hello, recently diagnosed with dcis grade 1 noninvasive but a second spot was found after biopsy when a breast mri was done. is it possible to get ki67 for dcis? i asked if the biopsied area had been tested for this and both doctors i’ve consulted with said they didn’t think it could be done for dcis but i thought id seen mention of scores here with dcis is that possible?

i’d like to know how much of a rush i should be putting on making my decision - genetic testing all clear, i could get the mri guided biopsy on the second spot found but that won’t be until early january and then depending on that see if lumpectomy is still an option, or just go straight to removal and reconstruction and not go through the distress of mri guided biopsy and probably have it all done before year end. if i was able to know something about the rate of growth might help me make up my mind. is that test available for noninvasive cancer like dcis?

Just learned about this. What is your experience consultating with an Integrative medicine doctor?

What benefits did you experience, and what were the recommendations

In the middle of TC/Keytruda treatment.

Noticed that sometimes I have orange pee in the morning. Is this a normal?

I am thinking I am not drinking enough water, but checking if this is normal.

On nights that I am drinking lots of water (waking up in the middle of the night to pee), my pee is clear.

I (34F) was officially diagnosed on Friday and had my follow-up with the surgeon who sent me for a mammo/ultrasound today. He wants me to make an appointment with an oncologist and to see a genetic counselor (hasn't provided me info). I'm scheduled for an MRI of my breasts w/wo contrast tomorrow. I also tentatively have an appointment for a skull to thigh PET scan next Tuesday (there's an enlarged lymphnode behind my thyroid and biopsy of my breast mass noted suspicion for lymphovascular invasion). In the meantime I've also been told to see my GYN about removing my mirena IUD and discussing egg freezing. I'm "on the schedule" for my case to be discussed at an interdisciplinary meeting on Thursday.

Now the question/my issue...Should I just go to the ER? Not where my current doctor is affiliated, but where one of the doctor's I'm hoping to see works out of. I discovered my mass (3.1 x 2.4 x 2.3 cm) around September 13th. My doctor wasn't able to see me until November 11th, despite me noting the size/my age/deformation and pain associated with the mass. I had a mammo/us a week later, was biopsied a week after that, and had my follow-up today (a week after my biopsy). The pathology states IDC and DCIS, mentions necrosis and a high nuclear grade, and had a ki-67 of 90.

The fact that it's already been 3 months since I found the lump, and sounds like a lot more visits (aka waiting) before I'll even have a plan of action is scaring the hell out of me. That's not even factoring in second opinions and potential waits for appointments, or attempting to preserve my fertility.

Am I in a dire situation where I need to factor in time more carefully? This is all still so new and I feel so overwhelmed. I'm used to being very informed about my body and illnesses, but this is uncharted territory for me and I have no idea what I should be doing. I feel helpless and don't want to waste time if it's of the essence, but I also feel weird going to the ER- I'd have no idea what to expect or what I would even say.

So many resources online. Looks like consensus are more fruits and veggies, less sugar, and less processed food.

Read that Mediterranean diet, or keto diet is beneficial. Which one to follow?

What about soy? Is that ok?

What is the chemo regime for IDC ++- 5mm no node involvement 43 premenopausal. My mammaprint came back high risk and Luminal B. This has been a roller coaster and my plan keeps changing. I meet again with oncology on Wednesday and start chemo next week.

Idk if you’ll find it funny but I did and my teen was almost rolling on the floor. (i had a DMX but radiated my right side) “I wear the sports bra bc my Yankee side has to meet my Southerner side in the Midwest kind of”.

Hello! I was recently diagnosed as metastatic (++-) and have been so grateful for this group—I’ve been lurking and have found such hope and comfort in all of your stories.

I am in the awful process of nailing down my care team and treatment plan. I will most likely be going to MSK as it’s nearby and would love to know if any of you have good oncologist recommendations. A million thanks as I begin this journey with all of you.

Diagnosed in July with Er 10, pr 19, Her2 negative, with Ki-67 of 95. Tumor 3cm with a nonmass of 8cm. I fought for Keytruda to be added to my treatment throughout chemo, even bringing it to a tumor board. Now that chemo is over I have gotten a second opinion and the new hospital ran a mammaprint. Sure enough I have a basal like tumor and should have had the immune therapy.

