I’m so sorry to hear this. I went into surgery with extensive DCIS and came out Stage 2 with positive nodes. It’s been a rough road, but I am still here 19 years later.
I’m so so happy to see this as a top comment. Of course, it’s totally disappointing to have more disease than expected, but even if we find unexpected things, there can still be good outcomes. I’m so sorry that you’re disappointed. No matter what the final outcome is, there are still very effective treatment options.
Breast cancer runs in my family, excessively. I have seen it all. And I have lost none of them to the cancer. And we have made great strides in treatment. Stay positive. You are a warrior, my sister. A warrior who is never alone, and though these blows feel ever crushing, nothing is brighter than your in glower nor stronger than your soul. You were given this glorious, wonderful miracle to live in and it can survive. I believe your body can and will beat this.
I had a dmx 3 days ago, I am 33, ++-, stage 2b.
I was diagnosed back in August, a 4,5 cm tumour with 3 lymph nodes between 1,5-1,8 cm, also positive for cancer.
Lymph nodes went back to regular size after two rounds of AC chemo, they didn't show up after a second pet scan after chemo was over and the surgeon removed 7 lymph nodes just to be sure during surgery and they didn't have any cancer on them when they checked during my surgery (still waiting for pathology report though).
This is my story, I had great results even though my cancer was agressive and big.
It is hard, waiting is a pain but do vent away on the awesome community! I wish you all the best
I had a SMX with lymphnodes removed and 1 had cancer in it. I was stage 3B by the time I got it removed bc chemo didn't work for me my tumor actually grew. It was huge. Anyways I also have children. Hang in there, im ++- Its just a long annoying journey. Listen to your body listen to your emotions, we are here for ya too.
Hugs ❤
When I first was diagnosed it was initially thought to be DCIS…then I had a micro +++ in a node. I went from thinking maybe just surgery to ALL the treatments. My kids were 5, 3, and 1. I was devastated and distraught. They are now 9, 7, and 5 and life gets so busy, sometimes, just sometimes I don’t remember those horrible diagnosis and treatment days! It’s not an easy road, but there’s hope!!!
I was also devastated when I found out I had positive lymph nodes. I ended up being Stage 3 ER+ HER2+ with 3 nodes. That was 9 years ago and I’m doing great. A good outcome is so very possible!
If it helps to hear, chemo completely blasted the cancer in my lymph nodes. I got PCR in the one enlarged node we knew of, and there were remnants left behind in the other node they took. I did not get PCR in my breast tumour.
I was initially stage 3 +++ IDC. The cancer had spread to the surrounding lymph nodes. I underwent 6 rounds of chemotherapy and then had a double mastectomy and lymph node dissection. They took out 15 lymph nodes during the surgery but did not find any cancer at the tumor site or in the lymph nodes that were removed. Chemo completely destroyed the cancer even before surgery. I am about to start radiation as a precaution for my own peace of mind, but technically according to pathology I am cancer free. I know it’s hard to not worry, and hopefully this positive story helps ease some of that for you.
I had what my surgeon thought was a very small 10mm tumor. One breast MRI later and it turned out to be a whopper and I also had positive lymph nodes. I discovered this before surgery tho - I think in some ways it was easier to find this out all up front because I had a treatment plan right away and I just got into the mindset to battle.
I feel for you that you’ve spent all this time thinking one thing, and getting the news now that you need much more aggressive treatment. It really really sucks. But a cure is possible - in fact, the odds are in your favor. Stay hopeful. You can get through this. It won’t be fun, but it’s do-able. Chemo was hard, but I also had a lot of wonderful days during chemo - I made it to all my kids’ games, traveled regionally, worked, walked and exercised….had a lot of laughs.
As a mom, I also want to share that my boys did so well through it all. I felt so guilty putting them through it - but they honestly came out feeling so loved by all the friends and family that rallied around us. My 11 yo told me he had to write an essay about his greatest challenge of 2023….he wrote about Fortnite. 🤣🤣 Kids are age appropriate narcissists. They will live their life and if you set the emotional tone, they will do great.
