that if the cancer returns in the first few years it means the treatment we received was not successful...that's why each year we get away from our original diagnosis is so crucial. Each year we gain without a recurrence shows us that just maybe we had successful surgery and treatment.
That's the best I can do......if I'm understanding your question correctly. Hope this helps.
Mary Jo
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seebee--
I do, but give me a few days as I'm out of town and on someone else's computer. I'll be back Wed.
KEW
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This is an interesting thread, I appreciate all your thoughts and explanations. My Oncotype score was 20 which correlated to a 12% risk of distant recurrence. I chose not to do chemo.
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Hi,
My oncotype score was 27.That is 17 per cent. I have not met again with my oncologist but I think I am leaning toward chemo.This score gave me a 1 in 5.5 chance of recurrence. My husband and I both think that is a high number. My BS just happened to have my results..
My internist felt that it was the right decision to choose chemo before the cancer comes back. At that point they get out the big guns.
Francine
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Marejo--Yes, that's the general theory, and I suppose those enzymes the cancer cells secrete aid their invasion of lymph channels and blood vessels. My question was more specifically about how cancer cells get into the bloodstream from the lymph nodes--if they actually do. Your quote from your oncologist also makes me wonder how a stray cell could "hide and evade" a treatment which claims to be systemic--that is to reach every part of the body. It seems to me more likely that these cancer cells were simply resistant to chemo--like some bacteria are resistant to antibiotics.
Since I had a type of tumor that is resistant to Adriamycin, I saw no point in risking the side effects of AC or closely related regimens.
I get the impression that your oncologist was being straight with you, and the aggressive approach was definitely appropriate to your diagnosis.
Francine--which chemo did you agree to do?
Christianne--How positive was your HER2+?
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Yes sea, I did have an aggressive form of chemo - AC + T and herceptin. All done dose dense. As for the term "hide" or "evade" my first oncologist I consulted with told me that. He said that cancer is very sneaky and knows how to outwit chemo. Sounds bizarre, scary and almost human, doesn't it? Although chemo is systematic, it is like you said........that some cancers are resistant to treatment and that is why recurrences happen and some of us will die from cancer.
Thanks for responding and I hope your day is going great!
Mary Jo
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Okay ladies, I have copied what someone just wrote on my other thread. Im pasting below this. If she is right then WOW what a difference. If she is right, and I figured mine correctly, I will have an 81% cure rate after tx instead of 92%!!!!!!!!!
Read this:
mbradford12000 wrote:
IMPORTANT - I believe that many people here are interpreting the Oncotype Dx test incorrectly.
If you look on the second page of the report, you will see TWO graphs. It is the second graph, the one on the right that shows absolute benefit, that is the one that shows whether or not chemo will change your chance of recurrence. Although the graph on the left is not clearly labeled this way, according to my oncologist's explanation, that graph only shows relative benefit. Here's the difference.
The graph on the left looks ONLY at the people who have had a recurrence. So, let me use my case as an example. In my case, with a score of 28, I know from page 1 that 18 out of 100 people with breast cancer like mine get a recurrence. According to the left hand graph on the second page, recurrence was decreased by about 6 percent by having chemo plus tamoxifen.
But here is the crucial piece of information. This means 6 percent of the 18 who got a recurrence, not 6 percent of the original 100. So, does that mean that my chance of recurrence would drop from 18 to 12%? NO. Since the 6% refers to the 18 people, not the original 100, I have to figure out what 6% of 18 is. 18 people getting recurrence times 6% is only 1 person. That means 1 fewer out of the 18 had a recurrence by doing chemo. So out of 100 people, instead of 18 people getting a recurrence, with chemo, it would be 17. So my chance of recurrence went from 18% to 17%. That's a big difference compared to thinking my chance dropped by 6%.
That is what the graph on the right on page 2, absolute benefit, clarifies. It shows that people in the low category clearly did not improve their chance of recurrence by doing chemo. In the intermediate category, no benefit was shown, but they need to do more research, because it may be that some of this group would benefit and some would not. That is why they are doing the TAILORx trial to see if they can figure out who, if any in this group, benefit from the addition of chemo. Finally, people in the high category did clearly show a decrease in recurrence with the addition of chemo. In addition, this is not part of this report, but my surgeon at the University of Chicago told me there is evidence that tamoxifen + chemo may not be any better than chemo alone for those in the high risk category, FYI.
There is a big difference between relative benefit and absolute benefit. Please make sure your doctor explains this to you. It could definitely impact your decision of whether or not to do chemo.
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crusader1, I added you to the roll call, thanks for sharing your info, and welcome to the thread!
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Moody and others.
What do you think about Mbradford12000's interpretation of the benefits of chemo.Has anyones doctor explained it this way...
This puts a very interesting spin on choosing chemo.
Otter are you out there?
Thks,
Francine
My score is 27...
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crusader1, I have no idea what to think about it. I hope she is wrong, but her details are so in depth, I fear her info is correct. I cant wait to see my doc in two weeks to find out what he says!
Yes, OTTER WHERE ARE YOU!!!!!
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Okay ladies, here is her follow up post and link references. Needless to say I will be doing some printing and discussing with my onco!
mbradford12000 wrote:
"Let us know what your onc says. I googled relative vs. absolute benefit and found good explanations of that concept. I know that it is absolute benefit, not relative benefit, that is important. I also know that my onc told me that with a score of 28 (18%) my chance would change maybe about 1% with chemo, and the way that makes sense to me numerically is the way I have explained it. Next time I see my onc I will ask her if I figured it out right.
I can't really find an explanation on the oncotype website between the two graphs on the page 2 report, but I did find more graphs that show absolute benefit of tamoxifen vs. tamoxifen + chemo.
If you look on this page, www.oncotypedx.com/HealthCareProfessional/ClinicalSummary.aspx?Sid=4 go to the section Validated Clinical Benefits, and look at the tam vs. tam + chemo absolute benefits.
I will keep searching for more information, and if I find more, I will post it.
OK, I found an article that explains the relative vs absolute benefit in the oncotype dx test. It's in the section that starts "The jury's still out...." fifth paragraph down.
From that article, which is on the College of American Pathologists website:
The assay [Oncotype Dx] could also help prevent unnecessary chemotherapy. Using current clinical protocols, "women with node-negative, ER-positive breast tumors under 1 cm are usually treated with adjuvant therapy consisting of tamoxifen only following surgery, while those with tumors of 1 cm or larger usually receive chemotherapy and tamoxifen," Dr. Cobleigh says.
Yet chemotherapy offers only a 25 percent relative risk reduction for these women. And "relative" is the catchword that most patients don't catch. For example, the NSABP study population showed just a 15 percent risk of recurrence rate among the women in 10.9 years of followup. "So 85 percent of the patients did just fine with five years of tamoxifen only" over that period, Dr. Cobleigh says. Adding chemotherapy to tamoxifen treatment following initial diagnosis reduces that 15 percent risk of recurrence by 25 percent, which translates into a four percent absolute risk reduction. "In other words, four out of 100 women who take chemotherapy won't relapse-and 11 will," Dr. Cobleigh explains"
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Sorry its taken me so long to reply to your question but I was off during the holidays and didnt spend much time on the net....
My recurrence score was 8% without tamox and 3% using tamox.
Thank you for creating this list. I think it will help lots of ladies in the decision making process.
Thanks
Jule
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