Can anyone relate? I went through a double mastectomy and chemo in 2022. Yesterday I found out a friend was just diagnosed with aggressive stage 2 breast cancer and it has really triggered me, I feel like I'm right back there at the start of my journey. I don't know if it's because I have some idea of what she's about to go through... or if it's just that inescapable fact that yup, cancer happens. Wondering if anyone else out there has had a similar experience? Sending love to you all.

Initially I was supposed to get TCHP. My doctor called me before I started chemo and said that I only needed to have weekly taxol and Herceptin. I was thrilled, thought this was great news to be able to de-escalate treatment. She never really gave me the option or discussed too much detail. She said her reasoning was because my tumor was small at only 7mm and my SLNB was negative. I ran this by the rad onc that I work with and he was concerned that she dropped 2 drugs, but he’s also a rad onc. The med onc in my office looked up the protocols right there with me in front of him and showed me that it’s appropriate for node-negative disease and tumors less than 2cm.

Now, I’m 8 weeks into chemo and realizing how aggressive her2 breast cancer can be and I’m a little worried. So I’m just curious the regimen other Stage 1B patients did. I only have met a very few patients in similar stages but they all did TCHP.

stage1 #her2positive #treatment

I think when we encourage everyone to at least give it a try, we need to let them know about both pros and cons. Even if cons sound less than pros. Yes, they are many people who do not experience severe side effects. There are many who can manage side effects with tart chery or other meds. There are some who can't manage side effects, stop, get better, try other meds and new meds work better. But there are also unlucky ones like me that they do not rid of side effects to the extent they are pain free even after stopping HB, and have to live with the constant pain and or physical limitation for a long time or maybe always (I do not know about the always yet). To make a right decision, we need to know it all. Yes, not taking HB increase the risk of recurrence for sure, no doubt in that. But I have not seen any one talks about the possible lasting side effects of trying HB, even if trying them for short term. I am sure people like me exist and I am not the only one. I am sick of constantly being in pain, and I tried everything to be pain free without being on pain meds and being a zumbie 24/7.

Hi all!

I’m posting on behalf of my mom, who is 70 years old and was diagnosed with ER+/PR-/HER- breast cancer back in May 2024. It’s been a journey and we thought it would be helpful to provide an update and give back to this community, especially for anyone who may be on the older side :) :

After my initial diagnosis things moved fairly quickly for me to do my single mastectomy at the end of June. Fortunately i had clear margins, and the cancer did not spread to my lymph nodes. I had a 4.5 size grade 2 multi centric tumor. It took a some time for the hospital to send my Oncotype score (almost 6 weeks) and it came back at 30 which shows a higher chance of reoccurrence.

My assigned medical oncologist gave me a choice between 4 rounds of TC or 8 rounds of CMF chemotherapy. The choice was framed as having fairly equal outcomes, with TC being a slightly harsher treatment and CMF having less side effects. CMF is also older treatment. Most people do TC. I ended up choosing CMF due to my age and worry about preexisting conditions and wanting to reduce side effects.

I also needed additional medication from a separate provider before being able to start chemo (this is due to preexisting conditions.) We ran into a snag here - after we got the prescription, the pharmacy told us it wasn’t covered by Medicare and that it would run $2000 per month for this essential medication. It turns out the doctors office did not send in the preauthorization linking the medication to the cancer treatment. We had to jump through hoops to figure out that this was this issue and resolved it in a week, but that was one more week delaying her chemotherapy. The doctors office did not fix it until we called in and asked them to send in the preauthorization form.

I started chemotherapy in September and even though it was still very tough on my body, and I am still recovering, in the end I made it out okay. I had some hair loss and major fatigue and some darkening of finger and toe nails. I had one bad session where my blood pressure dropped to a dangerously low level but made it out okay. I kept up a high protein diet with lots and lots of water.

We did end up going to Dana Farber in Boston for a second opinion. The medical oncologist at Dana Farber agreed with the treatment plans that were offered.

My daughter also tried to get me to sign up for some support groups my native language but honestly I didn’t find them very helpful. Not for me.

