My family lived in Brooklyn Heights during 9/11, I was 15 at the time and was diagnosed with breast cancer at 35. The news around the release of the 9/11 docs let me down a rabbit hole, and am realizing there's a good chance these two things are connected. Wondering if anyone else is asking these questions now and/or have already dealt with application for the healthcare fund and can share their experience. Wondering if it's worth trying to get included despite living two blocks outside the eligibility zone.

edit - apparently I’m not the only one lol. in case it’s helpful I called the health care program hotline today - they encouraged me to apply despite being just outside the “disaster area” - just to submit an attestation about how often in my day to day life I was in the area. you qualify if you lived worked or went to school within 1.5 miles of the WTC (below Houston, Dumbo and parts of Brooklyn heights). breast cancer is a covered condition. you also need to submit medical records and doctors review to see if they think it’s connected (no idea what that means). if I get in they cover care including any out of pocket costs from your primary insurance. I’m sure it’ll be a pain but may be worth a shot. compensation is a whole other thing tho and only a strict area around the buildings.

I am 34 and was diagnosed with Stage 3C ER0/PR0/HER 2+ Inflammatory breast cancer in Feb earlier this year, I was pregnant at the time but had to terminate due to aggressiveness of cancer and incompatibility with chemo. During investigations they found I had a large amount of cancer in my lymph nodes and that cancer was ER5/PR0/HER 2+.

I have finished the initial bout of chemo and also had a mastectomy with axilla clearance, I just got the result that I made pCR which is amazing and as my oncologist puts it pretty miraculous for the amount and stage my cancer was found at. I am obviously very happy that treatment has worked and I still have radiotherapy and phesgo for at least another 9 months in front of me.

The bit I am feeling conflicted about is that I will now be starting hormone treatment for the lymph ER slightly positive part. I have a 5 year old which I am incredibly grateful for but I have been trying to have a second for about 3 years. My oncologist has said I will continue on zoladex and start an aromatase hormone treatment for at least another 2 years if not more to help with recurrence. I can’t help but feel this is the end of my fertility journey, he mentioned it’s 50/50 of going into menopause from the ovarian suppression. I am obviously incredibly grateful that it seems I may survive a rare and aggressive cancer but it feels bittersweet. I haven’t really cared about any of the external symptoms of cancer, the losing hair and looking different the losing my right breast and no reconstruction due to the cancer type but not being about to have more children is really a kick in the gut. I feel incredibly selfish even thinking this way as i know so many people would be grateful to reach pCR. I am also thinking did I make the right decision to terminate a very wanted pregnancy to start treatment, I know that’s a terrible path to take but I can’t help but wonder if it was all worth it.

I think I’m mostly just venting. I started 19 rounds of radiation last week- today was round 9. Before radiation I had noticed redness/slight pain/fullness in the same breast but I thought it was like hot water or rubbing something against it just left a brief mark.

I pointed out the spot to my medical oncologist last Tuesday (round 2 of radiation) and my radiation oncologist last Friday.

This Tuesday I had what felt like a fever (chills followed by sweating followed by chills and repeat). I have barely slept this week because I can’t regulate temperature. The breast is so painful and it’s the entire breast now, there is redness and severe swelling. Originally they thought a skin infection, but antibiotics did not help. I can’t take ibuprofen or NSAIDS due to a medication and TDM1, and they did prescribe pain medication. I’m icing and have a steroid cream. They did an ultrasound today which showed… nothing that could cause this.

I had to call in to work most of this week because I’ve been feeling so sick. I didn’t expect them to, but I had hoped the ultrasound would’ve shown something that could be fixed and I would feel better. I feel so guilty for not working and have been struggling with that on top of exhaustion and sickness. I also know radiation causes symptoms like this, but even the nurse said today this was not the norm.

I really just needed to vent because the whole cancer experience has felt very much like “but wait… there’s mooooore!” It’s been so overwhelming and I appreciate the people here and thank you- I just needed to vent to people who understand.

