Treatment for HER2 Positive Small Tumor?

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mjord1
mjord1 Member Posts: 2

I was wonderinfg and hoping that someone might have thoughts for me about treatment for HER2 positive but very small breast cancer tumor?  I had a mastectomy 1 week ago for what was originally diagnosed as complex DCIS, but the biopsy just came back as invasive, ER positive, PR negative, HER2 positive tumor along with the original DCIS.  My oncologist has told me that he won't recommend HER2 treatment (like Heceptin along with chemo) because the tumor was so small - 0.8 mm - and he doesn't know of any clinical research on treating HER2 positive tumors that are under 2 m..  This scares me to death because I've read how aggressive HER2 positive cancers can be, and the increased risk of recurrence also to other parts of the body.  Has anyone experienced this or have any thoughts?  Thank you so much.

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  • Iris_G
    Iris_G Member Posts: 50 Member
    edited November 2016 #2
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    Triple Positive Small Tumor

    Hi mjord1...My lump was small (right at 2cm), but it turned out that I was triple positive, ER+/PR+/HER2+.  My oncologist said that since it came back HER@+ he wanted me to do chemo and radiation.  I was told before my lumpectomy that my chances of it coming back were between 10/12%, but when it came back HER2+, my oncologist told me those chances went up to between 30-35% of a recurrence.  I ended up doing chemo, radiation and just had my last Herceptin treatment on 10/26.  It's you body, your choice.  Ask your doctor if it was his wife, would he suggest the same treatment course to her.

  • Double Whammy
    Double Whammy Member Posts: 2,832 Member
    edited November 2016 #3
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    I think I'd get a second opinion

    just to feel safe.  I'm confused about the size of your tumor.  Is it .8 cm (8 mm) or  point 8 mm (millimeters)?  It is indeed dinky if it is .8 mm.  Look at a ruler and see how dinky .8 mm is, that's less than 1 mm which is really really dinky.   We really should have been schooled in the metric system because it is difficult to visualize anything that small even being identifiable, but maybe that's the amount that had broken out of the duct to be officially called invasive.  I just think a second opinion is in order so you can feel assured that you're making the right choice. 

    Know that we have all been where you are right now, scared to death, and sort of in limbo.  May you get to the place where many of us are now, looking back in our rear view mirrors and recognizing that our decisions were the correct ones - and most often the ones recommended by our oncologists.  I don't think I will ever be totally confident, but with each passing year it does get easier.

    Best wishes,

    Suzanne

  • button2
    button2 Member Posts: 421
    edited November 2016 #4
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    I agree with Suzanne

    I had triple pos cancer and yes, the HER2 diagnosis is a scary one. I had a huge entwined double tumor and another two tumors in the lymph nodes so there was never any question I needed Herceptin. I credit it with saving my life (I'm at 4 years now) However, we have all heard of women with small tumors who ended up getting metastasis elsewhere in their bodies, so I would take the HER2 diagnosis very seriously. I hope I'm not scaring you, and it is very positive that you caught this early. Still, I think a second opinion is in order. If you do have to take Herceptin, you should know that it is very easy and nothing like traditional chemo. Best of luck to you!

  • kakennedy
    kakennedy Member Posts: 37
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    I had a similar diagnosis

    I had a similar diagnosis without ER positive but was HER2 positive.

     The study below (APT) is the foundation for my treatment....surely your oncologist knows of this study.  If not, you may wish to share it with him/her.  I would also recommend a second opinion.  Best wishes to you! :) Kathy

     

     

     Clinical Trial Summary – APT Trial 

    February 19, 2015 

    Title 

    Phase II study of adjuvant paclitaxel and trastuzumab (APT trial) for node-negative HER2-positive breast cancer (NCT00542451; DFCI 07-199) 

    Plain language title 

    A clinical trial evaluating treatment with chemotherapy (paclitaxel) and a HER2 receptor blocker (trastuzumab) given after breast cancer surgery for patients with HER2-positive breast cancer without cancer in the lymph nodes. 

