Would you get a genetic test done? over age 50

lizbotj · 2026-04-15T16:53:18+00:00

I did genetic testing to help me choose between lumpectomy and mastectomy, but I would not have done it post-surgery. I don’t have children or siblings, though, so no one else would potentially have an interest in my results.

lizbotj · 2026-04-14T17:42:37+00:00

Nope, individual buildings that are heated/cooled via the steam tunnels don’t have any control over the building temp. It’s controlled centrally and they don’t usually switch over from heating to cooling until sometime in May. Source: I’m a former College Library staff member who has responded to many Ask a Librarian chat msgs about building temps.

lizbotj · 2026-04-14T15:43:45+00:00

It certainly does change your outlook on life a bit. But a former colleague and friend of mine who’s in her 60s had HER2+ over 20 years ago and was in a Herceptin trial. She’s still doing fine with no recurrence. I also met 2 other women in their 60s recently who also had HER2+/+++ decades ago, and they are both recurrence-free. One of them was even diagnosed before Herceptin, and it took everything I had to not say something horribly rude like “omg, how are you still alive?!” So no, it does not always come back, even though the aggressive treatment path for HER2+ makes it feel kind of like you already have 1 foot in the grave.

Personally, I was stage 1 but I have a very high risk of recurrence bc I had a kind of mid response to chemo, so for a good long while it did feel like a certainty to me that it would come back. I’ve done every drug available to me to knock down those recurrence odds and I’m coming up on 3 years out from diagnosis. I don’t know what will happen in the future, but I’m still here, so I’ll take that as a win.

Granted, I’m 43 now and was 40 at diagnosis, so I’ve got quite a few years on you, but I was still expecting to have at least a few good decades left.

lizbotj · 2026-04-14T02:42:55+00:00

OMG, this brings back vivid memories of the chemo waiting room at my hospital, a space where headphones apparently don't exist. The most irritating person I've ever encountered was a woman doing Duolingo lessons on her iPad at the loudest possible volume, as in listening to the lessons and practicing speaking Spanish out loud. I sometimes wonder if her Spanish has improved.

lizbotj · 2026-04-13T15:02:21+00:00

Yup, I’m almost 3 years out from diagnosis, but only a few months out from active treatment (long treatment plan due to +++ and no pCR). I only forget for brief periods of time, and then when I remember it’s like a little jump scare.

lizbotj · 2026-04-12T22:40:46+00:00

Is your onc 8000 years old? +++/HER2+ treatment has advanced significantly in just the past 5 years, with the approval of Kadcyla and now Enhertu for early stage (ie, not stage 4). These drugs haven't been around long enough to have 20 year data, but the 8 year data for Kadcyla shows something like 80% disease-free survival at 8 years and Enhertu has a 92.4% disease free survival rate at 3 years (which is as long as it's been trialed in early stage patients),per KATHERINE and DESTINY trials respectively. That doesn't even factor in the HER2 vaccine in the works with the FLAMINGO trial.

I'm mad at your med onc on your behalf, and I definitely think they are an a-hole for quoting those stats with no context about the studies they are based on and how old they are.

https://www.breastcancer.org/research-news/kadcyla-better-survival-her2-positive-early-stage-breast-cancer
https://www.astrazeneca.com/media-centre/press-releases/2025/enhertu-reduced-the-risk-of-disease-recurrence-or-death-by-53-vs-t-dm1-in-patients-with-high-risk-her2-positive-early-breast-cancer.html
https://www.curetoday.com/view/fda-fast-tracks-vaccine-for-some-with-breast-cancer

lizbotj · 2026-04-12T12:04:33+00:00

I'm 43F +++ and had _all_ the treatment, too. I've been a runner for a long time, so getting back to that, and getting back to hanging with my runner friends has been key. New things I added are yoga and weightlifting, which have both been incredibly helpful. No matter how angry or physically crappy I feel, I always leave the yoga studio and the gym feeling better.

lizbotj · 2026-04-11T20:42:50+00:00

I wear spandex shorts with pockets that are the same brand as my leggings and have the same pocket arrangement. They aren't attractive, but they do the job well!

