Onc. Rec No Tamox-- Anyone in a similar situation?

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I was diagnosed with invasive ductual carcinoma with tubular features in Dec. The stage could not be determined at the time.  In January, I had a bilateral mastectomy.  Final pathology showed early stage 1 cancer and that it was .5 centimeters and apparently all taken at time of biopsy--no residual cancer found.  They did discover an area with atypical lobular hyperplasia--with mastectomy it's all gone.  Dr. said because of  mast. I avoided radiation, and that chemo in my case was unnecessary.  Additionally, he stated because the tumor was so small and caught at such an early stage, he is not recommending tamoxifen as the potential side effects outweigh the potential benefits in my case.  Prior to consult, a panel at my hospital (surgeons, radiologist, and oncologists) reviewed my case and agreed tamoxifen would not be recommended.  

I feel so fortunate that this was caught so early.  I am concerned, however, that if I don't take tamoxifen I may still have a recurrence given the insidious nature of bc.     Have any of you been in the same position?  Your thoughts are appreciated.   I am 48, premenopausal, er and pr positive, her2 negative. stage 1 grade 1 tumor .5 centimeters.  Thank you!!

Comments

  • melmcbee
    melmcbee Member Posts: 1,119
    edited February 2013

    Welcome Newyear13. I dont fit into your category but I am sure someone will come around who does. It also may be helpful to post this on the stage 1 thread or IDC thread. Im glad they caught it early. Hugs

  • DiDel
    DiDel Member Posts: 1,329
    edited February 2013

    I would seek another opinion. With invasive cancer I dont understand the recommendation no matter how small the tumor

    Good luck

    Diane

  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited February 2013

    According to the 2012 NCCN breast cancer treatment guidelines for tubular and mucinous breast cancers, node negative, < 1 cm NO adjuvant therapy is recommended. Between 1 cm and 2.9 cm the guidelines say to "consider adjuvant therapy."



    Have you had the Oncotype DX test? Although it isn't part of the NCCN recommendation for our rare types of BC, if you are ER + ... You can request the test. It will tell you your chance of distant recurrence at 10 years.





    Good luck!

  • tlew
    tlew Member Posts: 128
    edited February 2013

    Hi new year, I have a similar diagnosis, but instead I had ILC. Mine was measured .5mm taken away during a stereotactic biopsy and I had bmx. I went for 2 opinions and none of them recommended tamoxifen as the risks outweighed the benefits. I think if I really wanted to be on it, they would have prescribed it. Go get a few more opinions to see what others say about your situation.

  • Abbey11
    Abbey11 Member Posts: 335
    edited February 2013

    Hi newyear.  I see this is your first post; welcome!  I hope that you find lots of help and support on these boards.  

    It makes sense to me that you are not doing radiation - there's nothing left to radiate; and no chemo also makes sense for a small, node negative, grade 1 tumor.  But, I find it unusual that you have not been encouraged to take tamoxifen.  If you look at the standard of care as defined by the NCCN guidelines for BC treatment, all with invasive BC should do endocrine therapy.  Since you're pre-menopausal, this would mean tamoxifen.  Have you met with an oncologist? Or, just your surgeon?  I would insist on having a meeting with a medical oncologist who treats a lot of breast cancer patients.  Also, did you get OncotypeDX testing?  The oncotype test looks at genetic markers on the RNA of a tumor and predicts how likely it is that the cancer will recur and how effective chemo might be.  The test is specifically for node negative, hormone positive patients and is standard of care.

    I don't know where you are, but if you had your surgery at a local hospital, you might want to travel to a hospital that has a big cancer center and have a consult with one of their oncologists. 

    Good luck to you!

  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited February 2013

    Southport... I must most respectfully and humbly disagree with you regarding the NCCN breast cancer treatment guidelines. If you look carefully... There are DIFFERENT guidelines for Tubular and Mucinous breast cancers.