    Note: Trastuzumab is also known as Herceptin. Paclitaxel is also known as Taxol. 

    Why was the trial done? 

    The purpose of this trial was to evaluate the effectiveness of less chemotherapy for patients with HER2-positive node-negative breast cancer with small tumors (3 centimeters or smaller). Current treatment recommendations for HER2-positive breast cancer are based on results from a large group of patients, most of whom had breast cancer in the lymph nodes and/or had larger tumors. These treatment recommendations usually include two to three chemotherapy drugs, whereas the treatment in this trial includes only one (paclitaxel). The second study drug, trastuzumab, is an antibody that targets HER2. 

    This trial was specifically trying to show that there is a group of patients with small tumors and no cancer in the lymph nodes, who may not need as much chemotherapy as those with more extensive breast cancer. 

    In other words, the trial asks, can this group of patients be effectively treated with less chemotherapy? 

    Trial Enrollment and Follow-Up 

    This clinical trial enrolled a total of 406 participants from October 2007 to September 2010. One-third of participants were under the age of 50, and 10 percent were over the age of 70. Half had tumors 1 centimeter or smaller, and half had tumors larger than 1 centimeter. 

    At the start of the clinical trial, all participants had their breast cancer surgically removed and were considered “disease-free.” Each participant continues to be checked periodically for the presence of cancer and to report any side effects of treatment. 

    Treatment and side effects 

    Everyone on the trial was prescribed the same treatment for breast cancer: weekly administration of chemotherapy (paclitaxel) and trastuzumab together for 12 weeks after breast cancer surgery. This was followed by trastuzumab alone to complete a year of treatment. Treatment with paclitaxel and trastuzumab was generally well tolerated, with few severe side effects. However, most participants had hair loss, and many reported fatigue. Other side effects reported in more than six patients included diarrhea, neuropathy (nerve damage), low blood counts, hyperglycemia (high blood sugar), allergic reaction, and liver function blood tests above the normal range. 

    Because we know that trastuzumab can affect heart function, trial participants were closely checked for this through periodic heart imaging. Two patients (0.5%) experienced congestive heart failure serious enough to cause symptoms, but both recovered after they stopped taking trastuzumab. Thirteen patients (3.2%) had a significant decline in heart function, which could be seen on heart imaging, but did not show symptoms of heart disease. Of these 13 patients, 11 were able to complete the remaining year of trastuzumab therapy, and two had to stop taking trastuzumab. 

    Preventing the return of cancer 

    These trial results were reported after half the participants had been followed for at least 4.0 years. At the time of this report, 97% were alive and free of breast cancer. Among the 12 women who had cancer detected at some time after surgery or had died without cancer, 2 were due to distant metastatic breast cancer, 2 were non-cancer deaths, and the rest were in a breast or nearby lymph node. 

    What do these results mean? 

    Here are the top three lessons learned from this clinical trial: 

    • Yes, we can give less chemotherapy to patients with relatively small tumors (less than 2-3 cm) and negative lymph nodes. Because there were a small number of patients with tumors larger than 2 cm in the study, we would conclude that paclitaxel and trastuzumab can be considered a reasonable treatment for the majority of patients with stage I HER2-positive breast cancer (tumors 2 cm or less). 

     

    • This treatment represents a more tolerable (i.e., having fewer side effects) chemotherapy regimen for women with small HER2-positive tumors.

     

     

    • The results of this trial helped to make possible a new randomized controlled clinical trial that compares the treatment you received to a newer treatment that may have even fewer side effects for patients treated in the future. 

     

    What does this mean for me? 

    At this time, we do not believe that any of the findings from this trial impact your care, and you should continue with your routine visits to your treating physician. If you have questions about the trial findings, or your care, we encourage you to speak with your treating physician. 

    Study sponsor 

    This study was led by doctors at Dana-Farber Cancer Institute, with participation from multiple hospitals around the country, and with financial support from Genentech. 

