Help! Oncotest 12. Chemo or No Chemo

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p22nut5
p22nut5 Member Posts: 71

I'm 44 yrs old and had bilaterat mastectomy last March 23. DCIS and IDC on left and DCIS on right. Stage 1. Grade 2 in biopsy but Grade 1 on pathology. Size 1cm. Negative nodes.ER/PR + HER2 - Oncotest 12. My Oncologist is pretty much discouraging me to have chemotherapy. I had a second opinion but I was told that my onco score really showed I dont need to have chemo but if I want max treatment, to have chemo. I would love to hear from anyone of you that has a low onco score what made you reach to a decision to have and have not chemo. I need to make a decision soon and this is giving me a lot of stress.

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Comments

  • ICanDoThis
    ICanDoThis Member Posts: 1,473
    edited May 2012

    Your score is low.  The problem with chemo is that it has side effects. And, sometimes, people die. Heart disease and leukemia are both known side effects. What my onc told me was that in my case, the statistical probability of side effects hurting me was higher than the statistical probability of chemo helping me.

    You will be closely monitored for several years after treatment. With a low-grade cancer, any possible recurrence would be very likely to be caught.


    The most important thing you can do is take Tamoxifen. It will do much more for you than anything else except surgery.

  • PLJ
    PLJ Member Posts: 373
    edited May 2012

    Hi p22nut5

    I so feel your pain. I'm 41, went misdiagnosed for 1 year (long story) so I, too, really wanted to do chemo. I had DCIS (had BMX due to invisible DCIS) along with a 1 cm IDC, node negative, no LVI, grade 2 with mitosis of 1...dividing s.l.o.w.l.y. Because of my misdiagnosis, I lost trust so I ended up with 4 opinions (one was family): no chemo. My Oncotype was a bit higher than yours: 16. Every MO emphasized the risks, like ICanDoThis has stated, along with the 1% risk of death upon infusion. The problem is, chemo is best suited to quickly dividing cells, not slowly dividing cells. One can have chemo and still recur because the treatment does not match the pathology. Do you know how highly ER+ you are? Mine was 95%. I am currently following the ABCSG-12 protocol which includes Tamoxifen, ovarian suppression and 6 treatments of Zometa over 3 years. I also take a low dose aspirin 3-4x/week, exercise 1 hour every day, do Qi Gong, meditate, try to reduce stress, eat well (transitioning to more of a raw diet) and just enjoying every moment, every smile and try to pay kindness forward. I'm pretty busy with life and my responsibilities so breast cancer has started to take a back seat. Getting comfortable with a treatment plan is the most difficult part in my opinion. I wish you all the best as you consider your options. Please feel free to pm me if you have any further questions.

    Hugs,

    PLJ

  • every8thwoman
    every8thwoman Member Posts: 147
    edited May 2012

    p22nut5,

    You have a very low score.  I totally agree with ICanDoThis.  You might be interested in looking at the thread called "Oncotype Roll Call" to see what other people have done with your Oncotype score.  I had a 17 (higher than yours) and opted out of chemo with my onc's blessing.  Best to you.

  • gracebead
    gracebead Member Posts: 13
    edited May 2012

    Hi p22nut5,



    We are BC twins! I was diagnosed on 2/17/2012, 45 year-old (not exactly twins then), IDC 1cm, grade 1, with Oncotype score 12. I had BLM on 3/16/12 and need to make chemo decision too... 2 MO's said no chemo and I just talked to the 3rd one this afternoon. He is not recommending chemo either. His recommendation was Tomaxifen, low sugar diet, baby aspirin a day, and vitamin D.



    I so feel your anguish in making the decision... I need to make mine soon since I need radiation for my close margin on the chest wall. Did you have BRCA genetic test done? Check out the Johns Hopkins website and post your question. RN Lillie is really good at replying fast with good information



    It's so hard, isn't it? Can't sleep, can't eat... I'll keep you in my prayer and let you know as soon as I make my decision. (((( hugs!!!))))

