NEW Oncotype Dx Roll Call Thread
Comments
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see my signiture below for details.
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BLM.SNB , T/C X4
Oncotype26
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Samiam, thanks for adding me to the rollcall!
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Hi, Usually the oncotype test is given just to people who have clear nodes. I see you had three nodes with cancer. Most times with node involvement one does not have an option for chemo. Also 35 is a very high score. I think you should have a long talk with your oncologist. Chemo is usually given to all in your condition.
Remember it may not be pleasant now but we all what we have to do so we may live a longer and productive life. I am now undergoing chemo and had no lymph node involvement , early stage BC , and a smallish tumor. The chemo nowadays is doable. It is not the chemo of five years ago.
Good Luck,
Francine
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Thanks Francine. But I made a mistake when I was doing my profile and I do not have lymph node involvement. I will be correcting that. Does that in any way change your response?
Good luck with your chemo and I do very much agree with your statement of doing what we have to. This is just really hard for me to deal with!
Pam
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Hi Seabee,
Yes, you're absolutely right in regards to the Chemo Dr.s pushing chemo - that's what they've known for years.
I feel I'm in the "grey area" because of the size (and Chemo Dr.s have told me this too). I'm not convinced tumor size is a factor when the Oncotype testing is involved. It is the biology and nature of the cancer, mine is a score of 14. It is agonizing when a Chemo Dr. will tell you about a "cell" or "cells" that may be out there and come back and grow in another area later, if that's the case why even have Oncotype testing?
There was another patient who had a very very tiny tumor, and her oncotype came back a "40"! The office was shocked, so she will be doing chemo.
I want to believe in my low score. I've had a left masectomy with good margins, and it didn't go into the lymph nodes. I want to feel good about my decision with Tamoxifen for the next 5 yrs.
Sandy
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aubry and alo123, you are added.
Sandy, I think you are right about oncologists having a predisposition toward chemo. However, the way my oncologist explained it was this: they eventually see all the people who are the statistics, the 1%, the people with the single cell that got through and caused a metastastis despite everyone's best efforts. And their job is to treat those people and keep them alive. And they'd rather not see anyone end up in that situation.
So I think we have to keep that in mind--they are looking at it from the perspective of trying to keep every single person they see alive in the best way they know how. We have to weigh whether the risks outweigh the benefits given our particular situation.
pamelamont, I do not have a port so I cannot address that particular concern. Hopefully someone else will. But it appears that a score of 35 correlates with a 24% risk of recurrence assuming you do the tamoxifen. I imagine chemo would offer a significant risk reduction.
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Seabee and Sandy--Maybe Sandy thinks she is in the gray area because of the Tailorx Study. It is important to note that dropping the "gray" area down to 11 for the study was to have more potential participants and for statistical rigor. Both my onco and bs said that, some researchers (not cancer, but medical in general) said it was most likely to benefit the statistics. The more participants the more statistically defensible the study is, as I understand it it was not to question those with scores between 11 and 18, but to ensure enough participants. However I may be totally wrong. With that said, it is frightening to be in the 11-18 range, it really upset me for a few weeks until I got a grip and talked with many people, and decided to trust the tumor biology.
Karen
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8%=12 score:RM,SNB,TMXF
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Thanks Karen,
I do want to feel good about my score of 14. The tumor size of 7cm bothers me, but will have faith in the low Oncotype score. I say "gray" or unknown area because of the Oncology Drs., that's what they say, so it naturally sticks in my head.
Good thoughts and health your way,
Sandy
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Bonnie--TC is not necessarily a weaker cocktail than TAC. Most people tolerate it well enough, but the side effects are too much for some. Nevertheless, it does allow one to avoid A, and you can always do 6 cycles of TC instead of the basic 4. Monitoring a course of AC may catch early signs of trouble, but it won't prevent heart damage, which as you know may not surface until later. For me it was an unnecessary risk, and one of the reasons I insisted on doing the Oncotype test.
pamelamont--I had a port put in my arm in anticipation of chemo, because I have very few accessible veins, and they are all small. As it turned out I didn't need chemo, but I still have the port, which is currently being used for blood draws. I will probably have it removed in a month or so.
When the port was first installed it was uncomfortable (but not seriously painful) for about a week or two. Now that it has settled in I don't even know it's there, and when it is accessed it doesn't hurt at all. They still use a special needle called a Huber needle to access it, but it just pops in. It is much more uncomfortable to have them poking around in your veins, IMO.