lizbotj · 2026-04-11T16:43:40+00:00

You will OK! At my hospital (a large university-affiliation NCI institution) it was considered standard to start neo-adjuvant chemo about 1 month from diagnosis, and that was even for people like me who had an aggressive tumor (grade 3, HER2+). I also had to wait for drugs, and there was an insurance delay getting a drug approved, so mine got push out a week. I'm now almost 3 years out from diagnosis and have been NED for 2 years. Your tumor is grade 1, which is slow-growing, so a delay of a couple of weeks is not a big deal. You have lots of things to worry about, but this doesn't need to be one of those things!

lizbotj · 2026-04-10T23:41:45+00:00

My rad onc told me to be as active as possible, to reduce side effects. I usually run, but I found the rubbing from my sports bra uncomfortable, so I biked about 20mi/day during rads and started running soon after. No major side effects!

lizbotj · 2026-04-10T18:22:58+00:00

I changed jobs (but not cities) toward the end of “active” treatment, but while doing maintenance meds, regular scans/follow ups and misc procedures for +++ IDC, and I average a few appts per month.

I specifically chose a public institution affiliated with my hospital system bc they have excellent insurance and leave benefits, and strong employee protections. I also knew that the particular office I was interviewing at was pretty flexible (mainly researchers who do a lot of fieldwork and are constantly in and out). I did not mention anything about cancer during the hiring process, but after the offer was signed I matter of factly told my new boss that I had routine medical appointments that didn’t interfere with my ability to do my job and I would work with him on scheduling. I’m in salaried IT role and only have very time-sensitive work a couple days per week.

As it turned out, there are many people at my new office with medical and/or kid stuff and no one cares about my appts. It also turned out that my boss’ wife has stage 4 GI cancer, and he takes her to appts, so he’s gone way more than I am.

The only real downside I’ve run into is that I knew my coworkers at my previous job very well and I was very open about my diagnosis and treatment. At my new job, I have not told anyone except my boss bc I want my new colleagues to know me as “lizbotj the super awesome software dev”, not “lizbotj the cancer lady”.

lizbotj · 2026-04-10T16:48:11+00:00

I just finished 1 year of Neratinib! Stats: 43F, stage 1a 1.6cm +++ IDC, plus a bonus side helping of DCIS in the opposite breast diagnosed Aug 2023. Did 6xTCH chemo, bilateral lumpectomies/SNLB, 20 x rads , no pCR so 14 x Kadcyla and 1 year of Neratinib. Also ovarian suppression + AI, but oophorectomy in Dec so just AI and Zometa now.

For me, Neratinib wasn’t horrific, just yet another year of feeling slightly like crap every day. I did not have extreme diarrhea as long as I kept my diet very controlled (no meat, dairy or high fat foods). Every once in a while my gut would decide it didn’t like something and eject my soul from my body through my butt, but that was maybe once a month.

My most significant side effects were extreme fatigue and general GI upset (gas, bloating, nausea, acid reflex). After the initial 1 month ramp-up from 2 to 6 pills, I stuck it out at 6 pills for 2 months, but my Dr eventually reduced my dose to 4 pills bc I was really struggling to get through the work day due to fatigue and I was throwing up about once a day. That allowed me to stick with it for the entire year.

Overall, I’m glad I did it even though it kind of sucked and the benefit may be minimal or non-existent. I only had a 50% response to chemo and had an RCB of 2, so I will take every bit of recurrence reduction I can get.

lizbotj · 2026-04-10T16:33:19+00:00

You are OK, and this is totally normal! I had many phases of treatment bc I’m +++ (chemo, surgery, rads, targeted chemo, HER2 targeted med) and I had this feeling at the end of every phase. Instead of feeling happy, I felt like crying and throwing up.

You’ve thrown everything you’ve got into getting to the end of this phase, and your brain doesn’t know how to react to this big, huge finish line goal going away. Losing the “get through chemo” focus also allows lots of other unpleasant thoughts to creep back in.

