chemo no chemo

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marge50
marge50 Member Posts: 21

I am a 50 year old female with IDC stage 2A tumor 1.5cm 2 nodes positive. My oncotype score is a 26. i had lumpactomy and the plan was radiation and hormone therapy, Since I now received my score of a 26 my oncologist is also recommending Chemo. I am getting a second opinion on the chemo from a top 25 cancer hospital. I wanted to see if anyone has had a similar situation and if you added chemo to your treatment plan? Please any feedback is appreciated, thank you and god bless!

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  • MsPharoah
    MsPharoah Member Posts: 1,034
    edited May 2016

    Hi marge and gentle hugs to you. I think it is good to get a second opinion. Your recurrence score of 26 is intermediate so having another opinion would be helpful. I was also expecting to skip chemo, but when I got a score of 24 and my oncologist recommended chemo, I decided to do so. I had already done research and knew that I would probably have an intermediate score because I am PR-. I was also aware of the risk reduction I would get with each score, so I had already decided that if my score was 21 or lower....no chemo....above 21 chemo. Sadly, there are no guarantees that chemo will prevent a local or distant recurrence. There are also risks that come with chemo that have to be considered. I am a healthy, active person, so I felt confident that I would make it through chemo and I was right. I was able to work through surgery, chemo and radiation with minimal down time. I even had fun and was able to schedule travel. Chemo, fun? Nope, but most of us make it through just fine. My advice to you is to ask the most important questions of your 1st and 2nd opinion oncologists. If they are or are not recommending chemo, make sure they tell you why. My oncologist's reasons for recommending chemo were specific for me....1)My oncotype score was in the gray zone, but not at the bottom, 2) I would reduce my recurrence risk % from 16% to 12% 3) My ER+ cancer was more aggressive because I was PR- and my HER 2 was - but not 0, despite being node negative 4) I was healthy and could tolerate chemo 5) BC has no cure....this was my shot at a cure.

    Do not skip chemo or do chemo because it is that doctor's cookie cutter approach.

    Good luck and once you make your decision, don't look back.
    MsP

  • marge50
    marge50 Member Posts: 21
    edited May 2016

    Thank you so very much for your response.this Is very helpful.take care and God bless you!

  • ruthbru
    ruthbru Member Posts: 57,235
    edited May 2016

    Hi Marge, I was 53 when I was diagnosed. I had a lumpectomy and clear nodes, so expected that I would go right to radiation, and was very unhappy when my oncologist recommended chemo (this was in 2007 before the oncotype was being done). After a lot of soul searching and a long talk with my beloved general practitioner, I did the chemo. The reason for me doing chemo was that I had a big (4 cm) grade III tumor which came up from nowhere 6 months after a clear mammo.....so, even though it hadn't shown up in my nodes, I knew it was aggressive (there was a 50/50 chance, in my case, that micro-cells had already escaped undetected into my body)..... so I decided that I needed to do everything I could THEN to reduce the chance of ever having to go through it again. Chemo for me wasn't as bad as I had expected. I felt 'off' but worked full time, did everything that I had to do, and most of the things I wanted to do too. Remember, chemo is not the enemy; cancer is; and, if it is warranted, the chemo is working FOR you. Best of luck in making your decisions. This is the worst part. Once you have a plan in place, then you just do it and get it over with.

  • Annzie50
    Annzie50 Member Posts: 4
    edited May 2016

    Hi I too was just diagnosed, with Stage 2B lymph node positive my oncotype score hasnt been returned to me yet. I am really scared for chemo and am hoping for a low score so I can try radiation and theaphy. This is such a horrible spot to be in for all...Prayers and hugs to everyone affected with this horrible cancer...I am very positive that I will be fine, but chemo is such a horrible thing. waiting....

  • Moderators
    Moderators Member Posts: 25,912
    edited May 2016

    Annzie50 -- welcome to you as well to Breastcancer.org! We're thinking of you -- please continue to check back in and let us know how your score comes back and the treatment you decide on. We're all here for you!

