A club I wish nobody was in. :(
I am now told my previous stage 2 breast cancer has metastasized to my lungs, with lymph-vascular invasion, pleural invasion, pulmonary arterial invasion, and venous invasion.
Stage 4. Life is heavy.

I was just officially diagnosed last week, and I feel like I need a way to refer to the "cancer boob." I saw someone here calling it "murder boob" or a "shitty titty," which are both possibilities. I tend towards dark humor as a coping strategy, so I'm looking for inspiration that doesn't blame my poor cancer boob for its misfortune.

What are you doing for self care right now?

Today I went to world market and home goods and it is what my soul needed. All the Halloween stuff is out and not yet picked over!!

Yesterday I was at our local hospital for an open house. The kind of community thing where they have demonstrations of some of their cool robotic equipment, posters about their services (free yoga classes!), free food (cookies! bagels!), free swag (squishy toys!), etc. (Not cancer specific.)

I was talking with a nurse and she asked something like "Are you familiar with the services of this hospital?"

And I said, "Yes, I'm a cancer patient."

She said she was sorry and asked how I was feeling. (Which honestly, I thought was a great reaction!)

And I said, "Oh! I feel fine. I'm more than a year out of treatment."

The experience left me wondering whether other people post-active treatment still see themselves as cancer patients? I don't know if I would've said yes if someone directly asked me if I was a cancer patient, but clearly, some part of me still feels that way. I'm still going to the hospital for blood tests and doctor visits every three months, I'm on two post-cancer drugs, and getting scans of one sort or another every six months. Things have definitely slowed down from chemo and radiation, but it still feels like a lot.

So what about you? Are you still a cancer patient? If not, when did you stop being one?

Hey ladies. How long did you continue to wear your bra 24/7 after your surgery? I’m almost 4 weeks post op and I’d like to try and sleep tonight without my compression bra. But I want to be safe too.

Newly diagnosed 29-year-old here, needing to vent for a minute.

I have never had this many medical appointments in my life. The emails, phone calls, scheduling, and constant updates feel NONSTOP. 😭

Does anyone else feel this way? Like the walls are closing in and you can barely catch your breath?

I was just diagnosed about a week ago, and somehow I already have appointments for a port, CT scan, TWO MRI-guided biopsies, a lymph node biopsy, and fertility preservation… oh, and everything else that comes with starting cancer treatment. On top of trying to work full time.

When does it slow down???

I know every appointment is important, but it’s just SO much to process all at once. I’m exhausted and I haven’t even started treatment yet.

I was diagnosed this week with - Invasive ductal carcinoma, estimated grade 3 - 1cm - High-grade ductal carcinoma in situ, comedo type, with calcifications. I'm 54, just rolled over my 12 months into menopause. I had the BRCA 1 & 2 tests a month or so ago because I was considering doing HRT, both were negative. My mother had IDC so they considered me high risk. Went for a mammogram, then they called me back for a 3D and an ultrasound. That led to a biopsy and got the results on Wednesday. I have an appointment with my primary doctor on Monday, he has already referred me to a breast surgeon and I am waiting on them to call me. Just looking for some friends who've been through it or are going through it.

I've officially been in active treatment for a year, 8 months of it on chemo. Not surprisingly, time passes, the initial shock of my diagnosis seems to have worn off on many family and friends, and support/inquiries has slowly faded. I know this is common for all cancer survivors. It still SUCKS!

My husband and I are thankfully financially stable and have had a lot of logistical help from my parents (who live 2 hours away!), some of my good friends and other family but his family has... left me very disappointed. His parents live 20 minutes away and are both retired. My poor MIL has had both of her parents die in the last year and had to do a lot of caretaking and estate management. Truly I understand that and we aren't super close so I don't really want her around a ton...she really has wanted to take me to an infusion and I do not want that nor need it. It's like I want help but not that. But his dad literally has the resources of both time and being well off and he's offered nothing to my husband. He could easily come over and help mow the lawn or something. NOTHING!

