Good oncotype result but hard decision

Good oncotype result but hard decision

Comments

  • moon76
    moon76 Member Posts: 2
    edited May 2008

    My wife is 30 and was dx with bc in March.  It's a blessing that it's found early.  She did a lumpetomy last month, and the tumor was 0.9cm, Stage 1, Class 2, ER+, Node-.  Then she did the Oncotype Dx test and we got the result yesterday.  She got a very low score of 4.  This means there's only 4% recurrence with hormonal treatment according to the statisitics. 

    We have been praying for this that she wouldn't need to go thru chemo all along.  Yet still her onc recommended chemo with Cytoxan and Taxotere because of her young age, but it'll be our call.  We struggled with the decision.  She didn't want chemo, and I think the benefit of increasing the odd by around 2% is not worth a slight risk of delayed side effect of developing blood cancer (due to Cytoxan) and other side effects.

    We decided not to do chemo, but she'll need to go through 45 radiation treatments (15min each) and 5 yrs of taxmoxifen nonetheless.  At times I still have worries whether we make the better choice.  What would you do?

  • rubytuesday
    rubytuesday Member Posts: 2,248
    edited May 2008

    From what I've read, the purpose for giving young women chemo is to put them into menopause thus reducing their estrogen levels.  I would also get a second opinion at a big breast center.  I had two tumors, both tubular, one 1.2cm and one 1.6cm and my oncotype score was 11 with a 7% chance of recurrence over the next 10 years.  I did not do chemo, nor was it recommended.  For the small percentage of benefit, it doesn't seem worth it but I do believe your wife's age is playing into the oncologist's decision...it could be a CYA operation on his part.....get a second or even a third opinion.  Best wishes!

  • wishiwere
    wishiwere Member Posts: 3,793
    edited May 2008

    You didn't mention the Her2/neu status? do you know that?

    I think first, you need to ASK the first onco WHY he recommends it when the recurrence is so low.

    Then yes, a second opinion is in order for peace of mind for you both!

  • revkat
    revkat Member Posts: 763
    edited May 2008

    and to follow up on Rubytuesday, if the reason the onco is recommending chemo is to reduce estrogen levels, ask what other options might be suggested.

  • pabbie
    pabbie Member Posts: 370
    edited May 2008

    I have an onco-type score of 20. I've had 2 surgeries (lumpectomy) & am now having radiation treatments. One onc feels "ok" with no chemo, but radiation onc says "yes". I've had surgery, chemo, and radiation before for another cancer in which the cancer treatments took the wind out of my sails. (fatigue) I'm on the fence regarding chemo. Any suggestions/comments?

  • frankrause
    frankrause Member Posts: 19
    edited May 2008

    I am 57, my score was 16, I was stage 2 with negative nodes, my oncologist said no chemo, I took 30 rounds of rads. and now on Aremidex and doing great.  I am surprised her doctor said chemo, get a second opinion.

  • pabbie
    pabbie Member Posts: 370
    edited May 2008

    Frankrause, thanks for your comment.

    I'm 50, stage 2 with 2 node involvement-Oncotype 20. I'm currently at treatment #18 with radiation and more to follow. Thanks for the Arimedex advice. I'll suggest it to my onc because I am post-menopausal. I was put into premature menopause due to chemo and radiation 9 years ago; but I think this counts as menopause. It sure does feel like it. Thanks again.

  • sonrisa
    sonrisa Member Posts: 10
    edited June 2008

    Hi, I was diagnosed last year at age 39.  My tumor was 2.2 cm, stage 2A, ER+, node -.  I had a lumpectomy and radiation.  My oncotype was 10 with a 7% chance of recurrence.  My oncologist did not recommend chemotherapy for me.  It seems that your wife is in a better situation than I was so I am surprised that chemo was recommended to her.  I would definitely get a second opinion.  I hope all goes well for you all.

  • suebee92
    suebee92 Member Posts: 85
    edited June 2008

    hello!

    i was just informed my onco test came back inconclusive? no number for me,

    anyways i am 34 yrs old and my onc. recommends chemo also.

    she said my age was a huge factor, same tx as your wife. thinking of getting a second opinion

    my onc. said that being younger doesn't help with the reccurance factor. once you are dx with bc you are at a greater risk of reccurance, soo it might be chemo for myself also?

    goodluck!

    sue

  • jdg1
    jdg1 Member Posts: 608
    edited June 2008

    I was 42 at diagnosis and my Oncologist definately said chemo.  With younger woman they want to be as aggressive as possible especially if it is Hormone related.  I did not have a problem with having the chemo done once I started it.  I figure I better throw everything I have at this if I want to be around to see my Grandkids grow up and even my 8 yr old son.  I had a double mastectomy so no radiation for me.  Good luck to your wife and yourself.

