Bad news days before chemo ends.

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EmbracingToday
EmbracingToday Member Posts: 12
edited May 2018 in Chemotherapy - Before, During, and After

Hi,

I've read a lot on here but only posted few times. I need your support and help. My onc called me yesterday with bad news. Here are my details. I did the 12 weeks of taxol, and finish my 4th round of AC this week. Radiation was planned to start about 3 weeks after this. I had a bilat mast with recon in Dec 2017.

She called me yesterday and went on to explain that she was looking through my chart and pathology reports. She found a path report from late December that she says she never saw or received. {I'm ER+PR+Her2-} And, this is what I've been treated for the past 5 months. She said one of the path reports says that my tumor is actually Her2+. So, this means that I should have been receiving Hercepin along with the 12 weeks of taxol. My surgeon and my oncologist missed this particular path report. This path report was never reviewed for the past 5-6 months!! No one did anything about it!!

I'm going in first thing Monday morning to discuss with her. I'm shocked & devastated!

I'm just like WHAT? How did/can this happen? I know there's human error. But, this is my life! The studies indicate that I would have benefited from receiving Herceptin earlier, my percentage at survival would've been better!! I have 3 kids. I need every percentage in my favor, and this was taken from me. And, now I can't go back. I have so many feelings right now. I don't know what to do or think.

I'm asking for help and guidance with this situation. I don't understand what this means for me. How do I go forward? I'm so thankful that she came forward and didn't just sweep it under the rug. But, I'm devastated at this news. Do I continue with my team of caregivers? I still have so much care left. What are my rights?

Tuesday, May 15th is my last chemo. And, also my birthday. My family has a huge party planned for me that evening for my end of chemo. Such a blow, I'm just in shock that this just happened.

Please help me with any thoughts or advice.

Thank you so much.


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Comments

  • Gudrun
    Gudrun Member Posts: 140
    edited May 2018

    Hi embracing, I'm so sorry to hear your news.

    In fact, your tumor seems to be a Triple Positive. So I suggest you should seek for help in the TRIPLE POSITIVE GROUP here in this forum. It is a very active threat and those women are very knowledgable.

    Best wishes, Gudrun


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  • bluepearl
    bluepearl Member Posts: 961
    edited May 2018

    Could you re-check your pathology report as only one of them said Her+....the human error could have occurred there (hoping this is so). You should be re-tested to make absolutely sure. Herception is usually given for a year; will they still give this to you? before they were able to test for her2, women received the treatment you did and lived. I can see why your are angry...it is horrible. By path reports different on LVI and grade, so I took the two that agreed and discarded the one that didn't considering the two that agreed were from Cancer Agencies and the one that didn't was from the hospital. Hoping you get GOOD news on Monday!!! (((HUGS)))) Also...hope this helps..do a search on this title...."

    Trastuzumab after Chemotherapy Is Effective in HER2-Positive Breast Cancer


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  • bluepearl
    bluepearl Member Posts: 961
    edited May 2018

    Also, how strong was your hormonal status, especially the estrogen one? If it is greater than 50%, you are probably good to go. (((HUGS))))

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  • Shellsatthebeach
    Shellsatthebeach Member Posts: 316
    edited May 2018

    I'm so sorry to hear that they missed this the first time, but there is plenty of hope. I too was first diagnosed with Her2-. I had my chemo first as you will see listed below. I then had surgery and at that time (after they took the lump out) it was found to be Her2+. Whether they missed something or my tumor changed will never be known. I just can't waste my time worried over something I now have no power over. I am now being treated with Herceptin and Perjeta. I had two oncologist disagree on my treatment. The one from the hospital I received chemo suggested I do another 3 rounds of Taxol along with the Herceptin. My oncologist from Dana Farber said no way. The after effects of too much Taxol could be life long. I chose to follow the Dana Farber oncologist. I have been getting these treatments for around 8 months now. I feel great and I am back to work. Will this come back to haunt me? Life is a crap shoot. I could die from a number of unrelated things quicker so I just don't worry about it. I enjoy life more now than ever before. You just never know the future. I just happened to be reminded.

    I wish you luck.

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  • Denise-G
    Denise-G Member Posts: 1,777
    edited May 2018

    Oh my, I am so sorry. I would be more than furious. You have been through so much, but my advice would be to get a second opinion on your path reports ASAP from an NCI designated cancer center https://www.cancer.gov/research/nci-role/cancer-ce...

    I was able to have only 3 months of Herceptin because of heart issues and I had numerous delays because of other issues. I am still here 6.5 years later.

    Sending all my best to you!


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