Recommended ACT for Stage 1b

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CaptainSupport
CaptainSupport Member Posts: 8
edited September 2015 in Chemotherapy - Before, During, and After

My wife was diagnosed with stage 1b IDC. Tumor size is 1.6 (including a DCIT portion) and is strong ER+, PR+ and HER2-.

Sentinel node revealed 1 negative and a microscopic invasion in the 2nd one. MO is strongly recommending ACT chemo for 6 months and refusing to consider OncoType DX test. Treatment will be followed by 6 weeks of Radiation + Tamoxifen.

My wife is 41 and pre-menopausal with no previous history of BC in her family. MO has assesses 30-37% risk of recurrence and believes that the Chemo will reduce the risk by 12%.

Should she go with the MO's recommendation? If not, any idea how we can approach an alternative?

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  • NancyHB
    NancyHB Member Posts: 1,512
    edited March 2015

    CaptainSupport (great name, BTW),

    You're wife has the right to seek a second opinion, especially if she would like the Oncotype test and your current MO is refusing. If she wants to stick with this doctor I encourage her to demand the test. The first lesson I learned when dx'd is that I had to advocate for myself, and it helped me create the best treatment plan for my unique cancer (and every one of us is unique).

    In my case my MO was certain, based on my pathology, that chemo was a "kinda-sorta" choice. The Oncotype test told her differently and bought me AC-T. There are plenty of other members here with one or more positive nodes whose Oncotype revealed no need for chemo. It is a great tool for determine treatment based on your wife's particular cancer.

    I know there is a sense of urgency once diagnosed, but a couple of weeks to get the Oncotype results will not cause any harm. And if either of you is questioning the current treatment plan, please take a little time to research your options. Good luck and blessings to you both

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  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited March 2015

    What grade is your wife's cancer? If it's Grade 3, the MO might feel like being more aggressive. I'm not sure why MO's refusing to do an OncoType DX test, unless MO thinks that waiting for the results will be a waste of time. Or, maybe it's cost? I'm not sure how things work in BC, but my MO likes to order treatments that my insurance people are comfortable with paying for. Finally, you can always ask for a second opinion. Are there other MOs in your area who you can go to?

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  • CaptainSupport
    CaptainSupport Member Posts: 8
    edited March 2015

    Grade 2 and MO is recommending for the chemo to start within 6-8 weeks after surgery but not later than 12 weeks. So, I presume this is not that urgent. My wife had a follow up conversation with her over the phone yesterday and she still refused to order the test.

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  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited March 2015

    This doesn't sound like a good, working partnership to me.

    I know that the protocols are sometimes different in Canada than the US but I would move heaven and earth to try to get a second opinion. Your wife is going to be guided by this MO for a long time and she deserves to have someone who listens, explains and explores options.

    I wish you both the best.

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  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited March 2015


    Well, I think it may be time for a second opinion. Since there was some vascular invasion, there is always the chance that cancer cells are circulating around the body, looking for a new home. That's what chemo is for -- to treat systemic cancer. But, there are many women in your wife's position who just do hormonal therapy and radiation, and that's considered adequate.

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  • keepthefaith
    keepthefaith Member Posts: 2,156
    edited March 2015

    I'm not certain if the microscopic invasion is considered node positive, but I think the onco test is for a node negative DX. Has she been BRCA tested? As others have said, a second opinion may be helpful. The breast surgeon can also order an onco test. A lot to think about for sure. She is lucky to have you by her side! Best wishes.

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  • CaptainSupport
    CaptainSupport Member Posts: 8
    edited March 2015

    Thanks for all your insights.

    No. The Oncologist has not ordered any further tests. I made a call to the company that does the OncoType DX and they confirmed that my wife is eligible for the test and that they have all the data to back up the results for stage 1b patients. I have also looked at the latest BC treatment guideline from NCCN (2015-version 2.0) and the guideline is clearly recommending to 'consider the 21-Gene RT-PCR assay' before making any treatment decisions!

    I have already documented my findings in an email to our family doctor and also asked my wife to initiate another conversation with the MO and push for further tests prior to the chemo.

    Wish us luck! :)

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  • mdg
    mdg Member Posts: 3,571
    edited March 2015


    There is nothing wrong with getting a second opinion.  I got two opinions on everything...MO, plastic surgeons and breast surgeons.  I wanted to hear what others had to say regarding my situation before I made a decision. My insurance covered it all with no issue.

    They may also just be deciding on chemo because of age alone......I don't remember the NCCN guidelines for chemo regarding age.  You may want to check.  I would still push for the test.  More information can't hurt.

