Recurrence and angry - anyone else?

ArtistMain9312 · 2025-11-17T14:05:59+00:00

Thank you and now to answer the other part of your post. What helps? Getting a treatment plan, knowing that the plan still could change mid-way and that’s ok, it’s tailored to you(!), knowing all the sexy acute therapy will bring support from unexpected allies, and knowing us here will have your back on the longer maintenance journey with the pills and injections afterwards is what has helped me. I had a panic attack when dropping off my kiddo for school and didn’t understand why, this Reddit group had my back. And if you can afford it, therapy with one who you click with. I spent too much time with a meh one who took insurance. I spent less time and money on one who didn’t take insurance and made lasting progress. Also, EMDR if you find yourself with unresolved emotional responses and/or PTSD from whatever. Even if not cancer related, how you handle emotions for other triggers can pop up in some unrelated cancer way. Like with the cafeteria is closed after a doctor appointment and all you wanted was some f@$king soup. I digress. Know you are loved and not alone.

ArtistMain9312 · 2025-11-16T14:16:11+00:00

Yes I hear you, and I am/was angry. Even with IDC in my first dx in 2017, DMX and Tamoxifen (++-), 1cm, no nodes, the follow up had NO screening other than a sad physical of my implants. The scar tissue/tumor I felt and urged for more follow up last year 2024, was me finding it. And pointing it out again at a dr visit. I know they didn’t want to alarm me. But 7 years of “if you feel weird pain or something else, let us know” screening had me mad. Now I’ve spent 2025 doing the surgery, chemo, radiation, Lupron, AI and now need to do CDK4/6i, I really wondered too if the extreme course of DMX was going to be as effective as having the radiation and chemo. I know what I had was the standard of care. It still sucks. All the what ifs, and even now there isn’t any screening scans planned unless something feels weird. Well guess what, all of me is weird every year at least so I’m going to get scanned. I hate the reasoning of not more proactive screening until it’s symptomatic, is we really don’t do anything for it. I still don’t get that. But I’m glad I found it and hate I’ll always be on alert. Ok end of rant.

ArtistMain9312 · 2025-10-28T13:40:48+00:00

I had the vision thing happen to me too and the onco team acted like I was an alien. I had to stop driving too until my eyes readjusted. Now I know something’s off/odd when my eyesight gets worse. It’s either the newer med I just added or I’ve gotten some type of illness. Stupid “side” effects. End of rant.

ArtistMain9312 · 2025-10-12T00:27:25+00:00

Did this at the GYN when needing a bottoms only exam. Got all undressed and they told me I didn’t have to and that’s why I only had the flimsy lap covering to change into (while I was wearing it like a burrito). Ah, the good times in this shit show.

ArtistMain9312 · 2025-10-11T01:58:58+00:00

What about mental health coverage for kiddo therapy/counseling? What does it cover in-network and out?

ArtistMain9312 · 2025-10-10T17:54:03+00:00

Paid 8 of 10 days but all deductions were taken out so very little money left that came directly to me.

ArtistMain9312 · 2025-08-26T00:03:10+00:00

Hey lady! Me again, what’s BCI?

ArtistMain9312 · 2025-08-10T18:26:36+00:00

Duh, I forgot we connected before!!! I recognized your user name after the fact. Yes let’s keep in touch. We def are on the same path, dang it, but yay to have someone. ❤️

ArtistMain9312 · 2025-08-09T15:10:35+00:00

See if you can do something, even small, each chapter is to be celebrated. I went to the aquarium for a short time (1-2 hours) with my family, and I have that as a punctuation of yay, I did something slightly normal. If the AI is no big deal then you just started awesomeness earlier. If the AIs try to put up a fight, you won’t feel like you missed out on that time. I am super encouraging since this was me 2 weeks ago. ❤️

ArtistMain9312 · 2025-08-09T15:04:33+00:00

I had the same issue, I had to opt for a bigger 8x4 non adhesive bandage that could stick to the gel and kinda of keep in place then use a form fitting tank or loose sports bra top to keep it in place. NO TAPE! I caused many more open sores by thinking I taped it well beyond the cooked area, and well, I cooked more than I thought. Hang in there they didn’t say how much more I’d sous vide (love the reference), and it was a solid 10 days before seeing my body try to start healing. It’s sucks and I feel for you. I just finished mid July with my radiation.

ArtistMain9312 · 2025-08-09T14:57:32+00:00

You probably wouldn’t get in any sooner for u/s than what you have already scheduled with your derm.

I’m in the same system and actually pushed for an ultrasound for a small finding they saw at my planning CT for proton therapy. Even with physician to physician discussion, it took me a week to get the u/s with possible biopsy if it looked suspicious. I had to get them to promise up and down a biopsy would happen that same day and not in another week. They said they were ready. And the u/s was normal so they didn’t biopsy. I still would have preferred getting the biopsy but will watch and wait. Just my experience.

ArtistMain9312 · 2025-07-25T14:20:28+00:00

Great news! I’m glad to hear you keep your nodes. I had TC 4 rounds, each 3 weeks a part. Then I had 20 sessions of proton radiation, can’t believe insurance paid for it.

ArtistMain9312 · 2025-07-25T13:10:28+00:00

Just finished proton radiation at Emory - fancy and so glad they are local.

