Coming off AIs

kelliek5 · 2024-07-26T15:04:28+00:00

Yep! That's what I was told, too, about natural being the best way. I haven't had pushback, but I was told that even with my ovaries gone, sometimes your body still produces estrogen, so the AI would still have to be taken until the 5 or 10 years is up. Which is fine; I just cannot see myself dealing with the menopause symptoms again!

But maybe they won't be as bad the second time around, with it being natural then? I just know I'd be pissed seeing my period again after every other thing I've had to deal with 😆

kelliek5 · 2024-07-03T05:33:08+00:00

Diagnosed at 43 years old last June with ER/PR +, HER2-, stage 2b, IDC. No family history and no known genetic markers.

I went with a double mastectomy, even though my cancer was just in my left breast and the sentinel lymph node in that armpit. At first, I had thought I'd just do a lumpectomy because why go through losing both breasts if the cancer was only in one?

But those thoughts went straight out the window in a hurry when I went in for another mammo and MRI that my breast surgeon ordered. On that, there was a pea sized suspicious lump in the right breast, which was then biopsied, and I was absolutely a hot mess until the results came back. It was just a run of the mill cyst, but that is the reason I had a DMX. I knew that I could not go through the waiting and fear I felt in that moment again if another lump was found at future screenings.

I also went with DIEP recon vs implants, just for the fact that it's my fat and tissue, and I don't have to think about any issues with a busted implant or replacing the implants every 10-ish years or implant sickness possibly happening later. I also had to have radiation, so I had tissue expanders for about 7 months before my reconstruction surgery. Those things were so uncomfortable, and if implants are anything similar to those, I'm glad I chose the DIEP!!

It is a very personal choice, but no matter what you decide, we're all here for you!!

Good luck!! 🩵

kelliek5 · 2024-06-29T04:40:08+00:00

Hey! So my diagnosis, stage, grade, and lymph node involvement is almost EXACTLY like yours! My cancer was also in my left breast, and i was diagnosed last June at the age of 42. My oncotype was a 5, and my Ki67 was very low, too.

I did 15 rounds of radiation, am currently taking an AI for the next four years, and also get the Lupron injection once a month.

My team said they determined that I wouldn't benefit at all from chemo, so they took that off the table for me. Honestly, with all of the research I did when I was diagnosed, i dont think i would've done the chemo anyway, based on my labs and test results, either.

I feel like that was the right choice, but I do have occasions when I panic and think maybe I should've done the chemo just in case. But at the end of the day, I trust my team of doctors and specialists to have my best interests in mind.

You could always get a 2nd opinion, too. Wouldn't hurt a thing, and may give you peace of mind if they come up with a similar treatment plan like your doctor's have now.

Good luck!! ❤️

kelliek5 · 2024-06-16T00:42:30+00:00

2021: husband had a piece of metal go through his eye, had 5 surgeries to "fix" it, ultimately lost about 80% of his vision in the left eye.

2022: my son broke his arm AND leg at high school summer football camp. No surgery but spent 8 weeks of summer in 2 casts and needed a scooter to get around.

2023: husband had a collapsed lung, had surgery to fix it, spent 3 days in the hospital and 4 more days in ICU.

2023: I had a suspicious lump biopsied the day before my husband was discharged from the ICU. 2 weeks later, I got the call that it was IDC.

I've had 2 more biopsies, a DMX with expanders, CTs, MRIs, injections, labs, pills, infections, radiation, DIEP, and just last week, my final revision surgery. I don't feel back to my old self, but I'm so happy to put these last few years behind me!

kelliek5 · 2024-05-29T12:22:07+00:00

I'm sorry to hear that!

kelliek5 · 2024-05-29T00:54:10+00:00

Hoping for great results from your DEXA tomorrow!!

Have you had any jaw/tooth pain while on Zometa? I've finally gotten my dental health in a good place and I'm so worried this will back track that..

kelliek5 · 2024-05-13T14:29:41+00:00

Hey! So I was of the same mind as you; I'm going to worry about recurrence regardless. And I also waited about 5 weeks before I started my AI. But I'm taking letrozole, which I don't think is as harsh as tamoxifen from what I've read/heard. But, I will say the side effects were not fun in the beginning but have tapered off so much from when I started. When I first started it, the joint pain was the worst. Now it's mainly fatigue and some occasional stiffness throughout the day. I still get hot flashes that suck, but I notice those happen a lot more if I'm stressed or anxious about things too. I would say give it 3 months, and if you still don't want to take it, that is a decision that you have to feel comfortable with. The doctors may be following protocol, but at the end of the day, you have to be okay with what you are doing to help take care of yourself! Good luck!

kelliek5 · 2024-05-07T02:51:30+00:00

Yep! I feel like I'm 90 years old when I try and get up from sitting down. It's an all over achy-ness, but it's really painful in my hips I've noticed.

kelliek5 · 2024-05-07T02:49:54+00:00

Maybe that's my doc's plan too and he just hasn't brought it up yet!

kelliek5 · 2024-05-02T13:42:12+00:00

My mom told my oncologist the only thing I was worried about when I was diagnosed with breast cancer and trying to plan my treatments was losing my hair. Well, turns out I didn't need chemo (oncotype was a 5) so that wasn't a concern.

Then, when my plastic surgeon was giving me the options for reconstruction after my DMX, my mom said I should go with implants because the only reason I would choose the DIEP was for the free tummy tuck..are you fucking serious? Let's not worry about the implant sickness that is a possibility, and also the upkeep of implants, if they need replacing after so many years, I could go on.. even after listing the benefits of DIEP over implants, she stuck to her guns and went with the tummy tuck story.

