stage1 er+ her2+ choosing to not do chemo/herceptin

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u2fan7
u2fan7 Member Posts: 15
  1.  Is there anyone out there who is stage 1, er+ and her2+ who chose to do hormone therapy instead of chemo/herceptin?  My invasive focus was only 2MM and I had a masectomy so I am hoping that my chance of a recurrence is small.  I was VERY afraid of all the potential side effects of the drugs and even though I know that tamoxifen can have its share of side effects, I felt that my instincts were telling me to do the tamoxifen instead of the chemo/herceptin. I started tamoxifen on May 15 but I still feel so much uncertainty. It seems like most women I've talked to who were her2+ did the chemo but I just didn't feel I could handle it.  Is there anyone who made a similar decision?

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  • idaho
    idaho Member Posts: 1,187
    edited May 2009

    You can see my stats below- I chose not to do chemo also.  I just felt that it was not the right thing for me to do.  I wish you well- Tami    (I am taking tamox)   

  • swimangel72
    swimangel72 Member Posts: 1,989
    edited May 2009

    Tami the big difference in your pathology and Idaho's is that your tumor was Her2 negative - but of course the feelings involved in this decision are similar and important to share.

    Idaho, I'm so sorry you're worried about SEs - I was very worried and upset when I learned I needed chemo and Herceptin - but now that it's all done (remember I had "light" chemo - Navelbine - for just 4 months which didn't cause any hair loss or heart problems - and the remainder of the year on Herceptin, which caused just some tiredness and brittle nails. My heart is fine). I'm more worried about taking Arimidex for 4 more years........but I'll do whatever I can to avoid getting mets.............I'm a firm believer in fighting this beast with every weapon at my disposal now, while I'm still young enough to handle SEs. I do NOT want to revisit this nightmare in 5 years or 10 years or 15 years when I'll be much older. I think it was mentioned on another thread that even though your tumor is Her2+ you could still ask your onc to send it out for Oncotype DX which will help with this difficult decision. My tumor tissue was sent out (before the FISH report came back) and my Oncotype DX score was 22 - which meant, without treatment, I had a 14% chance of a recurrence. My original risk for getting BC was MUCH MUCH lower (m risk was so low, it was shocking when I did get bc!) I felt like I was on a "bad-luck train" so I did not want to play a game of chance with this beast at all.

    Good luck with your difficult decision!

  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2009

    U2fan7,

    What does your oncologist say about your recurrence risk?   There's a lot that goes into your recurrence risk. Age, menopausal status, other biomarkers in the cancer cells.  Everyone's cancer is individual.  You're ER positive, and that's a good thing!  Not only can you do Tamoxifen; you can do Oncotype testing, which might help you figure out if chemo makes sense or not.   If you've not done so, you should ask your doctor about it.

    I'm ER negative, sadly...  My invasive component is only a little larger than yours - multiple invasive sites between 2-4mm.  I chose chemo because Her2+ cancers are aggressive, AND because tamoxifen isn't an option for me, AND because I'm only 40.  Also, my oncologist offered it and said it wasn't a bad idea in my case... but she also said I could choose to go without. I decided to nuke the damn thing, but it's not been an easy decision. 

    Under the "HER2" thread, I posted a link to a podcast about recent MD Anderson research on recurrence risk and HER2 cancers - you might listen to that.  You can also go to the "mushy middle" thread in the IDC forum and read through lots of people's musings on this same problem.  

    Don't you wish there were a crystal ball that would tell you what your best option is?  

    Undecided

     Laura 

  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2009

    One more thing... you mentioned your mastectomy. That's an option for preventing local recurrence, but it doesn't protect against metastasis. That's what the Tamoxifen and/chemo is all about - going after those cells that might have escaped surgery.  Chemotherapy offers protection against local recurrence and distant recurrence both; whether you need more than Tamoxifen to address that risk is a discussion you should have with your oncologist.

  • sandee107
    sandee107 Member Posts: 66
    edited May 2009

    u2fan7,

    I did not do chemo and I am stage 1 ER+ HER2+.  I am one year post surgery. I had a lumpectomy,radiation, and am on Femara for 5 years.  My tumor was so small it was all removed in the original biopsy and most of it was DCIS.  When I had my lumpectomy there were no cancer cells found.  My doctor did not feel the benefit outweighed the risk although since that time Chemo and Herceptin now is mostly recommended if you are Her2 regardless of size. I am highly ER+(96%) and post-menopausal so Femara is very beneficial to me.  I am 53 and I think age and menopause status are taken into consideration as well as how high the percentage of ER+ when making your decision.  I just had my first mammogram in April and it was clear!!

    Best of luck on whatever treatment you decide on and I'm glad you were diagnosed at such an early stage.

    Sandee

  • u2fan7
    u2fan7 Member Posts: 15
    edited May 2009

     Tami, I see that you are her2negative.  I am her2+.  Do you think you would have still made the decision to not to chemo if you were her2+?

  • u2fan7
    u2fan7 Member Posts: 15
    edited May 2009

     Sandee, do you know the size in MM of the invasive cancer found from your biopsy and when you said no cancer was found when you had the lumpectomy, do you mean no invasive cells or no DCIS?

  • sandee107
    sandee107 Member Posts: 66
    edited May 2009

    U2fan7,

    The way my biopsy read was "Invasive Ductal Carcinoma with Ductal Carcinoma in Situ.  Carcinoma occupies 20% of biopsy material".  There were 8 core samples taken w/calcifications ranging in size from 4.5cm in length x 0.3cm in diameter to 1.7cm in length x 0.6cm in diameter.  there were also 10 samples without calcifications which also IDC with DCIS but those samples were said to have carcinoma in less than 1% of the total samples.  My surgeon told me the total tumor was less than 1 cm given those dimensions.  I don't know how much was IDC and how much was DCIS. The pathology on my lumpectomy stated "no residual tumor present", nothing.  They did find "Sclerosing adenosis and stromal fibrosis which are benign conditions and that was removed in the lumpectomy.  It was sent out for a second opinion to an expert in that field at  Cornell Medical Center in NY who confirmed it.  They also got another opinion on the original biopsy to check that it was indeed cancer. That was also confirmed.  It is unusual to have all tumor removed in the biopsy but there was someone else on these boards who also had that situation.   