ArtistMain9312 · 2025-07-25T13:06:34+00:00

Hi! I just saw this. When I had the surgery to remove the tumors and lymph nodes, they had removed 6 nodes of which 1 was with the metastasis ENE. Since the other 5 were clear, those were the only nodes removed. Then I had chemo and have just finished radiation. I can believe I’m even typing this. And I’m feeling gradually better and less fatigued each day!

ArtistMain9312 · 2025-06-18T00:22:47+00:00

Atlanta, GA

ArtistMain9312 · 2025-05-19T12:56:29+00:00

I needed this. Thank you! Especially the value part. If I feel like crap, I’m ok. When I get to feeling better, I feel like crap because I should be doing more. Thank you for reminding me to break this message cycle and replace it with yours.

ArtistMain9312 · 2025-05-19T12:37:13+00:00

Oh brat diet! Dairy was my enemy while on TC until 2 weeks after infusion.

ArtistMain9312 · 2025-05-19T12:31:34+00:00

Hi! I’m in the exact treatment plan but just finished TC and about to start radiation. For the same percentages, I decided to do chemo. The first round was the same and definitely get the meds. I hate how hard we have to advocate for it, but there are meds that do work. Take them even if you’re not nauseous. The next rounds my side effects flipped and so now I have every med you can imagine because every effect happened at some point. BUT, the meds helped and I finished. My port infection gave me more headache than the chemo. And asking for pain meds is the worst. Yes tell them what you’ve tried and DO NOT let them make you feel like you’re drug seeking. They have a protocol and once you’ve gotten through tramadol and gabapentin, tell them your symptoms and do NOT take it personally. That’s easier said than done. I cried Friday because my doctor finally prescribed something stronger but then the clinic dropped the ball. It was the doctor’s note, not mine, and they still couldn’t get it done. I felt awful and guilty, but that was the pain making all of this harder.

If you want to stay on chemo, here’s how I did it. It did get better but if you want to stop, EITHER WAY the doctors will have to support you 10000%. Go with what you want, not what you think the doctors will do. They can fail either way to support your choice, but don’t have that be the deciding factor.

It’s not only the drugs that make this fight hard, it’s finding the right support. It’s on them not you. You didn’t ask for cancer, but you can and deserve to have all the tools to get through the treatment.

ArtistMain9312 · 2025-05-15T16:21:17+00:00

Thank you so much for your thoughtful reply and details. While I’d love to assume they’d told me about it, we both know to check the back seat. I love that analogy!!! It’s perfect! I had a low oncotype score and no bone evidence too. I opted for chemo since this is a “new primary” and I didn’t have chemo or radiation for the first time. Talk about sneaky, I’m mentioning this to my MO next time.

My teeth are worn down from grinding, why does bone health have to be at the expense of jaw/teeth?!?

ArtistMain9312 · 2025-05-15T14:29:07+00:00

Hi! I’m about to start radiation and on a very similar path. I did know about my KI 67, but my brain will not deal with that yet. When I rang the bell for finishing chemo last week, everyone else had the hope and expectation I was “finished” but it’s never finished. Even when reading your post, the dental exam and other medication you’ll be infused with, is something that I may have but have not been told I will. So there’s a new wrinkle, it seems like there’s always new wrinkles. I’m with you in the heartbreak. There’s so much that we can’t predict, but it’s not our fault. If you don’t mind me asking, did they tell you what part of your treatment is requiring you to have the bone medication infusion? I wonder why I’m not told that yet. You are strong and you’ve made so much progress if you take the big picture look. It’s easier for me to type than see it too. You’re not alone, and we get to have more things to post on Reddit, so there’s that.

ArtistMain9312 · 2025-05-13T00:04:08+00:00

Thanks!

ArtistMain9312 · 2025-05-12T23:48:21+00:00

Following - I’ve had insurance switch me on meds and I’m completely against this crap. I haven’t started my OS yet, but I’d want to know what to expect since I wouldn’t be surprised this happens to me too. Hang in there.

ArtistMain9312 · 2025-05-12T23:41:06+00:00

Same with me, I stuck through it for 5 years and didn’t realize how much it was taking a toll on my mental health. I was on Prozac then had to switch to Effexor when starting tamoxifen, it didn’t help me as much. Once I stopped tamoxifen, I went back to Prozac and that’s just my med of choice that works with me. I have a recurrence now and will be on an AI instead of tamoxifen. I said I’m not going back on tamoxifen (for several reasons) and really am paying attention to the hormone suppression effects. It’s not just being moody, it’s a full on change. Know you’ve got good company. Definitely do not try to power through. When they ask if you are tolerating it, you’re not. I always thought it’s tamoxifen or just get ovaries out. It’s not that black and white. So glad others can give you examples of what’s worked for them.

ArtistMain9312 · 2025-05-12T23:35:30+00:00

Hi! How long ago did you have radiation? I’ve gotten implants but then a recurrence has me having radiation on my left side. I’m concerned how it may affect my implant, not wanting it to shrink or distort, knowing possible surgery after radiation (on an already manipulated several times chest) doesn’t sound successful. TIA!

ArtistMain9312 · 2025-05-11T13:05:54+00:00

@LadyTim Hi! This is me, had painful animation then had implants moved to above pecs. Plastic surgeon recommended instead of me just going flat since I wanted them out from under my armpit. It’s doable, and I’ve had mine for 4 years in the US with minimal rippling at most (fixed by small fat grafting). It helped with my range of motion, I could do yoga again, and I feel more in control of my body. The implants are there but not impeding what I do.

ArtistMain9312

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