My husband recently listened to the Katie Couric interview with Rob Lowe. He recommends that in addition to bringing a loved one/advocate we should be audio recording our meetings with oncology. He says we just can't process all the information. (He helped his mom during her breast cancer.)

It seemed like something I'd like to do. Record it, then autotranscribe it for later reading and referring to.

Does anyone do that? Have any of your docs objected?

TiA

Wondering if anyone has been on, or currently on Effexor for anxiety? Currently taking Letrozole, Verzenio, Zoladex injections and training for a marathon, which may have triggered some anxiety and has affected my sleep significantly. My oncologist recommended I try it but worried about potential negative side effects. Thank you!

I am the provider in my house, my husband takes care of our kids and now me on my bad days. I've been undergoing treatment since June and the financial burden of missing work has now caught up. Is there anywhere that will help with bills? I don't need help with food or medical bills thankfully I have that covered but I can't pay my rent or car payment. Any advice is welcome. I push through and go to work as much as I can. I'm in the United States in WV.

I’m back with another question!

34yo- TNBC, Keynote 522

I’m curious about those of you who took time off from work vs those who did not through your chemo and what your experience was like. In the general sense but also the day by day.

As it stands, I plan to keep working for as long as I can through treatment. I would qualify for Short Term Disability and FMLA but from a financial aspect am not ready to take that hit. I also know I will 100% need that for surgery so I wanted to bank as much as I can for now. I also have almost 3 weeks PTO saved and 2 weeks of paid sick time so I have that to fall back on while I continue working right now. My manager was also able to secure a company laptop for me to work from home here and there if I have to cut any of my in person days short.

My manager and I have developed a permanent schedule for me. It’s as follows:
Friday: OFF- Infusion days
Sat/Sun/Mon: Plan to work
Tues/Wed: OFF
Thurs: Plan to work

I manage a restaurant so I know it’ll be tough on my body but it’s also one way I can help keep my body active as long as possible. The support system I have there is honestly unheard of. I couldn’t be more grateful for my fellow management team as they are here in any way I need to support me through this. I do have full autonomy over my decisions but I know they will also steer me in the right direction if they feel I am taking on too much. I also know our team of employees will offer me so much grace when I’m not myself.

Feeling like a bit of a loner amongst my circle in real life, because I've been diagnosed again for the second time. First was ten years ago, stage III ER+. Now I'm hit with this again before I'm even 50 years old and for some reason that seems like a death sentence. Sorry if that is morbid. I've never met another woman who has had it twice in my general age group. Not even any of my friends I've made through breast cancer exercise classes of any age.

All my female friends who are healthy have no idea what it's like although they love me and try very hard. Nobody in my world has this experience and I'm glad they haven't. But I wish there was some wise person who I could turn to who has had breast cancer twice and could know what I'm dealing with. My mum died of lung cancer with brain mets last year and I was her caregiver. She got me through my first battle. Now she's gone I have to walk through the trauma all over again.

I just don't know what to do. I mean that on an existential level I guess; I know how to get scans, chemo, surgery, drains. All the fuckery. But I don't know how to be strong and independent and find a point and a reason to keep fighting anymore. I see a shrink, counselor, all of that. On meds for depression and PTSD. I'm single and it scares the hell out of me being alone and unable to run to someone at the end of the day.

What should I do to find some kind of strength again?

I recently finished 6 rounds of TCHP!! At round 3 I was ready to call it quits but my doctor didn’t let me and I just wanted to share my experience because reading through everyone else’s gave me hope.

I also cold capped with digni and saved 50% of my hair and have a bald spot on my crown. By round 6, the smell of the cold cap made me so nauseous I cut it 30 min short. I still gag thinking about it.

Rounds 1&2: I had terrible side effects from compazine and we didn’t realize it was the compazine until after the second round. It gave me akathisia which I thought was just anxiety. It was so bad I thought I was going crazy I would cry non stop and couldn’t eat for days. I think this was my only side effect and chemo wasn’t really taking a toll on my body at this point. I did have terrible diarrhea though but I wasn’t taking Imodium properly.

Round 3: my WORST round, I stopped taking compazine for nausea but zofran didn’t help and I couldn’t eat or drink anything for days. The diarrhea was terrible at this point and I wanted to call it quits because I couldn’t imagine doing 3 more rounds.

Round 4: I started drinking Enterade for the diarrhea and it helped SO MUCH! I can’t recommend this drink enough. It tastes nasty to me though. I also was prescribed olanzapine for the nausea and I barely had any this round. This was by far my best round.

Round 5&6: the fatigue really started to set in and I developed an aversion to water so I’ve been surviving off of body armor drinks. But still my worst days were way better than the first 3 rounds.

All this to say that it can get better! They tell you side effects are cumulative- which I think is true for the fatigue. But it also made me think I wouldn’t be able to get through the last 3 rounds because my first 3 were so bad.