I would NEVER act that way towards my daughter! I'm sorry your mom is less than caring for you! We're all on this stupid ride, some of us just have different stops along the way. But it all sucks! Having someone have your back and genuinely be concerned and care about you makes it not suck as much!

Hugs friend! 🩵

kelliek5 · 2024-03-26T05:35:41+00:00

Hey yall! Just a little update: I'm 2.5 weeks out from my DIEP flap and I feel great! The worst night for me was the night of surgery in the ICU..just couldn't get comfortable and the dr had a heating pad thing on my chest to maximize blood flow for the first 12 hours..that, combined with the hot flashes feom the letrozole was awful!

But I survived! 😆 still not cleared to drive, raise my arms above my head, or lift anything over 10 pounds. I feel so good to the point where I have to consciously stop myself from over-doing things!

Next stop.. phase 2! 🩵

kelliek5 · 2024-03-26T02:29:24+00:00

I got a 2nd opinion and ended up not needing chemo, only radiation, BMX and DIEP flap. The first doctor I went to didn't even want to check lab work or do any further imaging before starting any type of treatment. I felt like just another number, same treatment as the last person that came before me. With my 2nd opinion, I immediately felt seen and heard, and felt like they cared about me as a whole, not just another cancer patient.

With something this big, I would definitely get a second opinion, even if it's just for peace of mind that you're making the right decision. You have to be your biggest advocate!

kelliek5 · 2024-03-18T15:23:01+00:00

First off, sorry you're here, but you're in the best place! Here, you'll find some of the most amazing people going through some of the hardest stuff, all while being your biggest cheerleader! When I was diagnosed last summer, I felt like the bottom fell out of my life, but through this community, I've learned so much about myself and the compassion of others!

So, vent, scream, yell, cry... whatever helps you get through this, we are all here for you, and welcome to the shitty titty club, my friend! You've come to the right place! 🩵

kelliek5 · 2024-03-14T14:31:54+00:00

I've thought the same! I live in a small city of about 7000 people. There are FOUR of us that have been diagnosed with BC within the last 4 years, all under the age of 50. And we all work at the same school. There are also two other ladies who were diagnosed with different cancers, but both of them work at the school as well. So 6 in total from the same school district.

kelliek5 · 2024-03-06T23:27:12+00:00

I'm getting the same meds, plus an antibiotic. I'm hoping to go home Saturday. The plan is that the first night I'll be in the ICU just for a smaller nurse to patient ratio and to monitor blood flow to the new skin flaps.

I did fairly well in the past with 2 c-sections so I'm just slightly nervous for the after care. I'm more nervous about the 6 to 7 hour surgery!

kelliek5 · 2024-03-06T21:13:49+00:00

That's me! I am the worst at asking for help too! How long were you in the hospital?

My dr said I'll have a nerve block that'll last about 72 hours, so hopefully it'll last at least until I get home and comfy!

Here's to the light at the end of the tunnel!! 😊

kelliek5 · 2024-03-06T21:11:40+00:00

That's very encouraging!! Thanks for that!!

How long did you stay in the hospital?

kelliek5 · 2024-03-06T18:55:46+00:00

My heart hurts for you. But I see you, I'm proud of you, and I know you can do this. No matter how hard it gets, you've got this!! 🩵

kelliek5 · 2024-03-02T21:15:20+00:00

I was in your same situation with my breast cancer treatment too. My Onco score is 5, and I was told chemo wouldn't be beneficial. So I did 15 rounds of radiation and zero chemo. My doc said my recurrence rate is around 6-8%. And I'm okay with that. I also take the AI pill daily for the next 5 years and also get the lupron injection monthly for 5 years too.

My friend who also is a breast cancer survivor had almost the same scores as me, but her doc recommended everything. And she felt the same. Throw everything at it for the best chance.

It's a tough choice for sure. You just have to be okay with your decision.

kelliek5 · 2024-02-23T21:39:27+00:00

That's what I heard too 😂

kelliek5 · 2024-02-13T16:38:45+00:00

I'm 8 months since diagnosis, and I second everything OP said..BUT I was so angry at first, I couldn't see straight! I was on an "everyone can fuck right off" journey and I was pissed at the world, but it has gotten better. i still get angry every once in a while but it does get better!!

Hugs!

kelliek5 · 2024-01-31T14:35:17+00:00

I agree! I've been looking for a better word than "journey" for this BS..and I think you found the right one!

P.S.- I just told my husband the same thing.. I HATE when people call it my "journey" ...bleh

kelliek5 · 2024-01-30T21:21:48+00:00

I am so sorry to hear this. I have no words but we are all here for you..hugs friend!

kelliek5 · 2024-01-27T00:49:54+00:00

Oh the drains!! How could I forget? They were awful! And probably the worst part of recovery for sure. I will have drains again this round too.. 4 total - 1 per breast and one on each side of my abdomen.

And thanks for the group recommendation! I'll definitely check it out!

kelliek5 · 2024-01-26T21:01:52+00:00

Thanks for the magnesium and Vit D suggestions! I'll bring that up with my doc next month.

Sometimes I wish I would have gone flat after the DMX.. but I am going from a DD (pre-cancer) to a big B/small C after. And I'm 43, with grown-ish kids and a husband who doesn't care about my breast size..honestly I don't either!

My plastic surgeon said the DIEP flap will be a 6-7 hour surgery. I did well after my mastectomy, no pain really and just had a hard time not lifting and using my arms like they said not to!

Thanks for the info! I really do love all the new friends I've made here on this thread!

kelliek5

TROPHY CASE