  • jankc
    jankc Member Posts: 96
    edited May 2012

    Hi p22nut5.  My Dx is in my signature.  I had a lumpectomy, 33x of radiation and an Oncotype score of 12.  My MO said no to chemo but at least 5 years of Arimidex and probably more.  He told me I would have a tough time getting any doctor to agree to chemo with my Dx and score but in all honesty, I wasn't going to seek another opinion anyway because I trust my MO.  So, I'm just following his suggestions.   I'm not even a year out yet and I'm not trying to sway your opinion either way, just telling you what I did with the 12 score.  Best of luck with whatever you decide.  : )

  • p22nut5
    p22nut5 Member Posts: 71
    edited May 2012
    Hi everybody. Nice meeting you all and thanks for the response. @ Gracebead, I think we are BC twins because I will be 45 this 22nd of May :) Anyway my ER receptor = 100%, PR = 90% Her2 neg ( 80% tumor cell staining weak ) score 1+. My doctor is really discouraging me to have chemo. I was initially happy when she mentioned I may not need it. But then I started thinking the discrepancy of my lab result. Biopsy says it's grade 2 and pathology grade 1. And there was a "typo" error of margin IDC .6mm ( corrected .6cm ) and DCIS .2mm ( corrected .2cm ) So I was thinking, "what if there are more REAL errors? And of course having chemo it feels like an insurance "just in case". On the other had I'm scared of long term complications. It seems like there are too many cancers in our family in 2 consecutive generations. My first cousin develop AML 1 yr after having radioactive iodine for tyroid cancer. Passed away 1 yr after diagnosis at 36 y/o. And of course my mom passed away from BC metastasis to the liver.  I'm afraid having chemo would give me more problems than benefit. I was reading some thread here and I felt better knowing I would just not be me if I would opt out chemo. Just like PLJ, I want to live a lot more healthier and be more vigilant with exercise. I have heard there are some patients that even refused treatment, just had this raw food diet treatment and their cancer went away. @ Gracebead lots of (( hugs )) for you too. I hope we'll both come up with a decision soon and I wish you the best of luck also. Please keep us posted I would love to know especially you are my BC twin :)
  • NJvictoria
    NJvictoria Member Posts: 119
    edited May 2012

    Hi p22nut5,

    My onco type score was a 10, so no chemo. Had a double mastectomy in January of 2011, no reconstruction :) Every day when I take my tamoxifen, I look at it as my very own little pac man eating up any stray "bad boys" that may be sneaking around my body.

    I wish you the very best of luck in your decision. I too was also very ER and PR + and HER2-

    Vikki

  • Califgirl12
    Califgirl12 Member Posts: 92
    edited May 2012

    Hi p22nut5

    My onco was 17 and my MO was so happy for me!  She said yeah! I don't have to give you chemo.  She said, I make more money when I need to treat my patients with chemo, but in my case it would do more harm than good.  She was very happy and told me that there are many things that I can do to help reduce that onco number down even further.  I was bummed on the other hand because I wanted (like we all do) a much lower number.  She very nicely said "I know we want that number to be Zero but I will help you to reduce that number even lower."  She was so positive that I could'nt help but get myself up off the floor and keep plugging away. 

    Some of the ladies already mentioned what they are doing and as you get further along in your research you will find alot of information out there to help you along. 

  • otter
    otter Member Posts: 6,099
    edited May 2012

    p22n5, your Oncotype DX score of 12 represents a recurrence risk of only 8%.  That 8% is the likelihood that you will get a distant recurrence in the next 10 years even if you take tamoxifen or an AI for the first 5 of those 10 years.

    The thing is, chemo won't reduce that risk very much. My onco said it's typical for chemo to decrease the recurrence risk by about one-third.  So, if the recurrence risk is 8% if you don't have chemo, it will be 1/3 less, or around 5 - 6%, even if you do have chemo.  (One third of 8% is 2.6%.)