    June

  • AMANN
    AMANN Member Posts: 140
    edited June 2008

    Hello, I am 43 y.o. was diagnoised at 42 y.o. about 2 months ago. I had stage IIA no nodes, HR positive. and an Onco score of 20 which gives me a 13% chance of reaccurance with hormone therapy and 6.5% chance with chemo, I am on the fence as to what way I should go. my ONcologist says it's my decision.  I am worried about the chemo because I already have some health concerns, sleep apnea, acid reflux, and blood disorder that causes slight anemia. Please can someone help me with my decision. Than you,

  • collector
    collector Member Posts: 193
    edited June 2008

    My score was 17 and both oncs I consulted with recommended the chemo.  Even with AIs and chemo, my recurrence rate will still be 5%.  One said that the upper limits for the low recurrence section of the chart will need to be adjusted downward and she expects that to happen soon.  With your other health issues, perhaps you should consult with your other doctors.  Some types of chemo treatment are not as hard on heart issues.  I don't know mush about the anemia problems since that is not an issue for me right now.

  • wallycat
    wallycat Member Posts: 3,227
    edited June 2008

    Collector, that is interesting your onco thinks it will get lowered.

    My onco thinks it will get raised.  

    I guess we don't know till we know plus add to that cancer is a crapshoot and no telling what it will do regardless of our treatment (I hate that part).

    I was 1 month shy of 50 when Dx (read sig line for dx).

    I scored 20 on the onco and I had surgeon, two oncologists, and my radiation onco consult all say that tamoxifen would give me as much benefit as chemo...and chemo carries its own set of problems/side effects.  Chemo would have given me a 2-3% benefit which all docs seemed to think was not worth doing.  My onc said over 4% benefit is a definite "do it."  ILC is also less responsive to chemo (according to some MD Anderson reports), so I opted out.

    Of course I second guess myself on and off, but hope if the monster ever comes back, there will be more in the arsenal to fight it.

    Best to all you ladies having to make this difficult decision --and to the men who are strong and stand side by side with your women and help out! 

  • collector
    collector Member Posts: 193
    edited June 2008

    Wallycat, you're right.  It's a crapshoot!  And I'm sick of playing it after only 2 months.  I did go with the T/C chemo because I read somewhere that it was a little more effective for ILC but I don't think anyone really knows.  And it will do nothing for a new primary on the other side or elsewhere.....

  • otter
    otter Member Posts: 6,099
    edited June 2008

    The break-points for low, intermediate, and high Oncotype scores are still the same as they were when the test became available: <18 = low risk; 18-30 = intermediate risk;  >30 = high risk.  What's important to understand is that those categories of low, intermediate, and high, and the cutoffs that form them, are artificial--they're just estimates.  Think about it--what's "low" risk to one person may not be "low" risk to someone else.

    The company emphasizes that the relationship between Oncotype score and risk of recurrence is a "continuous variable."  That means a score of 8 has a much lower risk of recurrence than a score of 16, even though they are both in the "low risk" category.  Similarly, the risk of recurrence with a score of 19 ("intermediate risk") is much closer to the risk with a score of 17 ("low risk") than it is to the risk with a score of 29 (also "intermediate risk").  The report includes a graph that calculates the actual percentage recurrence risk for that person's exact recurrence score.  The person's actual recurrence risk (%) is the number that's important, rather than "low", "intermediate", or "high" risk.

    The study design for the TAILORx clinical trial does use lower cutoffs when deciding what to do for women enrolled in that study.  Women with scores <11 will get hormonal therapy only; women with scores >25 will get chemotherapy and hormonal therapy; and women with scores of 11-25 will be randomly assigned to get chemotherapy plus hormonal therapy, or hormonal therapy alone.  That change in the cutoffs doesn't mean there has been agreement that the interpretation of the test results should change to those lower numbers.

    The cutoffs in the study were lowered to make sure women who had agreed to participate in the trial did not end up being under-treated, or provided therapy that was less effective than the current standard-of-care for ER+ BC.  For example, the designers did not want a woman with a score of 29--"intermediate risk"--being denied chemo because she was on the study, when both she and her onco might have agreed to chemo if she was not on the study.

