Her 2 But Not Doing Chemo

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Christianne
Christianne Member Posts: 76

Anyone out there with Her 2 +++ whose oncologist did NOT recommend chemo?  That was my situation.  My tumor was 4 mm, Oncotype score was 20.

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  • SecretCancer
    SecretCancer Member Posts: 34
    edited January 2009

    Christianne -

     I would seriously get a second (and third) opinion.  My tumor was also small (7mm).  My oncologist, who is "famous" in the breast cancer oncology circle told me in no uncertain terms (HER2 positive means you ARE getting chemo.  Period.)  Just curious...are you pre or post menepausal?

     Kim

  • jill323
    jill323 Member Posts: 412
    edited January 2009

    Christianne -

    Hi.  I was in a similar situation, but I had one doc that recommened chemo and one that did not.   The key difference was that my ER positivity is weak (only 22%) and I am PR negative.  This, and my relatively "young" age (43)  caused the one doc to recommend chemo.    It was a very difficult decision at the time, but there was something in my gut that told me to go with the doc that wanted to do chemo.   However, I talked her into a relatively "light" regimen such that I could receive the herceptin.   She was originally going to throw the book at me. 

    Interestingly, this past December, there was a big retroactive study presented at the San Antonio conference which studied tumors less than 1 cm.   It was conducted by MD Anderson.  The conclusion of this study was that any Her2 positive tumor regardless of size be "considered" for systemic treatment given higher recurrence risk stats.  I have included the link to the abstract below.

     http://www.abstracts2view.com/sabcs/view.php?nu=SABCS08L_444&terms=

    That said, there are some other mitigating factors in your case such as ER/PR positivity and the oncotype score that would indicate you are on the more "favorable" side if the stats.    Your age and menopausal status will also play a lot into this as well.

    In case you were wondering, in my case, we did not run the oncotype.  The reason why was because all the prognostics indicated that we pretty much knew the outcome  -  and that was it would be intermediate to high.   This is something that even Genomic Health (the makers of the test) confirmed for me. 

    I hope this was helpful.  But, as Kim says, if it continues to nag at you, get a second opinion and show the above study to that oncologist.   In my case, my oncologist thumped her chest about this study for weeks and told me it was a huge hit at her office among the other physicians.  It basically took small Her2 positive tumors out of "mushy middle" status.

    Jill   

  • coonie
    coonie Member Posts: 7,618
    edited January 2009

    My doctor led me to believe that chemo was normal, especially with HER2+, and then after chemo, there's Herceptin for a year. You might want to get another opinion. Just my thoughts though. Good luck to you!!

  • kimbly
    kimbly Member Posts: 398
    edited January 2009

    I was told that her2 + means chemo for sure, no questions asked. 

  • noellech
    noellech Member Posts: 86
    edited January 2009

    Christianne, My tumor was 5mm grade 1 very ER/PR+, HER2+ and negative nodes. I went ahead and did the chemo. Doctor was on the fence about it. She said about 90% survival without the chemo. But that went into the high 90s with chemo/herceptin and tamoxifen. I did it because I have 3 small children and the results from the herceptin trials are just amazing. If I were older ( I am now 42) and my children were grown I probably would have passed on it. It is a difficult and very personal decision. But I would definitely go for 2nd opinion. The more information the better. 

  • snowyday
    snowyday Member Posts: 1,478
    edited January 2009

    Earlier you wrote that you wanted to go natural but being her+, you should have chemo and herceptin, please get a second opinion, it could safe your life. I didn't want herceptin I was really afraid of the cardio problems but deciided to do it. I hate it but I'm doing it.  Chemo was a given with me, they didn't even discuss not having it.  I really hope you find and onc that will recommend it, even just herceptin.  Good luck  Christianne, by the way your name is really pretty. I'm having a grandchilld and going to mention that name to my Son and future DIL

    Have a great day and please don't wait to get this taken care of.  Hugs,

  • Christianne
    Christianne Member Posts: 76
    edited January 2009

    Kim you asked about my menopausal status.  I am "peri"--not exactly pre but not post either.  I was told that since my ER PR status was so positive that the Tamoxifen would be my best preventive measure to take.  And I am 53.