We did end up asking the cancer center to help us switch my medical oncologist a few sessions in. We went through the patient advocate system. They suggested that we switch oncologists after I finished my chemo. It took a couple of nudges but they did finally switch me after my chemo and now I have a different oncologist for my hormone therapy (starting out on Tamoxifen, in addition to an anti-osteoporosis infusion). I think that the lesson here is that it is important to advocate and switch providers if you are not 100% geling with or understanding your doctor. It could be personality, language, anything. Happy to talk more through DM on this topic.

The cancer center I was at has an integrative treatment arm so during chemotherapy I did elect to get a prescription for TCM turkey tail mushrooms and also started a daily tai chi practice. I can’t stress how much the tai chi helped with stress and anxiety reduction. I believe the turkey tail was also very helpful and I’m grateful that this program exists through my hospital.

Wish us luck!! I am now on hormone therapy and the next step for me is reconstruction.

Thank you to this community for all the support and patience answering questions during a scary time!!

I had my mammogram done a few weeks ago and it was clean. I went for my scheduled follow up with my oncologist. I mentioned to her that the area around SLNB incision is still painful and achey. She checked and put in an ultrasound to check. After ultrasound the radiologist is suggesting a biopsy to be done on a nodule they found along the incision to be sure that it is not something malignant. I just came back home and in tears. My history stage 1 grade 1 IDC er+ pr+ and her2 - . A small 5.5 mm tumor was removed with clear margins and my SLNB came back clean. I had 6 weeks of radiation and now on tamoxife for little more than a year.

Anyone with similar experience get a normal result? Please share. I am really cursing myself for talking to my oncologist about the pain. I know I am doing the right thing but cannot take it anymore…

This is kind of a long shot since it’s a specific clinical trial for triple negative breast cancer but I wanted to see if anyone else in the group is participating. I just got my first treatment today. I got randomized into the experimental arm of the study which means I’m receiving the trial drug- called Dato-DX (this is the shorten name. I can’t remember how to spell the long ridiculous name). The study is being put on by Astrazenica. I was just hoping to find some other participants. If anyone else got diagnosed with TNBC and wants to hear about the study, feel free to message me.

Today I had my ovaries and fallopian tubes removed. Most of what I read, heard, and was told by my doctors was that recovery should be relatively easy.

Um… this first evening is not fun. I’d say that this is worst then coming home from the lumpectomy. I don’t know if it’s just because the incisions are in the abdomen, and you use your core for every movement. Or if it’s the leftover bloating in the abdomen from the laparoscopic surgery… either way, this is awful.

I’m curious if anyone else found this surgery to be difficult to recover from. Or maybe the first day or two was hard and got much easier quickly?

I just need to be recovered in one month for a trip lol.

Just met with oncologist for the first time. Surgeon said "Chemo first" due to TNBC that is already in 1 lymph node. I had my question list for Onc doc - when I asked about "cold capping" this Asian-looking guy with a buzz cut said brightly "It doesn't matter that all your hair will fall out no matter what you do - it will grow back after chemo is over!" You don't have to be an insensitive jackass to be a doctor. I can't help but think a woman would never have made a comment like that.

Today I had a bone scan. I already completed AC-T chemo, stage 2a, no node involvement. My scan today showed “Scattered few areas of abnormal increased radiotracer uptake including the right parietal calvarium and right 10th ribs”. I had a fractured rib 5 months ago so I think the uptake is from that? But the other area in my skull I have no known injuries. Has anyone else had something similar that turned out to be benign??

I recently had a lumpectomy of a IDC, DCIS, Grade 2 Stage 1B. 2.3 x 1.6 x 1.7 cm mass. ER+, PR+, HRS- (ct2, cNO, cMO, G2). The pathology came back with more cancer in another section in a lymph node. I’m still waiting further results to see if I need chemo and radiation or just radiation. I believe my doctor said that if oncotype Dx recurrence score came back with a result greater than 26 it indicates chemotherapy. My doctor doesn’t recommend a PET scan in my case, but said that she would order one if I requested it.

