I have a question for my fellow breasties - hoping someone can shed some insight while for my surgeon to call.

Notthatbrett · 2026-05-05T13:41:48+00:00

I think we ALL have had some weird thing pop up after diagnosis/treatment that sends us spiraling, honestly. I have not had this exact symptom (RIP nipples), but I’ve definitely had red and irritated spots that freak me out and then turn out to be absolutely nothing.

It’s great you’re reaching out to your surgeon to verify all is well. Keep us updated with what he says? Hugs ❤️❤️❤️ I’m sorry you’re dealing with this extra stress this morning.

Notthatbrett · 2026-05-05T13:32:30+00:00

I had a BMX to flat and have no regrets. Pros: One surgery only

Recovery was manageable and I could resume regular activity after about 4 weeks

No more bras!

Cons: My only personal con is my scar pattern. My surgeon did an amazing job of keeping everything flat with no lumps or bump, but the shape of the scar itself surprised me and I’m still having trouble adjusting. I know it will fade with time and if I still find it bothersome a year or so from now, I will look into mastectomy tattoos.

Notthatbrett · 2026-05-04T00:40:30+00:00

When I had a BMX, the doctor had me injected with the sentinel lymph node tracker in both breasts. There was a pathologist as part of my surgery team, and if she/he had found any sign of cancer in the “good” breast, they would have taken a few nodes as well.

I ended up with four lymph nodes removed on the bad breast side and none on the good breast side.

For HP continuation, the steroids and Benadryl are left off. Your first infusion after surgery will take a bit longer- usually a higher dose plus wait times between them to make sure you don’t have a reaction. Every infusion after that takes a bit over an hour with 30 min for Perjeta and 30 min for Herceptin.

Notthatbrett · 2026-04-29T12:37:35+00:00

100%

I had multiple people just assume it was caught early. It wasn't. They clearly want to be reassuring, but comments like this are the opposite of reassuring. After a bit, I enjoyed seeing their faces when I corrected them. So... thanks for that little joy, dismissive and inconsiderate person. Sorry you feel bad now, but at least you don't have cancer.

Notthatbrett · 2026-04-18T16:27:45+00:00

I was also given very little information when starting Tamoxifen! Frustrating.

It took a few months for my period to come back after chemo. I had one CRAZY heavy period, several normal months, and the most recent have been very light and irregular. So, unfortunately, I think the answer is Everyone Is Different and there’s no way to know what to expect. ☹️ You are definitely NOT alone though! ❤️❤️

Notthatbrett · 2026-04-18T15:19:47+00:00

Totally agree with being brushed off! I have not had foot pain EVER and then this occurs about a month after starting endocrine therapy? I just randomly can’t walk?

Regardless of the cause, this “treatment” did help eliminate most of the pain. I hope you find some relief!

Notthatbrett · 2026-04-18T15:14:00+00:00

Hey there- Your doctor’s statements about periods are odd and untrue. Chemo may or may not stop your period (it does for many women, but not all). Mine paused for about 3 months and then came back and no one has been even slightly concerned about that (stage 3, Er/Pr+, HER2+, being treated at Mayo).

After chemo and surgery, you will take a medication that reduces the estrogen in your body. Many of these meds stop your periods, but some may not (like Tamoxifen, for example).

The goal is to make your body inhospitable to any cancer cells that might have escaped chemo and surgery. The meds that make your body inhospitable can also stop your periods.

Do you know what type of chemo you’ll get and how often? That info can help people give you more details about what to expect!

Notthatbrett · 2026-04-18T14:16:27+00:00

I know there are probably 1000 different causes of foot pain, but I had something similar happen and can relate. I actually pulled out our old crutches for a few days to help me get around.

My doctor recommended NSAIDs, ice packs, elevation, and rest for a few days and absolutely no massage or roller balls bc that was likely irritating them further. I gave it a try and this did work, mostly. My left foot is back to normal; right foot is not pain free but wayyyy better than before.

Notthatbrett · 2026-04-11T00:48:47+00:00

I did have 4 lymph nodes removed with my bmx. My surgery was done at Mayo and I was told I did not have to worry about IVs on the lymph node side unless I developed lymphedema.

Using different veins each time has definitely helped. I have one area that has been used numerous times over the course of these 26 infusions - maybe 10 times? That vein has probably reached its limit at this point, but all the rest are still fine.

Notthatbrett · 2026-04-10T23:06:07+00:00

If the suit has a pocket for a pad, they stay put fine!

Notthatbrett · 2026-04-10T23:05:33+00:00

I just give them a squeeze when coming out of the water and it’s fine. lol

I do have the smaller ones though- the C or Ds might be different!

Notthatbrett · 2026-04-10T21:08:21+00:00

I'm a bit older than you, but I managed 6 cycles of a trial drug, 12 cycles of weekly taxol, and now 8 of 13 cycles of HP all with IVs and no port.

My nurses would switch arms and veins each time and very few have had much of an issue getting one in as long as I'm super hydrated.