Chemo can damage your veins, and this tends to be worse if you use smaller veins for infusions. Some people have no problem using their veins, but in your case I think you might find the port a good option. Mine was installed in my arm because the surgeon didn't like the risks involved in installing it near the collarbone.
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Sandy--With ILC, there's the added question of the effectiveness of chemo on that particular tumor type, which was a major consideration in my decision. And as for that little cell or cells, if they're E/PR receptive, hormonal therapy should get them. Unfortunately, nothing is a sure bet in this game, including chemo.
Of course it is statistically more likely that a large tumor will be more aggressive and a small tumor more easily contained. As your counterexample proves, probablility is not fact. Within each grouop there will be many exceptions and deviations.
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Hi Ladies, I got my oncotype score this week. I am 5 wks out from BM with TE. My score was a 13. The appointment with my oncologist is this week. I hope to find out my fate then. I was able to call my BS and his nurse gave me the results over the phone. I wish you all lots of luck.
Kristin
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Hi skippyrcis,
Great score! Bet you're happy!
Sandy
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pamelamont: I have a port in my right upper chest. the procedure wasn't too bad - they numbed up the area pretty well. could feel it a little bit when he stitched it into my miscle -- more of a pulling, than a painful sensation. it was tender for a few days -- tylenol was all i needed to relieve that . I think it is great to not have to be "stuck' for every blood draw and infusion.
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Hi all, I must be a real idiot (thus the name, LOL) but I did my 1st TC on 3/9 despite my oncotype dx score of 11. My dr says it's only a good test, strictly from a clinical perspecive, for those bc patients who are A) Post-menopausal and
have no lymph node involvement. The studies for pre- meno and node positive women are encouraging, but not yet accepted. Is she full of s**t?0 -
Hi, Ann -
I can totally understand your angst about your situation! However, did you ever go for a second opinion? Eleven is a VERY low Oncotype score, completely within the "low risk" category - we are not talking about the "grey area" here at all. I do see from your signature line that you have lobular BC - did your onco think that made a difference? What exactly did your onco tell you that warranted chemotherapy from a diagnostic point of view? I am curious about this, not only from my own perspective (score of 12, VERY similar dx, although I am IDC) but for the sake of others.
AND if your onco thinks it's "only a good test . . . for those bc patients who are A) post-menopausal and
have no lymph node involvement" then WHY did she order the test when you are pre-menopausal and have a micrometic invasion of the sentinel node, as I also have?My gut instinct tells me to advise you to seek a second opinion. It's not too late. I do not know the particulars of your BC - whether it was multi-focal, with a vascular invasion, etc. etc. etc. ILC can tend to be more aggressive than IDC in some circumstances. But seeing that you are grade one with a relatively small ILC tumor, this does not make any sense to me. But then again, I am not an onco - however, please do consider seeking a second opinion. Oncotype DX testing is very much respected in the BC medical community - at least down here where I am - and I am surprised that it is not taken as seriously as it should be where you are, in the Northeast!
Big hugs and good luck - keep us posted!
Maria
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Ann-idiot, I'm sending you a pm.
Skippycris--I have you added to the rollcall. Let me know when your treatment plan is settled and I'll update.
-Samiam40
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Aubry---I am right there with you! I have decided to make the same decision.
Samiam--Please add me to the roll call: Oncotype=21, recurrence 14%, LMP, SNB, RAD, TMXF
Thanks
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Ann-idiot--Maybe it's your onc who is the idiot. I'm wondering where this nonsense that the DX test is only vallid for postmenopausal women comes from. I've also seen posts claiming that it was only valid for premenopausal women, and of course some people, including some oncs, have not yet realized that it is now available to early node--positives.
Britt is giving you good advice. There's no point in poisoning yourself if there's probably nothing to be gained from it. Get a second opinion, And if you're curious about the empirical basis for the oncotype recurrence scores, there's a wealth of information on the oncotype web site. Reading it will transform you to Ann-the-wise. ;-)
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Hi, Seabee -
I totally agree with you, and thank you for the compliment re good advice. Ann, I agree with Seabee, check out the OncotypeDx website.
All of the protocols I have read re the Oncotype test is that it was originally for premenopausal ER PR positive women with NO node involvement. They have recently changed those protocols to include those - both post and pre menopausal - with either micrometic node involvement or one node involvement. Perhaps up to two nodes. The important factor is that it is for early-stage forms of BC - Stages One or Two. Another important factor is that the candidate has to be ER PR positive - I am not quite sure about the HER2 score factoring in here - must research that once again. If I am not quite correct, please forgive me, for I must check out their website once again!