1. Can someone help me understand the Mammaprint scores. What does Basal +0.672, Her2 -1.140 and luminal -0.100 mean?
2. Today my new doctor ordered an MRI stat. (Getting it tomorrow). He said if I do not have PCR then we do chemo again with immune therapy and cancel my surgery that is scheduled on 12/17. If I have PCR we move ahead with the surgery. What do I pray for? The chemo I wanted in the first place or PCR according to an MRI. How accurate is an MRI anyway?

A little background - diagnosed in January, chemo (TCHP) March-June, BMX in July (PCR/NED), started Zoladex injections and Letrozole pills in July (for the next 5 years), bonus surgery in Sept for infection around one of my tissue expanders, will finish HP infusions at the end of March 2025, and will get my implants in May.

I constantly feel exhausted and my joints are stiff and painful. I am so grateful for the treatments that I’ve received and continue to get and this is not a complaint. All the discomfort is a reminder that I GET to have this treatment. With that said, I don’t feel “done” with treatment as I still have a ways to go where I feel like I’m in some stranger’s body.

I’ve got the “crud” and my oncologist wanted me to go get evaluated before he’d approve any meds, so I go to an urgent care. When the front desk lady tried to charge me $75 co-pay, I politely said that I’ve far exceeded my out-of-pocket max this year. I jokingly made a comment that I’ve been in breast cancer treatment this year and haven’t had a copay since the beginning of the year. She immediately said (while wearing pink ribbon scrubs) “Oh, you’re in remission!” Another desk lady chimes in “That’s great! I bet it feels so good to be all done! Bless your heart! Congratulations!” and both ladies start clapping for me. I was trying to interrupt them to explain that I still have a ways to go.

It didn’t upset me. I knew they meant well, but I did try to politely make it a teachable moment for them. I’m guessing since my hair is short (but not bald), they assumed I was all done. They were truly trying to show me kindness and I acknowledge and appreciate that. It just made me chuckle on the inside how quick they were to assume instead of just asking. The doctor asked where I was in my treatment though.

I feel good that I was able to politely and respectfully set them straight. I put a lot of effort into being intentional with how I receive comments from others. I’ve heard lots of “tone deaf” or ignorant comments this year, but they all came with positive intent, so I want to show kindness in return (and use that little filter in my brain to think before I speak!). I also want to educate people on what a process this can be (and mine was even caught early).

I have one more chemo treatment left before surgery: and honestly I just want to skip it. I’ve been so sick the last three weeks I can’t walk long distances. I now have issues with my thyroid now and possible GERD. I just had to have a platelet transfusion. I’m just done honestly: I don’t see the point in doing the last round if they are just taking my entire breast anyway.

Has anyone just said no to the last round and went straight to surgery?

Had my Port placed in Sept 2023... Finished chemo Feb 2024, but kept port for frequent blood draws when starting verzenio. But, tomorrow is the day! I'm getting it out. Feeling nervous and excited .. but keep having recurrence dreams these past nights. Anyone else have complicated port feelings?!?!

Hi, I had really bad leg cramps on Anastrozole. My onco is switching me to Letrozole.

Has anyone had better side effects on Letrozole?

I'm on my last week of radiation!! Yay!!! As excited as I am, I've been dealing with pretty bad radiation fatigue. I work out 3 times a week for about 1hr to minimize the fatigue but feels like it is not helping and my fatigue got worse as the week went on. My doctor encouraged me to work out more days but for shorter periods; however, I do want to ask if anybody dealt with this and has any advice??

I want to share my relief and joy with you all. And let those of you in curative treatment know that you will get there too, no matter how glacial the pace feels sometimes.

I just finished Round 14 of Kadcyla. I was diagnosed in August of 2023 with triple-positive inflammatory breast cancer, then had six rounds of TCHP, then DMX, then 33 rounds of rads. After surgery, I was so pissed off in February when I learned I'd have to be in targeted chemo until the end of year - adding on four to six months to an already-long schedule- because I didn't get pathologic complete response to the chemo. (My original [inferior] oncologist never mentioned that as a possibility.)

Yes, I'm still on AIs and will be starting Nerlynx pills in 6-8 weeks, but at least I won't feel like a frickin' pin cushion. And now I can start feeling more like I'm in my survivorship era than my patient era.

I discovered this sub later in my treatment, but I so appreciate the support and knowledge people share here. I look forward to sticking around and paying it forward here, as well as doing IBC patient advocacy.