    When trying to decide if that 2.6% is enough of an absolute benefit to justify putting up with the SE's and cost of chemo, you also need to factor in the risk of bad things happening as a result of chemo.  Someone upstream mentioned acute problems developing during the infusion; I guess I didn't even worry about that because there are so many skilled nurses hovering around and doctors within shouting distance.  Depending on the chemo drugs, though, there could be a risk of cardiac problems (sometimes irreversible) and/or leukemia (a type that is very difficult to treat). Even the chemo drugs that aren't normally associated with life-threatening heart or blood disorders can cause neurologic problems, like peripheral neuropathy.  There is the usual laundry list of less serious but truly aggravating SE's, such as baldness, mouth sores, fingernails falling off, ...

    Honestly, I don't mean to scare you, or anyone else who's looking at chemo in her future.  I did 4 rounds of Taxotere/Cytoxan four years ago, and I'm fine now.  All I'm trying to do is encourage everyone to think about the math.  As much as we'd like to ignore those numbers, I think we need to understand that sometimes they're important and can help us make decisions.

    For instance, it wouldn't make much sense to go through chemo for, say, a 3% reduction in the risk of our tumor coming back, if there was a 4% chance we'd have heart damage as a result of the chemo drugs.  (I made those numbers up -- the actual risk of heart damage from chemo is not that high.)

    So, if it were me, I would not do chemo with an Oncotype score of 12.  But... (and this is important):  I was 55 when diagnosed, and my oncologist said that was "young".  Young means you have more years of life to preserve; and the risk statistics aren't as trustworthy in young women as they are in oldsters.  That's why 2nd (and 3rd) opinions are important.

    otter

  • doxie
    doxie Member Posts: 1,455
    edited May 2012

    p22n5 -  I would love to have your recurrance %.  After chemo and now w AIs, mine is 12-13%. I am 10 years older than you though.  So I have a 1 in 8 chance in ten years of a distance recurrance from this bc and with relatives living into their mid 90s, possibly another 40 years of life for me.  With the chance of new ocurrance (local recurrance very low w rads) higher, I've accepted that I could see bc again in my lifetime.  Worst thing that could happen?  No. I've seen and can imagine worse.  

    So I agree with Otter.  Math is important.  It doesn't tell all, but it helps.  Good luck. 

  • p22nut5
    p22nut5 Member Posts: 71
    edited May 2012
    Thank you all for the help and info. I am tired of thinking but somehow I need to come up soon with a decision. I got so much more information here than anywhere else. All your input had been very helpful to me. Thanks Otter for the info. I wish my oncologist explains things  like you. It could have made my life so much easier. I think the problem is nobody is giving me enough info except I dont need to do chemo because my oncotest is 12. I'm gonna try to get a 2nd opinion next week.
  • rgiuff
    rgiuff Member Posts: 1,094
    edited May 2012

    I was 47 at diagnosis 4 years ago, with an Oncotype of 14.  I was so relieved not to have to do chemo.  From the obvious side effects like hair loss, mouth sores etc., I was also worried about what it would do to my internal organs, GI system, ovaries, nervous system, etc. on a long term basis.  After my lumpectomy and radiation, I took tamoxifen only, for 3 years, as well as changing my exercise to make it a consistent routine and added much more veggies and antioxidants to my diet, while cutting out most of the bad carbs and fats. 

    Now that I've reached menopause, I'm deciding whether or not to take the AI that my Oncologist gave me a prescription for.  I'm worried about this causing side effects that will age me faster, and I truly do feel safe enough with what I've done already, considering my stage and grade of cancer.  I never had the BRCA done, because there is no family history and I don't want all the worrying that comes along with that test.