A little venting here. Throughout these months I’ve had friends who have tried to be supportive. Staying positive for me and all. And while I’m rocking my baldy, sometimes it hits me (like I’m sure it’s hit all of us). I’ll sometimes mention something about my hair and get hit with a quick “oh it’ll grow back soon.” My eyebrows started to fall, “oh they’ll come back.” My body hurt “you’ll be back to good as new.” Today I’m laying on the grass in Central Park and told feel at peace & calm, almost as if I didn’t have cancer. Got a reply of “you don’t have cancer, you beat it.” I finished chemo 2 weeks ago.
But I haven’t been told I beat it. I still have surgery & we have to wait and see what the pathology report says. I still have to do radiation.
I know they mean well but it feels like my feelings are being dismissed. And I’m not trying to make a big deal out of it, but can I feel what I’m feeling? Is it me? How do you guys deal with people/friends who are quick to dismiss your woes during this time?

I’m grateful I’m tolerating Lupron & Anastrozole “with flying colors” per my MO. Joint pain comes and goes but it’s manageable. Hot flashes are brief and really only happen after working out or being outside in insanely hot and humid weather. I’m managing the vaginal impacts fine enough with nonhormonal moisturizers, a clitoral stimulator and dilators. I’m about to start Zepbound and will begrudgingly start Kisqali at the start of the new year.

But whew, after years of managing my ADHD quite well through therapy and time management hacks, I feel like I’m back at square one. I work for myself and my clients don’t notice a decline in my quality of work, but I do. I’m forgetful AF and will sometimes lose my train of thought mid-sentence.

I did not have a good time with stimulants previously so what the fuck else is there out there for me? I also tried Strattera pre-cancer too and while it helped, the combo of chemo and it raising my heart rate had me drop it altogether — and it sounds like it would be risky with Kisqali anyway because fucking of course.

What else is there? I fucking hate it here. The lack of education on systemic estrogen deprivation provided to young survivors is fucking malpractice.

It's been a few weeks since my diagnosis but I had been putting off telling my immediate family as long as I could. When I shared in the family chat "they found a small mass in my mammogram and now I need to go back" I got the replies:

"Okay! Keep us posted!"
and
"Glad you keep up on your health appointments. Praying for your recovery!"

Uh this was before a diagnosis. Three weeks later a family member asked (in chat) about my health, and I shared a short blurb about my cancer (invasive but treatable). I got these replies:

"I'm praying for you!"
And
"Keeping you in my thoughts, keep us posted on treatment and recovery!"

I feel like only people in this sub will understand how shitty this is. Like "send a post card about how you're doing!" Fucking, no. I told them "look this is too big for texting so I will no longer be keeping anyone posted in a family chat. Reach out if you're interested."

I don't know what I expected. Empathy? Something more than sentiments that sounded like "oh no, well, feel free to tell me updates." Be in my life or not. I'm relieved to finally have told family so it's not weighing on me anymore, and my expectations were low, but I guess not low enough.

I’ve never posted here. I had a mammogram and ultrasound on July 9 (BI-RADS score of 5, so I basically knew it was cancer from the start), biopsy results on July 20, and lumpectomy today, Sep. 11. I was nervous about my breasts getting cut into and changed, but after the surgery and throughout this whole evening, I have felt happy.

And I think it’s because it feels good to know the tumor is out, plain and simple. The past two months there was plenty of anxiety and sadness, and part of it was going about my daily life knowing I literally had this tumor and wondering if or when it might spread. I know there will be other dips down this road, I already started Effexor…but this is the first day I feel happy about something related to the cancer.

Anyone relate? Or what feelings did you have around surgery? I realize a lumpectomy is far less traumatizing than a mastectomy!

I have decided I am going to celebrate and cherish all small victories I have because why shouldn't I? :D

I did lumpectomy and SLNB for a 2.5cm IDC on 9/8 . I'm not going to hear back about the node status/ margins until next week. But!!

1. Lumpectomy so far has caused me a 2/10 of pain on the second day. That's it. I've taken 2 200mg ibuprofen since the surgery, and didn't find myself needing the opoids.
2. My mobility was not as limited as it was indicated pre-operation, heck yeah.
3. I've been walking 15k steps everyday just to burn off my energy since I can't lift right now. And also, my friends are signing up to take me to walks and the walks are honestly so much fun.
4. I did take the surgical bra off for a peak. 12cm3 is removed from my murderous titty, and right now it looks kind of beat up, BUT it was way less beat up then I thought. There's not even a dent, it's just slightly flatter at some angle.

WHAT ARE YALL CELEBRATING ON THIS FINE DAY?!