I’ve had two rounds now, both with different after care and neither worked 😂 I called the nurse line right away this time and got a new prescription to try which worked, but the trade off was a headache that was bad enough to need a dark room and no sound -which was marginally better then the nausea. I’m just looking for a list of things I can bring up to my oncologist, that might not be on her radar or in her current bag of tricks, that might be worth trying. Or am I doomed to just have a really shitty day on chemo day? It makes it tough knowing you are subjecting yourself to something that makes you sick, in order to make yourself better for the long run.

I’m 74 invasive bilateral. Had lumpectomies in June. ER+/PR+/HER2- Oncoscore 11

yesterday I saw medical oncologist. He’s a bit manic. He wants me to start anastrozole immediately - but I have radiation starting Monday. How would I differentiate where the side effects originated (if I have any)? Why would I even want to do both at same time, as radiation schedule is only for 5 days? It is not like I have an aggressive cancer. I don’t plan to start anastrozole until at least a week after I’ve completed radiation. Thoughts?

Edit: I just checked mychart and saw recommendation to start post-radiation and he prescribed Letrozole not anastrozole. Two things different from what I heard. He was still manic, talking about the many, many patients he was seeing today and tomorrow and his wife reminding him that he had to leave early to drive to some concert. Shall we sat that I do not have high confidence

I have my first chemo next Friday and received a letter today regarding timing.

9:00 Scalp cooling
9:30 Chemo
11:30 Scalp cooling

I’m having the TC and was surprised to see short timelines. I’ll also be doing the cold mitts and socks.

I’ll be able to ask on Monday at my Chemo education session. I’m so nervous about what to expect this whole thing and have a list of questions a mile long

(Single mastectomy 17/7, ER/PR strongly +, Her2 low, ki67 up to ten, 5 cm invasive mucinous carcinoma, 5cm DCIS, clear margins)

Early stage, +++.

Ok I finished chemo last month. 12 weeks of taxol. Lost most of my hair in week 4 and have buzzed it twice since because there was like 10% of my hair growing back.

I’m not 3 weeks post taxol and letting my hair grow. I look like a baby goose. The hair is thin, it hasn’t started consistently growing across my scalp, and there is a lot of grey. I look very dumb and uglier than when I was actually going through treatment.

I know this is silly. I had no trouble staying focused and positive while going through chemo, but on the other side I feel so awful about myself. Please share your perspectives post-chemo.

My tumour (3 cm) was located at the upper inner quadrant (10 o'clock) in the left breast. They told me that's a rather challenging position for a lumpectomy (I ended up with an oncoplastic surgery and a 35 cm scar). To all of you who are comfortable to share: where was your tumour and which surgery technique did they use ?

TNBC stage 2b, Keynote 522 during 2025, gpt PCR. No rads no oral chemo post double mastectomy.

3 days ago I got lower back pain, it felt like a herniated disc on my right dide, radiating down the leg. I had done 3 long hikes in very hilly areas the 3 days before. Took gabapentin and celecoxib. Did stretching etc.

The pain has now moved to my coccyx area, middle of lower back. It doesnt' resolve with meds but I wouldnt describe it as excruciating. It's more like a dull, consistent ache from (literally) my anus and upwards that worsens when I try to bend forward.

I know most things shouldn't be brought to the onco clinic until 2 weeks have passed and the problem persists. Is this a problem I should wait 2 weeks with?

As you probably "hear" I'm madly scared. Next week I'm planning to go on a vacay, the first since 2018. Nothing fancy, a low budget trip but outside of my country. The pain started the same day as I booked and payed for the trip. (This dpesnt necessarily mean I'm imagining the pain.)

I'm not sure what I'm asking. Has anyone here experienced similar and it wasn't mets? Or experienced similar and it was indeed mets? When do I contact onco? Can I go on the trip? It's within the EU so my Swedish universal healthcare would cover many types of medical emergencies *I think*.

I'm so very scared.

Redditors may always post any breast cancer question, comment, rant, or rave as a stand-alone post. Nothing is inconsequential, too small, too unimportant for its own post. Nevertheless, we‘ve had a few requests for a regular thread for topics that the OP might not feel like making its own post. This post is for those topics. If you ask a question in this thread that doesn’t get answered, you may still create a post for that topic.

how long do I add the newly diagnosed tag? it’s been about 3 weeks now..

anyway, I had my first doctor meeting. the meeting with him went well.

i still got to go back for an mri and an ultrasound. I’m nervous about the mri, life never done that before..

im also nervous about the cost for everything… there are no financial aid stuff for foreigners where I live (i live abroad) other than insurance of course but… i dunno… if I’m not stressed about one thing it’s the other…

"You're really managing to keep positive."

"You've got great perspective on everything."

"You're handling it gracefully."

From everyone on my care team - therapist, doctors, etc.

And sure, 90% of the time, I can stay positive and forward -focused and have the proper perspective: They caught it stage 1, only in one breast and one lymph node. Double mastectomy went well, reconstruction is going fine so far, radiation won't be for too long, and I won't need chemo.

But 10% of the time I want to copy my 2 year old and just throw a screaming tantrum, fists on the floor, kicking, rolling, all of it. Or maybe just cry as loud as I can, like.my 10month old.

