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Nov 9, 2018 05:10PM
Nov 9, 2018 05:12PM
Had 5(!) biopsies done yesterday but here's the thing (and please excuse my rant). The purpose of the biopsy was supposed to confirm if the lymph nodes are cancerous or showing activity for another reason (he used the example of a symptomless stomach flu). I had grabbed a copy of the PET/CT scan report and read it later that night, and guess what? The lymph nodes in my right axilla where he ordered the biopsy showed nothing. Only the lymph nodes near my collar bone and throughout my abdomen showed activity. I told my husband that unless I was misreading the scan report there was going to be a problem at the biopsy. Well sure enough the doctor doing my biopsy was confused too because the order specifically requested biopsy of lymph nodes in my right axilla and both the PET scan and the ultrasound showed nothing to biopsy. In fact he had to get my MO on the phone to discuss with him. The doctor also told me that the breast MRI I had back in June showed that the lymph nodes beneath my chest wall had mets, which my MO never told me. Even though they didn't show up on the newest PET scan he took a look with the ultrasound but couldn't find, so apparently they've resolved. They agreed to do a new biopsy of the mass in my breast (which has recently exploded again), for what reason I have no idea. The only justification I can think of would be to see if the pathology has changed but my MO has never mentioned that. While we were at it the doctor decided to grab a few more samples (happy happy joy joy) in case some was needed for additional testing down the line (genetic, or one of the newer trials). Better to have too much than not enough, especially with the direction that research on MBC is going.
So this is what makes me mad - my MO kept pushing back against the idea of doing the new scan until my husband insisted. When we got the results back he said "This is why I didn't want to get one, it just makes things more confusing" and I don't think he even read the damn report or he would've known that he was asking for a biopsy of something that wasn't there to be biopsied. Five biopsies is not a fun experience and I'm really mad that there was probably no reason for it, then add in the fact that we weren't even able to confirm whether or not my lymph nodes are cancerous, which was supposed to be the whole point!! Unless the report shows that the pathology of the primary tumor has changed and that's why it's growing again, I am going to be beyond furious at the waste of time and pain I went through.
He also pissed me off when I asked why I was being taken off Herceptin when it was obviously working on my liver and bones (something made my liver completely resolve since I've been off chemo and it sure wasn't diet and exercise), he said "No, it's not working" and shut down the conversation. I wanted to discuss the possibility of something like Kadcyla, which is Herceptin and chemo combined, but he just shut the conversation down completely and refused to explain his reasoning.
I'm going to give him a chance to explain himself at my follow-up, but I think it's time to start interviewing for a new oncologist.
Besides all that, hope everyone haves a great weekend. California is burning again and I hope you aren't in an affected area SB? I forget exactly where you are but these fires are massive so I hope you are safe.
IBC Stage IV de novo - presented in right breast, within days spread into left breast, skin, chest wall, metastasized into brachial plexus (lost complete use of right arm for several months), liver and throughout skeleton.
9/8/2017, IBC, Both breasts, Stage IV, metastasized to bone/liver/other, Grade 3, ER+/PR-, HER2+ (IHC)
9/26/2017 Taxol (paclitaxel)
2/6/2018 Perjeta (pertuzumab)
2/6/2018 Herceptin (trastuzumab)
11/26/2018 Taxol (paclitaxel)
1/30/2019 Whole-breast: Breast, Lymph nodes, Chest wall