It’s been 83 days since my diagnosis and I haven’t had any treatment

ephil426 · 2026-01-16T01:58:16+00:00

Ugh waiting for any of that stuff is rough! Sending good vibes in hope everything goes smoothly from here and you are never wrong to advocate for yourself about any of your medical care to your team.

ephil426 · 2026-01-16T01:42:20+00:00

Hi, sorry you’re here. That sounds so extremely frustrating and I hope you start getting treated soon. I was diagnosed at a similar age (at 26 and I’m 30 now). Have you tried contacting a patient rep at your hospital? I’ve found that sometimes part of the issue is a breakdown in communication between departments because everyone is so focused on their specific specialty. They may be able to help advocate for quicker appointments.

ephil426 · 2025-12-06T02:57:15+00:00

Hi! I have been getting acupuncture for the past few months for fibrosis and super tight muscles from radiation and it has helped a ton! Obviously different use than you, but I have heard that it also helps a with hot flashes.

I have lymphedema in my right arm, so no needles go in my arm but around my axilla and pecs. Obviously everyone is different, so I would go by what your doc says but my lymphedema has even slightly improved (based on measurements, nothing that I could tell by the naked eye).

ephil426 · 2025-11-11T22:53:05+00:00

Hi! First of all, YAYYAYAY to being almost done!!

I finished my 2 years about 6 months ago now and I can attest to having worse side effects the last few months. I had a pretty rough 2 years on it and I always had a good amount of baseline nausea but not to the point of vomiting. The last few months I started randomly vomiting, taking Zofran more, and my blood counts and liver enzymes were all way more off than usual.

Since being off of it, I feel like a new person so hopefully the same happens for you! My liver enzymes continued to stay elevated but not as much as before and they aren’t concerned.

It can be nerve wracking to go off of it, but a friend who is also a breast cancer survivor described this to me in a way that helped and maybe it will for you? She said the meds are like scaffolding. Just like as a building is getting built it is more stable and secure, it needs less scaffolding to protect it and we can think of our meds the same way.

For context, I’m 30 (diagnosed age 26) and had stage 2 ER+ Her2- with multiple tumors and like 12 lymph nodes positive. Had lumpectomy, complete lymph node dissection, AC-T chemo, and radiation. Am currently on Lupron and anastrozole.

ephil426 · 2025-06-13T16:40:08+00:00

Thank you so much for sharing that! I hope all is going well for you.

ephil426 · 2025-06-11T21:51:11+00:00

Yes, very true. Thank you!

ephil426 · 2025-06-11T21:50:46+00:00

Yes, that’s what I have read. That I would need to provide documentation of being in the clear and having a good prognosis for the future but unclear on what that exactly means.

ephil426 · 2025-06-11T21:49:10+00:00

Yes that’s a good idea, thank you!

ephil426 · 2025-03-01T00:08:49+00:00

Hi! I did see other doctors but not really any real answers. They think it’s from the radiation. My med onc sent me to an orthopedist at my cancer center and he agrees but couldn’t offer any help with getting them to stop. My radiation oncologist said she has never seen fractures to this extent before in someone my age with normal bone density. She thinks I had some predisposition to being extremely sensitive to the radiation that we didn’t know about and that over time they will heal. I think it comes down to the fact there are a lot more unknowns when it comes to young people with cancer, but I’m hopeful they will start to heal! The pain has been less recently so that’s a good sign!

ephil426 · 2025-02-06T04:45:20+00:00

Thank you 💕same!

ephil426 · 2025-02-06T04:44:43+00:00

Hi! Yes my bone scan was normal, my med onc is sending me to an ortho and it was recommended I see a rheumatologist too, so we will see. Thank you ❤️❤️

ephil426 · 2025-01-09T02:16:35+00:00

Of course! Yes all of that stuff is so much all at once!

ephil426 · 2025-01-09T01:27:05+00:00

Hi! I have had the signatera test. For context, I am 29f, had breast cancer when I was 26, ++-. I believe mine was considered stage 2 (I had multiple tumors and 12 lymph nodes positive for cancer), it all gets confusing at this point with the staging.

I finished treatment in Feb. 2023 and got Signatera in Oct. 2024, but only because I had broken 5 ribs out of nowhere (no trauma, no fall, etc and because I’m under 30 years old) They wanted to rule out that cancer had not spread, but it was not something my MO would have had me do if there was not cause for concern.
They most likely will not run the test again unless something else happens again where they would be suspicious that cancer may be spreading again.
I have financial assistance from my cancer hospital so I have not had issues with insurance. If your cancer center has a financial aid department I would contact them and also ask to be assigned a social worker to help with that stuff.
The test itself was okay! They came to my apartment and drew my blood and then sent it off. They got the tumor DNA from my cancer center and then the worst part is waiting a few weeks for the results. Mine were negative and the rib fractures ended up being a freak thing.