    --The Mods

  • etnasgrl
    etnasgrl Member Posts: 650
    edited May 2016

    I had IDC in my right breast. 1cm. Clean margins during lumpectomy and no cancer in the lymph nodes. (I am 41)
    My Oncotype was a 27.
    My MO wanted me to do chemo based on my age. He told me that if I were older, he wouldn't push for chemo because they simply don't know if the benefits to chemo outweigh the risks when you fall in the intermediate zone.

    I did a lot of researching, soul searching, and praying. The side effects to chemo scare me and I didn't know if I could put my body through it without knowing if I would receive some benefit to it.
    In the end, I decided NOT to do chemo. I moved forward with radiation and am now on Tamoxifen.
    I don't regret my decision, as I feel it was the right one for me.
    Yes, chemo would have possibly given me a little bit more "insurance" against a recurrence.....but there are no promises when it comes to cancer. So much of this is a crap shoot. Some women go ahead with chemo and get a recurrence down the road. Some women don't do chemo and get a recurrence down the road. You just never know.

    So, I'm learning that what will be, will be. Very little is in my control. The only thing that I can do is make an educated decision, hope it's the right one, pray for peace, and move forward.

  • flowergrl63
    flowergrl63 Member Posts: 10
    edited May 2016

    My dear fellow travelors here,

    I finished radiation 4/20/16 (yay! what a couple/three weeks of burning/itchy hell!) and see my Onc first time in a couple of weeks since initial consultation a couple of months ago. I must say I am perplexed by the variation of treatments: chemo, even for low grade small cancers, E, P + as I am. Why not rad and hormone inhibitors only? I do not have an onco score; suppose I will ask for that at my visit coming up. My DCI was 5mm, no nodes stage and grade 1a, clean margins. My question is: others I read here are in the same boat (no HER) just E+ and possibly P+ but assigned chemo. Can someone please enlighten me on why? and perhaps prep me on what to ask my Onc at first f/u visit. Oh, and is it possible my tumor was/is too small to oncotype? I think I've read that here as well. Thank you friends; so relieved and happy I found this site!

    Age 63 dx DCI 5mm E+ P+ node-sentinal removed - clear

    lumpectomy and rads 21 treatments

    Upcoming disc. re: AI

  • marge50
    marge50 Member Posts: 21
    edited May 2016

    Thank you for sharing and God bless you!

  • marge50
    marge50 Member Posts: 21
    edited May 2016

    thank you and God bless you!

  • marge50
    marge50 Member Posts: 21
    edited May 2016

    thank you and God bless you! I to am waiting to make my decision. This is the hard part, I will feel some what better once I have a plan good, luck!!💟

  • mamci
    mamci Member Posts: 2
    edited May 2016

    I had the same decision to make my Oncotype score is 24. Having chemo would reduce my risk of recurrence by 4%. I decided the risks of side effects was greater than the benefit and am having radiation and will do adjuvant therapy. The hardest part is being at peace with your decision and I am hoping that if it does come back it will be many years and that there will be a cure. Good luck everyone.

  • keepthefaith
    keepthefaith Member Posts: 2,156
    edited May 2016

    marge, you may want to ask your MO about getting the mammaprint test done, also. It is similar to, but tests more genes than, the Onco-test. It gives you a high or low risk category only. I was a 21 and it was offered to me bc of my intermediate score. I didn't do it, only because I wanted to start TX asap and not wait for the results. Chemo was offered as an option, but not really pushed by my MO. I found it to be unpleasant, but manageable. I am feeling great now and have no regrets! Good luck with your decision!

  • Kokomo26
    Kokomo26 Member Posts: 64
    edited August 2016

    Hello, wondering if your MO used the Oncotype calculator to find your new lower % risk score? Mine has not mentioned it at all. And did that change the recommendation? Thank you.

    https://breast-cancer.oncotypedx.com/en-US/Professional-Invasive/Resources/ODX-Tools-RSPC.aspx

  • SoCalGrl
    SoCalGrl Member Posts: 105
    edited May 2016

    Oncotype 22 checking in here. I opted for chemo or "chemo lite" as my oncologist called it and it's done and over with. No regrets.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2016

    Hi Marge. Sorry you have to be here but you're part of a great community. I guess I could say I was in a similar place like you, that grey area of "should I do chemo or should I not". For me, my oncologist originally wanted me to do TCx4 because of one positive node (4mm). I was devastated and a mess in the office. But she mentioned the oncotype test and said it might make the decision easier for me, even though she would still recommend standard chemo treatment. I had the test ordered, and a couple weeks later I found out the score was 15. Low risk! I still went to a second opinion at a Breast cancer center, and they still recommended standard treatment, but said that skipping chemo is perfectly reasonable and might end up becoming standard of care for low risk scores after the RxPonder trial results come out. I agree with another member who mentioned the Mammaprint test. If it's low risk, you might feel much better with skipping chemo. If it's high risk, at least you knew you made the right choice.