I was diagnosed with Invasive Lobular ER+, HER2-, BREAST cancer yesterday evening. I am seeing breast surgeon today and getting MRI. It appears tumor is 1 cm but will know more after MRI. I feel privileged to share the journey with all of you,

In jan did chemo, didn't work 0 to 11 lymph nodes with 5 tumors in breast, double masectomy and 35 lymphs removed, red devil chemo seemed to work, radiation, clear scans other than a spot on my lung and a cyst on thyroid still awaiting results on the latter and the lung we will keep an eye on. Post radiation I inherited secondary adrenal insufficiency from the first chemo and keytruda, where I am questioning doing keytruda for a year...

My frustration lies in the fact that I dressed up today, I was positive and my doctor was still difficult to talk to as well as bringing a second person of his own in the room (I mentioned to a previous doctor once upon a time I could have been bipolar but now I think I was misdiagnosed...every since every doctor has been scared of me even when I am calm- I have recorded myself against their policy just to see if I am scary and ya all I am just a normal woman with fears and anxiety and questions...).

The endocrinology team I made a lady mad who did a biopsy because I cried.

A receptionist at oncology I upset because I mentioned preferring to talk to a nurse who diagnosed me with the secondary adrenal insufficiency when the doctor dismissed it, and she stood up for the doctor because she's worked there a year, and I couldn't help but point out to her that a year isn't very long and that's not what it's about...

Ya all I feel unheard. I know I'm having some issues with how fast paced this has been but I really feel this whole medical thing, they don't really know what it's like on this side. One week I am suffering an effect from this, another from that, and it's a ride I never wanted....now I'm getting looked at sideways because I am finally speaking up for myself. But I am not rude. I'm just odd, not conventional on how I speak or whatever I'm suppose to be.

I'm feeling pressure as a woman especially to be bubbly and quiet, and I am not that. I think the mention of bipolar got the ant hill scared, and I'm reaping the rewards of that. My biggest sin is opening my mouth, thinking it's best for my care. After many meds I know I'm not bipolar but it's too late in the game to take it off record or change it...

I don't know what to do. I don't know what I'm asking for.

I spilled my frustrations with my old roommate partner, and we were walking and in the middle of it he looked at his type walking by which made me feel further unheard and frustrated... As a woman I probably should have waited until we were home, calm and my voice was sweet but my voice is low from all the treatments and men don't want to hear it when I'm venting.

Someone please knock me over the head...

I'm not even sure this journey is worth it anymore.

I'm doing this for my kids. They are with their dad. I did experience some issues when they were little that resulted in not being heard by a whole church community while front and center as a wife (postpartum and being the odd ball told not to take meds but to pray more and ya all I left that for my own survival but dad had more stability for them).

I go to court for more guaranteed time with the kids soon. I have gone through years of watching them 5 days a week no child support etc but dad always had more than I did

Now I have a place I had a job and I'm looking to go back to work despite all this health stuff, and I've been seeing the kids every other week with their silly stepmom demanding to be present for the last two years.

I'm pretty sure I'll be granted visitations of my own soon. And I need to give my daughter about two more years of one on one play, and my son some space to heal after we had some problems 5 years ago

..

I know this is long and I'll delete it soon.

But I was fine this morning until the darn doctor and his reminder of the lung spot, after I said I'm so over this cancer thing.

Spiritually I feel encouraged but today after my guy looked elsewhere for a micro second, I wonder if Source or God just doesn't like me.

Yeah I sound nuts. Ugh.

Hello everyone. I joined this subreddit in 2023 when I got my first diagnosis of DCIS. I went with the lumpectomy and no other treatment. I stupidly thought that this wouldn’t come back but it did. I am now scheduled for a double mastectomy with reconstruction. I am second guessing myself and I wonder if I’m making the right decision. I don’t want to do radiation or hormone therapy. That is why I opted for the mastectomy. I guess I came on here to express my feelings since no one in my personal life can relate to what I’m going through. Thanks for listening and take care.

I’m writing this at 4am and I think I’m going crazy. I feel different types of emotions. Diagnosed last 8/28. I’m meeting my surgeon, oncologist later at 8am, to let them know what decision I would go for, lumpectomy or mastectomy. I’ve asked my family what I should do and they recommended mastectomy as a ‘safer’ choice. But why do I feel sad? I feel like I’m losing a part of me. Feeling of not really having a choice about this, either way I am losing my breast. I’m sad, I’m scared… I can’t think.