I had my BMX on 10/29 and my JP drains are STILL in! I went in today hoping they’d finally come out, but the NP wants to keep them in for at least a few more days 😫

Has anyone else had drains in for 5+ weeks? The fluid output has been around 25-30ml/day— any tips for decreasing output? I’m going crazy here!

It's been 2.5 months after my last chemo and my hair started to grow back about 3 weeks ago. I have a patchy buzzcut now, but the bottom third of the back of my head has nothing growing.

It's a clean line of where the new hair ends and just a bald strip about 1.5 inches high.

Did anyone experience permanent hair loss in some places with TC? Or maybe you experienced a stubborn patch/ late blooming section?

I don't see my MO till January and I'm trying to figure out if it's just slow in that section, or if it's likely I won't get hair back.

Going through neoadjuvant chemotherapy through the ISPY2.2 Clinical Trial and found out this afternoon that I’m going on to my Block C - AC.

At each Block check-in I’ve tried so hard to not get my hopes up, but I can’t help it and the disappointment hits so hard.

I should be grateful that I am responding well to treatment, but had hoped that the Clinical Trial would result in more effective and less dreadful chemo. Unfortunately I am now one of the ones who will go through all three blocks (standard of care + 12 additional weeks of immunotherapy).

Anyways - I could go on and on. I’m dreading the AC …. The nightmare stories have stuck with me I guess? Anyone have some positives to help shift my perspective?

I hated the enhertu, although it was only bad for a week and then I would have 2 good weeks before the next infusion. That was nice. The 12 weeks of weekly Abraxane (Taxol) has been a TOTAL breeze (thank god).

I was diagnosed with breast cancer, stage one in my right breast one year ago. I had a double mastectomy and have been on tamoxifen since March of this year. Initially, I suffered with some side effects like hot flashes, but after about three months that settled down. I have missed my period in around the June timeframe for a couple of months and then they seem to have come back with a vengeance. Started off by having a very, very heavy periods, like it was hard to leave the house. And my last cycle came and stopped, and then I had spotting and then I’ve gone into another full-blown period less than Two weeks since my last one. Has anybody else experienced this? I had a CT scan done back in September of the whole body as part of my annual checkup since I have had cancer twice. And all came back clear. I do have cysts on my ovaries and I’ve had those for a good couple of years.

I am helping a friend of mine who is currently undergoing treatment look for a second (or third) opinion for surgeons. She has 2 chemo sessions left and plans to get surgery in January. I have been to a few appointments with her but her first and second options for surgeons have had conflicting information on options/treatment plans for the type of surgery she will be able to get. Can anyone recommend (or dissuade us) someone in the DFW area to have another consultation with?

I am doing this on her behalf so she doesn’t have to sift through threads or information she isn’t ready to see right now in the middle of treatment, but I can answer any helpful questions you all may have to help me point her in the right direction!

Hello, this is my first time posting. I'm 35 and I was diagnosed on Nov. 4th with IDC stage 1 grade 2 ++-. The surgeon ordered genetic testing which will help us plan what kind of surgery will be best for me. However, the nurse didn't label it correctly so I had to repeat the labs. Were expecting results in 2-3 weeks. She had originally hoped to have surgery done right after Thanksgiving. Now I'm nervous it's not going to be in December either depending of when the results are back, and with the holidays coming.

Have any of you had surgery without the genetic testing? Or is it absolutely necessary?

Also, it's insane the amount of information they throw at us when we are diagnosed 😩 this is not really a complaint lol but I feel so overwhelmed by the appointments, plans, and all that.

My next step is a set of scans this week and then I am scheduled to begin 4 rounds of neoadjuvent TC next week. I know the scans had to be before the chemo in case they find something but in trying to explain to family the holiday weekend I realized I’m not sure how this all could go.

I’ve seen a lot of mentions here about things showing up that turned out to be nothing, or turned out to need more tests.

So, I spend Thursday at the hospital getting a bone scan and 2 CTs, then I have Friday-Tuesday to finish getting chemo-ready before my Wednesday morning infusion appointment. At some point… Monday? I will see something on MyChart or get a call… or nothing? And then if something comes up it could be still show up Wednesday or it could be pause for more tests or it could be dnMBC so a change to the treatment plan?

