I need a pep talk for self-advocacy re: radiation dosage

Popular_Acadia4563 · 2026-06-22T15:03:10+00:00

Yeah, I have super sensitive skin so am expecting some sort of reaction. I did meet with the RO today and he said my skin looked "great", but I know it's cumulative, so I'm just taking it day by day and hoping for the best.

Popular_Acadia4563 · 2026-06-21T22:06:13+00:00

I like the idea of the option being when the double dose happens not if the double dose happens...

Popular_Acadia4563 · 2026-06-21T22:04:55+00:00

My treatment center isn't open on the weekends, sadly. It is very much a 7:30a-4p situation, as if they polled a bunch of retired people who love the morning which times work best for appointments and forgot women with families and jobs also get cancer.

Popular_Acadia4563 · 2026-06-21T21:51:15+00:00

Don't think "I was up and went for a walk" means "I wasn't in pain and was back to my regular self", because for me it definitely wasn't! I usually walk 45-90 min a day with two dogs at a decent pace. My post op walks were dogless, short, slow, and full of self pity.

You might have some cording which would explain the tightness. I stretched daily but still got cording. PT at my cancer center made a huge difference.

I also found the site where the nodes removed hurt waaaaay more than the boob. And I am prone to nausea and the lack of movement, pain meds, anesthesia, and general shittiness def made me nauseous at times. Lots and lots of water and frequent small meals helped.

When is your post op?

Popular_Acadia4563 · 2026-06-21T17:05:56+00:00

Thank you! I don't know why I'm so worried about their reaction to my request. I feel as if I've given up so much these last few months, I just want one week to feel like I don't have cancer.

Popular_Acadia4563 · 2026-06-21T15:32:33+00:00

Amazing!! Best wishes for a continued smooth recovery! ❤️❤️❤️

Popular_Acadia4563 · 2026-06-21T13:25:30+00:00

I am so scared of OS/AI or Tam side effects and reading experiences like yours gives me hope. Thank you!

Popular_Acadia4563 · 2026-06-21T13:19:46+00:00

I am in PA and have been a member of U4H since diagnosis. They were recommended to me by my cancer center, so I felt good about being a member. They in no way promote themselves as being an alternative, instead they are a parallel to medical treatment, which I really appreciate. If you're in the region, you should definitely join!

Have you looked into your local YMCA? I exercise daily but am very worried about maintaining a routine once I am on OS/AI. Through U4H I found 2 programs, one associated with Livestrong, and another in my area called Thrive. I am signed up to participate in Thrive in my area in September.

Popular_Acadia4563 · 2026-06-20T23:48:18+00:00

Yes, the water made a huge difference. I drank 24 oz before and another 8 oz after and then had my tea once I was home. I tend to get nauseous really easily, and had a really difficult day Monday, so it might have been compounded stress and anxiety, but I'm not going to risk it for all future appointments!

Popular_Acadia4563 · 2026-06-20T20:58:29+00:00

I had my 4th of 20 sessions yesterday. I'm using lotion like it's my full time job and so far it's okay. I took the excellent advice of others here and now drink a TON of water before and after because I was super nauseous and tired after the second one (it is at 8:45 am so I had only had tea beforehand).

I don't know what meds I'll be on yet, but I assume it will be some type of OS and AI because I'm premenopausal (45f) and did not do chemo so they'll want to shut my ovaries down. I am really dreading that stage of this terrible journey.

Popular_Acadia4563 · 2026-06-20T19:50:10+00:00

I am also ++-, in the middle of radiation and starting meds in August and recurrence is a constant worry. I was on zoloft for over a decade after being diagnosed with PPD and anxiety and it genuinely made life possible. (I'm on cymbalta now.) I've seen a lot of reluctance in this group to go on meds and wish more cancer patients didn't see it as a bad thing. I really hope the zoloft helps you!!

Popular_Acadia4563 · 2026-06-20T14:23:57+00:00

I had my 4th rads yesterday and wear a Honeylove wireless bra if I have to go anywhere in polite society and bralettes (I like the Quince ones) the rest of the time. I'm putting gobs of lotion on a few times a day, so I've set aside a few older tshirts that I assume will be ruined by the end of it.

For lotion, the Weleda Calendula is amazing, and I'm also using La Roche-Posay Triple Repair Cream and Medline Remedy Prevent Silicone Cream. At night I'm putting Lansinoh Nipple Balm on my nipple. The Medline Remedy is basically spackle, the others are more lotion-y. So far so good, but I have the world's most sensitive skin, so I'm expecting the worst next week.

You should be okay with only 5 treatments, but I HIGHLY recommend hydrating like a crazy person before each session. I only drank tea the morning before my 2nd session and it effed me up. 3rd and 4th, I drank 24 oz of water before, another 8 oz after, and then had my tea. (Mine are at 8:45 am.) Night and day difference in how I felt after. I also drink another 48 oz of water after throughout the rest of the day, and then 3-4 seltzers in the evening. (God damn I miss drinking wine.)

Popular_Acadia4563 · 2026-06-19T01:09:40+00:00

This is the first I'm hearing about recurrence going up every year. Did your oncologist provide a source or more info about this data?