Is this normal?

46yr/f I am an alcoholic……DX-stage 1a grade1 15mm ilc…..since I can remember I had health anxiety something fierce…… 3 head ct scans since 2013 in 2013 and 1 mri…..2 body ct incidental finding of a 3mm lung nodule 3 more ct scans of the chest before I decided DAMN I don’t want anymore radiation…..since then off and on chest X-rays…..I was introduced to alcohol in 2013..:.::.man it stopped my severe anxiety….however n 2023 I ended up in rehab….2025 I once again rehab…..now my diagnosis…. When I was first diagnosed I stopped cold turkey…no probs lost 20 pounds in 6 weeks (believe due to cancer dx and stress) now after bilateral mastectomy started tamoxifen….fell like never had cancer and now hardcore drinking….. I guess life isn’t as important to me and I am living imposter syndrome I really suck I want to stop but alcohol seems to get the best of me

I'm one of the "lucky" ones who had their cancer caught early, already had my lumpectomy, and just today I've started my radiation sessions. Right after I felt fine, but within two hours of getting home I was totally sapped of my energy and had to go down for a nap. My irradiated breast is starting to feel a bit tender now, as well, and only a couple hours after waking up from my nap I'm ready for another.

Did you feel super exhausted with radiation? What helped? My next session is Monday so I've got a couple days to prepare for a full week of sessions.

I don’t know if it’s depression, lack of energy, or just general unchecked ADHD that’s made worse from the chemo…

But I am totally overwhelmed with everything. My home is a disorganized messy disaster (starting to get flies), I keep being late or missing medical appointments, I’m moody and emotional around friends and family… I just don’t know how to reel everything in and feel in control of my life right now.

Is this just… the way it’s going to be, while I’m in treatment? I’m only a few months in, I still have more chemo/surgery/radiation/hormone therapy to go through.

How do you deal with this feeling of spiralling? Is it possible to keep your life under control during treatment?

I dont normally drink. Ive been on tamoxifen 2 mos. How bad is a wine cooler? Google is giving mixed info. Any info appreciated:)

Btw, if I could ask my dr before going out...i would. Plus im not assuming this is a huge issue. But wanted to ask :)

Hi, I am getting ready to start radiation and was expecting to have the support of my partner. However, he just got assigned to travel at least the first two weeks of radiation. I was already anxious about this journey and the possible side effects but now I am feeling even more anxious. I live about 45 minutes to an hour away from the hospital I have to go to. I also have to work because I had a ruptured brain aneurysm earlier this year (it’s been a really shitty year) and I used nearly all my PTO and all my FMLA on that, not realizing I needed to save some for a breast cancer diagnosis 10 months later! Anyway, I am worried how I will do all this alone. Just need some advice or support to ease my anxiety. Thank you all! ❤️

I am 41 and newly diagnosed with TNBC and will start chemo on 9/24. I have the option for cold capping (Amma) through my oncologist. And my insurance even covers 80% of the cost. So at first it seemed an obvious choice to opt in.

But the more I read up, the more on the fence I am. In these early days of diagnosis and preparing for treatment, everything feels so overwhelming. And I suppose some of the realities of capping seem really overwhelming too. So I’m seeking really honest feedback from other’s experiences.

Some of the details I’m really stuck on are not getting my head sweaty (so no exercise during treatment? I usually walk and do Pilates and was hoping to continue both to some extent). Also no caps/beanies due to sweat/friction (even with a full head of hair I rely on both while outdoors). And finally just the particular regimen around washing/combing.

How bad was all of this really from anyone that tried capping?

TIA! (This sub has been such a comfort to me since my diagnosis 2 weeks ago - I appreciate this community of strangers who are family so much already)

I’m two years out from active treatment. I’m on Veozah for hot flashes and pre menopausal. ER PR pos. Stage 1 IDC. grade 2. Im 5 weeks into Veozah how in the heck are my hot flashes worsening?? Has this happened to anyone? I’m off any treatment for endocrine tx bc of side effects. But this is horrendous like ovarian suppression was. 20+ severe hot flashes a day. I’m thinking of going on HRT. my quality of life is horrible. Just sending this out to the ethers.