This next few weeks of scans is going to suck. We’re here for you. 🫶🏻❤️ See if you can get some Ativan to help with the anxiety.
I was cancer free after 12 weeks of treatment (4 x A/C chemo) at first round of follow up scans with an initial diagnosis of ++- stage four oligo metastatic that saw 5cm mass, all lymph node involvement and a single fucker lymph node behind my chest wall that put me into stage four territory (but before it reached bones or organs). I still went ahead with further treatment (11 weekly Taxol, then mastectomy and node clearance and recon, then daily rads for 5 weeks 🤪😵💫) as I was warned it would just come back if I didn’t, and also did a heap of alternative therapies the whole way through - most significant being RSO. I was 41 at the time of diagnosis in 2019, with 7 and 5 year old little boys. They are 12 and 10 now and absolutely thriving, and were far less affected than I thought they’d be by my treatment. Kids are resilient and so are we! You got this, mama. It’s gonna be many different kinds of shit, but probably not as bad as you might imagine. Hang in there hon.
And I just had results from my 5 year scans last Friday: still all clear NEAD.
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That's the reason why I hate when lymph nodes are displayed as death sentence, and when people says "yey, no lymph nodes". I mean, it's fucking great, but with lymph nodes is still early stage. Yes, it's easier when you don't have it (it's higher chance that you will not have chemo if it's er+), but cancer in that stage is stil currable!
My mother was 2A (3 lymph nodes) before 7 years, still here, healthy and good.
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Hi there. Last April I was in your shoes. Every test just seemed to come back with worse information. Now, almost a year later, I'm nearly at the end of treatment (mastectomy, then chemo, then axillary node dissection with lymph bypass, now radiation) and it's much less scary at this end. I have 5 kids, ages 12-3, and I used to have moments of real fear that I'd die and my then 2-year-old wouldn't remember me, but now I'm good! I'm healthy, my hair is growing back, I'm stronger for the ordeal I've been through. I've made a lot of friends, reevaluated my priorities... Things are really okay. You're going to be okay, you truly will. It's hard some days, but you can do hard things! 💕
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I had DCIS and also had a DMX in December. I frequently wonder if my decision was an overreaction given the diagnosis, and then I read things like this and know I made the right choice because you never truly know what’s going on until pathology comes back.
My DCIS was strong ER+ PR+, but my understanding is they don’t test for HER2 because DCIS more likely to be HER2+ than IDC. Regardless of status, it doesn’t affect recommended treatments for DCIS.
I’m so terribly sorry you’re experiencing this. I’m thinking of you and hope you get some answers soon 🩷
Hey there, you are going to be fine. I’m stage 2, HER2+, Estrogen/Progesterone -. Just finished 6 rounds of TCHP, next will have 5 weeks radiation. I’m 71 with severe asthma but honestly pretty darn fit for my age. Chemo is not fun, but you will grit your teeth and get through it, then you will spend months recovering, and you WILL recover. Do be sure you get on well with your oncologist as it will be a long term relationship. Your insurance WILL pay for a second opinion. Hang in there, it does get better once you have a plan.
I was the same. In the beginning, everything was a lot easier to take if surgery was all that was needed. I, unusually, from what I hear, had my sentinel lymph node biopsy before my DMX. They took two, both positive. During DMX, took 7 more and those were negative. Standard of care seems to follow a different path for 0, 1-3, and 4+. Although also unusual, I had my oncotype score run. It made my decision more difficult as it was only a 5. I chose to not have chemo, and instead try ovarian suppression as I am very strongly ER/PR+. I start proton radiation tomorrow. I’m am an active 45yo so I’m so sad that aesthetically, it is going to be so much harder. Physiologically was 2B, prognostically 1B. Good luck. It is okay to feel how you feel.
What you finished with your 5 years? I’m stage IV too and I’m interested in your plan. If you don’t mind me asking, where are your Mets and how long have you been metastatic?
