u/You-bettah-dont

This an update on my earlier post about absolutely insane changes to my treatment plan. Basically: stopping treatment after 3 rounds of DC, going straight to surgery for a lumpectomy and node investigation instead of rad mast plus full dissection… because my MO was worried that I wasn’t going to be able to handle further chemo- with zero explanation. Mind you, I’m Stage III with node necrosis.

Met today with my clinical gp oncologist (it’s a Nova Scotia thing) and decided to be a screeching wheel (the time for being squeaky is over when my survival is on the table).

The reasoning behind it all? I’m tired.

Apparently, I’m spending too much time in bed/recliner.

Zero clinical reasoning other than my exhaustion (apparently it’s a general metric for cancer, and absolutely not the most important one- ie: chemo itself tryna kill you). My liver has normalized, my blood work looks GREAT other than a little anemia. I’m finally able to get of the steroids!

I basically refused because, to me, this was an unreasonable and unacceptable deviation from the standard of care- especially for TNBC! I DON’T CARE that I’m exhausted (I’ve been living with mild to moderate CFS for nearly 20 years, plus I’m menopausal, AND it’s cold in Canada, why wouldn’t I prefer to be tucked in at home while going through chemo?!).

I was really up front with her- I explained that I was extremely distrustful of the change in plans given that Nova Scotia has the very worst survival rates to begin with (You can’t even get the data for specific types of breast cancer- which matters for us TNBCers!)

I’m staying the course. I stood up for myself and said I don’t want to die because I’m tired. I told her I do NOT agree to the change in plans. I want to do everything I can (even if it means I have to go on walks… in public… ewww….). I’m okay with being miserable for a few more months of chemo if my body can handle it. I know stuff could still change, but scrapping the whole thing was not somehting I am willing to do. It’s bad medicine.

I also said I wanted a second surgical opinion- someone else to lay eyes on my entire chart/imaging etc.. and she’s referring me to another breast surgeon who offers reconstruction at time of surgery (so long as I’m a good candidate obviously with radiation coming).

Not only that- but that new lump I found? The one that wasn’t on any of my initial screenings? She didn’t dismiss it like the surgeon and the other gp oncologist did. She even said I was smart for marking where it was in pen with a big x (and circled my biopsy scars to prove it wasn’t anywhere near it). Not only that, she felt it and agreed it was concerning- I’m getting another mammo and ultrasound.

So YEAH (I’m making the same smug face my 14 year old does when she gets her way).

ADVOCATE. FOR. YOURSELF.

ADVOCATE. ADVOCATE. ADVOCATE.

And then advocate some more if you need to.

TNBC may be bitch, but I am fully prepared to be Satan incarnate if it means staying alive.

I seriously can’t even think about what my outcome would be had I just gone with the revised plan instead of questioning it.

Like I told all my kids every day I dropped them off at school “Kick ass. Don’t bite your friends. And most importantly: don’t take shit from anyone.”

Big hugs to all of you out there tonight xoxoxo S

Happy Victoria Day!

Throwing this out here to see if this seems as suss as I think it does or am I just being an ass. Sorry in advance for a long ass post.

Dx earlier this year with Stage III Grade III 3x5ish cm tumour plus several angry lymph nodes.

Original plan: Keytruda, Lapelga (Neulasta), 4 rounds DC chemo followed by 4 rounds AC in 21 day cycles, then followed by mastectomy and complete dissection of nodes.

hahaha original plans hahaha.

Liver decides to be dramatic after my first round of chemo, but pretty much back to normal now (yay!). DC chemo has been rough AF with an unreasonable amount of weakness and fatigue, but my blood work looks great all considering (anything out of normal now is juuuust higher or lower than normal). I also had a complete existential crisis courtesy of the massive amounts of steroids and I think I made a mistake of letting them know about that.

Met with my surgeon last week and she asked “would you be okay with going into surgery tomorrow?” and I was like WUT?