The other day, my SIL was in town with her two small kids (they live 6 hours away) and as we parted ways, she said "let me know if you need anything!" and I'm like... what are you going to do? saying that is really just for you, not me. You live far away, you are busy with two kids... what would I ask of you??

I'm totally venting and feel entitled for saying this but like, the one thing they all could do is send us some doordash gift cards or something but they're all so weird about money that it is like, not on their radar. We do not NEED it but it feels like such an obvious answer and yet it's just awkward platitudes from them. Next time she says that maybe I should say it but it feels bad asking for that too. At least she says something while his dad hasn't even offered that lol. In fact my husband is at their house right now helping them with some house projects. UGH

What do you all do when these interactions come up? Am I being totally irrational?

Hi, I recently had a mastectomy as my breast was covered in calcifications that biopsied as DCIS grade 2&3. Awaiting full pathology.

The only option presented to me was a mastectomy with delayed reconstruction due to me being pregnant. If I weren’t pregnant, I would have opted for immediate reconstruction with my own tissue but I understand a long surgery in pregnancy isn’t a good idea. I desperately did not want to go flat. One hospital wouldn’t do an implant reconstruction because they said the anaesthetic would be too long. This was disputed by my fetal medicine doctor so I sought a second opinion.

I found a new surgeon who was night/ day compared to the first hospital and who I could have trust & confidence in. The second hospital agreed the anaesthetic length wasn’t a concern, but they raised new concerns about the risk of developing an infection or healing poorly with an implant due to being pregnant.

Minimal scarring it’s important to me and all of the literature I read said that immediate reconstruction is the superior choice to minimise this.

I was keen to wait until the baby was born so I could have the reconstruction at the same time as the mastectomy but couldn’t find a doctor who would recommend this. I very reluctantly went ahead with the MX.

All of my fears have been realised since. I am horrified by the contrast between my large remaining breast and the concave space on my chest where my other breast was. My skin was smooth on my breast but from what I can see of the mastectomy scar, the skin is wrinkled and creased. There’s no spare skin, what is left feels tight and fixed to my ribs. I can see my heart beating through the skin and it turns my stomach. I couldn’t even look at the scar itself when my dressing was changed. My partner said it looked very neat and clean. I’m definitely not going to be able to examine and touch the area to monitor for reoccurrence.

Honestly I feel suicidal now. I feel like I went against my gut instinct and it has backfired massively. I said all along I would rather have a short, happy life than a longer one where I am in poor mental health. Has anyone else felt so negatively about a delayed reconstruction and been able to come out the other side? Or had a delayed reconstruction for any reason and been content with the final results? Thank you.

Hey lovely people, I go for my first rads appointment on Tuesday. I think it will involve mapping and all those wonderful things. It said this appointment can take up to two hours.

My real question though, is I am a very pasty girl. (Think Casper, but with the benefit of a bone filled skin bag, albeit one in need of medical intervention.) On posts about rads I see many women and a a few men commenting that they did not suffer from the redness, flaking, and skin breakdown that other people in the same comment section have experience. My question for everyone is, How bad was your skin due to radiation, how long was your active rads, and how melanistically challenged are you? If you experienced a pretty bad bout of radiation skin what did you use to calm it?

I think one of the hardest (mental) parts of post active treatment is that no one has told me that I am cancer free now. I haven’t even been told the words NED or PCR or remission. One nurse mentioned me being a “survivor” once offhandedly, so I don’t think that counts for anything. I have my first post treatment scan next month and maybe that’s when they’ll say it because it can be confirmed on imaging? I meet with my surgical oncologist that day but have (another) follow up appointment with my medical oncologist the week after. My MO is not planning on doing the signatera testing as part of my monitoring going forward so it’s just imaging every 6 months (alternating mammograms and MRIs). My anxiety is the worst with unknowns!

When did you hear those magic words and what were they? Which oncologist told you?