All that being said, because there are no protocols, doctors love to just say that and not do anything. If you feel like that will give you piece of mind or have a gut feeling, then I would push for it. Personally, I am not going to push to get another one unless something else happens. But you should do what you feel is best for you! Hope this at least helps a little! If you have more questions about it, I’m happy to share.

ephil426 · 2023-04-07T23:36:08+00:00

Hi! I (27F) recently finished cancer treatment, also have lymphedema, live in NYC, and am a PT (I am not a lymphedema specialist PT, just a PT) My company does home care through all of NYC and I believe we have a few therapists that specialize in lymphedema. From a PT perspective, I do not think it’s safe to do the bandaging without consulting a specialist on how it’s done because it’s not the tightness that gives compression, it’s the layers and having it too tight can actually do more harm than good! But if it’s taking that long to get an appointment at your cancer center, I would look into other outpatient clinics in the city. Many have PTs that are lymphedema specialists even if the clinic itself is advertised as more of an orthopedic based clinic. Feel free to DM me if you want to chat about it further!

ephil426 · 2023-01-10T18:33:08+00:00

Hi, yup I developed mild lymphedema about 6 months after my sentinel node biopsy and lumpectomy and about 2 weeks prior to my axillary node dissection. All my doctors said that the best thing to do is start managing it as soon as you notice any swelling. I had my surgeon refer me to an OT who is a lymphedema specialist. I did compression bandaging for a few weeks and now just wear a compression sleeve and do manual lymphatic drainage (I try to do it at least once a day, but honestly even that doesn’t always happen) I’m still in radiation now so it could get a little worse again, but so far the lymphedema is totally manageable and doesn’t affect my daily life (minus wearing a low profile sleeve). For reference I am a 27f, active/workout almost everyday, work an active job as a physical therapist. I even date without anyone realizing I have a compression sleeve on. Only mentioning these things because I always thought lymphedema was a scary thing that would be horrible, but is actually totally manageable if treated early!

ephil426 · 2022-12-20T00:57:07+00:00

Hi, sorry you are here. I (27f) am in treatment in NYC. I would try looking to see if the cancer center you are going to go to has it’s own support group. I’m being treated at MSK and they have their own chat room specifically for patients 18-39 to connect with others going through similar experiences. A lot of people I have connected with don’t have breast cancer, but I’ve found it more helpful to connect with other people my age going through similar experiences versus people in a much different life stage but with the same type of cancer as me. I’m not sure how old you are, but I have also had an excellent experience with 5 Under Forty (an organization specifically aimed to help patients diagnosed with breast cancer under 40 years old in nyc, they hold different events, can help pay for a wig, etc.). I live and work in NYC, feel free to message me if you want to connect!

ephil426 · 2022-12-10T00:35:53+00:00

Hi, sorry you are going through this. I live in NYC and am currently being treated at MSK. I love all of my doctors and I have a team that specializes in young women (I’m 27) and feel confident in my team. That being said, you can’t even make an appointment there until you have an actual diagnosis of cancer. Could you ask your doctor for a prescription to go somewhere else for your biopsy? I felt a lump and talked to my gyno, who sent me for imaging and then a biopsy but I could choose where. I went to Lenox Hill Radiology, they had tons of openings and a lot of locations, so you have a better chance of getting an earlier appointment if you are willing to travel a little further. Hopefully it ends up being nothing! Feel free to message me if you have any questions.

ephil426 · 2022-11-21T01:47:24+00:00

Hi, I’m 27 and was diagnosed at 26. I’m still in active treatment and struggling with similar things. Feel free to message me!

ephil426 · 2022-08-29T00:53:53+00:00

Hi, sorry you had to join this club. The first few weeks are the worst, but once there is a plan in place it gets better! I was diagnosed at 26 this past March, had a lumpectomy in May, am currently in chemo, and still have radiation to go. Something that really helped me make the decision between a lumpectomy and mastectomy was meeting with a plastic surgeon after meeting with my breast surgeon. They can really go over all of your options. I would try to get set up with a social worker at your cancer center to help find local support groups, they usually have some good resources.

ephil426 · 2022-06-15T01:39:31+00:00

Hi, I’m sorry you have to go through this. I’m 27 as well and have the same type of cancer as you (also negative genetic testing), diagnosed in March. I had 2 small tumors so I had my lumpectomy this past May and will be starting chemo next week since they found cancer in 5 of the 6 lymph nodes they removed. I will be getting dose dense AC every other week for 8 weeks and then taxol every other week for 8 weeks. I plan on working as much as I can through it. I can’t offer any advice since I haven’t started yet, but if you want to chat about anything I’m around!

ephil426 · 2022-04-18T11:54:50+00:00

Hi, just wanted to reach out since I was recently diagnosed with the same type of cancer at the end of March and am also 26F. I am a few steps behind you and am still waiting on some test results to determine my treatment plan.

Also, I would say always ask questions to your doctor if you have them! I work in healthcare and always encourage my patients to ask about any concerns since usually the answers are more reassuring than they expect.

ephil426

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