Chemo in node positive, estrogen positive patient

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NanciKay
NanciKay Member Posts: 3
edited June 2014 in Stage I Breast Cancer

I recently had a double mastectomy for what was initially thought to be DCIS.  They discovered that the cancer had spread to one lymph node with extracapsular extension measuring 2.5 mm.  I am highly estrogen and progesterone positive.  My medical team opted to do an oncotype test, which came back with a score of 6.  Based on this information, I am currently considering what would be my best treatment option after consulting with 3 different medical oncologists.  All explained to me that the standard of care in node positive patients in the US at this point is to undergo chemo therapy (although there was some disagreement as to whether the treatment would be A-C plus T or TC).  However, they also stated that estrogen positive cancer is far less suseceptible to chemotherapy than estogen negative cancer and that I would get most of my benefit from tamoxofen (and radiation).  Apparently, studies have shown that for patients who are node negative, there has been little benefit to having chemotherapy and that this might also be true of node positive.  While the standard of care in the US now is to do chemo, I was informed that this would not be a true for a patient in Europe with my profile.  

I am considering entering into a study for node positive patients with 1-3 nodes with low oncotype scores (around 25 and below - as I said I am a 6) to answer the question of whether there is a benefit to having chemotherapy.  Is there anyone out there that has agreed to participate into this study?  Has anyone who has had 1 lymphnode and a low oncotype score opted not to participate in chemotherapy.  I'd appreciate some input as I make this decision. 

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  • coraleliz
    coraleliz Member Posts: 1,523
    edited October 2011

    I opted not to do chemo. I had 2 positive nodes & an oncotype score of 4. I was told I need to weigh the benefits/risks & decide for myself. The study you mention sounds like the Rxponder trial. I did not qualify for it, I think because I had bilateral disease. I had another stage1 grade 1 on the other side. Only one side had lymph node involvement. I thought that if I did the trial I would be watched more closely & get a higher level of care. Anyway, I'm confused by you DCIS diagnosis. I just don't know enough about it. I had IDC & DCIS but my IDC was what was staged. The chemo decision was hard for me.

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  • rjbaby69
    rjbaby69 Member Posts: 349
    edited October 2011

    I opted to do the chemo.  I had 2 positive nodes of 4 and an oncotype score of 14.  I just felt with node involvement and lymphvascular invasion that I needed to futher guarentee that I did all I could do.  After chemo, I will have 6 weeks of 5 days a week radiation.  Then on to tamoxifen for 5 years.  BS and Onc have said I will be watched closely.  So far they are right.  Had basline scans the day of lumpectomy and I saw my BS almost weekly after surgery.  Now I won't see him again until my 2 month checkup.  Met with onc and determined I would do 6 rounds of TC.  Began that September 8.  I have just finished my 3rd round.  I have chemo one week, see the dr. the next week, blood work the next week, then back to chemo and repeat.  He will be scheduling scans but I don't know when yet.  Maybe not until I am done with chemo.  But I do know from others that I will see him a lot even after treatment, just to be sure that I am doing okay.  Makes me feel more assured that I am in good hands.

    I dont' know anything about the trial. Nothing has ever been said to me about any trials. I have a bus driver that is in a trial but she has a different kind of cancer. I also have a bus driver that is winning her fight against pancreatic cancer. She had the same surgeon (he is a cancer surgeon) and onc as I do. So once again, I feel like I'm in good hands.

    Best wishes to you!

    HUGS!

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  • NanciKay
    NanciKay Member Posts: 3
    edited October 2011

    Coraleliz,

    I believe it is the same study you are talking about.  Not sure why you didn't qualify.  I probably need to change my Diagnosis but I'm not sure what everything is called so I will explain.  I was diagnosed with DCIS Insitu Stage 0 until they did my MRI and my Sentinel Node biopsy.  I had one lymph node on my left that had been invasive.  They took out 3 on each side.  I was multi-centric across the breast quadrants in my left breast and had 2 spots on my right breast that showed DCIS so far.  I opted for the double mastectomy so I wouldn't have to go through this again.  When I had my 1st surgery on Aug. 24th they had to take out another lymph node on my left because it was attached to the breast but I asked them not to take out any more.  My option I know but from what I read it didn't help anyway and I would be the one suffering from the out come of taking multiple lymph nodes.  In pathology they found in a 3cm tumor and at least 2mm of it was invasive, that's how it got to my one lymph node.  They had me back in to surgery one week later to clear the margins on my left breast because it was so close and that surgery was far worse than the 1st surgery.  I know that they upgraded me then to a stage 2b and I believe I was at Grade 2?  I get so confused with all of this lingo but I will ask and update my Diagnosis accordingly.  So I'm thinking that now makes me IDC?  Maybe someone can help me with that.

    I would be at rest with your decision.  I hear the Tamoxifen does wonders and that's why I'm thinking about going in the study so no matter what I receive, Chemo or not, the chances of recurrence seem to be only 2 to 3% difference.  I just don't understand why you didn't qualify for the study?  Maybe there is something else we are missing that is necessary criteria.  Did you opt to do the radiation?   Where are you at?  I'm in Chicago and the hospital I am going to is the University of Chicago.  I know that not all of the hospitals are involved in the study.  Only 2 or 3 in  Chicago.  Hope you are feeling well.

    God Bless!

    Nanci

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  • NanciKay
    NanciKay Member Posts: 3
    edited October 2011

    rjbaby69,

    Thanks for the input.  The study is only being done at certain hospitals so maybe yours did not participate in it.  I know this is a very hard decision for me.  One part of me wants to do the study to help all of those women that get BC behind me and the other part says, What if?  I really am praying about what decision to make here.  I'm glad you are getting through this so far.  I have a girlfriend who had pancreatic cancer over 10 years ago now and is the only living survivor that we know of with that long of a term so far.  She is amazing and was a critical care nurse at Christ Hospital in Oak Lawn Illinois.  She was on top of her stuff all the time and would question everything they did and sometimes say no.  Boy to have that kind of knowledge.  Not to say she doesn't have some side effects or problems but she wakes up everyday and that is all that counts.  I will be praying for you through the rest of your chemo and radiation.  Thanks for the Hugs!

    Nanci

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