NEW Oncotype Dx Roll Call Thread
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CorinneM1: My BS was also a bit surprised at my Oncotype DX score. She seemed so confident that because my cancers were found so early, were small and "well behaved", that the score would be lower. Mine was 18, right on the cusp of low/intermediate. I'm opting out, but I would likely feel exactly as you are if radiation was also up in the air...too many "ifs" hanging out there....
Cancer sucks.
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Corinne sorry that radiation is up in the air for you as well. That is kinda the whole point in a BMX. Hopefully they will decide you do not have to do radiation. Good Luck with your 3rd opinion
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Funny how we move on so quickly once we get our answers. I was on pins and needles for weeks about the oncotype and now can barely remember the details. But I'll add my stats to the mix in the hopes that they help someone else.
I had two tumors, the larger one got a score of 12, the smaller an 18. I did have micromets on one lymph node. No vascular invasion. I had a uni mastectomy. There was DCIS as well. I am 44 and have a LOT of family history although tested BRCA negative.
My onc said she would sleep well at night if I did not do the chemo. She also said that she would do it if it were her - just because of the unusual aspects of the case (multicentric & micromet). The other doctor she consulted with said she would NOT have chemo. She gave me lots of statistics and results of several studies. It seemed like everything she told me was split down the middle - one study would say I was at greater risk, another would say I was not.
In the end, I decided to go forward with chemo and just had my first T/C treatment (of 4) last week. I just knew in my gut that I would regret it if I did not. I wish the data had been more clear so that I didn't have to go by gut alone, but I do trust myself to make the right decisions for me. None of this is easy. We all have to do what will benefit our health in all respects - and that includes what allows us to sleep at night.
Oh yeah - no radiation for me, since I had the mastectomy and they don't do it for the micromet. I'll be on Tamoxifen once this course of chemo is up.
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Hi, I had the Oncotype DX test run in April (Score 18 = 11% recurrence rate). Last night I just happened to be looking through the little booklet that Genomic provided and I saw the following statement: "....is performed on a small amount of your tumor tissue that was removed during your original surgery (lumpectomy, mastectomy, or core biopsy)". My core biopsy was perfomed at a radiology center in my home town and my mastectomies were done in a hospital 125 miles away. I believe the Oncotype test was run on my surgical sample, not the "original" core biopsy sample. This tumor was pretty small to begin with and was told that the core biopsy likely removed a good portion of it. Both the core biopsy and surgical pathology read as invasive lobular Grade 1. I will see what I can find out from Genomic tomorrow, but just wondering if anyone else has done any research or has heard whether it's preferable to run the test on the original biopsy specimen. Thanks!!!
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TinaT, I don't have an answer but still love this thread. Glad others are finding it and posting.
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I spoke with someone at Genomic today and found that that sentence regarding the "original" tumor sample is just meant to reassure patients that they do not need an additional biopsy just to do the Oncotype DX test, not that they necessarily prefer to test the first tissue removed from the tumor. He also pulled up my file and confirmed that the test was done on the surgical specimen (as I suspected), but all looked good with the sample, etc.
Feeling better with that, but a wee teeny bit bothered by something else he said
. In their quality assurance studies Genomic has found that when they test the same patient sample repeatedly (to test for reproducibility) the results always fall in a very narrow range of + or - 2 Score points. He meant that to reassure me, but of course my brain instantly thought, "OK, so my score could actually be 20 instead of 18?" I've been feeling good that I wasn't actually IN the intermediate range, just on the fence. Instead, I'm going to choose that I could actually be a 16, off the fence and in the "low" yard!0 -
Oncotype Dx score of 2 (4% recurrance chance). 35 rounds of RAD, tamoxifen for 5 years. I have been on Tamox now for a month. I am 36 and premenopausal, period is non-existant. Feeling like i dodged the chemo bullet. Dr was fairly certain I would score a 25, but this was not the case. I am feeling a little nervous about skipping the chemo, although the low recurrance score. Does anyone else feel this way?
Sorry we had to meet this way, on the BC board. BUT you guys are a great bunch of ladies!
