Struggling.. please share positive things

tuesday7

I am in treatment and while others say I'm doing well, I haven't felt it. I was diagnosed with triple negative IDC in my left breast at 38 this year. Multi-focal, 2 tumors - 1.6 cm and 5 mm. They said node negative but then later my second opinion team, NCI, saw the first place biopsied the wrong node so I had to do it again.. 1 node positive and up to stage 2A.

I started taxol, carboplatin, and keytruda at the end of April.

My port got infected after round 2. I was in the hospital for 2 weeks on intense IV antibiotics and they took it out and put in a PICC for another week of home antibiotics. I lasted 3 days before the PICC got a DVT (while on blood thinners!) and was back in the hospital for 8 days while they finished the course and put in a new port. Everyone kept saying I got my bad luck out of the way hopefully.

I did 8 rounds of TC before my check in ultrasound which showed no significant change and the tumors maintaining bloodflow. Mixed opinions on what to do with that information. I got the 9th round of TC while the oncologist and pharmacist began the plan to jump me ahead to AC early.

I've now done 2 rounds of DD (2 week interval) AC. I feel like hell.

I'm anemic but not enough for the oncologist to consider it worth doing anything about.. it drops lower every time I'm in and I need fluids so my BP and HR don't overwork.

My port is uncomfortable still after 3-4 months and my IR team is concerned how long it'll last because it could be irritating and narrowing my vein and more likely to erode out of my chest because of my small size.

I barely leave the house except for short walks because I don't want an infection of any type again.

It's like medical PTSD at this point, terrified of every off feeling. And EVERYTHING feels off.

I went into this knowing I have anxiety disorder and a medical history of reacting poorly to drugs in general. I'm talking a doctor gives me something for migraines, etc something normal.. and even listens to my history, and give me "child" doses of things with the least side effects they know and I'll still end up throwing up for hours or something strange and the doctors are like "wow, never seen that before." That's me. So going into chemo? I did all my research, I tried to prep for every side effect I could, I asked questions, checked with the oncologist, the pharmacist, I inquire about studies because I want to know how this all works and what's the thought process.. my anxiety is managed better when someone explains the various possibilities and how they got to a conclusion.

But my previously nice oncologist is absolutely sick of me and not hiding it. She thinks me wanting to understand or being scared of things is some kind of affront to her medical knowledge.

I got a 99.6 degree fever after my first AC. I was terrified. Everything everyone warns you about on chemo is fever. I called the after hours line and got my oncologist - she was dismissive and rude and just said "that's not a fever." But for ME - individually, as a person and not cancer patient #2,005 - yes, it absolutely is. And if 100.4 is the go-to-the-ER number, well, I would want to avoid that if I could! But didn't matter, no explanation, just "not a fever." I do all my own research and find flu-like syndrome with the Neulasta shot includes low grade fever. The nurses I talked to after were like, oh yes, why wouldn't she tell you that? Why indeed.. that would have saved me staying up allllll night taking my temperature every hour afraid I was going to die.

Plus I am now seeing a neuro-oncologist because my hands have been on-off red, burning, dripping sweat, and the burning started going up my arms then receding. They wonder if the Keytruda is messing with my nerves. Which it's already causing some weird rash across my stomach that the oncology dermatologist said is "not the usual presentation" of keytruda rash and wants to biopsy when it comes back, because it keeps coming back. It started like mosquito bites that don't itch at all, they'd be sporadic spread out red spots, raise up, sometimes look like pimples, then flatten and take forever to fade away. Now it jumps right to pimple breakout phase and a bit angrier before flattening and taking even longer.

I'm scared of trying to struggle through two more rounds of this. Scared of Keytruda attacking things it shouldn't. Scared my oncologist hates me so much she's stopped trying. Scared it won't work anyway.

Scared of surgery because I don't have a freaking plan yet?! The idea was for chemo to shrink things so a lumpectomy wouldn't mangle my 32C cups because I don't have a lot of "fill in" to work with. My genetic test was lost in transit so I didn't know I had a PALB2 mutation until well into treatment. I feel like I'm lacking in medical advisement. Or at least consist advisement?
Breast surgeons are ok with lumpectomy.
Radiation oncologist suggests lumpectomy for quality of life - reduce lymphedema risk and maintain natural sensation. Says risks for PALB2 are the same between 6 month scans and mastectomy.
Plastic surgeons are mixed on if I could have a halfway decent looking boob with a lumpectomy and radiation because of lack of donor tissue available. Mastectomy would need radiation too anyway but I have nothing for a flap (and don't want the recovery or scars) and DTI vs expanders are a split debate. Sensation is its own complication with someone with microsurgery skills for nerve grafting.

I have no idea how to make big, life altering decisions much less on "chemo brain" afraid of dying constantly. I turned 39 during this.. I used to kickbox, model nude for art gallery exhibits, date…

moderators

Hi @tuesday7, and welcme to Breastcancer.org! You’ve been through an incredible amount in such a short time, and it makes sense that you’re feeling exhausted and overwhelmed. We hope some members will stop by and share some positive experiences, especially those who have been through difficult treatment and found brighter days on the other side.

You may also find it helpful to explore some of our other discussions, such as Triple-Negative Breast Cancer, or Young With Breast Cancer, where you can connect with members who may have faced some of the same treatment decisions and challenges you’re dealing with right now.

We’re glad you’re here, and we're here for you.

The Mods

piperkay

hi @tuesday7 , I am so sorry to hear all that you have been experiencing and wish that there were any easy answers for you. The most hopeful - and hopefully helpful - thing I can say to you is you're still here now, so the journey, while probably long and uncertain, is far from over. My triple negative disgnosis was just under 8 years ago and every day I get farther away from that date, the better I feel. Keep an eye out for the small positives, especially this early on. The bigger ones will come. Just take it one day, one step, one breath at a time. You'll get there. 🤗

tribblesmom

Hi there- I’m so sorry that you’re here and struggling. I am about one year out from having had my lumpectomy for TNBC. I don’t have much in common with your situation, I’m much older and had TC chemo followed by radiation. But I will share that I too, often react to drugs with crazy rashes, hives, and skin reactions that it seems like no one else gets. I also did have one trip to the ER during chemo when I hit the magic fever number of 100.4. I ended up getting every test under the sun and then sent back home when they couldn’t find any infection. Cancer treatment is such a slog and there are so many things to worry and wonder about. It is not a surprise you ask lots of questions- irritating or not, it is your doctor’s job to explain. I hope the rest of the treatment goes easier on you. You will get through it and get to feeling yourself again, hang in there. 🩷