    So, what that means is that a score of 12 or 14 ("low risk" for interpretation but randomized to get chemo/no chemo in the study) is no scarier now, and correlates with no greater risk of recurrence now, than it did when Oncotypte testing first became available.  The whole reason for doing the TAILORx trial is to better define the recurrence risk for mid-range scores (11-25) and the benefits of chemo for those women.  My onco said that's the group for whom there is the most uncertainty about chemo--he told me, "We just don't know."

    Here's the Genomic Health website: http://www.genomichealth.com/oncotype/about/hcp.aspx

    Here are some links to information about the TAILORx clinical trial:

    http://www.cancer.gov/cancertopics/factsheet/TAILORxQandA

    http://www.cancer.gov/clinicaltrials/ECOG-PACCT-1

    So, the bottom line is that the cutoffs haven't changed yet, but it really doesn't matter because your oncos should be using your actual "recurrence risk" numbers rather than the broad categories anyway.  Once the results from the TAILORx trial are available, things might change; but that will be awhile.

    otter 

  • IllinoisNancy
    IllinoisNancy Member Posts: 722
    edited June 2008

    My oncologist thinks the safe number will go up after the study is finalized.  I just hope they find the cure soon for all of us.

  • AMANN
    AMANN Member Posts: 140
    edited August 2008
  • sta1129
    sta1129 Member Posts: 71
    edited August 2008

    When I was diagnosed at 38 in April, my onco number was 22, er/pr +, her2 neg, 0.8 cm tumor, grade 2, no lymph nodes.

    At a result of 22, my doc thought that chemo was more risk than benefit - he is considered pretty conservative, and I had spent days psyching myself up for the dreadful news, so I was dazed with his recommendation. He just kept slowly repeating the numbers and saying he didn't think it was be enough added benefit to outweigh the risk until I could finally absorb it. He walked me carefully through his reasoning and did say that if I had been her2 pos his recommendation would have been different. 

    As so many have said, it does feel like a crapshoot. Have a clear, slow, specific conversation and find out why the rec was made, and get that second option - especially if the first one can't provide a clear, slow, specific conversation. 

  • bmwol
    bmwol Member Posts: 7
    edited August 2008

    Otter:

    I'm alittle confused.  I am 6 weeks postop bilateral mastectomy for 2 separate lesions within 7mm of one another. One was 1.5 cm, the other 1.2 cm.  No node involvement ER/PR+ HER2 _.  I am 57, diagnosed a couple months ago at 56.  They talked me into a tissue expander surgery becuse, they said, I would definitely not need chemo.  I would have waited and had only a double mast and healed first, if I thought I needed chemo.  After the surgery (during which I had a postop bleed and lost 750 ml of blood--hemoglobin went to 6, and I am still feeling crappy from that because no transfusion, theyjust gave me back my cells with a cell saver) , they spring this Onco test on me, but said, "Don't worry, you will come back negative, we know it.  You won't need chemo."  Then they forget to send the slide for testing.  Long story short, I got my results last week and my score is 32, I'm now switched from the 25 risk of recurrence to the 20% risk of recurrence with no treatment.  My docs recommend T/C for 4 tounds.  I was all ready to try to get back to work! Plus, I have a high white count, I'm worried about a lump under my armpit where the node was taken, adn this chemo doc says"Don't worry about it." He's ready to schedule me for chemo and I still feel lousy--chills, tired all the time, and a low grade fever.  I'm gong for a biopsy of the underarm "node" tomorrow.

     I'm allergic to so many things and have adverse reactions to a lot of medications.  I hardly take anything, save my chronic hive meds, which are Axid and Allegra and synthroid.  I dont' do well with cortisone or benadryl (heart races) I have global hypokinesia of the heart and an atrial septal aneurysm.  My bones are a nightmare, scoliosis, spinal stenosis, disk degenration and bone spurs.  I've had C4-5 diskectomy and I have Hashimoto's thyroiditis and uterine, bladder and rectal prolapse.  I'm terrified of taking chemo but they keep saying  I should.  The Arimidex will supposedly give me an increase in recurrence protection and I should get only a 4% increase with added chemo.  Is it worth it?  Also, they're not sure where I am in menopause.  I just stopped my periods in March but an FSH says I'm in menopause.  O course, it's not yet a year, so... and I already have osteoporosis.  So arimidex is looking like my best option because I've already had an embolic episode with ischemic colon 2 yrs ago.

     What would you do?  Can you email me at my private eddress?  It's hard for me to follow these threads and get answers.  bernadettewolff@aol.com

Categories