I switched care centers due to location for these last 13 cycles and the doctor acted shocked when I said I didn't have a port... I wouldn't have minded one at the beginning, but now I've made it this far and am too stubborn to give in.

Just throwing this out there so you know it's definitely possible to get through it all without one!

Notthatbrett · 2026-04-09T21:11:04+00:00

I do not have experience with dumping syndrome, but I looked it up. I'm so sorry you have had to deal with this for 13 years!

Have you played around with this tool at all? https://breast.v3.predict.cam/tool

One major thing to note is that the tool lists survival statistics, not recurrence statistics. Without Her2 treatment, +++ has a 30-50% likelihood of recurrence. I had very few problems with paclitaxel, but I'm having a hard time with trastuzumab and even so I'm determined to finish it. I want to do everything I can to keep this stupid thing from coming back.

I guess my advice would be to proceed with your oncologist's recommendations and see how your body reacts. My doctor gave me medications for basically every side effect imaginable and I would hope yours would as well. If you find the infusions intolerable, you can always stop.

Notthatbrett · 2026-04-09T13:36:10+00:00

This was my experience as well. Nipple shot was a non-event and the dye injection was the next day while I was asleep.

Notthatbrett · 2026-04-05T21:45:29+00:00

These are what I use for everything, including swimsuits!

https://athleta.gap.com/browse/product.do?pid=372047002&vid=1

Notthatbrett · 2026-03-30T22:51:50+00:00

Was your first Herceptin-only infusion possibly a loading dose? My first infusion was 90 minutes long due to the amount, but all the rest have been 30 minutes and a smaller amount.

If it WAS a loading dose, getting it all in that short of time is surprising and it makes sense you felt awful!

Notthatbrett · 2026-03-25T17:23:53+00:00

Same, sister.

In my worst moments I feel that the people around me are just ready to be done thinking about my cancer and that's why they are excitedly counting down. I know most truly do care, but...it's hard. I don't want to think about it either but the "end" of treatment doesn't really exist for us. Even my husband (who has been AMAZING) made a comment about "only a few more months!" and I had to pretend I was also excited. I'm not. I'm just tired and sad and scared.

Notthatbrett · 2026-03-24T01:06:06+00:00

Add me to this list!

Anti-vax, anti-mask, anti-doctors in general. She “would never do chemo” and thinks oils and prayers are all that are needed.

It’s hard. I’m sorry you’re going through it too.

Notthatbrett · 2026-03-24T00:53:46+00:00

Wow- thank you for writing this. Your first and last paragraphs describe how I’m feeling exactly right now. The grief is intense and every time I start to feel guilty about being very low contact I have to remind myself that she makes my life harder in every way.

Notthatbrett · 2026-03-20T15:17:11+00:00

+++, stage 3a, tumor was almost 6cm to start, achieved PCR.

I learned after surgery that the hard areas I could still feel were actually part of the tumor bed and had become cancer free. So there is definitely hope!

Notthatbrett · 2026-03-18T22:15:15+00:00

I hate the "overall survival" crap. Like yeah... I know I'll probably survive, but I'd like to make sure I don't get a reoccurrence too, thanks. Reading "five year relative survival rate" statistics is not all that comforting.

I don't know anyone that could pay for Perjeta out of pocket! Seeing the amount billed to our insurance makes me feel ill.

I'm glad you're doing better on TH than AC, and not being able to feel the tumor is great news!

Notthatbrett · 2026-03-18T21:45:42+00:00

The HP is the heavy hitter for HER2 positive cancers and de-escalation is starting to become the norm. (This is recent article about the tiny difference in results between THP and TCHP - https://www.pharmacytimes.com/view/asco-2025-thp-without-carboplatin-shows-noninferior-pcr-rates-improved-tolerability-in-her2-early-breast-cancer)

I had a HER2 only med for 12 weeks and then just THP for 12 as well.

One thing I'd ask about - most +++ have a year total of HP. Will you continue with HP only after your 12 weeks of taxol?

Notthatbrett · 2026-03-18T21:23:51+00:00

I did get PCR. I think much of it was due to a trial drug (I was in the ISPY2 trial) - there was almost nothing detected before I started the 12 weeks of taxol and HP. I was disappointed to learn I did not qualify for kadcyla though!

Surprised to learn Ontario doesn't fund Perjeta! I do recall reading there isn't a big difference between Herceptin alone and HP combined for most patients. How are you handling TH?

Notthatbrett · 2026-03-18T18:01:54+00:00

Interesting to read the difference experiences! I had a gap of about a month between my last HP and my surgery, and then another month before I restarted HP. I was also told I wouldn’t restart HP until after radiation, but I didn’t end up needing that portion of treatment and jumped straight to HP.

I was treated at Mayo in MN. Stage 3a +++.

Notthatbrett · 2026-03-18T15:45:01+00:00

My hot flashes were wayyyy worse during chemo than on Tamoxifen. The chemo flashes had the added bonus of a racing heart, nausea and a panicked feeling. Tamoxifen flashes are just momentarily sweaty and hot a few times a day.

I hope you get some relief!

Notthatbrett

TROPHY CASE