(2-months post-DX. Stage IIA IDC Grade 2 single breast/clear nodes, ++- Ki-67 36% High Risk Luminal B. Negative genetics. Perimenopausal.)

Hey, so today was supposed to be my 4th and final TC but because of allergic reaction (rash and fevers) we planned to switch to Abraxane. But then we discussed shortness of breath and I wore an 02 monitor and walked fast laps. My oxygen briefly dropped to 84. So off I went to ER for ruling out blood clot. All ok there. But this could be lung toxicity if this wasn’t a fluke. Anyone else stop at 3 due to toxicity(but I an anemic too so not sure this is issue).

Should I get second opinion if he wants to stop at 3?

I’m stage 1A. No Lymph node or LVI involvement and grade 2 1.4 cm ++-. Not feeling good about stopping but worried about efficacy of 3 and if this will haunt me if I don’t do last one. Oncotype 29 and I’m 56.

Please let me know as I have a feeling Dr is leaning toward stopping. :( should I get second opinion?

We've been struggling for 8 months to find an aromatase inhibitor that doesn't make me feel like I've been hit by a car. I've tried all three, and the effect is the same: widespread body pain, inability to lift my legs or take stairs. I can barely get off the couch. I push myself through physical therapy, water therapy, and daily exercise without any improvement. It's rough.

Anyway, a few weeks ago, I had my wisdom teeth yanked. They gave me four days of dexamethasone (steroid) during recovery.

ONE DAY on the steroid...and every bit of pain was gone. It was like a miracle. The effect lasted for about three weeks before it gradually creeped back.

I'm guessing this means I'm having an inflammatory response to the Ai? Has anyone taken periodic steroids to help treat this effect?

I was originally diagnosed with Stage 3 Grade 2 +-- IDC with 4 positive lymph nodes back in May of this year. I am 33. They couldn't find the primary tumor to biopsy, but my original MRI showed 13cm of suspicious tissue they diagnosed as IDC. The biopsy of my nodes confirmed this.

I just had my mastectomy about 2 weeks ago and the pathology now says there is no evidence of IDC, but 12mm of DCIS?? What? What does that mean? Is it a new cancer or something we didn't know about?

It says I have 4 positive nodes still - 2 macrometastases, 1 micro, and the final 1 with isolated tumor cells. I am so upset that none died - I wasn't expected PCR, but I was holding out hope I guess that the lymph nodes would be clear.

It says "Treatment Effect in the Breast: Probable or definite response to presurgical therapy in the invasive carcinoma" & "Treatment Effect in the Lymph Nodes: Probable or definite response to presurgical therapy in metastatic carcinoma" but I am a mess and still really scared.

ER+, PR+, Her2-, bilateral breast cancer diagnosed mid April. 4 AC, 12 Taxol.

Had SLNB 11/14; right side clear, left side 4/6 showed carcinoma so we knew we needed more nodes on the left. Bilateral mastectomy on 11/20. Right side was simple, clear margins but RCB II. Left side is a nasty bitch....mutifocal IDC, in total, measuring 9 cm of cancer in the breast. Took an additional 4 nodes and 3 had cancer. Cancer also present behind the nipple so they took that. RCB III.

I expected radiation on the left and am anticipating addl chemo. Any one else out there with a similar pathology? What was your drug regimen? I have expanders with plans for implants but I am reconsidering going flat so I could at least feel any reoccurence.

Cancer sucks.

Hi everyone! I'm on my 2nd year of treatment (zoladex + exemestane) and was wondering if any of you guys know if B12 would affect my estrogen levels? I went back to school after my diagnosis, it's finals week, and I could use the extra boost of energy this patch claims to give.. all information would be greatly appreciated.. Happy Monday to all!

So, I was diagnosed with Stage 3 Her2+ Hr+ Breast Cancer in 2022. I was 36, 120 lbs, and pale. Now, I'm 165 lbs from the medication.

I did six rounds of TCHP and then HP for the rest of the year. Now, I'm on Tamoxifen and monthly Lupron shots.

The nurses who do my blood draws are nice. But, only one nurse in the infusion room was ever nice to me. The nurses did not speak to me (only to tell me when I was doing the pre-medication, H&P, and chemo).