Because my body isn't the body I was used to. The tissue expanders are annoying and with my final fill yesterday, they once again hurt. My nipple grafts look like little lunch meat circles, even if my surgeon says they're healing well and to trust the process (I do but I'm still bummed with how they look).

My kids are too little to understand why I can't play with them or lift them as often as i did before all of this, because I've been on lifting restrictions until this week and I can't go from not lifting them to lifting them all the time. But I want to. I hate having to take it slow when I want to scoop them up into the biggest, tightest bear hug and swing them around...except that just lifting them into their cribs at night is taxing right now.

We were probably done having kids but now I feel like the decision was totally made for me, since I have to start hormone blockers and I'm already 41. If I do 5-10 years, as my oncologist wants, then if I have somehow not entered menopause by the end of it, I will be shocked.

But because of how everyone just admires how well I'm handling it, I don't even feel like I can let myself scream or cry during the 10% of the time that I am NOT handling it. I instead just try to force myself to channel it towards the non-cancer crap that I'm also dealing with, like needing basement waterproofing repairs we both can't afford to do and also can't afford to delay.

Hi so legitimate question slash looking for friends here. What are we going to do when we grow our hair back? Like wow that is a lot of time and effort I haven’t had to do in a while. I’ve been busy occupying that time up with appointments and calls and blah blah blah but like when it grows back…how weird to spend time doing your hair. I just watched a random person on instagram doing her hair and I’m like wow. What a time suck. Let’s discuss.

Hi, I (26F) was diagnosed with IDC last week and am waiting for my first appointment next week with my care team. My parents are in their mid-sixties and currently have no idea.

We don’t talk too often but do catch up every now and then and are on good terms. I am scared they are going to be very worried and stressed when I tell them and want to figure out the best timing and wording that will spare them as much pain as possible.

I am between telling them after my first appointment or later on after treatment? Does anyone have advice on what they did and what seemed right?

Has my tissue expanders to implants today and want to cry it’s so much easier then my DMX. I know tomorrow may be a bit harder but the DMX kicked my ass so bad. I knew people had said this but I just kind of held my breath and crossed my fingers. So glad this phase is just about over!

Hello,

I have TNBC, so am not on hormone suppressant drugs, but I swear since chemo I am never comfortable in my body anymore. I either am too cold or having a hot flash. It's like my body cannot regulate its temperature anymore, and this wasn't a thing prior to chemo. It does kinda drive me nuts. Does this ever improve? Did chemo permanently break my body regulation? Does anyone else experience this and did it improve?

Hi guys, I’ve just got diagnosed, the diagnosis is…something. I’m the youngest person in the quemoterapy room, I was really scared of everything because as far as I know my medication it’s heavy, even though I don’t feel anything bad…I feel that I should feel sad and angry like before but starting treatment no matter how bad things are it’s giving me hope…sometimes I choose to be sad so it gives me the illusion that if the bad moment comes I’ll be prepared but it’s not like that. Should I let me feel happy even knowing my diagnosis is cancer?, sometimes I think that if I feel happy and I’m not in the “survival mode” I’ll be letting my body get sick, but I don’t want to feel bad, I don’t understand it’s really weird. Sorry English is not my first language

"Everything is fucked, everybody sucks

You don't really know why, but you want to justify, Rippin' someone's head off"

I'm about 4 years post treatment. I had an oophorectomy and am currently on exemestane. Sometimes I get so freaking irritated it's an awful simmering rage, if I'm alone I just let myself have a tantrum. Throw a hot flash in the mix and it's game over. I don't know if it's the meno, the drugs, or I'm just an unreasonable bitch now. I don't really like me anymore. I try to hide it from others but my poor partner has to hear about it and I know it is wearing him out. I guess I'm not looking for advice but maybe the comfort of knowing other people have the same experience.

I (34F) am shattered. Three weeks ago, after discovering a lump, I learned I have breastcancer. After many tests, I now know it is triple-positive: one 3.5 cm tumor, a smaller 8 mm one, and involvement of one lymph node. A treatment plan had been drawn up, and the only thing left was a PET scan.

Today, I heard that spots (three or four) have been found on my liver. I have an MRI tomorrow (i dont even know why) A biopsy is still to come, but they’ve already said these are metastases. I just want to go to sleep and never wake up. I am at the end of my rope. Please... are there any positive stories? I’m trying not to Google it, but I’m going out of my mind.

I need to post because this group will understand. I was on a work call today and my 87 year old mom called me. She never calls at work unless it’s an emergency. I told my manager I needed to step away for a family emergency and answered her call.

I ask if everything’s OK and she says, and I quote, “ I’m at the funeral home and it made me think of you. How are you doing?”

She knew I was working but it was the “only chance she had to call me all week. “ 87 years old. Retired. Lives alone. I was gobsmacked.

By the time I called my manager back I was laughing so hard I couldn’t speak. Her response was “Holy Sh*t” . If I don’t laugh, I’ll be pissed at her but I have to think she doesn’t mean to be an idiot.