  • sandee107
    sandee107 Member Posts: 66
    edited January 2009

    My oncologist did not recommend chemo. My bc was mostly DCIS with a small amount of IDC.  The tumor was so small it all was removed in the stereotactic biopsy.  When they did the lumpectomy there was no cancer cells found.  I am highly ER+ (96%) and postmenopause so I am taking Femara.  I was concerned being Her2+ but my doctor said this is found much more in DCIS.  He said the benefit in doing chemo would be miniscule compared to the risks. Hopefully he is right. I also had 7 weeks of radiation therapy.

    Sandee

  • Hockeymom1
    Hockeymom1 Member Posts: 30
    edited January 2009

    sandee107,

    How much IDC did you have?  I'm just curious as I had a microinvasion and I've had no follow up treatment.  Actually, they did not test for Her2 as I had mostly DCIS.  My onc "assumes" I am triple negative because of my BRCA1 status but is not sure.

  • Jenniferz
    Jenniferz Member Posts: 541
    edited January 2009

    I am Her2 positive, but did not receive chemo or Herceptin because three years ago, it wasn't given for tumors < 1cm. I am nearly 3 years out, and am still cancer free, and I take Femara only. I didn't have chemo or rads either......just masteceomy.

    Jennifer

  • sandee107
    sandee107 Member Posts: 66
    edited January 2009

    Hockeymom

    I'm not sure exactly how much was IDC because my biopsy report stated that carcinoma was in 20% of the sample specimen which amounted to less than a cm.  How much of it was invasive was never stated in the biopsy.  It just said "invasive ductal carcinoma with carcinoma in situ."  There was no cancer found in the lumpectomy tissue.

    Sandee

  • BBLady
    BBLady Member Posts: 114
    edited January 2009

    Hi Christianne



    I an Her2/neu positive, no lymph node involvement and my oncologist was on the 'fence' as to whether or not I should have chemo as my lump was 4mm and I had a unilateral mastectomy. He presented my case to the local tumor board and two breast specialists at two NCI treatment centers and all recommended chemo, but no herceptin which really surprised me. I did four rounds of taxotere and cytoxan last summer and finished in August. Now that I'm pretty much recovered from the chemo, I'm glad that I did it. As my dr said it was 'just in case' some rogue cells had gotten out.



    Good luck!

    Kathy

  • Carolina59
    Carolina59 Member Posts: 232
    edited January 2009
    Hockeymom, I am surprised that your pathology did not include hormone status or HER2 status. I thought it was standard of care to test for all three now, even in very small invasive tumors. I don't think your doc should "assume" anything. It might be at a high cost to you if you are missing out on valuable tx options for early stage bc. 

    It's just my opinion, but I think you should ask to have the tissue tested, and if he/she refuses, I would definitely go for a 2nd opinion. Personally I think it's irresponsible of him/her to assume anything. It's YOUR life after all; you should be well-informed about every aspect of your particular cancer and what your options are for follow-up care.
  • bluedasher
    bluedasher Member Posts: 1,203
    edited January 2009

    I'm also surprised that the onc didn't test for receptor status.

    I haven't found anything indicating that BRCA1 status or any of the other BRCA mutations are associated with whether the cancer is hormone or HER2 postivie or negative. I looked a bit because I wondered whether my cancer might be gene related (I don't have complete faith in my family history) and figured that if I found for example that BRCA related cancers were usually HER2- then I could stop thinking about it. But I haven't seen suggestion of a relationship.

  • bluejay1
    bluejay1 Member Posts: 47
    edited February 2009

    BBLady, I am very surprised that no one offered the herceptin! Have you thought about taking it anyway? This should be offered to anyone who has her2+, I think, especially bc the side effects are so mild and any heart problems that occur are only in <3% of patients, and these are reversible (unlike the heart problems from adriamycin, which are usually permanent).

    btw,  one reason they may have recommended chemo was that you are ER-, so treatment with Tamox, etc, was not an option. 

  • Dejaboo
    Dejaboo Member Posts: 2,916
    edited February 2009

    Usually the heart Damage caused by herceptin can be reversed.  Not always though.

    I researched this because I already have a bad heart.

    It is still a wonderful drug.  But one should know that heart damaged caused by it is not always reversible.

    Pam

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