Best Of
Re: Aromatase inhibitors versus tamoxifen
After about 5 months Anastrozole made me very ill. Could not eat without feeling sick and things just hurt. Dr. even said things like , you will get used to it. They would not listen to me. The also ignored my swollen arm. After trying to work with them for almost 2 years with no improvement, I changed clinics. My new Dr. put me on Letrozole and sent me to a lymphoma Dr. for my arm. I am doing much better and am getting treatments for my arm. Delaying the move was detrimental and may even cost me years of survival. New Dr. considered my cancer aggressive since at a stage 1 in size it was already in my lymph nodes.
ask your Dr. about letrozole.
artwish
Re: Recurrence after 10 years?
Hi @citrinetiff
Very sorry you have made your way back here.
It really is frightening to have to deal with all of this once again when you thought it was over and in the past. It's a real gut punch. That being said, you don't know what you don't know. You need to take a deep breath. Take things one step at a time. Maybe this is 'something', maybe it is not.
If it does turn out to be bc again, you've 'got ' this. You've been here before. You are so much more educated then when you were the first 2 times. It really sucks that some of us have bodies that seem to really know how to allow cancer to thrive, but all we can do is fight back when it happens.
It's ok to feel angry and scared. You came to the right place for people to talk you off the ledge. We are here for you. We will help you get through this again if it turns out you need us. Try to put it out of your mind (hard as that is) until Tuesday and do something you enjoy to get past the waiting.
Take Care.
mandy23
Re: Recurrence after 10 years?
Hello @citrinetiff ,
I'm so very sorry to hear that you are in the position of 'unknown, but what if' again.
The fear is very real. And please know that we are here for you and with you. I've had a few things that have popped up in my own journey. One thing that I've been left with besides trying to navigate everything is anxiety that shows up. Alot. I do have a rescue medication that helps me deal with it and there are times I have to take it. This would be one of those times for me, if I were you. What it does for me is help me not dwell on the issue and be able to get through the day. It's the best way to describe it. Some days you just need to get through. I'm glad you have an appointment on Tuesday. But I hear you. You're not at next Tuesday. Yet. What is something positive you can focus on today? One of the lessons this has helped me learn is that in a lot of this, the only thing I can control is my own reaction to something when I feel so very lost. I'm sending you the biggest hug I can right now. Amanda
kotchaj
Re: Early Stage Breast Cancer - anyone on Letrozole and Ribociclib?
Hi. I have been on Letrozole and Kisqali for more than a year. I have had mild decrease in white count. I am noticing now some hair thinning but not sure it’s from Kisqali. Some fatigue too but not all the time. I have stage 2 b with positive internal mammary lymph node and stage 3 on path . So I figured it is worth taking the Kisqali . I did radiation last year but no chemo due to low Oncotype .
Re: DCIS Grade 2 Diagnosis
Hi @imhope, I'm sorry that you have to undergo a re-excision to get the 2 mm margin required for DCIS. This happens in about 20% of surgeries. There is a 13% chance that people who have this done need a third surgery meaning that about 2.5% of those who undergo a lumpectomy for DCIS fall into this category.
There is a surgical system called LumiSystem (LUMISIGHT, Lumicell DVS) which is FDA approved to help surgeons get the needed margins. Before surgery a fluorescent agent which is taken up by cancer cells is injected. The surgeon is able to use a scope to see if anything lights up and is able to remove that tissue before closing. My breast surgeon was using this when it was in the clinical trial stage five years ago. The injection was no big deal (I also had another tracer injected for sentinel node biopsy since I had IDC). There was some breast and urine discoloration for a while. I don't know how widespread the use of this is now but it sure seems like a good idea for DCIS where the margin size is critical. Good luck with your next surgery.
maggie15
Re: 💛March 2026 Chemo Check-In: You don't have to do this alone!💛
Hi all!
Made it thru the infusions. As I checked into the infusion center and entered the waiting room the positivity from the other patients was overwhelming. Three women greeted me “ Hi you must be new!” Due to they all had their scarves/caps on and I’m walking in with my frizzed out hair (because I’m in FL and it was so humid that morning). They shared their story, offered support , and by the time I got to my room I was calm.
Thankfully no reactions from meds- had a slight flutter at the then end of T- can’t believe worst part was the Suzie mitts-on my hands ! The feet were fine but boy it was cold - I got thru it.
Exhausted afterwards probably due to I didn’t sleep well the night before and was there 7hrs.
Went to work yesterday ( I am working through all of this) and my big question is - when does “chemo brain” start - I swear I was off my game all day yesterday. Little things here and there but I swear I have it!
So today is 48hrs post infusion - I just woke up which I couldn’t tell you the last time I woke up at 840- my wake up time is 5.
One piece of info that I received from my infusion nurse is that day 7-10 is when is the immune system is at the lowest. And she gave a great tip for mouth sores - coconut oil. She said to swish some around and spit it out. She said also to get a script for magic mouthwash. No one mentioned that . She was a wealth of information.
As I was finishing treatment one of the patients from the lobby peeked her head in she was leaving and gave me her number and said “call me anytime we can chat we are in this together”. I though that was awesome of her.
I will post as the days progress- those starting next week strike up a convo with the other patients it helped me.
@star713 - you could always take intermittent leave of absence- my oncologist brought that up to me ( never thought about that) I took a LOA for a month to recoup from my partial mastectomy total bilateral reconstruction. I just started my new job in September so didn’t qualify for FMLA - I had short term disability through the month of Feb.
Good luck to all next week! You got this! Talk with other patients and your nurse is a wealth of knowledge- she has heard and seen everything with her patients!
@amerli - I found 2 wigs this week it was actually fun trying so many on. I go back Tuesday hopefully I’ll make a decision. My scarves came from Headcovers - I’ll wear the wig going to work and scarves on weekends.
Have a good weekend! I hope my side effects will be manageable- my RN reminded me it’s accumulative- so this weekend may be fine but after the second roundit may not .We are all different.. keep posting!!
Re: 💛March 2026 Chemo Check-In: You don't have to do this alone!💛
@amerli Hi! thanks the support! I’m taking my infusion days off .. so yes work yesterday was ok but was exhausted when I got home !
My mind is “mushy”… examples yesterday , forgot where I parked my car - it was like a ten second brain freeze ; mid sentence in convo with a colleague I couldn’t for the life of me remember the word “loyalty” … reading an email didn’t register the “date” I thought it was tomorrow but it was the day before.
It was intermittent throughout the day yesterday. I’ll keep track of it … A social worker from the hospital infusion center met with me on Thursday and she told me to keep a daily log of anything everything happening - she said to keep a journal so that when you have your appts and your team ask questions you’ll have something to refer back to. It honestly is like you walked into a room and forgot why … then it comes to you.
I’ll keep an eye on it and let you know .. so far this morning I’m ok lol!!!
Re: I say YES. YOU say NO....Numero Tre! Enjoy!
I see the world being slowly transformed into a wilderness; I hear the approaching thunder that, one day, will destroy us too. I feel the suffering of millions. And yet, when I look up at the sky, I somehow feel that everything will change for the better, that this cruelty too shall end, that peace and tranquility will return once more.
betrayal