"Um, this was NOT supposed to happen," My Oncologist Said.
Last updated: December 2022
I found an itchy lump in my left breast in October of 2018. It grew quickly and started to hurt. (Do NOT let anyone tell you breast cancer doesn't itch or hurt, it most certainly can!). I dismissed it as yet another fibroadenoma or cyst, as I had many, for a month. But it got bigger.
Finally getting a diagnosis
On 1/16/19, after many months of trying to get tested and diagnosed due to insurance and provider issues, I got imaging and a biopsy in 4 places and I was finally diagnosed with IDC and DCIS, triple positive ER/PR+ and HER2+ 5 cm DCIS with 1cm focal IDC masses in 3 places. There were ILC pleomorphic characteristics as well but it wasn't certain at the time. Grade 3, Ki-67 of over 30, cancer in lymph nodes both axillary and under chest wall and suspicious in supraclavicular region. Stage 2b-3 (oncologist 2b, radiation oncologist later said more like a 3)
Did 6 rounds of TCHP chemo which sucked, but it gave me a PcR, which is a complete pathologic response. It completely killed my cancer! We found this out on pathology after my double mastectomy and 6 lymph node removal with expander placement at the end of June 2019. I was declared NED (No Evidence of Disease) and went on to have 30 rounds of radiation to my left breast area just to be entirely sure we got everything.
Things seemed fine, but my tumor markers went up into the abnormal range in Dec of 2019 and I felt unwell but scans showed nothing so it was deemed a glitch. Tumor markers CA 27-29 arent very accurate but they are still an indicator. I continued my Herceptin and Perjeta targeted therapy infusions every 3 weeks till Feb of 2020 and then I was done with active treatment.
Still not feeling well despite being NED
Still was tired, feeling just not right. Soon after Covid 19 started up and I thought it was depression, and anxiety as my partner lost his production job and I was worried about catching it as everyone was, especially with immune issues continuing. I wasn't working either so dependant on UI and federal help. I also have residual issues from Taxotere chemo so I thought that was why.
I noticed around July 12 that I had a spot in my left eye vision blocking central vision. It was a grey slightly sparkling spot and I noticed it because I was typing on my phone and it was blocking letters. I thought I had detached my retina somehow as it didn't go away in a few days and didn't hurt. I also had a mild headache but thought it was allergies. After a few days, I asked my oncologist what he thought. My instinct was poking me. He told me to head to the ER right away, so I did. I got a CT scan and was admitted for two areas of brain edema, one in my occipital region at the back of my head which made sense as that is the optic region, and one in a frontal lobe area. What they didn't tell me till later that night was that there were 2 masses.
They wanted to MRI me but I had tissue expanders in, to prep for DIEP reconstruction which has a long recovery vs implants as it uses tummy fat. They have magnets in them, so I couldn't get that MRI right away. So, after a 3 day stay to get the edema down with a ton of steroids, (12 mg dexamethasone a day), we scheduled a stat exchange to implants in 2 weeks, on July 30, no DIEP, that's gone now for any option for a long time if not forever.
That was done, I got my MRI 2 days later and there were 4 masses, 2 3mm ones in occipital and temporal lobes, 1 at 1.5cm frontal lobe, and the last at nearly 2cm in the occipital lobe. Then I got a major hematoma in my right boob implant area. Had a surgery to clean it out on August 11, ONE day of recovery, and admitted for an occipital craniotomy on August 13th. All the while on 12 mg dexamethasone, which can cause problems for healing. Luckily, in my case, it didn't but a lot of other side effects had started to surface including Cushing's Syndrome and kidney issues.
Removing of the tumor
They removed the 1.9 cm tumor for pathology and I stayed 5 days, had severe ocular seizures and migrane and now the scotoma, the blind spot, was in both eyes. It had also turned graphical and scintillating. I'm a visual artist so this was and is distressing. Not a fun recovery.
The pathology finally came back PURE ILC pleomorphic but thankfully not mutated. We guess that that metastasized very early and hid but only the ILC part, oddly. Probably De novo from the start. I am still triple positive and am on the new HER2CLIMB Xeloda, Tukaysa, and Herceptin chemo. It's going well, but with some pretty crappy side effects. I am on round 3, scans 2nd-week November. I had SRS CyberKnife radiation treatment for the mets and surgical site on September 18th. No huge issues but a huge chunk of hair fell out at the main site the other day and I have been tired.
The realities of stage 4 mets
Thanks for reading if you've gotten this far; it's been a very weird experience for me. I am unique in my practice, which is a large one, there was less than 1% chance that this would happen after my complete response to chemo. Thankfully no mets anywhere below my head on restaging, but Stage 4 is hard to swallow at times. I have a significant disability right now due to the frontal lobe tumor site and 3 surgeries in 2 weeks and high dose steroids. I don't look and feel like myself at all. My adrenals are shot and I will need to go back on steroids to wean slower, I just found out too. Dexamethasone is Satan I swear.
Again, sorry for this being so long but it's a long story that got crazy the last three months. We are stronger than we think, that's for sure! And I keep picking myself back up and throwing my dark humor around mixed with inspiration. I need to stay around for my family, my friends, and my new grandson.
Keep on pushing forward, we have a lot to live for. Truly, we do.
Advanced breast cancer is an isolating and lonely disease.