Post-BMX - DCIS to IDC HER2+ - Facing Chemotherapy/Herceptin

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BlairK
BlairK Member Posts: 399
edited June 2014 in IDC (Invasive Ductal Carcinoma)

I have been posting on the DCIS section and now am moving here because my wife's diagnosis and possible treatment options have changed.  Initially, my wife was diagnosed with DCIS in both breasts.  On October 14th, she had a double mastectomy with immediate reconstruction with gummy implants.  She also had bilateral sentinel node biopsies which were negative.  We received the final pathology report on October 27th.  The final pathology report said that the left breast was all DCIS with surgical margins of 16 mm and Stage 0.  The right breast pathology changed.  It is now Stage 1a.  It is now both DCIS and invasive ductal carcinoma IDC.  Grade 3, comedo type with necrosis, solid and cribform, ER positive, PR negative, 3 foci of IDC - 1 mm, 1 mm and 3.5 mm.  Unfortunately HER2 positive.  Surgical margin of IDC is 1.5 mm and DCIS is 2.0 mm.  The Breast Surgeon referred us to a medical oncologist and we will have a consultation on Monday.  The Breast Surgeon also said radiation was not necessary.  The Breast Surgeon mentioned that in her opinion, my wife will need to have herceptin, chemotherapy and arimidex.  I would appreciate hearing from you if you are in a situtation similar to this, have taken herceptin or are about to take herceptin, have had chemotherapy or are about to have chemotherapy, have had arimidex or are about to have arimidex or face a dilemma with radiation where the surgical margin of IDC is 1.5 mm (and 2.0 DCIS).  Thank you very much in advance for your information-sharing and advice.

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  • debbiey
    debbiey Member Posts: 46
    edited October 2011

    Hi Blair I was diagnosised with grade 3 mulifocal IDC. ER and HER2 positive with no positive nodes. I have had my chemo which wasnt great but I got though it. I  then had radiotherapy my oncologist wanted belt and braces approch due to my young age! 50.I had a surgical margin of 6.0mm. my tumors were 35.0mm and 1.1mm  I am now halfway through my course of herceptin and taking arimidex. To be hoest I am feeling fine and my hair eyebrows and eyelashes have grown back. The reconstruction however is a different story.

    Debbie  

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  • BlairK
    BlairK Member Posts: 399
    edited October 2011

    Dear debbiey - This is a great post and it makes me feel better.  You BC parameters are similar to my wife although you are Stage IIa and my wife is Stage 1a.  Your tumor size is bigger that my wife.  Your surgical margins are better than my wife.  You are the same approximate age as my wife - 50 vs 52.  Can you share the details of your chemotherapy -> (1) what protocol; (2) schedule for herceptin; (3) aridimex for 5 years?  Have you had any side effects?  You answered one valuable question for me - the chemotherapy and other related treatments comes first and radiation if necessary would come later.  Nobody else so far has addressed that.  Thanks again for your valuable post and I hope you will continue to do well and recover fully.

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  • BlairK
    BlairK Member Posts: 399
    edited November 2011

    My wife and I met with the medical oncologist today.  The recommendation is Taxotere plus Cytoxan plus Herceptin - one treatment every three weeks for four treatments.  Then continue Herceptin alone once every three weeks for a year in total (from the beginning of treatment).  After the TC is finished my wife will also have Arimidex - one pill a day for 5 years.  The consensus is that radiation will not be necessary.  The first treatment starts on November 30th which is 6.5 weeks from the surgery date of October 14th.

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  • BlairK
    BlairK Member Posts: 399
    edited November 2011

    My wife will get a second opinion on Monday and see the first oncologist again next Tuesday.

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  • Trisha-Anne
    Trisha-Anne Member Posts: 2,112
    edited November 2011

    Hi BlairK

    I finished chemo earlier in the year and have only 4 more Herceptin treatments to go.  I'm also on Arimidex, started that 8 months ago.

    I had Taxotere, but not Cytoxan, in Australia the norm seems to be FEC and Taxotere.  I had an awful time on the Taxotere, but not everyone gets the same side effects.  It will help you a lot to check in the Chemotherapy page look at the posts there.  Many women have posted their experiences.

    Herceptin has been a breeze.  Not many side effects at all.  I get a bit tired on the day of infusion and have what feel like cold sores in my nose from time to time, but that's about it.

    I'm having a hard time with Arimidex - very sore joints (it seems like every single joint in my body) and I have a lot of sleep issues.

    I'm 54 - it's 12 months since my mastectomy, and the journey continues.

    You may find your wife will need to be fitted with a port.  The 12 months of Herceptin certainly is easier with a port.  It's not too bad, it is another op, but defenitely worth it.  I have one, and have had no problems with it at all.  Some women do, but I think a majority don't.

    You will find lots of helpful information on this forum - check out all the pages - not just the chemo page.

    Don't be afraid to ask questions - there are a lot of caring wise people on this board.

    Trish 

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  • swimangel72
    swimangel72 Member Posts: 1,989
    edited November 2011

    Hi Blair - I'm certianly no expert, but I wonder if your wife really needs such strong chemo for her small tumor? My tumor was larger (9mm) but my onc felt Navelbine every two weeks for 4 months given at the same time as the Herceptin would do the same job with less damage to my body. Ihree different oncologists agreed with him. I was also put on Arimidex for 5 years, but stopped after three due to very bad arthritis and joint pain in my hips and hands. I'm happy with my decision - I'm feeling so much better and finally feel "normal".  I was first diagnosed at the age of 53 - and quit the Arimidex at 56 because it made me feel like I was 76! Good luck to your wife and all these tough decisions!

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  • BlairK
    BlairK Member Posts: 399
    edited November 2011

    Dear swimangel72 - I am not an expert either.  My wife will go Monday to get a second opinion.  I am in China on a business trip so greetings from Beijing.  My wife will also have pre-chemo pre-herceptin tests - bone density scan, MUGA scan, full body scan.  After the second opinion on Monday my wife will meet the first oncologist.  We like him, he won a "best doctor" award in our state, and his office and treatment center are 15 minutes from our home.  My wife will take the results of the second opinion to the first oncologist.  Our neighbors are a pediatrician and a cardiologist.  The cardiologist can help give advice on the heart risks.  The pediatrician recommended the oncologist for the second opinion - I was impressed by the second oncologist because she requested that my wife bring all the pathology slides.  However, her office and treatment center is 30-35 minutes away so it is a much longer drive.  I will post next week and update on what happened.  Thank you for your comments.

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  • BlairK
    BlairK Member Posts: 399
    edited November 2011

    Dear Trisha-Anne - My wife does not want a port and this was discussed with the first oncologist.  They are going to try to use her veins in the beginning with the IV.  But a port may be inevitable.  I am not familiar with FEC and with Navelbine.  The first oncologist also explained the side effects of joint and bone pains of Arimidex.

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  • BlairK
    BlairK Member Posts: 399
    edited April 2013

    It has been a long long time since i posted.  After the chemotherapy, my wife finished herceptin in January.  Her last MUGA scan was OK.  So far everything has gone very well.  I wonder how everyone that I remember from my posts is doing.

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited April 2013

    Blair - good to "see" you and do glad that your wife is doing well.  I don't know if you are interested but I did participate in a clinical trial for Her2+ patients regarding recurrence prevention.  The info is linked below.  She would need to enroll within 6 months of finishing Herceptin.  I traveled from Florida to Washington, D.C. because I had old freinds/neighbors/son there to stay with when I went up for the visits.  I am also doing well - aside from the aromatase inhibitor aches and pains, which are not bad!

    http://clinicaltrials.gov/show/NCT00524277

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