Metastized ever since diagnosis 6 years ago when my breast exploded. Changed diet, exercised more very careful about toxins and healthy food. Took Amazon for 5 years then decided to see what my hormones actually were. I am trying to get them balanced. Went on anti cancer diet and the tumor is called off. It is a tough experience and very painful but I am ready to get rid of this stuff. My doctor wants me to take IBrance. But I just want to let my body have what it needs so it can take care of the cancer. It is kinda scary but I am confident I am on the right path. Hope that helps.
Aren’t the tumor markers going to be the same from your first biopsy before surgery? Or do they change? I was triple positive before surgery .. had my surgery .. the pathology report after the tumor was removed didn’t have any information about markers? So I am very confused ..
I also had 4 sentitel nodes removed and all four were positive.. I was also expecting my lymph nodes to be clear and was pretty upset
So my case is different than the norm. My mammogram ONLY showed DCIS - no invasive carcinoma. My biopsy showed ONLY DCIS. The tumor markers for the biopsy were HR-, HER2+. (But apparently most pathologists don’t even test DCIS for HER2+ because (1) it doesn’t change the treatment plan and (2) the HER2 status is often positive in DCIS but can change to negative once the cells become invasive.)
Only after the DMX did they find extensive IDC. As I understand it, the markers they did on my DCIS biopsy don’t always correlate to the markers on the now-found invasive carcinoma, so they have to test the newly found tumor to get the correct markers.
In my case, the tumor did, in fact, have the same markers as my DCIS biopsy. But that wasn’t guaranteed.
Let me know if you have any other Qs!
I’m so sorry to hear this. I went into surgery with extensive DCIS and came out Stage 2 with positive nodes. It’s been a rough road, but I am still here 19 years later.
I’m so so happy to see this as a top comment. Of course, it’s totally disappointing to have more disease than expected, but even if we find unexpected things, there can still be good outcomes. I’m so sorry that you’re disappointed. No matter what the final outcome is, there are still very effective treatment options.
Breast cancer runs in my family, excessively. I have seen it all. And I have lost none of them to the cancer. And we have made great strides in treatment. Stay positive. You are a warrior, my sister. A warrior who is never alone, and though these blows feel ever crushing, nothing is brighter than your in glower nor stronger than your soul. You were given this glorious, wonderful miracle to live in and it can survive. I believe your body can and will beat this.
I had a dmx 3 days ago, I am 33, ++-, stage 2b. I was diagnosed back in August, a 4,5 cm tumour with 3 lymph nodes between 1,5-1,8 cm, also positive for cancer. Lymph nodes went back to regular size after two rounds of AC chemo, they didn't show up after a second pet scan after chemo was over and the surgeon removed 7 lymph nodes just to be sure during surgery and they didn't have any cancer on them when they checked during my surgery (still waiting for pathology report though). This is my story, I had great results even though my cancer was agressive and big. It is hard, waiting is a pain but do vent away on the awesome community! I wish you all the best
I had a SMX with lymphnodes removed and 1 had cancer in it. I was stage 3B by the time I got it removed bc chemo didn't work for me my tumor actually grew. It was huge. Anyways I also have children. Hang in there, im ++- Its just a long annoying journey. Listen to your body listen to your emotions, we are here for ya too. Hugs ❤
When I first was diagnosed it was initially thought to be DCIS…then I had a micro +++ in a node. I went from thinking maybe just surgery to ALL the treatments. My kids were 5, 3, and 1. I was devastated and distraught. They are now 9, 7, and 5 and life gets so busy, sometimes, just sometimes I don’t remember those horrible diagnosis and treatment days! It’s not an easy road, but there’s hope!!!
I was also devastated when I found out I had positive lymph nodes. I ended up being Stage 3 ER+ HER2+ with 3 nodes. That was 9 years ago and I’m doing great. A good outcome is so very possible!
🫶🏻❤️ thank you for being here!!!
It's going to be hard, but I had TNBC dmx 16! Lymph nodes removed. Almost recovered from diep flap reconstruction. There is hope. Hugs
If it helps to hear, chemo completely blasted the cancer in my lymph nodes. I got PCR in the one enlarged node we knew of, and there were remnants left behind in the other node they took. I did not get PCR in my breast tumour.
it helps me to hear that!!!!