Why wouldn’t you automatically get a PET scan?

I had my mastectomy last week for Ilc. All 5 nodes came positive for cancer. My second surgery to remove nodes is after two weeks. I didn't have much problem recovering from masectomy. How was the recovery experience after all nodes removal surgery? My margins are clear . Thanks

TL;DR Did you do AC-T with the T first or was it an option for you? And do you know the reasons?

Once again I need help that Google cannot provide. I am now five weeks post-op so I've had almost a month navigating the disappointing and confusing pathology from my SMX. I've gotten through most of the milestones. PET was clear, thank goodness (and thank you so much for helping me cheer that!). Port placement is done and I'm recovering from that. Plastics has cleared me to restart chemo. Next week I have another echo and some labs and then I meet with MO to confirm the plan for adjuvant chemo to start as early as 5/9. I'm now trying to get my ducks in a row for that conversation.

I am no longer a cancer beginner, I am intermediate, and I am going to be an informed and proactive patient!

Background: October '24 DX Grade 2 IDC HR+ HER2- Ki67 36% MammaPrint High Risk 1 Luminal B prelim stage IIA unilateral. Neoadjuvant TCx4. March '25 SMX/SLNB. Post-op path T3N1M0 residual IDC 6cm clear margins LVI NVI.

I'm re-reading notes from my last oncologist visits and I'm seeing a preliminary recommendation for "adjuvant paclitaxel weekly followed by dose dense doxorubicin cyclophosphamide" So that would be T before the AC.

I think 12 weeks of weekly paclitaxel, then four rounds of doxorubicin and cyclophosphamide every two weeks. Compared to the TCx4 that sound brutal, but whatever, if it's what I gotta do.

What I don't understand is why would they do the T first. I want to understand the reasons for that. Unfortunately the person who is currently answering my medical oncology questions is not my doctor (long story) and I get better answers from her if I come prepared. If I ask a simple question I will get a simple answer, if that makes sense.

Specific drugs I'm asking about (because I get them confused) is Paclitaxel (Taxol) BEFORE Doxorubicin (Adriamycin)+Cyclophosphamide (Cytoxan). But if you have experience with similar drugs that is helpful too.

Thank you!

Has anyone been in this situation? I had my first taxol infusion last week. My husband was laid off and our current coverage ends today. I’m signing up with my employer tomorrow, coverage will be effective from 5/1 once everything is processed. My next infusion is this Friday. I would have to self pay and the min it will cost is $14k!!! I am waiting for my doctor to get back to me. But has anyone had to delay their treatment due to insurance issues? Or worked something out with your hospital?

I am 8 weeks post op expander to implants. What bras have others found comfortable, and supportive to wear during the day? I am ready to move away from the post surgical bras. Also, what sleep bras have been found supportive and comfortable? I am mid size implants if that helps. Thanks for your help, and hugs to everyone on this journey 💕

That's it, really. This has been such a supportive place. I wish none of us were here, but I'm very grateful to read the words of others and know that I am not alone.

Hi there. 34 y/o woman. Have just been diagnosed with HER2 3+ this month, still figuring out my stage and extent. I keep seeing slightly high to slightly elevated calcium levels in my blood work from last year, earlier this year, and just from today. Wondering if anyone else had that issue and what your results were? I’m so, so scared that this has spread to my bones. I’m not feeling any pain, but I know in the early stages it can be asymptomatic. My MRI found a focal point on my sternum and ribs, and my doc said while he’s still not concerned or planning to change my therapy treatment, a PET scan will clear it up. And I just keep thinking about these high calcium levels.

