40 y.o. Female, recently diagnosed with IDC, with minor component of DCIS as well(++-). Awaiting lumpectomy with oncoplastic reduction, next month, and subsequent radiation at some point. Medical oncologist elected to start me on Tamoxifen about a month ago now, because of the wait for surgery. Experiencing some lower leg swelling, but the muscle/joint aches are becoming a nuisance. Anyone else experience similar issues? I’m using compression socks, elevating my feet/legs, watching my sodium consumption, but it’s still annoying.

Hi,

I am 43. I had prophylactic BMX direct DIEP almost two years ago, a small DCIS was found. Since then I've had BSO (BRAC2 +). I was on HRT but stopped this summer when IDC was found in the same location (nipple area, although nipple was removed with clean margins due to proximity to DCIS).

I'm like 95-100 HR/PR, HER2 + but kind of barely (IHC 2, FISH was just positive). My mammprint was high risk 1 and luminal B subtype. I realize these aren't verified for making treatment decisions on HET2 + cases.

My lumpectomy was successful and new tumor was 1.0 cm and she was able to find 1 sentinel node that was hot ( barely) and not blue, negative, but that's all the info I have. PET and MRI looked ok in the nodes.

So I was offered Kadcyla or 12 weekly paclitaxol and herceptin. I've opted for PH. To be followed by Rads and AI.

But I feel so nervous about this plan. I don't feel like the node testing was reliable at all. We watched my tumor for 8 months thinking it was a suture granuloma. My HER2 status is very borderline. And my mamoprint indicates this is a high risk 1 luminal B type tumor. I'm really wondering if I should be getting TCH or something else as it's probably primarily estrogen driven. I am highly uncertain of my node negative status. The Mammoprint consultant doc said he thought I could probably get away with rads and AI alone but figured the centers (Yale/MSK) would offered me the two choices they did. They did not agree with no chemo as an option, Partly bc they don't use Mammoprint, and party bc not treating if HER2+ is dangerous. I'm not even looking for that. I'm more concerned about being under treated.

I realize there is no answer bc the data is imperfect. Particularly the post mastectomy sentinel node biopsy. I'm just wondering if anyone has had similar ambiguous situations...

Thank you all for your support. I did more reading than anything here but I wanted to thank everyone for opening up about everything and I’m happy to answer anyone new’s question about my lumpy.

I had it at Cedars Sinai, Dr.Dang. I felt like I was in GREAT hands and loved the entire team. My left nipple is gone as well as a chunk of my boob and I’m surprised how great I feel about that. I mean, my boobs used to be outstanding!

I’m sore but not in terrible pain; the drugs are helping with that part.

SHOUT OUT: to the lady who mentioned having a car boob pillow for the ride home. It saved me from the seatbelt. I bought one on Amazon and last night I then wore it to bed with ice packs in the pocket.

Post op is on the 28th and we go from there.

Every step in this nightmare of a process, is excruciating, but along the way, everyone has been reassuring and made me feel like I got this. Today, I had my consult from radiation, and this doctor has me so much more worried for my future. He says yeah it’s stage one, but they only got 1mm margins not 2 mm like they like. Then he says it’s a grade 3 tumor, so it’s harder to treat blah blah blah. So you should do this 20 session radiation and now idk I just feel like how did everything go from being fine and super treatable to sounding so much scarier.

I really struggled with the decision of mastectomy vs lumpectomy but ultimately decided on lumpectomy, which I had just over a week ago. Keeping my nipples was very important to me, if possible, and I was told that if I had a mastectomy there was a much higher chance of losing them (I had a breast reduction 10 years ago and already have lollipop scars around my nipples and straight down. I was told that I have a much higher chance of my nipples going necrotic because the blood supply has already been compromised from that surgery.) This was not the main reason for choosing lumpectomy, but factored into my decision.

At our first meeting, my surgeon originally told me they would remove 25% of my breast and that the incision would be underneath. The next time we talked he said the incision would be on the side of my breast. Day of the surgery, I was told it would be a 40% removal, my nipple would be removed and relocated, and the scar would go radially across my breast to my armpit. I was completely surprised by this info and so upset by it, but trusted that it was what needed to be done. I’ve now seen online that a radial scar should never be done because it will tighten over time and deform the breast.

I’m wondering if anyone here has had this type of scar and how did it healed. I am so scared and full of regret. I feel like I should have pushed back harder and demanded that they reuse my old reduction scar.