    Scientific publications about the study 

    A full report of the study has been published in the New England Journal of Medicine, volume 372, pages 134-41. The manuscript can be found at: http://www.nejm.org/doi/full/10.1056/NEJMoa1406281

    Thank 

  • Elle58
    Elle58 Member Posts: 3
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    mjord1:  Please research and

    mjord1:  Please research and/or contact Dr. Virginia Borges in Denver, CO.  GOOGLE her to read up on her.  Tops in her field.  Best wishes.

  • Kaleena
    Kaleena Member Posts: 2,088 Member
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    Second Opinion

    My mom is HER2 positive - Stage 4 (invasive ductal) -  She only agreed to Herceptin treatment against doctors advice.  18 months later, her two lung nodules and the one lymph node were gone.  The main breast tumor shrunk enough for them to be able to do a lumpectomy.   She is still continuing treatment with Herceptin.  Recently, the doctors indicated that it was good she didn't do chemo since the Herceptin alone worked.  I would seek a second opinion.

  • nm01880
    nm01880 Member Posts: 1
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    Triple Positive Tumor

    I just finished my 12 week Chemo/Herceptin treatment for my triple positive breast tumor.  Tumor size was <1 cm>, lumpectomy showed clear margins, no lymph node involvement.  Because it was HER2 positive, it required me to go through Chemo.  I breezed through Chemo without any problem, my hair did not fall out which was a surpirse because I was told all body hair would go.  I'm on maintenance now for Herceptin, ending next July.  I'm starting my radiation now for the next 6.5 weeks.   I trust my oncologist with my life.  Please get a second opinion.  

  • DanDanMan
    DanDanMan Member Posts: 1
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    Iris_G said:

    Triple Positive Small Tumor

    Hi mjord1...My lump was small (right at 2cm), but it turned out that I was triple positive, ER+/PR+/HER2+.  My oncologist said that since it came back HER@+ he wanted me to do chemo and radiation.  I was told before my lumpectomy that my chances of it coming back were between 10/12%, but when it came back HER2+, my oncologist told me those chances went up to between 30-35% of a recurrence.  I ended up doing chemo, radiation and just had my last Herceptin treatment on 10/26.  It's you body, your choice.  Ask your doctor if it was his wife, would he suggest the same treatment course to her.

    Can we connect?

    My fiance has the exact same 2mm lumpectamy with same test results and same oncologist recommendations. Would love to know how you were about to get through it all so i can pass it on to my fiance

  • Kaleena
    Kaleena Member Posts: 2,088 Member
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    Herceptin only

    my mom was diagnosed at age  80 with what you have.  it was in her left breast.   after a cat scan it was found a module in each lung.   Given the fact that my mom is independent she did not want chemo.  she would have opted for a lumpectomy but her tumor was too large.  So they put her on Herceptin only.  Within the year the liung nodules were gone and the left breast mass shrunk enough for them to do a lumpectomy.    She still is on Herceptin.    She goes every 3 weeks for her treatment.  No side effects.   She will be 86 in November.  

  • Gretta60
    Gretta60 Member Posts: 1
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    I was just diagnosed with triple positive breast cancer

    i was wondering if there is anyone out there who has the same thing but has chose not to do chemo. I like to see all sides of treatment but have a hard time finding women who have decided to forgo chemo and try other avenues

     

  • Apaugh
    Apaugh Member Posts: 850 Member
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    Gretta60 said:

    I was just diagnosed with triple positive breast cancer

    i was wondering if there is anyone out there who has the same thing but has chose not to do chemo. I like to see all sides of treatment but have a hard time finding women who have decided to forgo chemo and try other avenues

     

    Prayers going up

    This fight is not just a physical one.  We all struggle with our choices and hope we made the right one.  We do our best and know we are warriors.

    So fight, fight and know we are here for you.  We respect your choices and pray for wonderful outcomes for you. 

    Hugs,

    Annie