    There are also things like Grade, LVI, extracapsular extension, and DCIS component that might affect a doctor's recommendation. I had a slow growing tumor, no LVI or extracapsular extension and 30% of my tumor was DCIS. Those things plus the oncotype helped me A LOT with my decision. Wishing you clarity and peace going forward! Hugs.

  • rrgoods
    rrgoods Member Posts: 24
    edited May 2016

    Hello Marge,

    Oncotype 21 chiming in. The first MO I saw recommended Chemo. I pointed out Chemo would only reduce my recurrence by 3%. And the MO said she sometimes recommends Chemo for patients with a Oncotype of 12 and up! I was devastated. I have IDC with lobular features measuring only 8mm. Lymph node negative. ER PR positive (very high percent) and HER2 negative. I am 61 years old (post menopausal). I hysterically contacted my surgeon and asked for another MO for a 2nd opinion. Also did a lot of research including the Oncotype calculator available to Oncologists to recalculate your recurrence rate, % of patients who chose Chemo in the assay with a Oncotype of 21 (only 30%) and asking about a mammaprint test. ! My second opnion MO said he did not recommend Chemo and explained exactly what I was going to explain to him. He knew about the Oncotype calculator but never used it. Next appointment I am going to recommend he check into it. Currently undergoing radiation (halfway through!) So far so good. MO recommends I start with Arimidex after rads. The RO also looked at my stats and concurred the dangers of Chemo far outweigh the risk in my situation.

    Although all of us are in the same boat, but everyone's case is different. Do as much research as you can and DO get a second opinion. The discussion boards here are very helpful. The people here have pointed me in the right direction. Good Luck! Keep us posted!

  • BarredOwl
    BarredOwl Member Posts: 2,433
    edited May 2016

    Dear Marge50:

    It is important to understand that your situation ("IDC stage 2A tumor 1.5cm 2 nodes positive"; age 50) is quite different from that of a person with negative nodes (node-negative).

    It is my layperson's understanding that a Recurrence Score of 26 for a node-negative patient is not associated with the same level of risk as a Recurrence Score of 26 for a node-positive patient (1 to 3 positive nodes).

    Completely different clinical trials, with different patient populations and clinical endpoints for determining risk were used to determine the relationship between Recurrence Score and risk:

    (a) Trial NSABP B-14 for node-negative

    (b) Trial SWOG-8814 for node-positive

    For example, GenomicHealth (the provider of test) web site provides different recurrence risk information for a Recurrence Score of "6" in node-negative patients versus Recurrence Score of "6" in node-positive (1-3 nodes) patients:

    Example report for NODE-NEGATIVE, RS = 6 (six)

    See the first chart entitled and text to the left of the chart: Prognosis: 10-year Risk of Distant Recurrence after 5 Years of Tam, Based on the Recurrence Score Result (from NSABP B-14)

    http://breast-cancer.oncotypedx.com/en-US/Professional-Invasive/Ordering/ReadingTheReports/Node-NegativeReport.aspx

    With Tamoxifen Alone: 10-year risk of distant recurrence is: 5% (95% CI: 3% -7%)

    Example report for NODE-POSITIVE, RS = 6 (six)

    See the first chart entitled and text to the left of the chart: 5-Year Risk of Recurrence or Mortality after 5 Years of Tam, Based on the Recurrence Score Result

    http://breast-cancer.oncotypedx.com/en-US/Professional-Invasive/Ordering/ReadingTheReports/Node-Positive1-3Report.aspx

    With Tamoxifen Alone: 5-year risk of recurrence or mortality is: 8% (9% CI: 4% - 15%)

    The magnitudes and nature of the risk are not the same.