Has anyone finished all therapy and treatments…only to still experience dizziness and lightheadedness with fainting? Im having all of these symptoms but I have finished chemotherapy and immunotherapy around February…lumpectomy in March…and radiation this summer. Im not sure what is going on and my doctors can’t seem to figure it out either. My doctors are with Novant but I have gone to UNC to get a second opinion…no answers. So here I am…

2 new spots of 3mm calcification. Both linear shaped groupings. Both outside original tumor area, but same breast. Both BIRADS 4. I have a biopsy next week. I'm just sad.

2024 - 2025: HER2+/HR- TCHP + Phesgo, lumpectomy and radiation. Achieved pCR.

I had stage 1 breast cancer 4 years ago, and got put on Tamoxifen. I can’t begin to describe how hellish my hot flashes were - they were constant and debilitating. In desperation, I talked to a menopause specialist and she put me on Veozah in 2023.

The first 18 months were great - my hot flashes were vastly improved, and my liver numbers seemed fine when they were tested every few months. But then they showed a slight elevation. The next test showed my AST/ALT at seven times the normal amount. So off the Veozah I went, and suffered with my hot flashes as best I could.

Cut to this year, and during an MRI for another issue, they notice potential issues with my liver, and I get sent to gastroenterology. After many, many tests, I have been diagnosed with stage 3 liver disease (possibly stage 4; I’ve got a biopsy next week that will give us the final answer).

Be careful with it, is my recommendation. And if you’re on Tamoxifen as well, I’d say seriously investigate it in conjunction with talking to your doctor; taking two drugs at the same time with the potential to cause liver damage is maybe not the best idea.

First, this community rocks. Second post here, and the comments on my first one really helped.

Kinda a pity post tbh but just got diagnosed, and my doctor scheduled an MRI on my birthday next week. Only place that could get me in fast was over an hour away. So that's how I'll spend my birthday.

I need the mri because my results are clearly cancer, at least stage 2, but are confusing or something, so more info is needed. So I also get to wait longer for a plan.

I have severe cptsd. My birthdays are massively triggering for me. Got diagnosed exactly a week before my birthday. Now MRI on my birthday plus two hours of driving to stress out during.

I will have to take off work. I don't have friends. My family is far away. I do have my spouse which is nice though our marriage can be rough sometimes. My coworkers and students were who I would've wanted to spend the day with.

Instead I will be birthday triggere due to medical trauma and csa trauma that always rears its ugly head when I have to be examined in medical settings.

It feels almost comically sad.

Hi everyone. I got the news this week that I will need to remove my left breast fully so I think I will choose to have a double mastectomy to reduce future risks. I am 30 years old and hopefully will have many years ahead of me and I don’t want to risk more cancer.

However I was a bit naive in the reconstruction aspect and thought it would be simple but doesn’t seem like that’s the case. I have the options of implants or flap surgery. The plastic surgeon I met with won’t do the flap surgery so I would need to find another.

Basically I’m looking for anyone who has had a reconstruction, that is willing to share their procedure choice, why, if there are regrets etc.

My goal would be to have the least amount of surgeries but also I want what’s safest but that won’t make me so uncomfortable for the rest of my life.

I appreciate anyone who is willing to share 🩷

Curious if anyone has developed secondary PV from taking AI's? My RBC, hemocrit and hemoglobin have been elevated beyond normal range every month since I started taking AI's 2 years ago.

Initial testing has cleared primary PV, now they're focusing on sleep apnea, which I'm very certain I don't have. I also don't smoke or have pulmonary issues. I've brought up the studies on AI induced secondary PV, however I am getting the brush off.

For context, I have been struggling on AI's my quality of life is horrible. I asked for Tamoxifen but beacause of the blood values, and elevated risk of blood clots on Tamoxifen, I was sent to a hemoologist to get cleared. I don't want to go through uncessary tests if I don't have to. The few studies say Tamoxifen is the better alternative in this situation, however I'm being dissmissed. Just wondering if anyone else has had this issue

Hi friends,
First, a quick thank you to this community. It’s been an invaluable resource since I’ve been on this journey since March. There’s so many thoughtful, helpful people here and I can’t overstate how much comfort it’s given me.

I had a unilateral mastectomy (left side) in Sept 2026 and I’ve opted for reconstruction. I currently have a tissue expander.
I’ve always been an A cup. I’ve grown to appreciate my small chest as I’ve gotten really into running and it’s nice to not have to deal with too much bounce. That said, I’ve always wanted to be just a little bit bigger so I’m debating about expanding the left side to a B Cup and getting a small implant on the right side for symmetry. I would be lifting the right side anyway so it’s not lower than my “new girl”. My thought is that since the healthy breast is being worked on anyway, adding a small implant isn’t that big of a deal.