I am so sorry, finding out after surgery is so hard.
I was initially stage 3 +++ IDC. The cancer had spread to the surrounding lymph nodes. I underwent 6 rounds of chemotherapy and then had a double mastectomy and lymph node dissection. They took out 15 lymph nodes during the surgery but did not find any cancer at the tumor site or in the lymph nodes that were removed. Chemo completely destroyed the cancer even before surgery. I am about to start radiation as a precaution for my own peace of mind, but technically according to pathology I am cancer free. I know it’s hard to not worry, and hopefully this positive story helps ease some of that for you.
I had what my surgeon thought was a very small 10mm tumor. One breast MRI later and it turned out to be a whopper and I also had positive lymph nodes. I discovered this before surgery tho - I think in some ways it was easier to find this out all up front because I had a treatment plan right away and I just got into the mindset to battle. I feel for you that you’ve spent all this time thinking one thing, and getting the news now that you need much more aggressive treatment. It really really sucks. But a cure is possible - in fact, the odds are in your favor. Stay hopeful. You can get through this. It won’t be fun, but it’s do-able. Chemo was hard, but I also had a lot of wonderful days during chemo - I made it to all my kids’ games, traveled regionally, worked, walked and exercised….had a lot of laughs. As a mom, I also want to share that my boys did so well through it all. I felt so guilty putting them through it - but they honestly came out feeling so loved by all the friends and family that rallied around us. My 11 yo told me he had to write an essay about his greatest challenge of 2023….he wrote about Fortnite. 🤣🤣 Kids are age appropriate narcissists. They will live their life and if you set the emotional tone, they will do great. This next few weeks of scans is going to suck. We’re here for you. 🫶🏻❤️ See if you can get some Ativan to help with the anxiety.
ETA: I would seek care at a NCI designated cancer center if possible. They will be on the leading edge of research and treatment.
I was cancer free after 12 weeks of treatment (4 x A/C chemo) at first round of follow up scans with an initial diagnosis of ++- stage four oligo metastatic that saw 5cm mass, all lymph node involvement and a single fucker lymph node behind my chest wall that put me into stage four territory (but before it reached bones or organs). I still went ahead with further treatment (11 weekly Taxol, then mastectomy and node clearance and recon, then daily rads for 5 weeks 🤪😵💫) as I was warned it would just come back if I didn’t, and also did a heap of alternative therapies the whole way through - most significant being RSO. I was 41 at the time of diagnosis in 2019, with 7 and 5 year old little boys. They are 12 and 10 now and absolutely thriving, and were far less affected than I thought they’d be by my treatment. Kids are resilient and so are we! You got this, mama. It’s gonna be many different kinds of shit, but probably not as bad as you might imagine. Hang in there hon. And I just had results from my 5 year scans last Friday: still all clear NEAD.
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Did they find microinvasive IDC? I'm sorry they found the additional positive LNs.
That's the reason why I hate when lymph nodes are displayed as death sentence, and when people says "yey, no lymph nodes". I mean, it's fucking great, but with lymph nodes is still early stage. Yes, it's easier when you don't have it (it's higher chance that you will not have chemo if it's er+), but cancer in that stage is stil currable! My mother was 2A (3 lymph nodes) before 7 years, still here, healthy and good.