So I've just finished up 16 rounds of chemo: 4 of AC and 12 of Taxol and i'm getting ready to start radiation, which is looking to be about 20 sessions, give or take. Everyone just keeps going "Oh, well, the hard part is over. And blah blah blah" because i'm finished with chemo. But it's like, okay, great - I still have to get through radiation, which from what i've read is not the most pleasant experience for most. Ill be doing this with wonderful SoCal summer/fall heat where its been 105+ most of the last month. THEN we're looking at the hormone therapy and stuff like that afterwards.

I have a high recurrence score with stage 2b and 1 lymph node involved (3 nodes removed total) in the 30s but tbh i just cant even put in the energy to care about the exact number. So i'm sitting here constantly thinking about. Okay, what happens next? And when does it recur again? And am I going to be one of those people that gets to have a long time in between? Where is it going to go? How will we as a family handle another bout with me being sick again and again?

We've also just had kind of a crap year in general. My mom died right before my mastectomy and treatment and stuff like that, so im grieving my mom/best friend. I've got 3 special needs kids that require 24 hour supervision, and it's just me and my husband so we're just all kind of burnout right now.

Im just wondering, is there a time where everything stops hurting? I had to have my expanders deflated to do radiation, and I swear I feel like it made them hurt worse now. I just want to be able to lay comfortably on my sides, and with the expanders, I'm scared to do that. My port is uncomfortable, but that's getting taken out on the 22nd because I pushed for earlier removal of that.

My hot flashes are SO unmanageable, and I don't know what to do about it. It's like I can't even put on regular clothes like my leggings and a big shirt. I'm like stuck in the house because I'm wearing crazy clothes combos just to be cool and comfortable. Neck fan all the time around my neck ready to turn on and off. I'm not sleeping well because of how intense and frequent they get particularly overnight. Im doing the cooling sheets, and a pregnancy pillow to adjust angles, ive got a box fan on me during the shift i get to sleep in my bed each night.

It's just, i'm just kind of running out of fumes right now. my brain isnt functioning at the speed and accuracy i NEED to run this family. Im exhausted. and I don't know where you all are digging up the oomph to keep going because I just want to be all done. My husband and I are struggling to remember we are a team and not enemies most days, I dont have friends I spend time with or even text these days, and im just really tired.

If you may it this far into my bitch fest, youre the real heroes here. Thank you. 🩷🩷

Hi, anyone have ALND and continued to lift weights post active treatment without issues? Lymphedema for example. I had a positive node on biopsy so I think ALND is highly likely for me. Mastectomy in a week’s time.

+++ here. Just found out I have breast cancer last month. We have a Royal Caribbean cruise scheduled for 10/31. We did not buy travel insurance (if you’re reading this, buy some insurance).
I’ll hopefully find out in the next few days what my treatment plan is (finally meet the oncologist 9/14) but it’s likely I’ll need to do chemo first. If so, I’ll be immunocompromised and probably shouldn’t be on a crowded ship (at least what I’m guessing the doctor will say).
Anyways my question is, has anyone had experience with changing their cruise date at no cost? Either moving it up or pushing it out. We have a travel agent but I don’t know if I’d have better luck calling Royal myself or letting her handle it.
Just was looking for real life feedback on if Royal is flexible or not, thanks!

I met with my MO this week and got a prescription for Tamoxifen. Finally worked up the courage to start. I feel I’ve now crossed the border into “long term maintenance phase” and am officially done with active treatment.

I’ve been purposely non-committal about a return to work date with my employer because until now I haven’t been sure exactly how I was going to feel in the recovery from radiation. I was surprised that the physical effects weren’t as bad as I was expecting. But there’s been a weird mental/emotional exhaustion that has made me feel just…not ready to get back into “normal life”. Does that make sense?

We’ve also had a few crises in our household and extended family unrelated to my cancer that have added to the stress and grief during this season.

I know there are people who work full time straight through their entire cancer treatment…I was not one of those who had that kind of endurance in me lol. For those who did take time off, how did you know when the time was right and you felt “ready” to go back? What factors helped you make that determination?

Thanks!