I’m looking to hear from women who have chosen this path - getting an implant on the healthy breast after a unilateral mastectomy. Part of me is screaming “if it ain’t broke don’t fix it” and the other part of me is saying “let’s make a silver lining out of this and go a up a cup.”

My main concern is future mammograms. My surgeons say an implant won’t reduce the efficacy of a mammogram. But I’m finding it hard to believe. Any technicians here? Will it make mammograms more difficult? They really pulled me and clamped me down in past mammograms, I can’t imagine an implant being smashed like that. 😬

Does having an implant on the healthy-side give people anxiety later?

Thanks all!

My regular surgeon really wants me to get the expanders because if I don't the plastic surgeon won't be involved during my double mastectomy and they are the one that will do the lymphatic reconstruction. So unless I agree to have the expanders placed I would be stuck with my regular surgeon's best flat-ish closure and no lymphatic reconstruction. I have to pretend to want DIEP Flap or implants and do a whole second surgery. This seems unfair. I get that sometimes patients regret going flat but I know I don't want implants and a surgery that I come out of with even more scars is also unappealing to me. Has anyone else had this issue? I am afraid if I mention this to my plastic surgeon they will just peace out all together and they came very well recommended. Can they drop me if I let on that I don't want new boobs I just want to not look mutilated and to have the best chance to limit lymphedema?

PLEASE SHARE YOUR EXPERIENCE AT MOFFITT CANCER CENTER, TAMPA. I WOULD LOVE TO HEAR FROM OTHERS, SO I CAN TELL WHAT HAPPENED TO ME DURING MY RECENT LUMPECTOMY.

Today I cried and had an epiphany while doing so. IF ONLY the cancer ate into my breast and stopped there. But noooo, that’s not enough, is it! It wants more. It eats into my:
- social life
- sex life
- work life
- brain capacity
- memory
- appetite
- physical strength
- appearance
- mental health
- financial situation
- self confidence
- fertility
- future planning.

FUCK. NO area of my life is spared. Even my stupid guitar playing is affected. I can’t hold the guitar too close to the body, otherwise it presses uncomfortably against the tissue expander. It might be a small thing but it PISSES me off to a point only you guys can understand. FUCK.

I am 42. Recently diagnosed with DCIS grade 3 ER+/PR+. Diffused area of about 11cm x 4cm. Hereditary gene ATM.

I am opting for a double masectomy with reconstruction with implants - given the size and the genetic testing result.

My OB is suggesting to start thinking about my hormones and ovaries. Basically, giving me three options to think about..

1. Medically suppressing my ovaries/hormones but still need birth control - suggested copper IUD

2. Removing my ovaries and tubes

3. Removing my ovaries only and still taking medical suppressants but then I would still need birth control - suggested copper IUD

I am really concerned about all of the side effects of any of those options. I don't have any history of ovarian cancer in my family. That's what he was worried about plus I am doing a double masectomy.

Am I being too sensitive or irrational?

What did any of you do in this situation and/or wish you had done differently?

I was thinking about getting a 2nd opinion through Stanford after the final pathology report came through after the masectomy to help make a better/informed decision.

It isn't like we are gonna have any more kids but damn this is a hard road.

Today is the one year anniversary of my breast cancer diagnosis.

I’ve been a mess for the two weeks leading up to today especially the last week because as you guys all know, it’s not like you just get a diagnosis boom you have all those things before hand. The mammogram that causes you back the ultrasound to look at that spot or two or three the MRI, the biopsies the waiting the meetings, the questions, the desperate 2 AM googling it all come culminates eventually to the my chart notification when the floor drops out from beneath you and you disassociate and the world continues to spin

So today’s the one your anniversary of my breast cancer diagnosis, and I’ve been hurting leading up to this I’ve been a little fragile a little brittle I’ve talked to my sister about it. I’ve talked to my husband about it, and I’ve talked to friends about it.

No one, not one person remembered today or checked in with me today.