  • p22nut5
    p22nut5 Member Posts: 71
    edited May 2012
    Hi rgiuff. Thanks for the response. I went to see another oncologist yesterday and I finally came up with a decision. I opted out for chemo. I feel so relieved and I'm very happy with my decision. I have to do an endometrial biopsy though before starting tamoxifen because I had been spotting since after my fertility treatment 2 1/2 years ago. Did you do ovarian suppression? I did BRCA 1/2 because of our strong family history of breast cancer but it came out negative.
  • rgiuff
    rgiuff Member Posts: 1,094
    edited May 2012

    Thank God for BRCA negative!  No I didn't do ovarian suppression, just tamoxifen.  It was never even suggested, maybe because I was already starting to have irregular periods and other menopause symptoms even before I got diagnosed.  The only time my Onc even mentioned that idea was when I was getting the tamoxifen metabolization test.  He said that if I had turned out to be a poor metabolizer, he would have wanted to do ovarian suppression and have me take an AI.  I turned out to be a good metabolizer anyway.  That test now is no longer even recommended, not considered reliable enough to base decisions on. 

  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited May 2012

    P22Nut5... Join us again on the Stage 1, Grade 1 Premenopausal thread. Our biggest discussion involves ovarian suppression... You will feel right at home there!

  • HealingDreams
    HealingDreams Member Posts: 50
    edited May 2012

    Thanks for initiating this thread, P22Nut5. It anticipates my questions.

    I see the mo on Friday and imagine he will be advising an OncotypeDX test. I also imagine that my score will be relatively low, give my pathology report, but from reading other threads I know that that is not necessarily the case.

    The information in the thread is very helpful for me to understand the chemo choice. Thanks to everyone.

  • NancyHB
    NancyHB Member Posts: 1,512
    edited May 2012

    HealingDreams:  I had been told to expect a low Oncotype score; my doctor seemed fairly certain that we wouldn't be looking at the need for chemo, but because I was Grade 2 and my tumor had grown fairly quickly, he was concerned enough to offer me 4x Taxotere/Cytoxan, "but only if I wanted to do it."  He didn't seem to feel there was an urgent need.  When my Oncotype score came back at 42, chemo became a necessity.  I have a 28% met recurrence rate without chemo/Tamoxifen; that drops to 18% with treatments (close to that 1/3 drop that otter mentioned).  Anyway, sorry for the digression.  My point is we can't always know what's to come, but I'll be crossing my fingers and toes that your score is very low and chemo isn't necessary.  Will be thinking about you on Friday - good luck!

    Nancy

  • Galsal
    Galsal Member Posts: 1,886
    edited May 2012

    tamoxifen metabolization test?  what is that?

  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited May 2012

    galsal:  Until recently, a number of physicians were using the CYP2D6 genetic test to measure a patient's ability to metabolize Tamoxifen.  The test was controversial.  In March, these researchers (see below) confirmed that for Post-Menopausal women, the test is not a good indicator of Tamoxifen metabolization.  Furthermore, it was believed before this research was conducted, that those patients who had MORE hot flushes were better metabolizers of Tamoxifen as well.  Their research found this idea to be incorrect.  While the test has limitations that it didn't include premenopausal women, IMHO, I think the test is considered now out of favor.  Next week is the annual ASCO meeting and I'm wondering if they are going to discuss this topic some more.  One note, though, physicians are concerned about Tamoxifen and the interaction of other drugs and how that may effect the metabolization of Tamoxifen, so one needs to discuss whatever meds they are taking with their doctor BEFORE they begin Tamoxifen.

    _____________________________________________________________________________________________________________________

    J Natl Cancer Inst. 2012 Mar 21;104(6):441-51. Epub  2012 Mar 6.

    CYP2D6 genotype and tamoxifen response in postmenopausal women with endocrine-responsive breast cancer: the breast international group 1-98 trial.

    Regan MM, Leyland-Jones B, Bouzyk M, Pagani O, Tang W, Kammler R, Dell'orto P, Biasi MO, Thürlimann B, Lyng MB, Ditzel HJ, Neven P, Debled M, Maibach R, Price KN, Gelber RD, Coates AS, Goldhirsch A, Rae JM, Viale G; Breast International Group (BIG) 1-98 Collaborative Group.

