Hormone Therapy & or Chemo

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Tvanvossen
Tvanvossen Member Posts: 16
edited June 2014 in Stage I Breast Cancer

Hi All,

I was DX on 12/6/11 w/ DCIS, Stage 0.  Had lumpectomy with mammasite radiation on 1/3/12. Pathology report indicated Stage 1A, Grade 3, Invasive cancer, Nodes Negative, Triple positive, HER2 positive.  Tumor size removed was 3mm.  Oncology dr. today says Arimidex for 5 years, followup every 3 months.  At first appt a month ago she said, Herceptan with Taxiol, but at my appointment today (2/16/12), with my husband she changed her mind no Herceptan and No Chemo after consulting with two of her dr. friends.  Very confused!  Help!  What would you do besides get a 2nd opinion?? 

Comments

  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited February 2012

    I am bumping this up. You should do a search for "Dancetrancer" she also had a .3 mm IDC that was HER2 positive. While the NCCN breast cancer treatment guidelines do not make the recommendation for chemo and Herceptin for that small of a tumor, that doesn't mean that there shouldn't be a healthy discussion. Also might like to get a second or third opinion.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2012

    It sounds like the doctor is now taking some of your other health issues (that she may not have been fully aware of prior to your previous consultation) into consideration, and deciding that with those risk factors included, the risks of chemo and Herceptin outweigh the potential benefits in your case.

  • ruthbru
    ruthbru Member Posts: 57,235
    edited February 2012

    I would get a second opinion because of the HER2 component.

  • Tvanvossen
    Tvanvossen Member Posts: 16
    edited February 2012

    Vociousreader,

    Thanks for your input.  The dr. was using the NCCN guidelines in making her recommedation.  She printed it off for me. I agree with you there should be a healthy discussion regarding this gray zone.  Thanks again!

  • Tvanvossen
    Tvanvossen Member Posts: 16
    edited February 2012

    PatMom,

    Thanks for your input.  I do have other health concerns and perhaps that does tips the scales so to speak.  It just becomes very confusing, but I know I'm not alone with these feelings. 

    I like your status .... until they come up with cure......

    Thanks,

  • Tvanvossen
    Tvanvossen Member Posts: 16
    edited February 2012

    Ruthbru,

    Thanks Ruth for your reply,  I have a 2nd opinion on Monday. 

  • ruthbru
    ruthbru Member Posts: 57,235
    edited February 2012

    Good/ Let us know what they say.

  • ruthbru
    ruthbru Member Posts: 57,235
    edited February 2012

    Just one more thought; a friend of mine ahd a very small estrogen positive, HER2 positive tumor. Her doctor let her do Herception without chemo and then Arimidex for 5 years (which she just finished off!). So I would ask about that option if nobody else brings it up. I guess the HER2 and grade 3 thing would make me want to consider that route anyway.

  • Kay_G
    Kay_G Member Posts: 3,345
    edited February 2012

    I would definitely get a second opinion.  I think they recently changed the guidelines.  Not long ago, they did not give Herceptin to women with stage 1.  I would definitely think long and hard about it once you have a second opinion.  Herceptin is for a lot of people an easy drug with few side effects.  Not as much for taxol, but that is also not as long term a drug to take.  But Herceptin you take for a whole year.  I've been taking it since mid May and have developed mild cardiomyopathy from it.  I have no symptoms from it, and my heart may recover to where it was previously, but it may not.  The risk is about 10%, so not that rare.  And it is more likely if you already have any kind of issues like high blood pressure.  You caught the cancer very early, and chances are you have no cancer in your body any longer, so take the side effects of Taxol and Herceptin seriously because they could really give you lasting damage.  The taxol can give you neuropathy which a lot people get and then get normal again.  And then some others don't.  It's not just a preventative thing to kill any lingering cancer cells, these sometimes do more harm than good.  That being said, you have to really feel comfortable with what's right in your case, and you're obviously not there yet.  I would definitely get a second opinion.

  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited February 2012

    Kay...the 2012 NCCN breast cancer guidelines have just been posted and they have NOT changed in regard to the smallest HER2+ tumors.  The recommendation still says NO chemo or Herceptin.  There are, also, no clinical trials investigating this gray zone.  The only trial right now is for women OVER 70 with early stage HER2+ tumors and giving them just Herceptin.  Not sure if that information will be applicable to younger women when it is available.

    While some women are choosing Herceptin alone, this is NOT the standard of care.  That's why I think it is important to have a healthy discussion and perhaps several opinions.  Again, everyone needs to consider their health risks and quality of life before making the decision.

    Tvanvossen...did you do a search for "dancetrancer" yet? She posted a terrific thread on all of the research......

  • Tvanvossen
    Tvanvossen Member Posts: 16
    edited February 2012

    Voraciousreader,

    Thanks for your input.  I did not know the NCCN just posted their new 2012 guidelines.  The information regarding the over 70 trial is interesting.  I wonder why their are not any trials for people my age "52"?  Someone else mentioned they use to give Herceptin only, but do not anymore. 

    I will search for dancetrancer.  Thanks for the help. 

  • Tvanvossen
    Tvanvossen Member Posts: 16
    edited February 2012

    Hi Ruthbru,

    I had my appt. today for a 2nd opinion with MO, but my appt. was cancelled my the MO office and reschedule for a week from today. 

    You mentioned you had a friend that just did the Hercepin for a year.  Do you happen to know what stage BC she has?  Thanks for your input.

  • Tvanvossen
    Tvanvossen Member Posts: 16
    edited February 2012

    Kay1963,

    Thanks for your information and input.  I just don't want to drop the ball and make the wrong decision.  My MO cancelled today and rescheduled for next monday.  I will keep in mind everything you have said.  Thanks

  • ruthbru
    ruthbru Member Posts: 57,235
    edited February 2012

    Tvan, her diagnosis was exactly the same as what you have posted, but she was 65 years old. That was over 5 years ago, and I know that recommendations change over time but that is what she did.

  • Tvanvossen
    Tvanvossen Member Posts: 16
    edited February 2012

    Good Morning,

    I just wanted to followup on my previous posts, my MO 2nd opinion was yesterday.  The 2nd MO suggested the same treatment as the 1st MO.  The difference was the 2nd MO was more compassionate and took more time to listen and explain.  I have decided to continue taking the Arimedix and to accept that the Herceptin and Chemo therapy is not justified in my case due to the size of the tumor (3mm).  I will concentrate on my diet and exercise more.  I'm still having complications with my right breast (lumpectomy) with a hematoma which occured after surgery.  I had my breast drained 5 times and have another appt. this week.  I'm thankful that my cancer was diag. early and the rest I put in God's hands.  I feel I can't move forward without accepting.  I know some of you will understand what I mean.  Have a good day.  :-)  hugs

  • ruthbru
    ruthbru Member Posts: 57,235
    edited February 2012

    Glad you got the second opinion, it was with someone who was caring, AND that they offered the same advice. Makes it easier to go foward with a clear mind. If you want some encouragement in the exercise department, check out the 'Lets Post Our Daily Exercise' thread on the fitness forum. Best of Luck! Ruth

  • Tvanvossen
    Tvanvossen Member Posts: 16
    edited March 2012

    ruthbru,

    Thanks for your kinds words of encouragement.  I will look into the Daily exercise thread.

    Good health to you.  God Bless. Theresa

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