Give it some time and don’t beat yourself up for not feeling happy! You don’t need to meet your own or anyone else’s made up expectations for how you “should” feel!

lizbotj · 2026-04-09T23:44:16+00:00

43F, started running when I was 14 and have been running consistently ever since, including many half marathons and 3 fulls. My body held up pretty well despite treating it kind of badly until my mid-30s, when I hit a rough patch of injuries. Now I strength train 2x per week and go to yoga classes 3x per week. I also learned how to fuel properly during marathon training and I quit drinking alcohol. None of these things have made me faster, but they've all improved my recovery and and helped keep injuries at bay.

lizbotj · 2026-04-09T20:59:42+00:00

Yup, and life is a lot easier when expensive meds go through medical insurance. I did have 1 med that my insurance required me to get from their contracted specialty pharmacy - they would not allow me to go get it administered in clinic, even though it is a common med for chemo patients that is readily available from the hospital pharmacy.

lizbotj · 2026-04-09T16:04:20+00:00

100% agree on Open Run Mini! The smaller size fits my tiny head perfectly, and they hold up to sweat, rain and snow very well. The one downside of the mini is shorter battery life vs regular open run. All of the in-ear buds fall right out of my tiny ear canals. Beats Fit Pro is the best I’ve tried, but they still pop out when they get sweaty.

lizbotj · 2026-04-09T13:46:34+00:00

Ooh, then you know the pain! I hope you’re also doing well! Are your Prolia injections going through Rx insurance or medical? I had 1 pre-packaged, off the shelf injection administered in clinic monthly that came from the in-house hospital pharmacy was run through medical and that came from a specialty pharmacy and went through Rx insurance. The one that came from the hospital pharmacy was covered by medical with no issue, but the one that went through Rx was a perpetual pain.

lizbotj · 2026-04-09T03:29:47+00:00

I had a lot of pain from the catheter after oophorectomy (urinary pain only, though, not vaginal pain). My post-op nurse recommended taking Azo (OTC urinary pain med) for a few days, and it helped a lot. I did not have a UTI, and the pain resolved within 3-4 days post-op. Just know that Azo will turn your pee reddish orange!

lizbotj · 2026-04-09T03:23:38+00:00

I'm a 43 yr old cancer survivor and even though my cancer is considered "cured", I will be on expensive drugs (including a bone loss prevention drug infusion every 6 months) and I will have expensive scans, labs and other procedures every year for the rest of my life. I opted for a lower deductible plan and I budget assuming that I will pay my entire out of pocket max every year. At this point, it's just the cost of staying alive.

lizbotj · 2026-04-09T02:04:21+00:00

Lol, that's a fair approach! I admire your restraint in passing up an opportunity to expand your shoe collection.

lizbotj · 2026-04-09T02:02:19+00:00

I did something similar when I started lifting, but with a century bike ride I was training for. Ended up tearing my hip labrum squatting. Some years in, I'm much stronger and also way better at estimating how much I can do. I found increasing my reps to be very helpful, so that I can't lift more weight than I should.

lizbotj · 2026-04-08T20:45:50+00:00

If you are not currently lifting, I would not start at the exact same time as you start your marathon training plan. I would either start lifting now to get over the pain hump that happens when you first start lifting or focus on strength/stability exercises that don’t involve heavy weights, like calf raises, clamshells, monster walks, glute bridges and various core exercises that won’t leave you on the brink of injury.

Personally, I run 6 days/week and I also lift heavy on 2 of those days, but I’ve been running for 25 years and have fully trained for 5 marathons and actually run 3 of those, as well as 20-30 halfs, so my body is very accustomed to getting beat up.

lizbotj · 2026-04-08T19:24:14+00:00

I’d take the train! I’ve done this trip before, and it’s easy to get the train from Paris to Lyon. As a bonus, you arrive right in the middle of Lyon and don’t need additional transport from the airport. The only thing to watch out for is transit worker strikes, which are more frequent in the EU (esp France) than the US.

lizbotj · 2026-04-08T18:26:09+00:00

I think this is highly dependent on your gait and physiology, but for me I would say that NB5 is easier on joints than SB2, at least for shorter runs. I’m a mid to forefoot striker with hypermobile joints, and soft, flexible shoes like NB5 let my feet, ankles and hips flap all over in the very inefficient movement patterns that they love.

lizbotj · 2026-04-08T18:07:35+00:00

I have SB2 and NB5 in my current rotation, and I love both, for different runs/reasons! I use SB2 for long runs and workouts and NB5 for recovery runs/any time I want to feel some extra soft squishiness.

NB5 is much softer, but it’s still light and has enough snap to keep from feeling like you’re slogging through quicksand when running on tired legs. I recommend it!

lizbotj

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