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My oncotype Dx score was 19 - I have a heavy family history of breast cancer and elected no chemo at the onc. advice. I was truly overwelmed and just sobbed uncontrollably at that appoinment. I chose a BMX to avoid radiation. I'm BRAC negative. Now its on to reconstruction, arimidex and the rest of my life
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Drdolittle-----------I too have a strong family hx , onco dx was 30, failed first chemo b/c it almost killed me------Brac neg. But family hx so strong I had decided on an elective, twin and 9 cousins, 2 other cousins with Ca, 3 paternal aunts---2 BC ,1 rare misplaced tumor of ca found in the lung was on her thumb. HX if I gave you the whole scoop, you would go OH my. I later found why I failed chemo------when I was researching , I found a drug interaction checker called Genelex. It's extremely sophisticated. Primarely into cytochrome 450 liver pathways. My failure for chemo and significant reactions to Arimidex and Femara and Aromasin-------Norvasc. No one at the original cancer center had run a drug checker interaction. Nor did the supply pharmacy on the AI's. Think that drug interactions are automatic checked. No. They all had the programs , but didn't run them. Asked if I could do the chemo without the offending drug. ONC-------no research to support it that long after resection-1 year. Their errors reduced my survival percentages by what?
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I had a low score of 11 in 2007. No chemo because this proves that it would not really be helpful. I too was stunned to not have chemo. In 2007, very few women on this website were having Oncotype so it was so hard to make a good decision. So glad that this thread has continued.
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Well I am one of those node positive girls with a 5mm ILC and an oncotype of 5. How do I know what my recurrance number is? All oncs say chemo because still not FDA approved for node positive patients but I am just about positive I am opting out of the chemo. (My first onc ordered the oncotype because all testing pre BMX came back no node involvement.) Suprise found during surgery 2 nodes positive!
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Dixiebell... My MO didn't even order the oncotype because of the microscopic positive node i had... He said chemo was the thing to do to avoid a systemic recurrance... And even with chemo, the odds of a systemic recurrance for me is about 14%... so without it would be playing russian roulette... I urge you to consider having chemo with two positive nodes... Clearly it spread that far and chemo is the only thing to contain it if it has moved unknowingly beyond those two... Chemo IMO was a cake walk compared to my BMX.
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The Oncotype score does not take into account grade or node involvement, which gives people that should be getting chemo false hope.
Please research before skipping chemo. I met women in my support group, one had a postive node and one had grade 3, they both skipped chemo and now 1 year later they are stage 4, a low oncotype score is deceiving.
Just throught I'd put in my 2 cents for what it's worth.
Edited to add, I did not know what their onco score was, or if they had any other treatment, I am also wanted to add just because I had chemo does not ensure that the cancer will not spread or it could not have spread through my blood stream. It was my personal choice ad I wanted to give it all I could and fight back when I could. I did what I thought was best, doesn't ensure anything, only that I tried my best....Bevin, I'm going to PM for privacy reasons. I will always be grateful to the strong, amazing women on this site.
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HI Chasing hope - I didnt know that the Onco score ignored grade. I did use it to decline chemo for my T2 tumor; as I was node negative. I have always been concerned about skipping. Could you tell me where you found this info. Its behind me now, but diligence is clearly needed given your friends experiences.
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Just want to ensure that everyone has more information on this topic. Even a low Oncotype score does not guarantee that the cancer will not recur or that it will not metastasize. There is always a percentage of us that will recur or metastasize. A low Oncotype score means that chemo is not helpful. Go to the Oncotype website and read the information. Also, sad as it is, many of us even with small tumors and no lymph node involvement will recur or metastasize even with chemo given. Finally many of us when diagnosed have already metastasized and without scans further studies (PET, MRI), we don't know that we are already Stage 4.
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Glad to see this tread has been resurrected.
My stats:
Oncotype 13 (9%) chance recurrence. 1.8 cm, strong ER/PR positive HER negative, grade 2, 0/2 nodes, no vascular invasion, mitosis 1
Both MO's I saw recommended no chem. Both suggested Zometa 2x's a year with Arimidex.
It was a very difficult decision, but I decided to take their advice.
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Lindissima, my stats are almost exactly as your stats. Same decision. No chemo.
