Best Of
Re: Birads 5 with calcification
Thank you all so much for the empathy. It’s so warm and welcoming here. Since my original post, I’ve had two more doctor’s appointments. I followed up with my primary care physician, who reviewed the mammogram and ultrasound results with me. There are two masses in my left breast, one measuring 3.5 cm in the upper outer quadrant, and another 2.5 cm located behind the nipple. The larger mass has active blood flow, which makes it their primary concern.
My doctor referred me to a breast surgeon, whom I saw yesterday. He performed a physical breast exam and told me a biopsy was necessary. He mentioned that, while the mammogram and ultrasound look suspicious, there’s still a chance the masses could be benign. But at this point, I don’t want any more false hope.
It’s been over a month since I discovered the lump. I took action immediately, yet everything has been moving painfully slow. The surgeon initially wanted me to wait another two weeks for a biopsy but I refused! This waiting game is pure torture. I’ve been overwhelmed with anxiety, and during that appointment, my blood pressure was 174/120.
I’ve tried to be patient, but I feel like the seriousness of my situation is being dismissed because of my age. If I hear “you’re young” one more time, I might break down. I’ve already come to terms with the possibility that this could be cancer. I’ve known deep down from the beginning. Even when my doctor thought it was just fibrocystic breast changes, I didn’t feel right. It’s one of those moments where you just know.
My main concern now is starting treatment before anything spreads, if it hasn’t already. Two days ago, I started experiencing pain near my collarbone. There are pea size lumps there as well, which could indicate the cancer has reached nearby lymph nodes. Thankfully, after pushing hard and advocating for myself, they moved my biopsy up to this Friday.
It shouldn’t be this difficult to get care.
Re: Were you diagnosed young (under 45) with breast cancer? We'd love to hear from you!
Thank you for sharing. It makes me hopeful. I am 36 and just got diagnosed. I dont know what stage yet. I have appointment with my breast surgeon on Tuesday and he will let me know. I am so scared.
Re: Were you diagnosed young (under 45) with breast cancer? We'd love to hear from you!
I was a young mom, wife, no high risk,no family history, demanded a masectomy after an excitional biopsy, found a second invasive cancer different type, wanted the most aggressive treatment, had chemo twice a month ,slow dense by vein at home for a year.
30 years survivor.
dreaming
HHS Prioritization for MBC
Below are two emails sent by myself and my awesome wife to the HHS team. If you arent aware, HHS has introduced a new program called the Commissioner’s National Priority Voucher (CNPV) which includes a number of terminal illnesses but not MBC at this time. Please send them a message and urge everyone to make MBC a national priority.
FDAOncology@fda.hhs.gov
OPT@fda.hhs.gov
seckennedy@hhs.gov
Dear FDA Team,
Nadia is my wonderful wife, the father of my children, and a cancer fighting beast. Our beautiful son was born in August of 2024. In December 2024 we learned that Nadia had breast cancer and in January 2025 we found out it was Stage 4. We have learned a lot in our six month fight. We have learned that the bulk of money raised through donations and gifts is allocated for Stage 3 and below research. As a matter of fact, only about 6% of total donations and gifts is devoted to stage 4 cancer patients. Additionally, we have learned that this is being treated as a chronic illness, meaning we will be dependent upon pharmaceutical companies for the rest of her life. The current state of research is being driven almost exclusively by big pharma and gaps are being ignored. Go to any metastatic cancer forum and the future seems to be to treat it as a chronic illness with no known cure. Furthermore, women are being diagnosed at younger and younger ages with breast cancer with no known cause for this shift. This is and should be unacceptable to everyone especially the oncologists who routinely treat cancer patients. Additionally, the number of people who are making a profit from Nadia’s cancer fight is absolutely the most disgusting part of the whole system of healthcare that we live under.
I strongly urge the FDA to:
- Include MBC in CNPV program as a top priority.
- Implement MBC research initiatives that prioritize effective treatment over profit motives.
- Revise the current guidance and standards of care at pregnancy for earlier detection of breast cancer. Conduct a breast exam at the beginning of a pregnancy!
The current state of research shows that the gains that are being made are in months and weeks. The average survivability is 5-10 years for MBC patients. These women deserve better. Please don’t ignore MBC, its impact, and its current state.