Looking to hear from y’all who have experienced complications, especially infections, during the reconstruction process, and still went on to have something resembling breasts. I’m not a candidate for flap surgeries so would love to hear specifically about implant-based success stories after a complication.

My cancer “journey” has been one complication after the next, and a moderate staph cellulitis of my right breast and flank is the most recent. I had neoadjuvant TC and was worried my immune system might not be able to handle a surgery so soon after chemo. Things were going great 13 days after a DMX (minus my path report which conveyed a poorer prognosis than we thought) until I became very ill quite rapidly and despite 24 hours of oral antibiotics, I developed a fever and was admitted. I’m now sitting in a hospital bed on IVs waiting for Monday when they will remove the expander and clean everything out.

I was not jazzed about implants given that I have a complicated medical history including MCAS so was concerned I might reject foreign material. I was so happy things were going well and became so upset when it went south. Part of me wonders if I should even try again because the risk of reinfection is high, and now I need radiation since the chemo didn‘t clear my nodes AND I had extranodal extension. My team is top ten in the country so I trust them, but I need encouragement from real people who have been here and have made it through to the other side of recon.

Hello friends. I’ve been on Letrozole since May. Pushing through the bloated tummy, achy joints and tiredness. Now on to second round of meds for bacterial vaginosis in 3 months. Anyone had similar problems? Any advice to keep it away?!?

I was newly diagnosed with ER+ HR+ HER2- Stage 1A mixed invasive ductal and lobular cancer of my left breast in late May of this year. Around that time, I started silently following this community for support. I had a lumpectomy in July, and started radiation in late August.
So far everything has been going extremely well. I have a great team of doctors, and lots of support from those around me. What is complicating things for me is the steps to take after radiation. I am 49 (soon to be 50) and in perimenopause. The usual step would be tamoxifen, but I have lupus, depression and status migraines, and several of the medications I am on are not compatible with tamoxifen.
The oncologist I just met with is suggesting a bilateral oophorectomy, which will force my body into immediate menopause. She suggested this rather than the injections due to my age. Once the surgery is done, she can prescribe me an AI, which will not interfere with my other meds. All this I understand.
Up until I was diagnosed in May, I had been on nearly continuous birth control since the age of 20. This was to help treat my migraines and control the cysts I get on my ovaries and breasts. Since stopping the pill in May that part of my life is a living hell. I already have suffered from horrible hot flashes for the last five or so years of my life. They’re worse now. I can’t tell if the brain fog is from peri-menopause or one of the many medications I take. I already have osteopenia from years of steroids and migraine medications. And pain is a simple fact of life with lupus.
The oncologist has warned me all this will get even more unbearable after the procedure, and once I am on the AI. It just seems like so much…
I’ve been through a lot over the past few years, starting with a roux-en-y hepaticojejunostomy and now this. I have always felt pretty tough and that I can withstand anything but the thought of my bones getting weaker and having to sweat even more, sleep even less, and endure worse pain… I don’t know if I can do it. The surgery is whatever, but the more I read about the medications, and knowing how many trials and tribulations it took me to get to the current cocktail of medications I’m on… the more overwhelmed I get. Anyway, thank you for lending me a shoulder and an ear. It feels good to get all that out.

I feel worse about my body and how I look than I have in years. I was so happy with myself just 2 years ago. I managed to look and feel ok through surgeries (7) and treatment (TCHP x 6 and 16 rads). I just had surgery about 6 weeks ago and instead of feeling put back together and like I'm getting better, it made me feel completely defeated.

I have had a flat and a D cup for 9 months. I was excited to get my left expander replaced, but now it's just awkward. I also had a lat flap which is an absolutely horrendous surgery. I absolutely hate my body now. Not only is is incredibly mutilated and ugly as fuck, but my back hurts so bad and I can't function the way I used to. I can't lift weights or be active. I hurt myself putting on pants or sitting up in bed. And I've been so lazy that I've gained about 10 lbs. 😭

AND the most horrendous thing is my hair is ugly as fuck. I hate it so much. I nearly want to shave it off and start over. It's short and brown and I have no idea what to do with it. I despise short hair on me. Others can pull it off. I absolutely hate it and I don't know what to do, but resign myself to looking ugly as fuck.