    Source

    IBCSG Statistical Center, Department of Biostatistics and Computational Biology, Dana-Farber Cancer Institute, Boston, MA 02215, USA. mregan@jimmy.harvard.edu

    Abstract

    BACKGROUND:

    Adjuvant tamoxifen therapy is effective for postmenopausal women with endocrine-responsive breast cancer. Cytochrome P450 2D6 (CYP2D6) enzyme metabolizes tamoxifen to clinically active metabolites, and CYP2D6 polymorphisms may adversely affect tamoxifen efficacy. In this study, we investigated the clinical relevance of CYP2D6 polymorphisms.

    METHODS:

    We obtained tumor tissues and isolated DNA from 4861 of 8010 postmenopausal women with hormone receptor-positive breast cancer who enrolled in the randomized, phase III double-blind Breast International Group (BIG) 1-98 trial between March 1998 and May 2003 and received tamoxifen and/or letrozole treatment. Extracted DNA was used for genotyping nine CYP2D6 single-nucleotide polymorphisms using polymerase chain reaction-based methods. Genotype combinations were used to categorize CYP2D6 metabolism phenotypes as poor, intermediate, and extensive metabolizers (PM, IM, and EM, respectively; n = 4393 patients). Associations of CYP2D6 metabolism phenotypes with breast cancer-free interval (referred to as recurrence) and treatment-induced hot flushes according to randomized endocrine treatment and previous chemotherapy were assessed. Cox proportional hazards models were used to calculate hazard ratios (HRs) and 95% confidence intervals (CIs). All statistical tests were two-sided.

    RESULTS:

    No association between CYP2D6 metabolism phenotypes and breast cancer-free interval was observed among patients who received tamoxifen monotherapy without previous chemotherapy (P = .35). PM or IM phenotype had a non-statistically significantly reduced risk of breast cancer recurrence compared with EM phenotype (PM or IM vs EM, HR of recurrence = 0.86, 95% CI = 0.60 to 1.24). CYP2D6 metabolism phenotype was associated with tamoxifen-induced hot flushes (P = .020). Both PM and IM phenotypes had an increased risk of tamoxifen-induced hot flushes compared with EM phenotype (PM vs EM, HR of hot flushes = 1.24, 95% CI = 0.96 to 1.59; IM vs EM, HR of hot flushes = 1.23, 95% CI = 1.05 to 1.43).

    CONCLUSIONS:

    CYP2D6 phenotypes of reduced enzyme activity were not associated with worse disease control but were associated with increased hot flushes, contrary to the hypothesis. The results of this study do not support using the presence or absence of hot flushes or the pharmacogenetic testing of CYP2D6 to determine whether to treat postmenopausal breast cancer patients with tamoxifen.

    Comment in

  • p22nut5
    p22nut5 Member Posts: 71
    edited May 2012

    Hi everybody. Just to give you an update. I went to see another oncologist. She trained at MD Anderson Cancer Center and taught about breast cancer there for 6 years. She was amazing. I felt like I had a private lecture about breast cancer. She told me I don't need chemo because I dont have any high risk factors even if I'm only 45. She told me I could even opt out tamoxifen. The only reason I would consider taking it is because tamoxifen would take care of micrometastasis if I have any somewhere in my body which as of today we don't have the technology of finding out about it. I'm finally at peace now that I had my final decision. NO CHEMO. Tomorrow I'm starting my tamoxifen. I heard it increases libido Surprised

    HealingDreams. Looks like we have the same diagnosis. I hope your onco comes back low also. If you have any questions just ask all this great brave people here. They are very helpful.

  • rgiuff
    rgiuff Member Posts: 1,094
    edited June 2012

    P22, so surprised to hear an Oncologist say that tamoxifen is optional with an IDC diagnosis, when the protocol is always to take antihormonals with any IDC.  What was her reasoning for why it was optional?