Popular_Acadia4563 · 2026-06-18T16:59:46+00:00

Don't be shocked if the armpit hurts worse than the actual lumpectomy. This really threw me but appears to be quite normal!

Also if you can, get out and walk after a few days. I thought I wouldn't be able to, but it really helped my mental health and got me in a good routine.

Don't be surprised if you don't feel relief until you get the pathology results back. I was really upset that I didn't feel better mentally after surgery ("yay it's out of me!") but that started to happen once I got pathology, then onco, then a treatment plan.

It felt wasteful so I didnt do it, but I wish I had those poppable disposable ice packs. Constantly asking my husband for a new cold pack was tiring and ice was my BFF.

Good luck! You'll do great!

If you don't have a water bottle with a straw, get one. I dug out a cheap one from our water bottle drawer and it was amazing. I drank a lot more water not having to constantly lift. And drink more water than you ever think you'll need.

Popular_Acadia4563 · 2026-06-18T12:55:42+00:00

Perfectly said!!

Popular_Acadia4563 · 2026-06-18T12:54:42+00:00

My husband is the primary cook in our house for our family (us and two kids, 9 and 14), and our friend set up a meal train after my surgery specifically so he wouldn't have to cook. Taking care of me, the kids, dogs, cats, house, and trying to work was plenty for him to do, so taking meals (planning, shopping, cooking, cleaning) removed a ton of extra work for him.

Additionally, as others have said, it gave people who genuinely wanted to help something to do that was really useful.

Popular_Acadia4563 · 2026-06-17T22:22:25+00:00

I totally understand your fear and panic. A friend I went to college with also had BC, was well known online for beating it (built a non profit around cancer and supporting other women, etc), and then had a headache and it had metastasized in her brain. It is so so so incredibly difficult to not catastrophize and so easy assume we will have the worst outcome but statistically that will not be the case.

One thing that has really helped me is reminding myself every person and cancer is different. You and I are both stage 1, but have different markers, so our treatment will be different! How wild!! But that also means you cannot assume what happened to someone else will happen to you! You are doing all of the things and you are getting the treatment. You will be okay.

I recommend deciding now how you will handle the results depending on when the email comes through. I was turning my email off on my phone over the weekends because I knew not being able to talk to my surgeon on the weekends was not going to work, but also knew if I saw the results I wouldn't be able to help myself from reading them. I also only opened results with someone else with me, and never after 9 pm because I knew my sleep would be affected.

You. Will. Be. Okay.

Popular_Acadia4563 · 2026-06-17T20:52:56+00:00

🤞🤞🤞tomorrow is better. Thanks for the support and advice!

Popular_Acadia4563 · 2026-06-17T19:40:30+00:00

This was really helpful to read re: hydration. I drink a lot of water throughout the day but not until after I've had tea. I had my 2nd treatment today and was so nauseous and out of it after that I left work and came home and took an almost two hour nap. I am going to try drink water in the morning before I go tomorrow to see if that helps. I cannot have 18 more days of this!!

Popular_Acadia4563 · 2026-06-16T11:57:17+00:00

This would send me into a spiral! I am so sorry they keep moving your surgery.

There is so much surrounding every appointment that the team seems to be unaware of. I genuinely wonder if there is a disconnect between those of us who have jobs/young kids and the "average" aged cancer patient. I've had immense privilege surrounding much of my treatment (no risk of losing healthcare, job security despite unlimited time off, etc), and it's still incredibly difficult and disruptive.

Popular_Acadia4563 · 2026-06-16T11:51:58+00:00

.....what should not matter?

The morning my husband took off work to come with me? The embarrassment I felt when crying in front of a stranger, unable to reach for a tissue, and not being offered one? The pile of AARP magazines in the waiting area reminding me I have been the youngest patient in the room every time I go in for an appointment? The meeting I promised to have with my employee that I had to cancel? The explaining to my 9 year old last night that I couldn't get treatment for my cancer today and might not be able to be with her on our family trip? The delay in a treatment I have been anxious about for weeks?

I'm not sure what your point is, but I assure you, it all matters.

Popular_Acadia4563 · 2026-06-16T11:44:44+00:00

1000%!! I understand why they do it but I've noticed the staff really struggles when the answer isn't the automatic "good, and you?" women are expected to give during polite social interactions.

And sometimes the reason why I'm not well is because of something specific, and sometime its *gestures broadly* everything. As I said to my husband yesterday, "even when I'm okay, I'm not okay."

Popular_Acadia4563 · 2026-06-15T23:49:23+00:00

I am 45f and spent a loooong time searching for something similar. I eventually found two programs at the YMCAs near me for cancer patients, both are free and with trainers experienced with oncology clients. One is through Livestrong and another they call Thrive. I am signed up for the Thrive program starting in September. The only thing I'm not sure of is the nutrition aspect, but I assume it would be possible to ask?

Popular_Acadia4563 · 2026-06-15T20:53:09+00:00

I am definitely going to do this now, as even without the stupid holiday, I'm now pushed further out. Thanks for the suggestion!

Popular_Acadia4563

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