     

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  • snorkeler
    snorkeler Member Posts: 145
    edited March 2015

    Your wife's situation sounds exactly the same as mine: age 41 and premenopausal at diagnosis, IDC stage 1b, grade 2, strongly ER+ and PR+, HER2-, no family history. My MO ordered the Oncotype test which came back low risk, so no chemo was recommended for me. Otherwise I would have been given TC chemo. I went on to radiation and am now almost three years into tamoxifen.

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  • Trvler
    Trvler Member Posts: 3,159
    edited April 2015

    I am also in the second opinion camp. I would love to hear how it comes out.

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  • Meow13
    Meow13 Member Posts: 4,859
    edited April 2015

    i second the second opinion

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  • ruthbru
    ruthbru Member Posts: 57,235
    edited April 2015

    I would, for sure, get a second opinion. Probably a whole new oncologist....they are working FOR you and not the other way around. Since your wife is HER2 negative, strongly ER and PR positive, stage I, and no family history, an OncoType DX test should be one of the tools from which to make treatment recommendations. I am not a doctor and there certainly are cases where ACT would be recommended (but that usually is when someone is triple negative, so anti-hormonals aren't an option). I would want to know exactly why ACT is being recommended in her case; looking at it from the outside, using all 3 drugs seems like an overkill (I could see TC or even AC, but would question all three). You are smart to do your homework!

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  • CaptainSupport
    CaptainSupport Member Posts: 8
    edited April 2015

    Thanks, ladies.

    We finally managed to get a referral for the 2nd opinion. We've also asked the MO to submit the order for the OncoTypeDX test. We have decided not to start the chemo until after the test results are back. My wife had her surgery in the 1st week of March so I suppose we still have plenty of time to do our homework and make an educated decision.

    Thanks again.

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  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited April 2015
    I'm glad you've made progress and will be getting the info from the Oncotype to inform your decision making. My MO told me that chemo can be delayed until as many as 12 weeks after surgery if needed, so yes, you should have plenty of time to do your homework. I believe your MO can also ask that the test be expedited if necessary. Good luck to both of you.
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  • CaptainSupport
    CaptainSupport Member Posts: 8
    edited April 2015

    Ladies

    I need your help again! Just got a call from the MO's office and the MO is still refusing to submit the OncoTypeDX order until after the 2nd opinion! We have made it clear to her that we are willing to pay for the test through our own means if the insurance is not paying for it. We also found that a clinical trial for patients with similar tumor characteristics is about to start in a few weeks in our province and the government is already finalising the logistics of this pilot with local cancer centers!

    My wife told them that she wants the test done no matter what and that she's been going through a lot of stress b/c of the MO pushing her into the chemo. She also mentioned that she would hate to know that this new clinical trial could be an option once she's halfway through the chemo!

    We still have no clue why the MO is refusing the test but we are now seriously considering to change our MO. Have you had a similar experience with your MO in the past and how do you think we can find a better MO? We have not been able to get any recommendations from our local resources so far. This is really frustrating...

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  • debiann
    debiann Member Posts: 1,200
    edited April 2015

    I'm sorry your MO isn't being more sensitive in helping you through this process. If you're not being given a good explanation about the proposed treatment plan and why it is necessary, then changing MOs is reasonable.

    It is my understanding that the oncotype test is for node negative only, to determine the risk of the cancer spreading beyond the breast. A micro invasion may be small, but it shows that the cancer can and  did already leave the breast.

    Hormone therapy is going to be a very important part of your wife's treatment. Perhaps it would even be all she needs, perhaps not. Your wife is young so I'm sure that is part of the reason your MO wants to treat this aggressively. ER + tend to recur years later.

    I understand that it is very difficult to hear "The cancer is early stage HOWEVER chemo is still recommended".  It makes the disease seem so much more real and life-threatening. It took me a few weeks to accept needing chemo. I think the 12% reduction in risk of recurrance sounds pretty significant If your new MO gives the same stats I'd go with the chemo. You can also discuss the alternative chemo cocktails available, perhaps something more tolerable can be used.

    Good luck to you and your wife.

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited April 2015

    debiann - Oncotype Dx is now being used for 1-3 positive nodes, but it was not in the original test design, and has not been used for node positive patients for very long. 

     

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  • ruthbru
    ruthbru Member Posts: 57,235
    edited April 2015

    I would probably change oncologists, it doesn't seem like you will be able develop a long-term, positive working relationship with this one.

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  • CanuckMom
    CanuckMom Member Posts: 173
    edited September 2015

    Captainsupport, I realize chemo is scary. What my breast surgeon said to me is you only get one good shot at getting rid of this for good. You do not want this coming back. With a microscopic invasion in the lymph node I would want the chemo no matter what the oncotype test says. That's just my 2 cents.

    Good luck with your decision....it's so difficult at the beginning.

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