Basically, my main oncologist is worried that I won’t tolerate the AC part of chemo because my side effects- the worst being my liver (back to normal now). She couldn’t explain the reasoning behind this because she’s “just a general surgeon”. On top of this, they downgraded the surgery to a lumpectomy and sentinel node(s) removal and using the dye to check for more involvement.

YES my original tumour SEEMS to be responding beautifully to the DC/keytruda- the original sites are no longer palpable, however now that the majority of the inflammation has gone down, I can now feel some palpable weirdness near the apex of my breast tissue below my collar bone and nearish to the armpit.

This area would be missed on a mammogram and they did not ultrasound it (though I did have a CT, but that was to check for distant mets in my liver- during which they completely missed a titanium clip near my diaphragm from my tubal ligation in 2014 which has been on walkabout in my abdomen for the last 8 years.

Here’s what is freaking me out a little bit:

The surgeon ADMITTED that she cannot discern between diseased flesh and healthy, non cancerous tissue by sight. The surgery would be based on the original markers they put in during the biopsies- neither of which are anywhere near this area of concern.

Aaaand they will NOT be doing any scans (not even ultrasound)- to gauge the physical response I’ve had. I get not wanting to do radiologic scans because: radiation. But an ultrasound to plot where the lumpectomy should be performed (or how large the lumpectomy should be) or to investigate this other area of concern…. I said- if you can’t see the difference, what happens when the pathology comes back that you needed bigger margins? Well, we’ll just go back in. Would additional scans help you plot your surgery? To which she replied “the data doesn’t support additional scans” (the data being everyone with breast cancer in general, not my specific case).

So, basically, let’s go in blindly where you had the tumour (fine) and the lymph nodes (cool) but ignore this other area (wtf). And let’s do this without completing your chemo. And we can just keep going back in and cutting (blindly apparently) until we think we’ve gotten it.

Here’s the thing: I am not a fucking idiot. I’m married to a doctor, I was a mortician- which involved just enough medical training to understand the broad strokes of things that kill you. I also know that ANY surgery carries risks: not the least being opportunistic infections when we’re already dealing with an immune system that has left the building.

Oh! And when I said I’d like a second opinion, they practically choked on their coffee like I was insane to ask for it.

It’s no wonder Nova Scotia has the literal WORST breast cancer survival rates in Canada.

Am I being crazy? Is it chemo brain that’s preventing me from seeing the logic of their plan? Have any of you with Stage !!! (typo stays) had your MOs skip AC and go straight to a vastly downgraded surgical plan? AITA?

I mean I know I’m completely nuts, but I’m nuts in the ‘hold my beer’ kind of way- NOT the I don’t trust medicine pass me the ivermectin kind of way.

S3G3 TNBCer here:

ASK FOR EXTRA FLUIDS DURING CHEMO (Ok’d of course by your MO)

So, yesterday was infusion 3 of docetaxol, carboplatin, and infusion 2 of keytruda (juries out on wether or not keytruda is tryna kill me). Round 1 took out my liver.

Round two, MO skipped the keytruda, but I still begged for a bag of saline because I’d been having heart palpitations, muscle twitiches, and my urine had been dark regardless of being meticulous about hydration (Kidney function was stone cold normal on tests) but I managed to get an extra 500ml of NACL. If I could compare 1 and 2, it was night and day with how my body handled everything. I felt 1000% better with no keytruda and the 500ml extra hydration. No sore throat/mouth, no fevers, exhaustion cut by 50%. My taste buds were normal!!!!! No bloody noses. It was wild the difference I felt but chalked it up to skipping the keytruda.

Third time (yesterday), we restarted the keytruda but dropped the DC 20% and I asked for a full 1000ml bag.