    The node-negative information is a 10-year risk of distant recurrence (5%).

    The node-positive information is 5-year risk of recurrence or mortality (death) (8%).

    These are quite different kinds of risk estimates. Please consult your personal Oncotype report to confirm the magnitude and nature of the risks in your report.

    I am glad you are seeking a second opinion, which will provide further opportunity for discussion of the information content of your results re risk, whether other clinico-pathologic features should also be considered.

    I note that consensus guidelines from the NCCN and ASCO treat the Oncotype test for invasive disease quite differently in the node-negative setting versus the node-positive setting. This could be a point of discussion with your medical oncologist. Clinicians may be less willing to rely solely upon the recurrence score in the intermediate range with node-positive disease, and may consider additional clinico-pathologic in their advice.

    I am a layperson with no medical training, so any information above should be confirmed with your medical oncologist to ensure receipt of accurate, current, case-specific expert professional medical advice.

    Best,

    BarredOwl


  • Annzie50
    Annzie50 Member Posts: 4
    edited May 2016

    I am leaning toward no chemo for me. My onco score is 20, and I feel pretty confident radiation and therapy will be good for me. I have one kidney and don't want to chance chemo harming that. Pray for my choice! Thank

  • marge50
    marge50 Member Posts: 21
    edited May 2016

    I am so grateful for all of your opinions,prayers and kind words.I went for my second opinion and I can confirm I will be adding and starting T&C chemo 4 sessions over the next 3 months .Thank you and God bless💟

  • ruthbru
    ruthbru Member Posts: 57,235
    edited May 2016

    I am glad you are doing chemo. I really think it is the right thing to do with your diagnosis. I think making the decisions is the hardest part, then you just go in and get it done. Hang in there!

  • cookiegal
    cookiegal Member Posts: 3,296
    edited May 2016

    I was a 22 and did not do chemo with a positive node in 2009. At that time I was living on the edge, now there are lots of women with the same scores making that choice. At 26 it's really grey, but there is not great proof that chemo helps intermediates, though the case gets better the higher above 21. It comes down to a hunch. Literally you could flip a coin and the decision would be ok.

  • flowergrl63
    flowergrl63 Member Posts: 10
    edited May 2016

    Anzie50 -- consider it done friend, I am praying for you.

    flowergrl63

    dx at 63 y/o (after just retired!) 1/2016

    <1cm IDC E+ P+ neg margins

    No node involved ; lumpectomy, sentinal removed, rads 21 treatments

    Considering AI

    Peace to us all

  • rrgoods
    rrgoods Member Posts: 24
    edited May 2016

    Marge

    With a positive node, and an oncotype 26, I would have done exactly what you decided; get a 2nd opinion and go for it. You will be OK. God Bless! Everyone in the peanut gallery is rooting for you

  • marge50
    marge50 Member Posts: 21
    edited May 2016

    thanks again for the support I will start in the next week or so .I will keep you all posted.God bless you all and thanks again for your support!💟

  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2016

    Prayers for you both annzie50 and Marge. I am happy you both made a decision and have confidence that it will be a great one.

  • marge50
    marge50 Member Posts: 21
    edited June 2016

    ok ladies just finished my first chemo so far so good. Could not have prepared so well without all of your tips and journeys. Every one of your forums helped so much and will continue too. Next chemo June 30th.thanks again and God bless all of you💟💟💟

  • dtad
    dtad Member Posts: 2,323
    edited June 2016

    Hi everyone. Just another story...I was 62 at my diagnosis of Stage 1. My oncotype was 27 and both my docs and I decided on no chemo. I already have an autoimmune neuropathy and we all felt the risks were too great. I also would recommend getting the Mammoprint. I didn't because it wouldn't have changed my mind no matter what but all situations are different. Good luck to all.

  • Annzie50
    Annzie50 Member Posts: 4
    edited July 2016

    Hello, I am 51 I am stage IDC 2b two lymp nodes involved, my onco was a 20. I have had lumpectomy and on treatment 27 of

    30 for radiation and my dr said no chemo. I feel great and I feel I made the right decision for my self. Stay strong, follow your gut feelings on your own treatment and stay positive!!! Good Luck...

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