Nathan
Dear FDA Team,
I’m writing to you not just as a patient with metastatic breast cancer, but as a mother of two sons, one still a baby. I was diagnosed in late 2024, right before my 40th birthday, and like so many others with MBC, I live with the knowledge that my disease is incurable and will likely result in my death.
The newly announced Commissioner’s National Priority Voucher (CNPV) program could dramatically change outcomes for patients like me. Reducing FDA review times from a year to just one or two months gives real hope to those of us waiting for the next breakthrough to arrive in time.
Metastatic breast cancer kills 117 Americans every day. That’s over 44,000 lives a year in this country alone—many of them young women and mothers. We have waited decades for curative treatments. We can’t afford more delays.
Several therapies in development today show extraordinary promise, including targeted RNA drugs, cancer vaccines, oncolytic viruses, and precision immunotherapies. They deserve a faster path to patients. We deserve the chance to live and these medications might just give us that.
I urge the FDA to:
- Include metastatic breast cancer in the CNPV program
- Treat MBC as a national health priority, worthy of the same urgency as other terminal conditions
- Support companies working on MBC therapies to access this expedited review
Please don’t let metastatic breast cancer patients be left behind again. We are fighting with everything we have—please help give us a fighting chance.
Dying for a cure,
Nadia
Re: How has your BC experience changed you
i hate the words, journey, positive and new normal, they all seem c ontradictory and spin doctor speak........how can you have a new normal? Normal is normal, anything else is not normal and I want a normal body for a start, not the sore mutilated prematurely aged one i have now......i feel soooABNORMAL every day, three years on
Lily55
Re: How has your BC experience changed you
I really do not like the word 'journey' used here by The Mods. This word suggests an ending, a destination. For me the hell that has been a breast cancer dx never ends....
Re: The party’s over…
Been offline for awhile, Caryn: devastated to learn now what you're going through as your journey winds down. May hospice provide you with relief & comfort in the coming days. From one fellow NYC expat to another, may your transition be gentle and peaceful.
chisandy
Re: ER-, PR-, Her2+ Roll call
hi @catarina_fm thank you for asking. Here are my experiences thus far:
My scar is healing, discomfort is minimal; I look forward to being able to swim again.
I have had breast pain consistently and my ONC said at my 6 month follow up that it is “normal”. I am a year out from surgery and still tender sometimes, but it is lots better than it was, so apparently it does subside. I have very minimal reminders of treatment…my hair is still different texture and my scalp gets tender sometimes, but my hair is fully grown in.
Re: ER-, PR-, Her2+ Roll call
Hi girls, I’ve been a bit busy lately but I’ve been reading your messages.
@grammie2 thank you so much for the updates about Berta! We're rooting for her and hoping everything gets better quickly 🙏 It must be hard for her, being such a strong woman, full of energy and eager to go out and enjoy life. I'm sure she'll be back to her old self soon! I can't wait to hear that she's home and doing well.
How’s your hair? Mine is still very weak and sparse (you can still see quite a bit of my scalp), the longer strands are about 4 cm long, but I think I have less than a third of the hair I used to have. Eyebrows and eyelashes are the same. I don’t even bother with the lashes anymore - you can’t see them. I’ve tried using mascara but it doesn’t make a difference. As for my eyebrows, I have to draw them on with makeup every time I leave the house (which has been every day), otherwise it looks like I don’t have any. I do have some hairs, but they’re very thin and almost colorless (and I used to have thick black hair).
Compared to the ladies I met in person who finished chemotherapy around the same time as I did, I’m definitely the one who's doing the worst in this regard. Everyone else already has strong, thick, and long hair. It might just be a coincidence, but honestly, I still feel light-years away from that, and I just hope I recover. Of course, health is the most important thing, but this part affects us 😢
I feel pain in my breast, I believe I'm feeling more pain now because the sensitivity is starting to come back. I have a physiotherapy appointment in August to see if something is wrong. I also have joint pain and hot flashes, because I’ve gone into induced menopause, and I don’t know if I’ll recover from it.
@djschmidt1 and how about you? How’s your catheter scar? I can move normally now and can handle physical effort, and I’m using a cream specifically for scars. I really don’t want to be left with an ugly scar so close to my neck 😅