33 positive lymph nodes

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  • Nirrti
    Nirrti Member Posts: 4
    edited April 2015

    Hello Christi23 (and BCO!)

    I usually just lurk and frantically search the boards every time something comes up BC related since this one heck of a journey started. BUT after reading your posts, I find the need to reply and share a bit of my "story" as well.

    What really got me was the number of positive nodes you have AFTER neoadjuvant chemothearpy. I have been looking for similar cases online and in support groups but I guess we are quite hard to find. Granted you still have twice the amount of positive lymph nodes post chemo (I "only" have 15, 14 of which have extracapsular extension >2mm), I have to say I was totally in shock after hearing the amount of lymph node involvement I had...It hit me a lot harder than finding out I had breast cancer at 30, than waking up from un-planned mastectomy (my surgeon practically promised that lumpectomy was one of the goal for doing neodjuvant chemo), from 2nd round of hospitalization in isolation after my 2nd round of chemo / Adriamycin, from getting Adriamycin / red Devil leaking out of my vein during infusion, being menopause at 30...I mean really, I put my body through all that for nothing??? After all that complications, I get disease progression (my tumor was originally 3cm, not multi focal, and only 1 positive node)?! As with a lot of things though I managed to pick myself up from despair, but it took me a bit to get there. Right now I am recovering from radiation, and trying to get into clinical trial for Everolimus (which is another drama, for another episode I suppose). And waiting for FoundationOne result---like you I am HER2- but my onco thinks I may have mutation in the gene that does not show up in the usual FISH or IHC tests for HER2.

    How are you holding up? How was the CT scan? What are your treatment plans ahead?

    I totally admire you for being a mother to three children and juggling all these treatment at the same time.

    All the best

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  • Secondchance15
    Secondchance15 Member Posts: 20
    edited July 2015

    All- I'm so glad I found this thread. Thank you all for sharing.

    Cristi - I hope you are doing well, and want to share that Ihave just experienced the same. I was diagnosed in February with Stage 2B IDC with a 4.5 cm tumor and 2 known nodes involved per MRI imaging. I immediately started neoadjuvant chemo with 6 rounds of TAC. We noticed a significant difference in the tumor clinically after the first dose. After the third treatment, ultrasound showed that the largest node had returned to normal size, and the tumor had reduced to ~ 2cm, so the regimen continued. We continued to feel a difference in the tumor (softer) throughout the remainder of the course. However, the main node did seem to be increasing in size again. Post chemo MRI on June 15 did show activity in the tumor area and known nodes, but that the tumor had shrunk to 1.5 cm. I underwent BMX on July 9 & we expected the path report to show some residual disease. However, we were shocked & devastated to get the results that the tumor area was MUCH larger than originally thought, extensive disease remained, and of the 21 nodes that were removed, 15 were positive for cancer. We're in a much more serious situation than originally thought, and have certainly had our low points this week. My oncologist is doing a lot more tests on my tumor and starting me on a new chemo regimen as soon as I can get my drains out. We're scared, but optimistic that there are still many treatment options. Next hurdle to get through will be the PET scan...hoping & praying comes back clean.

    Meow13 - thank you for sharing the story of the person you know who is celebrating her 8 year cancerversary. Certainly gives those of us in this situation some hope!

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  • Cristi23
    Cristi23 Member Posts: 23
    edited October 2015

    Hi ya'll,

    Sorry I have been away for a while as my story has continued. After my surgery and the pathology report I had gone back to my Medical oncologist and she had decided against more chemotherapy and suggested I have a CT scan to see if more cancer was detected and to my surprise I got a call and was told I was cancer free. I was beyond ecstatic but at the request of my husband I went to get a second opinion at a major cancer center in Baton Rouge, la. .. They did a petscan and the news was devastating... I got a call on a Saturday that not only did I still have cancer but that it had metastasized to my skin, a lot of lymph nodes, liver. Needless to say I went into shock. The words of that doctor were "I am sorry there is no cure for you. If you were my daughter you would be going straight to MD Anderson so that's what I did. I was on a clinical trial for 4 months that kept me stable and then I progressed. Now it is even in my lungs with the bone cancer increasing. I am now on Afinitor/exemestane with great hopes of promise :)

    I pray you guys are doing good. I will have my first scan after starting Afinitor in one month and I will come back and update.

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  • Meow13
    Meow13 Member Posts: 4,859
    edited October 2015

    Christi, I am not sure why you weren't put on AI's sooner. I have been reading that ILC with pr/er+ responds to hormone therapy. Exemestane seems more tolerable than anastrozole for me anyway. I pray you get good news.

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  • Cristi23
    Cristi23 Member Posts: 23
    edited October 2015

    I am not sure but I really wish I had been started much earlier. I pray to good results as well. Thank you :)

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