Best Of
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.
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: 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 😅
Re: Can we have a forum for "older" people with bc?
I went over today to meet with my plumber—alas, though water pressure from the city supply is fine, the shower riser is shot (dates back to at least the '50s) and they'd have to break through the dining room wall, which was just drywalled & painted, to get to it. We did without that tub & shower for almost 15 years, so we can wait till it's time to sell. Meanwhile, I found that the construction crew broke not only the sink faucet but also the toilet sear (those beefy guys actually cracked it). I had to pay for new tub spigot cartridges too, which are useless till we can get the tub & shower working again. I could have bought a faucet and had my plumber install it…for $450 plus the cost of the faucet. Nuh-uh: will tell the crew "you break it, you bought it." The fridges & stove still haven't been brought back, much less installed. (Wonder where they found my dishwasher, which they did reinstall and does work). And there's still no water line for the icemaker/water dispenser.
I spoke to the contractor/public adjuster today and he tried to weasel out by telling me all the stuff they did that was an improvement over the pre-fire conditions (new kitchen cabinets, black granite to replace the old peeling white Formica, and rehab the basement toilet & shower to bring it up to code). Not that I would make my guests descend into the grungy unfinished basement to take a shower, though the rehabbed bathroom itself is nice. (He claimed that code compliance for violations that pre-dated the fire isn't covered, but that's not what the specs said, and my policy actually has coverage for code compliance). Meanwhile, I discovered they'll have to adjust the shelves in at least two upper cabinets—they're too short to accommodate cereal boxes. It's just a matter of moving the brackets up a couple of notches, but it's still annoying. The top shelves are too high to accommodate anything we use regularly. The final list of what they allegedly did included not just blinds but even their type and materials. I brought this up over the phone but he's busy the rest of the week so can't meet with us till at least 6/30—I'm furious at State Farm for not covering our rent past then, because the house obviously won't be in move-back condition till the second week of July at best (and heaven knows when the city will even inspect & grant the Certificate of Occupancy)? State Farm says that's the contractor's problem, not theirs—and that it's up to me to get reimbursed. No way the contractor will fork over the extra month's rent—I'll be lucky to be able to hold them to what they claimed they already did.
Meanwhile, I found out that the $8500 we're paying FHS for July is not out of line for a 3BR/2.5BA house on the North Shore—2BR apts in Wilmette are going for $6K/mo., and in Winnetka $9K—those are apts., not houses. Bob still thinks we should make an offer (we wouldn't need a mortgage), but I don't need two sets of property taxes, insurance, utilities and maintenance costs. And I'm not sure the owner would want to sell his cash cow.
I was going to print out the attachments with the final tallies & specs to bring with me next week, but I think I'll just e-mail them to the contractor instead. Why should I have to expend the time, paper and ink cartridges? I can also just bring my iPad which can open the attachments.
Measured the master bedroom & first floor windows for shades & blinds. Thursday after my online shrink appt. I'll measure the rest, then touch base with the window decorator from Angi with measurements. Wish I'd taken pix of the way the treatments looked before the pack-out & demolition: the pack-out crew did, but their camera was stolen. Going over with Bob tomorrow to Abt & Hassle-Less (maybe the Dump too) to try out beds. Not gonna buy anything I haven't at least tried to nap on. But of course we can't have anything delivered till the rooms are empty. Out of desperation, I may even move the junk pile to the other side of the master BR so enough of the floor will be clear to accommodate a new bed (ideally, split king adjustable base).
Reading all of your post-construction adventures, I harbor no illusions about whether they'll clean up after themselves (despite the final tally containing charges for doing so). I will use my Ukrainian cleaning service—they're fast, thorough & reasonable and they do both move-out and move-in cleanings too. (They keep bringing me "tea bombs" too). I hope that going forward they'll be willing to come to Edgewater weekly. They're gems.
Meanwhile, the property tax appeal firm says that due to the specifics of the condition of the house, they wouldn't be a good fit for me because they're just a tech firm using an algorithm of "comparables." They suggested a law firm I had contemplated using, but also suggested I might be able save a fee by doing the appeal pro se now that the online process is more efficient than back in the day when I used to do appeals in my practice (hard-copy everything, including Polaroids).
Speaking of the heat wave, our ACs (central here, window units at the house) are handling it, though I may have to replace a couple. Not so for three hospitals in the city: Provident in "Bronzeville," Weiss in Uptown (where my late PCP practiced before decamping in disgust to St. Joseph's) and the sister hospital, West Suburban in Oak Park, where the Weiss patients were sent. What a nightmare!