  • JoniB
    JoniB Member Posts: 346
    edited May 2009

    u2fan7 - like Sandee, my entire invasive component was removed during the core biopsy. 

    As far as my treatment - my surgery was at Weill Cornell Medical Center in NY and my radiation at Sloan Kettering (NJ).  Both medical centers said no chemo/herceptin.  I am currently being followed up by an oncologist at Weill Cornell.  

  • flash
    flash Member Posts: 1,685
    edited May 2009

    Everyone has to make their own decisions.  That being said, all decisions need to be made using you own individual information regarding your individual situation.  Hormomal treatment is different from the HER2+ component.  Each needs to be looked at individually.  The statistics suggest that all HER2+ benefit from the Herceptin.  The problem is that statistics are made on a group, you however are an individual. Your doctor is the best person to advise you.  If you still aren't sure, go for a second opinion at a large CC or CCC center.

    I can say, Herceptin wasn't bad at all for me. Remember, it's not a chemo, it's an antigen therapy which does affect the body differently. I hope you can make a good decision with which you feel confident and comfortable. 

    Best to you all.

  • u2fan7
    u2fan7 Member Posts: 15
    edited May 2009

     Flash, didn't you have to do chemo drugs along with herceptin?

  • AlaskaAngel
    AlaskaAngel Member Posts: 1,836
    edited May 2009

    Hi,

    When I was dx'd and tx'd the results from the trastuzumab trial were not yet available so I never had it. There are some oncs out there who will do trastuzumab without chemo if you keep trying to find one. As a premenopausal middle-aged early stage IDC with some DCIS I had chemo but if I were dx'd today I would choose not to do the chemo and do the trastuzumab alone. The problem is primarily in paying for it when it is not given with chemo, which is the standard.

  • noellech
    noellech Member Posts: 86
    edited May 2009

    I did the whole thing for a 5 mm tumor, but it was grade 1 and very ER/PR positive. I am now almost done with herceptin and am on tamox. I wonder all the time whether I have done the right thing. But I have three small kids so I really did it for them. But I can't help wondering if I have taken years off my life due to heart issues and/or osteo. Early menopause from the chemo is not healthy generally.

     Knowing what I know now, and no longer paranoid about the cancer, I would not do chemo/herceptin for a 2 mm tumor - especially if it is very ER+ and you can take tamox or AI which can work as well as chemo.

    There is no right answer and there are potential consequences with both directions. You just have to decide if you can live with the uncertainty of not doing it all.

    Good luck, Noelle

  • ZOO
    ZOO Member Posts: 4
    edited May 2009

    Hi, u2fan7,

    I didn't select chemo nor herceptin. After long discussion with my doctor, I chose taking AI (Femala) with Zoladex injection. Chemo was not recommended.

    Last year, I had mastectomy because of wide spread high-grade DCIS with microinvasion in right breast when I was 37. SNB was negative. I had 3 or 4 microinvasions with a few cells, of course they were all under 1mm and ER2+/PR2+ and Her2 3+.

    Even my Her2 status and younger age, small size of IDC was the key not to call chemo. But hormonal therapy was recommended. I selected the strongest one.

    I don't know your case and my case is similar or not. Because my decision is based on my size. But I just want to tell you my case.

    Good luck,

    ZOO

  • dalycity
    dalycity Member Posts: 248
    edited May 2009

    Hi, U2fan7: My doc said he would recommend a "small dose" of chemo if my Her2 came back positive. It same back negative.  And yes, I would definitely do the dose of chemo if necessary. I had a second opinion that it was the same as the first.  Best wishes to you.

  • u2fan7
    u2fan7 Member Posts: 15
    edited May 2009

     Zoo, you said you chose an AI for your hormone therapy. But I thought AI's were only for post menapausal women. When you said you were 37 I assumed you were premenapausal.  I am 48, premenapausal and my doctor told me tamoxifen was my only choice for hormone therapy. 

  • ZOO
    ZOO Member Posts: 4
    edited May 2009

    Hi, u2fan7,

    Yes, I was premenopausal. Now, I'm postmenopausal artificially by Zoradex injection for ovarian suppression.

    AI is for postmenopausal women, and premenopausal women can use it with ovarian suppression. Tamoxifen only or tamoxifen with zoradex was also option. But considering my younger age and Her2 status, I mean aggressiveness, he recommended me AI and Zoradex combination. According him, the combination cut estrogen strongest.

    I believe there are many premenopausal women taking AI with ovarian suppression and it may be your option, too.

    Good luck,

    ZOO

  • coping
    coping Member Posts: 1
    edited June 2009

    Hi, I was diagnosed with breast cancer in Aug. 2008 at age 49; three areas of calcifications which turned out to be cancer (had to have a full mastectomy on my left breast; which now is already full reconstructed). My sentinel node they also found to have cancer, but the remaining 13 nodes were clear. I chose NOT to have chemo.  I am on tamoxifen and so far am doing great. Sometimes you just have to follow your gut instinct.  Yes, at times you will have doubts whether or not you made the right decision, but everything I have read about breast cancer and chemo especially with my situation I believe I made the right choice and I know my faith has also helped me in that decision. Have faith in your decision and like my mom tells me all the time:

    God knows what he is doing!!!

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