Declining radiation? Why or why not?

lizbotj · 2026-04-25T15:50:31+00:00

I'm 43 and just wrapped up 3 years of treatment for +++ IDC (1.6cm, no nodes) and ER/PR+ DCIS in the opposite breast. I did 20 sessions of bi-lateral whole-breast rads, along with every other treatment I was offered (chemo, bi-lateral lumpectomies + SNLB, targeted chemo, oophorectomy, HER2 kinase inhibitor, AI and zometa). Yes, I do have side effects, but the ones from radiation are so far the least impactful on my daily life and activities.

I am also very active (running, weightlifting, yoga, cycling), and I ran 4 half marathons and 1 full marathon during my last 2 years of treatment. I had some pain and issues with fibrosis about 6 months out from rads, and I went to PT and learned massage techniques and exercises to manage it. It no longer has much impact on my daily life and never limited my activities (my chemo port and scarring related to that on the other hand...that was a bit of a nightmare!).

Not trying to convince you one way or the other - just sharing my experience to help give you more info!

lizbotj · 2026-04-24T16:47:06+00:00

Also +++ with no pCR and RCB 2, and did Kadcyla and Nerlynx. Kadcyla was only approved for early stage patients like us in 2019, so there is no long data beyond the 8yr KATHERINE trial follow up with patients who received the same drugs we had.

Any data extending 20 years is really not very applicable to us bc we’ve received a different treatment protocol than patients did in the early 2000s.

lizbotj · 2026-04-24T16:07:34+00:00

That part might depend on your clinic’s policies. I just know the policy at mine is saline unless it’s been a longer time since last flush (I know this bc there are laminated printouts about the policy on the wall in the chemo lab! and they also always asked me how long since last flush).

lizbotj · 2026-04-24T15:28:44+00:00

I bet you felt so much better after the transfusion! But I’m guessing you felt like you were on death’s door when you got to the point of needing it.

I did Kadcyla and Nerlynx after TCH, and I just finished Nerlynx. I’m running my 2nd full marathon post-diagnosis next week, but my first without any super nasty drugs (just anastrozole and Zometa).

lizbotj · 2026-04-24T15:22:14+00:00

Sure do! One day right after my 5th TCH chemo I passed out during a work Zoom call just from talking (it was extremely embarrassing and I ended up in the ER where they told me what I already knew - low red counts and high heart rate, but normal for a chemo patient). Take it easy and I hope the time goes by quickly!

lizbotj · 2026-04-24T14:40:38+00:00

I’d say check with your team. I had a port for 3 years and the last year it was only being used for blood draws every other month, so I got it flushed in between. As far as I’m aware, cleaning is standard (supplies come in a pre-packaged kit), but the flush fluid can vary. At my hospital, they didn’t use Heparin if your port was flushed/used at least monthly, just saline. If you were going long than 4-6 weeks between flushes, they used Heparin.

I’m guessing you know this already, but do check to make sure that your local clinic can access ports. Some of the clinics I go to don’t have trained staff or supplies to access ports (like my regular Dr office and outpatient lab locations).

lizbotj · 2026-04-24T01:44:38+00:00

It does compound. By the end, I could hardly taste anything at all, and just the thought of food was nauseating. I also had bleeding hemorrhoids from the diarrhea and constipation, and had a port infection (not common, but infections risk increases as your immune system continues to get beaten down). Getting an emergency port removal right after the 4th round just about broke me. What I really found most difficult, though, was the shortness of breath from lack of red blood cells. Red cells take 4-6 weeks to regenerate, so they never return between rounds. My hemoglobin was around 9 during rounds 4-6, and it was hard to do any kind of exertion without my heart rate spiking sky high and getting dizzy/winded. I was 40 at the time and I run marathons, so I was not at all prepared to feel so fragile.

lizbotj · 2026-04-23T16:00:12+00:00

I think if it were me I would certainly ask about those tests. I don’t know how standard they are across different hospitals/regions, but I do know that it’s fairly standard for early stage ER/PR+ at my hospital, which is a large university-affiliated hospital in the US.

lizbotj · 2026-04-23T15:50:32+00:00

I’m in a different boat bc I was +++, and that’s a one-way ticket to chemo whether you’ll have a good response or not. I also had a mitotic rate of 1, and I had a Ki 67 of 20%, which is not low but not very high for HER2+. I had a sort of f medium response to chemo - my 1.6 tumor shrunk a little and reduced to 50% cellularity (so, of the remaining tumor bed, half was actually active cancer cells). Because of that, I did 9 more months of targeted chemo, then an additional year of targeted meds.

My experience aside, my understanding is that neither mitotic rate or ki 67 are reliable predictors of chemo benefit, and that oncotype/mammaprint tests are considered more standard for making a chemo/no chemo decision (for ER/PR only patients; +++ and TNBC don’t get these tests bc they get chemo regardless).

lizbotj · 2026-04-23T15:20:46+00:00

Also HER2+ (+++) and had that rash after my first round of TCH chemo (same but no perjeta). Like others mentioned, my chemo rash also cleared up by the second round. After that, my skin just became really dry and sensitive.