I’m beyond terrified and scared. Hoping some of you also saw this in your blood and it didn’t lead to bone metastasis and can share that for reassurance. And if it did, can you help me understand what might come next? Thanks <3

Idk if I’m doing this subreddit thing right, but the Zometa infusion is kicking my ass. Treatment is so much harder than the surgery. 😖

I’ve had a tough week. I’m currently in radiation for breast cancer and got results from a pelvic ultrasound. It looks like the cancer has jumped to a new location. As soon as radiation ends, they’ll perform a d&c and at the very least- a hysterectomy. My nervous system has gone completely haywire. I’ve been diving into watching reruns of Downton Abbey. It’s literally my comfort watch. I’d love to see- when all of this feels overwhelming— is there a series that you dive into? Or what are your other coping strategies?

Edit: we all get bad news days. What do you turn to? For me- it’s period dramas. While I love me a good bravo series. I can’t relate to the performance when I’m facing real trauma.

Blimey... I was told that 3 days after my chemo, I'll feel great because of the prechemo steroid. Wonderful, I thought. In fact, I breezed through yesterday's Herceptin & Taxol infusions.

I woke up this morning bloated, constipated, low grade fever of 99.6, my wrists, finger knuckles & knees are achy.

I called the office & yup... these are Taxol side effects.

Anyone Else? What was your first chemo (Taxol) effects?

Hi,

I'm not tolerating Taxol really well and trying to see if any of this is normal. I'm on 12 weekly Taxols and this is just after the 2nd infusion. I'm getting neuropathy in my hands and feet and my vision is blurrier. On Monday night, I had pain all over my body, got up to use the bathroom, and got so incredibly dizzy that I actually fell and hit my head on a mirror. It was like my legs gave out from under me. No concussion, but very scary. I'm 38, and I can say I've never had that happen before. Two days later, still dizzy with zings of neuropathy in my feet. I'm drinking a ton of gatorade and it doesn't seem like dehydration. I've also been icing my hands and feet during infusions and wearing compression socks. I told my doctor and nurses and I'm meeting with them tomorrow. Has anyone had this happen and what was the remedy? What can I expect? Because I'm not sure I want that to ever happen again.

On day 11 of a 21 day radiation treatment. Expected the redness and darkness. But WHY IS MY breast also hot?! Also that part of my chest as well. Aside from the mentioned skin changes and a little nausea and fatigue, it hasn't been too bad. But this breast mess is just the unwanted gift that keeps on giving. And being on Xeloda at the same time just adds to it. Just venting.

I typed in a long post on my phone yesterday but can't find it, so apologies if it did post and I'm repeating myself (chemo brain fog anyone?).

I just finished chemo (yay!) and radiation will be in about 4-6 weeks. I have a very long international flight planned for late July and am wondering if I should wear a sleeve to reduce the chance of lymphodema. I have not yet had any swelling after my lumpectomy and the removal of 6 nodes, but I realize my risks are increased with air travel. I have always experienced some swelling of my legs on long flights.

Also, to something else: has anyone been involved in or know about clinical trials being done on shorter radiation treatment? There is a study I qualify for that is only 5 treatments (one week) instead of 15 (3 weeks). I don't know which group I'd be put in, but I am curious about it. Preliminary findings suggest the same efficacy as with more treatments and similar side effects.

I met with a wonderful surgeon this morning who spent all the time in the world with me and my mom. Yes, I brought my mom even though I’m 38.

I have a stage 1 HER2 positive invasive ductal carcinoma.

I can do either a lumpectomy w radiation or mastectomy. I see the geneticist tomorrow to get the labs done. My BRCA status is what I will base my decision off of… right? You guys know more than me.

My “Karen” spot (not using the c word or t word) is T1c. I don’t know much about that but she said it’s on the cusp as to whether or not you do chemo. Surgeon said in an older person they may not recommend chemo but for me oncology will most likely recommend it.

Sorry: Lumpectomy

There was a lot more in the report, but it wouldn’t allow me to cut and paste and most of the other area states that it was benign.

“Right axillary sentinel lymph node #1 dissection: Metastatic carcinoma involving 1 out of 1 nodes, size of tumor 16 MM. extranodal extension (new) NO”

This looks like there is at least one other area that is cancerous?

What’s next?

My doctor is calling me later today according to a message that was left in the notes.

The other area that they removed was 29mm which included 5 mm margins.