  • Beesie
    Beesie Member Posts: 12,240
    edited February 2013

    According to the NCCN Guidelines, hormone therapy is NOT recommended for anyone who has an invasive tumor that is 5mm or smaller in size and no nodal involvement.  See page 72:

    http://www.nccn.com/files/cancer-guidelines/breast/index.html#/72/

    For Tubular and Colloid breast cancers, as VR has indicated, the guidelines are different.  For these cancers, hormone therapy is NOT recommended for anyone with a tumor that is smaller than 1cm in size with either no lymph node involvement or with no more than 2mm of lymph node involvement.   See page 76:

    http://www.nccn.com/files/cancer-guidelines/breast/index.html#/76/

    newyear, based on this it seems that the recommendation of your doctors is consistent with the current treatment standards. It is, as your doctor explained, a risk vs. benefit assessment. Since your risk from the breast cancer itself is so low, the benefit you'd get from Tamoxifen is also very low (a 50% reduction of a very small number is going to be a even smaller number). Even though there is only about a 1% - 3% chance of serious side effects from Tamoxifen, with such a small benefit, in your case the risks would outweigh the benefits. That's the rationale behind the recommendation and the guidelines. 

  • lemon68
    lemon68 Member Posts: 684
    edited February 2013

    I had ILC 2 mm.stage 1a. no node involvement, tubular, no chemo (too small for oncotype test) and BS and MO said tamoxifen is a MUST. I would get a 2nd opinion. I know we like to feel we are doing all we can to prevent recurrance. I am high ER PR and premenopausal.

    Good luck to you.

  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited February 2013

    Lemon... To add clarification.. Did you have tubulolobular BC? That is a mixed diagnosis? IDC with tubular features is considered "pure" tubular BC. Again, the NCCN guidelines for "pure" and "mixed" tubular are different. "Mixed" tubular and "mixed" mucinous follow the general IDC guidelines.

  • Beesie
    Beesie Member Posts: 12,240
    edited February 2013

    Lemon, I'd venture to guess that Tamoxifen was recommended to you in large part because you had ILC and a lumpectomy.  In your situation, Tamoxifen could provide a significant benefit in terms of reducing local (in the breast area) recurrence risk as well as reducing your risk of a new primary in either breast.  ILC presents a greater risk in that regard than other forms of invasive breast cancer. 

    newyear's situation is very different in that she's had a bilateral mastectomy and had tubular carcinoma (and not ILC).  So she has already cut her local recurrence risk and new primary risk to about as low as it can go - the benefit from Tamoxifen would therefore be very small.  Her situation, and her risk profile from her diagnosis, is likely quite different than yours.  And that would change the benefit vs. risk assessment when it comes to a treatment like Tamoxifen.  For you, the benefit of Tamoxifen outweighed the risk but for newyear, based on her doctor's recommendations and the treatment guidelines, it seems the risks are greater than the benefits. 

    I understand the desire to do anything possible to reduce the risk of recurrence, particularly distant recurrence, but if the treatment increases rather than reduces your overall health risk, that's when you have to take a step back and reconsider the idea of doing all you can to reduce recurrence. 

    newyear, if you are uncertain, then getting a second opinion certainly makes sense. 

  • newyear13
    newyear13 Member Posts: 30
    edited February 2013

    Thank you so much for all of the great information and opinions.   I did see a highly recommended oncologist who received his training at MD Andersen.  He did explain that given the tumor size and my decision to have a bilateral mastectomy my chance for recurrence was drastically reduced.  Still, I know I'm not immune from recurrence. He appeared convinced that my risk for getting uterine cancer outweighed the benefits I would receive by taking tamoxifen  My apologies--the tumor size was .2 centimeters, not .5 centimeters.    

    I am not affiliated with a university hospital, but I've decided to obtain a second opinion at one nearby.  Thank you again--what a wonderful support forum!  

  • Chocolaterocks
    Chocolaterocks Member Posts: 364
    edited February 2013

    Bessie,

    I have been struggling with this for 2 years now. Tomorrow is the day I go to the big city hospital. I am not taking tami because of many side effects. I have had different opinions from you must take tami, do you are ok, and do you must have your ovaries out. I have thought that with a bilateral masectomy for ILC, stage 1 grade 1, onco score of 1, 3.8mm tumor that I could live my life with exercise, supplements, healthy weight and diet and not worry.  Well we will see what they say at the big city research hospital. Bessie, I believe your interpretation of the guidelines applies to me. I value your expertise, your and VR are amazing.  Thanks so much,

    CR


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