Would really like your opinion

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ccdh
ccdh Member Posts: 17
edited June 2014 in Managing Side Effects of Breast Cancer and Its Treatment

I got my onocotype results back and I am a 14. The tumor they romoved was 1cm. The Dr. said I am borderline for Chemo. He said that anything 1cm and under they dont suggest chemo and 1cm and over they do suggest chemo hence me being borderline. So he didnt really say if I should have it. But I would have to have Temoxifen and Radiation either way.

He did say however that they have a clinical trial... The Tailorx trial. That I could benifit from. Which is The temoxifen and 4 rounds of chemo, 1 round every 3 weeks for 12 weeks. The Dr. didnt really push this on me he just explained that The Oncotype test are ranged from 1-18 is low 18-31 is moderate and 31 and above is High BUT for this clinical trial the ranges are different 1-11 is low 11-25 is moderate and 25 and above is high. So In the first set of numbers I mentioned above I was in the Low range but with the trial Iam in the moderate range and that is the range that they are doing the study on. And also add in the factor that I was borderline with the size of the tumor.

I am confused,nervous,scared,worried. It would just be nice for some opinions from others that dont know me and also If there are any others that have done this.

Just a little back ground on me....I am 30 and was diagnosed in Nov 2008 had a lumpectomy on Dec.1st I have 2 kids 11 and 8 to who I want to be around along time for. My Mother was just diagnosed on Dec.30 and had her lumpectomy yesterday(she will have to have chemo no matter what cause her tumor was 1.8cm) My Aunt had both her breast removed back in the late 80's. I noticed at the bottom of most peoples enteries they say what stage and something about her+ her- I still have no idea what this means,lol. All I know is that My tumor was 1cm, stage 1 ( I think ) and that I am estrogen receptor and or progesterone receptor positive and nothing has spread to my lymhp nodes.....I have no idea what all this means together, it is so hard to wrap my brain around, I feel like I am getting so much information I have no where to store it, lol.

I look forward to hearing what you all have to say...Thanks so much for listening and answering!

One more thing for those of you on Temoxifen, how is it any side effects? I heard it is $130 for a 30 day supply is that true?

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  • azsunn
    azsunn Member Posts: 201
    edited January 2009

    I can't answer all of your questions as chemo was essentially a given for my situation. I did not have oncotype dx as my Dr's felt it wouldn't change the need for chemo. It did take a while to get my HER2 status back.  You might want to call your surgeon and follow up if it has been several weeks since your surgery.

    I do take Tamoxifen now, and I get it at Walmart for $9.00 for a 30 day supply.

    I hope that helps.

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  • azsunn
    azsunn Member Posts: 201
    edited January 2009

    I just wanted to clarify that $9.00 is Walmart's cash price, not my copay for insurance.  My copay for prescription drugs is higher than that so I was glad to find Tamoxifen on their reduced price list.

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  • sftfemme65
    sftfemme65 Member Posts: 790
    edited January 2009

    That is the price at Walmart without insurance.  If you have a Dillons grocery store near you, their pharmacy,  you would pay $6.00 for a 30 day supply

    Also these prices are for the generic brand.

    Pretty great I think

    Teresa

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  • leaf
    leaf Member Posts: 8,188
    edited January 2009

    Re: tamoxifen: from what I understand, they have stopped making the brand name tamoxifen (Nolvadex).

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  • AccidentalTourist
    AccidentalTourist Member Posts: 365
    edited January 2009

    This is just a different perspective from a doctor from the UK.  I had IDC 1.8cm plus 0.7cm DCIS and I was advised I do not need chemo as my tumour is small.  I raised with my oncologist that in the USA the cut off point was 1cm but he disagreed that decision on chemo should be based on size alone.  I have only had lumpectomy and radio therapy but it is early days still so I cannot tell you whether he was right or not.  With best wishes Nena

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  • ccdh
    ccdh Member Posts: 17
    edited January 2009

    Wow...only $9.00 that is great, I dont have health insurance. I must have been misinformed somewhere along the way because I have been freakin out thinking $130 a month for the next five years.

    For those of you on Temoxifen have you noticed any changes with your self so far?

    Did you also take Chemo? ......I have to give the Dr. a answer by Thursday as to if I am going to try the clinical trial or not and I am so undecided. These clinical trials are not a for sure thing, right? What would you do with these odds?

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  • ccdh
    ccdh Member Posts: 17
    edited January 2009

    What are the Her2 results for...what do they determine?

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  • ccdh
    ccdh Member Posts: 17
    edited January 2009

    I called my Dr. today and got all of my results and a better understanding.

    He said I was grade 2, stage 1, node negative, er+/pr+/her2-

    and something about my margin was 1cm of good tissue, I dont really understand that one though.

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  • Sassa
    Sassa Member Posts: 1,588
    edited January 2009

    ccdh,

    The 1 cm of good tissue means that your tumor was removed with a border (margin) of healthy tissue surrounding the tumor.  If you didn't have a clean or wide enough margin of healthy tissue, the surgeon would go back in to take more tissue out. 

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  • SoCalLisa
    SoCalLisa Member Posts: 13,961
    edited January 2009

    I am sure you will tolerate the tamoxifen..there are of course always side effects...but they were manageable for me...I would really question the chemo...more is not always better...I had severe side effects from chemo that have lasted with me now more than eight years..but I am here...There is alot of information to go through and I am sure it is confusing...how about a second opinion??

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  • Ivy
    Ivy Member Posts: 31
    edited January 2009

    ccdh, I'm sure we can all relate to your not understanding everything and having a big decision with so much new info to process. I'm glad you feel you understand things a little better now.  For me, the Oncotype score was important. I was diagnosed 9/29/08.  I got a 20.  I was afraid my onc would recommend chemo, and I was very apprehensive of the toll chemo would take on me emotionally even more than physically.  She reasoned that 20 was very close to the low range.  She did not recommend chemo, and I heartily agreed.  My tumor was small, .7cm, but Grade 2; clear margin, no lymph nodes involved, and ER+PR+HER2-.  I do not have close relatives with breast cancer as you do.  And I am 20 years older than you.  If you pray, you could think about asking God to make it clear to you after getting a second opinion.

    As for tamoxifen, my 2 side effects I notice are fine downy hair growing on my lower face (no one else has noticed it), and decreased libido.  I can live with these, as they don't cause pain or discomfort or hamper day-to-day life.  I am so glad to take tamoxifen.  I'm going to check into Wal-Mart's prices! 

    I hope you can reach a decision you have peace about.  I am sure you will. 

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  • sisterinspirit
    sisterinspirit Member Posts: 204
    edited January 2009

    ccdh,

    I would be sure that your onc has very clearly described the rate of survival and the rate of recurrence with and without the various treatment options and the side effects of each treatment so you can decide what makes the best sense for you.  Also, have they determined if your tumor is genetically related (BRAC1 gene)?  This website has a lot of great information on pathology reports and treatments that may makes things more clear.

    I would not consider the clinical trial at all until you have all of the treatment information, because i think it confuses the discussion.  The Tailor X clinical trial randomizes people in the mid range of oncotype test scores into chemo.  Some get chemo, others do not.  Cost of trial is at the expense of the patient.  The purpose of the trial is to determine if people with a mid-range oncotype score benefit from chemo.  Personally I think the trial is very important, but should not be a factor in the decision making process.

    Good luck to you as you process all this info and make decisions.  I found it got easier once the treatment began.

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