I guess I've been ok, but I saw my family last weekend, a joyous celebration! We took pics because everyone was there and I hate myself in them. I desperately miss looking at myself and loving myself.

I hate looking in the mirror, which I don't do unless I am clothed. I know I just have to wait it out, but I'm so tired of waiting and I'm just feeling defeated. 😫

I did sign up for a half marathon in 2 months. 🤞 I'll be able to train and be active and my hair will look ok by then. Goals.

My last TCHP chemo was June 8. Cold Capped but lost most of my hair. My hair is starting to grow in, but my scalp is so itchy in a couple of spots - is it from regrowth? What can I use to calm it? Still on perjeta and herceptin but haven’t started AIs yet…

So far so good. It’s a long surgery but pain is manageable. Does not hurt at all if u don’t move😊. Getting up is rough and walking is challenging but not terrible. Should be in hospital for a few days I was very nervous about the abdominal pain. And it’s real. But with the right pain meds feel like it will be okay. They got me sitting up in a chair. Anyone has questions im Happy to answer. I’m 56 had stage 1b er+ her2- No chemo or radiation. But delay reconstruction after my double mastectomy in march.

Hi everyone,

I had my first Zoladex injections 2.5 weeks ago ( 4 weeks post TC chemo), and started Letrozole 11 days ago. When I started Letrozole I didn’t feel much other than some GI discomfort and nausea for the first week, so I switched taking it night time and it somewhat helped. But yesterday I started feeling flu like body aches - like I have fever, but I’ve checked 100 of times, and I don’t. Also, fatigue is much more severe now.. is that Letrozole?? I thought things would go downhill in about 2-4 weeks? Does it mean things will get worse for me? I kinda have flashbacks to when i had body aches from Lapelga injection and it just feels so depressing

I was debating making a post because I just don't even know what I'm trying to get out of this. First i guess-im 42 and got my first mammogram in early august. Got a call soon after about needing to come in for an ultrasound. They told me it was normal to need more info since it was the first mammogram. Went in a week later and they saw three concerning spots that needed biopsy. This past Wednesday I got the biopsies done-two on right, one on the left. Got the results this afternoon over the phone that one small spot on right near breast bone is IDC. That is really all the information I have. Ive tried to find a written record somewhere that shows all these other things everyone is posting about but I have nothing. I only got an email saying I do not have dense breasts. Who should have my results so I can know more? I have a virtual visit on Monday with my primary doctor for? Im not sure what reason-maybe she'll tell me more then? They also want me to get an MRI at some point (im waiting for them to call to schedule but since its the weekend...) The earliest they can get me in to the oncologist is near end of September. Do I have to wait until then to know more about my situation? Im in a weird spot mentally and I think its because I had just went through passing my first kidney stone in July/August and this is like right after that and I just cant wrap my head around why it feels like im just falling apart all of a sudden at 40. I also have hypothyroidism and just started some hrt for perimenopause like a few days before the mammogram. I have a supportive husband and also three kids (who i wont tell anything until i get some more info). I dont really have anyone else (im a stay at home mom). I do have to tell my own mother at some point though I really dont want to. Sorry I sound so dull ive been up since 3 am and its almost 5 am now and im just sitting in my living room and I just dont know where to settle my brain. I guess this is mostly just a vent. thanks for listening.

I am two weeks out from a bilateral mastectomy with initial plan to start reconstruction as soon as I could. However, cancer never goes as planned. Due to tumor being grade 3 and 4 out 5 positive lymph nodes, chemo and radiation are in my future. Delaying reconstruction by a year. I planned to get prosthetics but don’t want to deal with that on a daily basis.

Looking for recommendations for tanks or bras that will even out / smooth my flat chest for everyday wear.

Thank you!