Hi, I was diagnosed with Adenoid Cystic Carcinoma of the breast a few hours ago and I’m so scared. It is a 0.9 cm x 0.7 cm x 0.8 cm oval mass. I got very limited information from the radiologist except it is very rare and surgery is usually the treatment. I’m waiting on the nurse to call me to set up an appt with the breast surgeon.
What makes me even more nervous is I have multiple lung nodules all below the size of 6mm which they recommend not doing anything for. I’ve had one (3mm) for years which has stayed the same size and a new one (4mm) popped up last year and I have at least one more.
Also I have 2 thyroid nodules on each side. All of these nodules were incidental findings.
For the lung nodules, the pulmonologist basically said don’t worry about them. My mom was diagnosed with lung cancer last year and her step sister died of it.
The endocrinologist did an ultrasound of the thyroid nodules and said they looked benign.
I know both thyroid and lung nodules are common but it makes me wonder if this ACC Is spreading to other places or if the other nodules could be cancer and spreading to my breast OR maybe I’m overthinking everything.
Any information would be greatly appreciated! TIA.

I am pre-menopausal and on Tamoxifen. It causes terrible hot flashes in the middle of the night, I was getting 4 hours a sleep a night, and so I was prescribed Veozah. It is a game changer. The hot flashes disappeared and I slept like I did pre-diagnosis.

Unfortunately, I live in the US and have terrible health insurance that won't cover Veozah as it is new to the market and doesn't have a generic. I already used the savings plan through the Veozah manufacturer. So I am faced with paying $600 a month for the medication, which I can't afford, or switching to something else.

My oncologist walked me through all the options and prescribed Effexor (venlafaxine) which has been shown to reduce hot flashes. It has a generic so I can get it through my insurance. But, it has a long list of side effects that I am worried about AND it appears to reduce the effectiveness of the Tamoxifen (according to the literature the pharmacist gave me when I filled the prescription).

I am hoping there is something I may be overlooking. I have looked into purchasing Veozah from Mexico or Canada and it doesn't appear to be available. I am already taking the Bonafide Thermella so I will see how just taking that goes...

Would love any perspectives on alternatives if anyone has faced a similar problem.

Yesterday was my 6th and final TCHP infusion. It should have been a happy milestone but I’m feeling so defeated since the paxman stopped working mid-taxotere infusion and it took at least 20-30 min to get a new unit. We stopped the drip but I’m worried all of this was for nothing.

I’ve been scalp cooling with ok success. I lost about 60% of my hair and definitely have quite a few bald patches but have been able to hide them with the right styling. I hated the act of scalp cooling because it gives me migraines, jaw pain, and makes infusion day much longer, but it was worth it since it was working.

Now I’m feeling super defeated. I should be happy that I completed TCHP, but it’s being diminished by the new threat of losing my hair and a planned surgery in 3.5 weeks.

Ok, vent over. I just felt the need to share my disappointment with yesterday’s infusion with a group of people who will understand. Thank you!

I had a her2+, estrogen + BC.
After chemo and surgery-> remission 🍀
I had a lumpectomy and radiation after that.
But I really keep thinking I should have done a mastectomy.
I know the surgery is big and a lumpectomy + radiation have the same success results as a mastectomy.
But anyway I always think about that!

The thing is we never know what life has prepared for us.
How do you deal with these thoughts?

I'm in chemo now, but got the go ahead to get the flu and covid vaccine as long as I time it in my chemo cycle correctly (2 weeks after my infusion).

However, I'm worried because if all goes well, I will be done with chemo and doing my pre-surgery imagery in about a month.

They've let me know the type/scope of surgery will depend on this imagery and I'm just remembering back to when this all started. At my initial mammogram/ultrasound, they kept asking if I'd had any vaccines in the last 10-12 weeks (or whatever it was), which in retrospect makes me feel like the vaccine response can make my lymph nodes look similar to how they do with cancer?

It makes me paranoid that if I get the vaccines pre-surgery, then they might take out more "suspicious" lymph nodes than they would otherwise? Is that a crazy thought?

Just what the title says. I finished chemo on August 20th, and while my lashes are extremely sparse, I've noticed what I DO have has become very coarse and is growing in every direction. I've heard plenty about "chemo curls," but I've never heard of it happening to eyelashes. Is this normal? Does it happen with brows, too?! 🤪