  • p22nut5
    p22nut5 Member Posts: 71
    edited June 2012
    rgiuff She thinks that my type of cancer everything is low risk. 1cm, no LVI, 6mm margin, slow growing, onco 12 and of course I had double mastectomy so there's no recurrence in the breast. That's why she said the only reason for me to take TMX is just in case there's metastasis somewhere in my body that we didn't know. Since I'm taking tamoxifen she does not think I also need ovarian suppression. She said even if we suppress the hormone production in my ovaries I'm still producing hormones in my other organs. And Tamoxifen blocks the action of the hormones already anyway.
  • gracebead
    gracebead Member Posts: 13
    edited June 2012

    Hi p22nut2,

    Congrats on your decision and best of luck with Tamoxifen!  I skipped chemo too and currently doing rads (BMX, but close chestwall margin), a third way through.  Will start on Tamoxifen once I'm done with rads, and my MO is against ovarian suppression too.  Wishing you the BEST, my BC twin sister!!! :)

  • Miles2Go
    Miles2Go Member Posts: 120
    edited June 2012

    Hugs, p22nut2, Good for you, getting a 2d oncologist's opinion.  I support your choice.  There's no universal "right" choice, only what is "right" for you, for now.  CMG

  • edwards750
    edwards750 Member Posts: 3,761
    edited June 2012

    I havent been on this website in months but this particular topic is really interesting to me given I had an Oncotype score of 11 which followed a lumpectomy and 33 rounds of radiation. Chemo was discussed after the first Path report and pre-Oncotype test because a micromet had shown up in the SN. Luckily for me the Onc ordered the Oncotype test. Had it not been for that test chemo would probably have been the treatment of choice. I think the Oncotype test is a godsend. Of course there are no guarantees but it has served as an invaluable tool for Oncologists in their determination of treatment. I hazard a guess a lot of women have dodged chemo because of it. My sister has BC as well(she has lobular), had a MX and because of the test she avoided chemo as well. With a score of 12 I would think chemo would not be advantageous. There are truly no right or wrong answers - we all do what we think is best for us and dont second guess ourselves.

  • p22nut5
    p22nut5 Member Posts: 71
    edited June 2012

    Thanks gracebead and miles2go. I think what matters is we feel comfortable with our decision. It may have took me a long time to make a final decision but now I know no matter what will happen in the future I know I will not look back and have regrets. I have a friend that have exactly the same diagnosis with me and she decided to have chemo. ( she had her 3rd yesterday ) I think that's what through me off. But I can't make a decision based on somebody else's decision on her own case. I'm glad I found mine that I think is best for me.

  • Belinda977
    Belinda977 Member Posts: 381
    edited June 2012

    Waiting for my results right now on the Oncotest ....The lab called me to go over cost and insurance.  I was so suprised at how expensive the test is.  

  • p22nut5
    p22nut5 Member Posts: 71
    edited June 2012

    Edwards750: Since Oncotyping came out, a lot of us saved ourselves from the se of chemo. I'm glad to have benefited from it.

    Belinda977: Goodluck on your Oncotest. 'Hope it comes out low. Your insurance does not cover the cost of oncotest? That's very expensive.

  • bevin
    bevin Member Posts: 1,902
    edited June 2012

    Belinda-  Just wanted to let you know that if your insurance does't cover the cost in full, the genomic health people who run Oncotype have a sliding scale payment option. Even with a 6 figure income, I was able to get my portion of the  payment down to 50$ total.

    They (Insurance companies) want you to use this test. Its a lot less expensive than chemo and Insurance companies know this.  Most will pay a good portion of it as it means with a low score they dont need to shell out thousands of dollars in chemo care.

    My only fear with Oncotype is they someday use it to eliminate our choice in the matter. And you will not be allowed to have chemo if you have score of X.  Right now, in the USA we the patient still have the choice.

    Good luck to you.

  • Belinda977
    Belinda977 Member Posts: 381
    edited June 2012
    Yes, thankfully insurance is covering.  Out of curiousity I asked for the cost.  I do believe I will meet my out of pocket maximum this year.  Surprised  I find out the results on Tuesday.

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