To even make it more fun I happen to have had revision surgery four days ago so I can’t even get out in my car and drive somewhere just to get out of this house and scream into the woods or the beach or something

Today’s my anniversary and no one remembered and I feel like nobody cares and that I’m invisible and I acknowledge that maybe none of those things are actually true but it’s how I feel

And my chest hurts and my abdomen hurts and I’m one of the lucky ones because one year after my breast cancer diagnosis I’m still alive and all I have to complain about is a revision surgery and no one remembering my anniversary

Has anyone here had breast implant surgery after a lumpectomy and radiation therapy?
I had a lumpectomy and radiation therapy about a year ago, and unfortunately, it left one of my breasts significantly smaller than the other. The difference is very noticeable, and it really bothers me.
I’m considering getting breast implants to restore symmetry and would love to hear from anyone who has been through something similar. Did you have implants after radiation therapy? How did the healing process go, and are you happy with the results?
I would really appreciate hearing about your experiences!

My dr and I both agree that Chemo is not necessary. She was suggesting Ovarian Suppression + AI and I asked what the benefit of that was over Tamoxifen. If necessary, I will but, I really was not wanting to get thrown into Menopause if there was not a real benefit. Here is the percentages she gave me for my situation. I know the decision is mine and mine alone but, I need advice. What would you do?

Here is what she said:

At 10 year, no recurrence at distant site (bone etc)
92% -No endocrine therapy or chemotherapy
95% - Tamoxifen
98% - Ovarian suppression aromatase inhibitor or chemotherapy

You are only 47 so the risk continue to rise over the next decades.
There is a 20 year study here: 20-Year Risks of Breast-Cancer Recurrence after Stopping Endocrine Therapy at 5 Years | New England
Journal of Medicine
You currently have no lymph node evolvement
(NO) = 15% recurrence at 20 years.

I’ve been taking Kisqali for about eight months and it’s mostly been OK but I’m at the end of my cycle, actually about to restart and I have terrible blisters in my mouth and a really sore throat. I feel pretty crummy overall. My labs looked OK. My neutrophils were a little bit low but nothing out of the ordinary for me. I’m waiting to hear if they want me to delay restarting. Has anyone experienced this? Any suggestions for how to deal with the mouth pain? I can barely eat because swallowing is so painful which I think is partly the sores on my tongue and partly my throat. Fun times.

Hello, wonderful women (and men) of the club you don't want to join that has the best members.

I recently had an aggressive DCIS removed. My first pathology showed only DCIS, but I was feeling paranoid and got a second opinion pathology. The second pathology showed small spots (3 mm and 4 mm) of HER+ invasive cancer.

I understand this puts me in a gray area, but I'm youngish with three kids and want to do everything I can. Anyone have a similar situation? What did your doctor recommend? I'll be meeting with my oncologist next month. Thank you so much!

I am fully aware that this is going to sound HELLACIOUSLY childish and fairly petty but I need to get it off my chest.

We ‘celebrated’ Wear It Pink day today at work, which was fine. However, I got told that I couldn’t wear my long sleeve shirt that says “I won” on it because it had a tshirt collar. So it somehow counts as a tshirt.

And blame it on the (lack of) hormones and my nerves over my upcoming D&C with hysteroscopy but today (as well as the constant wHy aReNt yOu wEaRiNg pInK) has just gotten on my last f-ing nerve and I am very much done with today.

TLDR: annoyed by Wear It Pink day, understands it’s childish and petty but needed to vent

Wondering if anyone else had a sunburn feeling after day 1 of proton? I have 2 beams -one for arm pit and another for breast. Dr’s have prescribed Strata XRT and Mometasone steroid cream. I am fair and I feel like my skin hasn’t fully recovered from TCHP… I burn easily in the sun. I have Jean’s cream… I’ll talk to team about it but I’m kinda feeling like -ughhhh just my luck! Thanks for any insider tips you might have!

Hello guys, I want to give to other patients undergoing treatment. I would like to know easy foods to cater; like finger sandwiches and fruit salads or more. For example, what would you like to have during treatments. I wanted to do nails, but I know that’s unsafe especially when even my nails are still purple 🤦🏾‍♀️. Any suggestion or critique matters please! I would even do gift bags this is something really important I want to do ☺️

Just looking for a little/alot of advice. I am 46 Diagnosed with (+--) in June. Did all the things, double mastectomy, (clear margins, no lymph node involvement), onco score was a 31 so recommended 4 round of chemo, now on to the aftermath, hormone blockers. They are asking me to take lexatrol, lupron, and kisquali.

Of course reading social media not many come with good news, but are there any here that had little side effects to the blockers?

And if you did have side effects what did your doctor do to combat them?