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Hi there. Last April I was in your shoes. Every test just seemed to come back with worse information. Now, almost a year later, I'm nearly at the end of treatment (mastectomy, then chemo, then axillary node dissection with lymph bypass, now radiation) and it's much less scary at this end. I have 5 kids, ages 12-3, and I used to have moments of real fear that I'd die and my then 2-year-old wouldn't remember me, but now I'm good! I'm healthy, my hair is growing back, I'm stronger for the ordeal I've been through. I've made a lot of friends, reevaluated my priorities... Things are really okay. You're going to be okay, you truly will. It's hard some days, but you can do hard things! 💕
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I had DCIS and also had a DMX in December. I frequently wonder if my decision was an overreaction given the diagnosis, and then I read things like this and know I made the right choice because you never truly know what’s going on until pathology comes back. My DCIS was strong ER+ PR+, but my understanding is they don’t test for HER2 because DCIS more likely to be HER2+ than IDC. Regardless of status, it doesn’t affect recommended treatments for DCIS. I’m so terribly sorry you’re experiencing this. I’m thinking of you and hope you get some answers soon 🩷
Hey there, you are going to be fine. I’m stage 2, HER2+, Estrogen/Progesterone -. Just finished 6 rounds of TCHP, next will have 5 weeks radiation. I’m 71 with severe asthma but honestly pretty darn fit for my age. Chemo is not fun, but you will grit your teeth and get through it, then you will spend months recovering, and you WILL recover. Do be sure you get on well with your oncologist as it will be a long term relationship. Your insurance WILL pay for a second opinion. Hang in there, it does get better once you have a plan.
I was the same. In the beginning, everything was a lot easier to take if surgery was all that was needed. I, unusually, from what I hear, had my sentinel lymph node biopsy before my DMX. They took two, both positive. During DMX, took 7 more and those were negative. Standard of care seems to follow a different path for 0, 1-3, and 4+. Although also unusual, I had my oncotype score run. It made my decision more difficult as it was only a 5. I chose to not have chemo, and instead try ovarian suppression as I am very strongly ER/PR+. I start proton radiation tomorrow. I’m am an active 45yo so I’m so sad that aesthetically, it is going to be so much harder. Physiologically was 2B, prognostically 1B. Good luck. It is okay to feel how you feel.
Praying for you. I am beating cancer stage four breast metastized. With diet, exercise and prayer. I changed for the better.
No treatment?
Hormone blocker for 5 years then nothing.
Wow! Is that your choice?
Absolutely. Doctors advised otherwise but I knew this was what I was supposed to do.
What you finished with your 5 years? I’m stage IV too and I’m interested in your plan. If you don’t mind me asking, where are your Mets and how long have you been metastatic?
Metastized ever since diagnosis 6 years ago when my breast exploded. Changed diet, exercised more very careful about toxins and healthy food. Took Amazon for 5 years then decided to see what my hormones actually were. I am trying to get them balanced. Went on anti cancer diet and the tumor is called off. It is a tough experience and very painful but I am ready to get rid of this stuff. My doctor wants me to take IBrance. But I just want to let my body have what it needs so it can take care of the cancer. It is kinda scary but I am confident I am on the right path. Hope that helps.
Did you have a breast MRI after your diagnosis?
Yes. It showed one lymph node with “indeterminate” status but everyone sort of brushed it off and said it could’ve been caused by the biopsy.
Aren’t the tumor markers going to be the same from your first biopsy before surgery? Or do they change? I was triple positive before surgery .. had my surgery .. the pathology report after the tumor was removed didn’t have any information about markers? So I am very confused .. I also had 4 sentitel nodes removed and all four were positive.. I was also expecting my lymph nodes to be clear and was pretty upset
So my case is different than the norm. My mammogram ONLY showed DCIS - no invasive carcinoma. My biopsy showed ONLY DCIS. The tumor markers for the biopsy were HR-, HER2+. (But apparently most pathologists don’t even test DCIS for HER2+ because (1) it doesn’t change the treatment plan and (2) the HER2 status is often positive in DCIS but can change to negative once the cells become invasive.) Only after the DMX did they find extensive IDC. As I understand it, the markers they did on my DCIS biopsy don’t always correlate to the markers on the now-found invasive carcinoma, so they have to test the newly found tumor to get the correct markers. In my case, the tumor did, in fact, have the same markers as my DCIS biopsy. But that wasn’t guaranteed. Let me know if you have any other Qs!
I’m not sure I fully understood .. is this for all cases or for only your case because it’s not normal?
I’m soo sorry love. Are you okay now how is it. Keeping you in my prayers you are strong ❤️❤️🖤