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My Oncotype score was 38 and I'm just shocked that I'm at the high end of this list!!
Pamelamont -- I decided to forego a port. I had 4 rounds of AC and 4 of Taxol, then a year of Herceptin. It killed a number of my veins and I am now considered a "tough stick". At the time, I just couldn't bear the thought of another surgery. Simply refused. It may have been easier to just do the port, but the Dr and nurses were supportive of my decision.
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Hi, When the onco I got a 2nd opinion from scared me (he was admittedly chemo biased) and said the same thing about post menopausal women, but not so good for pre-menopausal women I wrote to Genomic Health this is the excerpt from their reply that applies ( I can live with the answer)
"The original validation was performed on both pre and post-menopausal patients so results do prove beneficial for pre-menopausal women. Additionally, though more recent studies have focused on post-menopausal populations, there is no reason to believe results are not beneficial for pre-menopausal patients. "
I hope this helps.
Karen
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Hi all,
I am getting the OncotypeDX text done so I am on hold. No results yet. Genomic call me today and said if the insurance company will not pay I will have to .... She was very nice but its almost $4,000.00. I only hope my insurance pays. It seams that they do not participate. But I see the usefulness of the test. I really rather not have chemo unless I need it.
kat
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Just a little note..
To get an oncotype test one does not have to be PR +. I was PR - and am now on chemo with no node involvement. Four TC's to be exact.
It is doable..
Francine
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Francine -
Many thanks for the clarification. I am sure the many individuals who have posted here will now be able to gain further insight into this process, no doubt due to your tremendous concern for all involved.
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Bonnie. Hi. I was diagnosed with IDC in 4/08 and had BLM with recon 5/21/08. I had two 1cm tumors near each other and 1 out of 22 lymph nodes was positive - fully involved with cancer. This was an unexpected finding. The first onco I went to post op told me I need TAC x 6 and wanted me in a trial with Avastin. She told me that I could possibly have heart damage in my later years. I was also told I needed radiation tx. My cancer was grade 1 and Ki-67 was 4%. A slow growing cancer. I felt this treatment would be overkill. Went to another onco who said TC x6 would be enough. Fifteen days post op I was listening to the local news and saw the geneticist from my hospital on TV stating that oncotypes are being done on node positive women. I called genotype in California(they are very nice) to ask if this was true. They verified what I heard but said that my insurance carrier might not want to pay for the test but that they offered help for people who could not pay. I was not concerned I was willing to pay if I had to. Called my surgeon who ordered the oncotype done and it came back 11. My oncologist was baffled by my score. He had a meeting (tumor boards) with the other docs in the hospital and I know one doctor said to listen to the results and the biology that I don't need chemo. When I met with my oncologist he had spoken to other specialists in the country and came to the conclusion and recommended I have TC but only 4 rounds. I did go thru the chemo but did not go thru radiation tx. My insurance carrier did pay for the test. I felt that I listened to my inner voice and armed myself with as much knowledge about my disease as possible in order to make an informed decision for my care. I am on tamoxifen for two years and then I will be switched over to an aromatase inhibitor. It is just a year since my diagnosis and I have gone thru all my treatments and I am happy with the choices I have made for myself. I wish the same for you.0
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Hi Charlotte,
What's most important is that you went with your inner voice and are happy with your decisions. Sounds like you did your research. It's a tough decision with different opinions regarding chemo, everyone has to live with their choices. Best to you! And congrats on the low Onco score!
Sandy
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Charlotte--Just wondering why no rads. Did you have a mast?
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Hi Seabee,
Yes, I had a bilateral mastectomy with lymph node dissection - 22 nodes removed with 1 node fully involved in cancer. The lymph node was near my 2 tumors. It was not one of the sentinel nodes, but my surgeon said he saw the node and that it looked "funky". Lucky for me that he saw the node and did the dissection. Several radiologists recommended radiation but that was before they knew about my oncotype. The head of radiology at my hospital who saw me when all the test results were in said in his opinion I did not need radiation tx. Both my surgeons - breast and plastic said radiation was not necessary. I did decide to go ahead with chemo because of the positive lymph node and extravascular invasion in my pathology report. Also, I am on Tamoxifen since I am highly estrogen positive. According to my oncologist taking tamoxifen is more important than chemo or radiation, after a mastecomy. We are all different and have to decide what is best for ourselves. The best we can do is educate ourselves about the disease process and treatment options, ask questions and get a lot of opinions.
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