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Decided to post here after I spent a week and a half agonizing about chemo. My Oncotype is 19. After getting a second opinion from a MO and speaking with a genetics counselor, I have decided to do TCx4. Second Dr. said he thought the fact that I have just turned 50, am pre-menopausal and found the lump in May after clean mammo in Dec. made him feel the benefits of chemo outweighs the risks. Plus I know that I have tried every option given to me at this time. Five years from now when the Tailor RX study is done I will look at the results without regrets. I will start Tamoxifen after chemo.
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My score was 16, with 10% recurrence. I had lumpectomy already. Just finished 4 rounds of T/C. Will start 33 RADS end of October, then Tamoxifen for 5 years. Since I am young & a single mom, I opted for the 3% reduction chemo offered me. I'd rather have a 93% chance of NO recurrence, vs a 90% chance!!
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I'm having a bit of a freak out right now. My score was 10, 7% chance of recurrence. However, I am 40 years old, and have a grade 3 tumor that went from 0 to 3.2 cms in 3 months. When my MO got my oncotype score, she changed my chemo from FEC-T to TCx4, but she wasn't happy about it. She isn't really on board with the whole Oncotype DX test. I have been scanning this thread, and somebody said that having a low oncotype score only indicates that chemo will not be effective, not that it reduces your chance of recurrence - so does that mean that I have an aggressive cancer (Grade 3), that won't respond well to chemo?
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Suz,
My two cents.......get another opinion. I had a 19 and got three oncology opinions. I finally decided to get chemo after #2 said he didn't like to put all his faith in this one test. He said that if the tumor is over one cm, if there is node involvement and if it is grade 2 or 3 that chemo is the best option still. TC x 4 is known as chemo-lite. Most often given to node negatives. Trust your gut and keep asking questions. You will feel better if you spend time researching now. Good luck and stay strong.
Susan
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my onc. told me today that because I am already stage iv that there is no need for the oncotype dx test
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Suz-not sure what I'd do in your situation. Does the oncotype trump grade 3? My thought on your tumor going from 0-3.2cm in 3 months is that it was missed for whatever reason or didn't show up on the mamogram. At least that's the way I look at mine. When you show up with a lump a diagnostic mamogram is done & not a screening mamogram. They look harder(extra compression & views) & focus more closely on the lump area. Not sure if this fits your situation.
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Hi Ladies,
Thanks for your input on my situation. I did get 3 opinions. I am in Canada, and so I called a MO in the US that I knew through family connections. She said no chemo, but to have the oncotype test redone, just in case. Again, through family connections, got a 3rd opinion from Hong Kong. They suggested TCx4. Oncotype reconfirmed the test (but didn't re run it), a new pathologist re did my pathology, nothing changed. My MO took my case to tumor board (as did the HK MO), and they decided TCx4. They have never seen a situation like mine before. The US MO was the only one who had experience with a high grade tumor and low score, so I was leaning towards her recommendation. Plus she explained things in the most understandable way to me. However, in the end, it was the sheer fear that my MO was able to impart in me, that made me decide to go ahead with the chemo. I am half-way done now, and I am happy that I did it. It sucks, but it is do-able, which is the feedback I got from so many women on this board.
Now I am just worried that the chemo is not going to actually help me, but I think I am being a bit irrational right now. Gotta get over thinking the worst is going to happen all the time. It isn't easy.
Thanks again for your input.
Suz
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Hi there - my oncotype score was 13 with an 8% risk of distant recurrence. I had a BMX - no rads, no chemo, Tamoxifen X 5 years. I was BRCA negative, 46 years old.
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delete
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Thanks Sunflowers. I'll be doing hormone therapy next, so hope it isn't too bad. Thanks for your wishes, and input to my situation. I appreciate it a lot :-)
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My oncotype score was 14 with 9% risk of recurrence. No chemo. On to radiation followed by 5 years Tamoxifen.
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Before the oncotype test my recurrance percentages are 9% with Tamoxifen, 6% with chemo. I have no node, ER/PR+, Her neg, and have already had UMX. I've decided I don't want to go through chemo for only a minor decrease in the percentage. Hopeing my Onco is low enough. I meet with oncologyst next week. I want to start the Tamoxifen ASAP.
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