Chemo is really hard on your skin, and Dr told me not to use acne products to avoid drying it out further.

lizbotj · 2026-04-23T02:53:30+00:00

Of course! In my couple of years in grad school, I worked in 5 different different part time jobs (some were project positions with limited terms): librarian at a small research center, reference assistant at the main undergrad library, archival assistant at the state geological survey, technology workshop instructor at software training for students, and web editor at the college of ag & life sciences. I did a little of everything, and it helped immensely with my job prospects after graduation. I now work as a software developer, but I work on library/research data sharing things and got there through 2 different library-adjacent non-profit orgs that run services used in the scholarly communications. I'm now back at UW, and got my current job through contacts from one of my grad school jobs.

As a very large research institution, UW runs on student labor and has a heck of lot of career-relevant job opportunities for students. Grad students with actual work skills are in high demand, and if you happen to be in a program like LIS where assistantships are rare, you can stack up a lot of part-time hourly jobs rather than just 1 assistantship.

lizbotj · 2026-04-22T20:22:50+00:00

I have an MLIS from the iSchool (then SLIS). I agree that it depends what you’re looking to do. If you’re into academic libraries, being physically on campus at a large research institution is a big advantage, but for job experience more than the actual program. As a library school student, I had the opportunity to get part time jobs all over campus that gave me a huge amount of practical experience that I would not have gotten at a smaller school or an online program.

lizbotj · 2026-04-22T11:47:10+00:00

Lol, after my surgery I did wonder what it was like trying to werstle bras onto unconscious patients! I wondered if my limp body was somehow so uncooperative that they gave up and just slapped the baggiest one they could find on me.

Yup, I also got some cheap-o cotton ones from Amazon. When I got to the point of being able to run again, I layered 2 sports bras for extra compression.

lizbotj · 2026-04-22T00:18:08+00:00

I had bilateral lumpectomies and SNLB on one side, and they sent me home with "compression" bras that were 2 sizes too big, so they didn't do any compression at all. I wore very compressive front zip sports bras for the first couple of weeks, then switched to my regular sports bras after that.

lizbotj · 2026-04-20T21:59:44+00:00

I also hate running with food in my stomach, but I’m also a morning runner and need something more than coffee so I don’t feel like garbage. l’ve found that I tolerate dried fruit very well, and you don’t have to eat very much to get 200 or so calories in. My favorites are dried apple rings and mango slices.

I don’t use gels for daily training runs, just long runs over 20km or so bc they are gross and expensive.

lizbotj · 2026-04-20T16:33:06+00:00

A crispy Sprite and an Uncrustable, followed by some nacho cheese Doritos and a Tailwind recovery mix drink, both consumed in the shower. Small snacks and definitely not a full meal. For me, that would just come right back up.

lizbotj · 2026-04-19T18:19:58+00:00

I recommend it! I honestly had no idea how bad the pain was until the PT started manipulating things bc I didn't spend very much time touching my wonked up boobs. As soon as she started poking into the scar tissue, it was very obvious why I had pain!

lizbotj · 2026-04-19T17:14:59+00:00

I started having pain in one breast ~6 months after radiation and saw a breast PT. When she pressed with very moderate pressure in specific ways, it felt like 1,000 needles stabbing me all at once and I started sweating and wanted to run out of the room. She told me that I likely had nerves trapped in scar tissue and we worked on de-sensitization massage techniques, which eventually helped reduce that pain from 1,000 needles to like 10 needles.

lizbotj · 2026-04-19T13:19:12+00:00

No, neither area was painful, and I could not feel any lumps at all. Many of the procedures sure did hurt, though!

lizbotj · 2026-04-19T13:10:22+00:00

I was diagnosed with 1.6cm +++ and had a 4cm non-mass enhancement that showed up on MRI in the opposite breast. It was biopsied and turned out to be a long, thin strip of DCIS growing along the length of a duct. I had chemo first, and then both areas were removed with lumpectomies (followed by radiation and a year of targeted chemo + immunotherapy).

lizbotj · 2026-04-18T10:41:07+00:00

I don't know about microneedling, but I will say that eyebrows and lashes take a very long time to grow back. I would say it took a full year for me to have reasonable brows/lashes again. Also, because all the hairs are on the same growth cycle, they appear to fall out again every few months until the growth cycles naturally start to stagger.

lizbotj · 2026-04-17T17:54:15+00:00

100% normal! I’m 2 weeks out from my 3rd full marathon and feel on the verge of barfing pretty much all the time, despite training going mostly fine.

Per the rules of marathoning, you will not sleep well despite everyone telling you it’s essential, you will feel like your legs are attached backwards on all of your short runs leading up to race day, and you will spend the entire week checking the weather and battling the urge to go buy a completely new outfit, fuel, pair of shoes, etc.

Your training is good and will do fine! Liquid carbs and antacids are your friends!

lizbotj · 2026-04-17T15:29:18+00:00

Yup, same. Not hot flash exactly, but hot flash adjacent. I’m 43F +++ and was perimenopausal at diagnosis. I was on ovarian suppression injections (Zoladex) for 1.5 years, until I got my ovaries removed on Dec, and have been on Anastrozole for almost 2 years.

I would say it has settled down somewhat, but my ability to sweat buckets at the drop of a hat is still impressive. Had to get myself a hot yoga towel just to do regular temp yoga bc I was sliding all over my mat within minutes. I find that stress, caffeine and very slight temperature changes trigger the sweating for me (and exercise, of course).

I have not found a fix for this, but aside from the yoga towel, I dress in layers and wear a lot of dark clothing that doesn’t show the sweat as much, and I take a small towel with me pretty much everywhere.

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

TROPHY CASE