As soon as I walked in, one nurse would tell me to put my cold cap on which never made sense since you're not supposed to put it on until its closer to the chemo. I usually put it on while I was doing H&P. One week, a nurse changed the order of medications which confused me. I ended up doing the first chemo before I even did the pre-cool capping. I ended up not doing the full cool-capping that day. (I think this is why I lost 50% of my hair). While I was looking at my chart for the day, I noticed she put a note in it stating that "I refused to put the cool cap on when directed."

During TCHP #4, both bathrooms were in use so I had to wait to put my cool cap on. One of the nurses had a meltdown in the infusion room because I wasn't back in my chair in a timely manner. Another nurse told her there was a line for the rest room, but it was still my fault for delay.

Fast forward and I'm on my final round of chemo. My oncologist acknowledged it while she was going over labs and then I went into the infusion room. The nurses pretty much stayed away from me throughout the day. When I did the final cool-capping cool down, I actually had to disconnect the cool cap from the machine and I left.

I didn't ring a bell or receive a certificate. I do know they do this at my oncology center because two other patients rang the bell while I was there.

I've seen people posting on social media their photos and videos of their journey with completing chemo and I feel like I missed out. I didn't feel comfortable with asking the nurses to take a photo of me.

Fast forward another couple of weeks and I walk into the infusion room to do the Herceptin and Perjeta. As I'm walking by the nurses desk, one of them yells out "You're disgusting."

Now, it's the day of my double masectomy surgery. It was delayed and ended up being longer than expected. The night nurse actually asked one of my relatives to stay and take care of me, otherwise I wouldn't receive much help since she had other patients. The night nurse pretty much ignored me throughout the night.

I kept having a lot of hot flashes which in turn would make me throw up. I'm sensitive to heat. I told the nurse that I was hot and asked her to turn off the heat in the room. She proceeded to tell me that it wasn't on. However, when the morning nurse did her rounds, she told me the heat was on and she turned it off.

I'm now one week post surgery and I have my first follow-up appointment with my plastic surgeon's office. My appointment is with his PA and her nurse. My oncologist told me to mention how the pocket of fluid near my armpit was getting larger and it was bothering me. The nurse stated "Let me get the PA so you shut the F*** up." During this appointment, the PA and nurse proceed to tell me that there is no pocket of fluid.

I end up seeing my surgical oncologist four days later and she explains that the fluid will slowly go away.

Fast forward two months and I'm starting radiation. The security at the front desk refused to check me in for any of my appoints. Since I went every day around the same time, sometimes she would even take her lunch break so there would be no one at the desk. The inner office has a security camera so one of the radiation technologists would see me sitting in the lobby and bring me back. The first week at the hospital, she actually called security and told them she felt threatened by me. For that first week, a security guard or police officer sat in the lobby to observe me while I was waiting to go into radiation.

After I completed radiation, the radiation techs had me ring the bell and gave me a certificate.

Fast forward six months and back at the plastic surgeon's office to discuss implants and Diep. I had a cold so I called the office to see if I should cancel. They tell me no. So, too be polite, I wore a face mask because I was coughing and sneezing a lot. Didn't think that would be a problem.

However, it was.

He doesn't ask how I am or really have any kind of conversation.

After the plastic surgeon discussed both options, he left the room so I could get changed. While I was doing this, he had my relative go into his office in which he proceeded to ask her if I had a mental problem because I was wearing a face mask. He then proceeded to state that he felt sorry for her because she had to deal with me. The relative told me about this conversation once we left the office.

Now, I have another appointment with this plastic surgeon to go over my reconstruction surgery. I'm so not looking forward to it. I could use some encouragement.

You may ask why I don't switch doctors. But, there is no point if I'm going to be treated the same way by another plastic surgeon. Also, if the implants fail, then I will have to do DIEP. My current plastic surgeon has the most experience with this. Plus, if I change plastic surgeons, I think I would have to change my surgical oncologist and oncologist. I like both doctors.

Hi All,

Sorry all for spamming here but I just got confirmation that my path report was right. Surgeon was saying it should be 1.8 cm not 1.8 mm. Size of DCIS: 1.8 mm Grade:1

Now doctor wants to do another lumpectomy this week as one margin was not clear with 1.5 mm

Do I really need another surgery here?

Thanks

I'm so happy right now. I want to share it with you guys. Thank you everyone in this group. Your advices and recommendations are much appreciated. I feel so fortunate in finding you all. Now, I'm off to my next step in scheduling my surgery.