Woke up today and I feel GREAT (well, still pukey and physically exhausted but salt water isn’t gonna fix that). Made my ER doc husband do some doctor research on it- turns out that it’s being used more and more as an adjuct during chemo and it doesn’t flush out the chemo (which I mused about before bed last night). Studies are showing it actually acts to protect many organs from the toxic effects of chemo across MANY different cancers (though it’s contraindicated with a few specific drugs- none that I’ve come across in my research into Breast Cancer).

I’m not talking about IV vitamin bags or the stuff you get at those IV med spa clinics- I’m talking about plain old fashioned saline water NaCl.

Here’s one link of many that shows how it protects the kidneys for those of us on the car-platin drugs. I hope this helps! https://pmc.ncbi.nlm.nih.gov/articles/PMC10836314/#:\~:text=Prehydration%20was%20defined%20as%20hydration,NaCl%200.45%25%20as%20hydration%20fluid.&text=The%20European%20Society%20of%20Clinical,about%20the%20optimal%20hydration%20scheme.&text=A%20hydration%20scheme%20should%20consist,is%20shown%20in%20Table%201.

So, in a past life I was a graphic designer and even had a marketing company but I ended up completely burned out and hating people hahahah. HOWEVER- I’m thinking about starting up the graphic art piece again (privately) and making some designs that I’d offer for free so folks can use what they like for t-shirts, mugs, whatever on their own.

I’ve been thinking about TNBC because, duh. Having a teenage daughter- I realized breast cancer comes across as a little cliquey but in not necessarily bad way but also in necessary way (ie: sticking to our own when it comes to treatment, some side effects, etc..). But also cliquey in that there are the doom and gloomers, the toxic positives, the warrior queens, the social media types… I’ve also thought about the things people say to us that make us want to throat punch them. Kind of an anti-pink ribbon brigade.

I don’t know if it’s just me, but I also feel like if we were all in breast cancer high school, the TNBCers would be the kids dressed all in black with mohawks and spiked jewelry smoking out back and flipping birds at the status quo (okay, that WAS me in high school, so I might just have a personal bias lol).

I would love some of your thoughts on the subject! Graphic design is something easy for me to do bc it doesn’t require a lot of moving around. I find my body to be unreasonably exhausted these days but my brain just keeps chugging along- so I want to keep it occupied AND do something that others might get a chuckle out of.

Disclaimer: I DO NOT want to create any kind of us vs them mentality, just funny winks at having TNBC in particular, but also some “f*ck your pink ribbons” that anyone dealing with any kind of breast cancer might want too.

Other ideas:

“I’ve always been difficult… #TNBC”

”Caution: AGGRESSIVE“ (like when people walking their dogs yell “NOT FRIENDLY!!!” hahaha

”Boobs are boring” for those of us going flat…

A t shirt with double skulls on the boob area… etc…

etc. etc. etc.

Like I said, this just might be me. I’ve always been a little nihilistic. So ZERO offense made toward anyone feeling any differently. I just hate the color pink. Fuck Cancer. Fuck TNBC in particular.

GIVE ME YOUR THOUGHTS! NO SUCH THING AS A BAD IDEA!!! xoxoxo Sara

Another day, another hitch in the giddy up.

Cracked a crown on my back lower molar right at the gum line (I have genetically shit teeth). I’m 10000% positive my dentist will want to do an extraction. Thank GOD it doesn’t hurt, theres no inflammation, or signs of infection.

I’m still in active treatment on a 21 day cycle.

Has anyone had a dental issue during active treatment? What did your oncologists tell you to do?

I’m not willing to go through all of this just to have my tooth kill me hahahahah fucking fuckery I tell you.

No one warned me.

I’d light a candle, but I feel like that could legitimately be dangerous. Even my 120 lb bulldog leaves the room. Baaahahahahahahaha

I feel like the biological conversation in my body went something like this:

Armpits: “Y’all! I never smell anymore EVERRRR”

Hair: “I am le tired (faints dramatically, while eyebrows and eyelashes shriek and clutch both their pearls and one another)”

Fingernails: (hissing)

Intenstines: “Hold my beer….”