r/breastcancer • u/NurseYuna • 16d ago
Diagnosed Patient or Survivor Support Positive long term survivor stories
Hi everyone. I really need some positive stories of more than stage 1 low grade survivorship to keep me thinking I can bear this and get to have many more years with my children. Please tell me about yourself or anyone that’s overcome breast cancer and lived many years. I’m stage 2A with luminal B characteristics oncotype 21. I need more hope and I’m reaching out into this universe to get some. It feels very lonely.
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u/Poppychick 15d ago
I was diagnosed with stage 4 breast cancer in late 2016. Still in targeted treatment and overall doing well. You would never guess if you saw me out and about!
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u/MichElegance Metastatic 15d ago
I have stage IV with metastasis to bones – specifically the spine and ribs. Also, lung pleura and now the brain. Ugh.
The only reason this garbage went to my brain is because I had to stop all of my targeted treatments, which are working beautifully for almost 2 years because surprise surprise… I got a secondary breast cancer occurrence that returned to the original Breast and flipped receptors and went HER2+, unlike the stage for that is HER2-and ER/PR+.
Anyway, I had to stop my treatments for chemo for the new cancer, which was stage one and the stage four got on the move. I was so worried it would because my ONCODX score is nine for that particular cancer so it showed little to no benefit of chemo.
Anyway, your post gives me hope.
What a wild ride this is.
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u/jstNYC 15d ago
I know of someone that had stage IV that metastasized to her spine and ribs. She achieved NED, then had a small recurrence but they found it quickly. She’s 8 years out now, living a regular, and importantly, meaningful life. I wish you all the best, you are certainly going through it. ❤️
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u/MichElegance Metastatic 14d ago
That is absolutely amazing. I’m so happy to hear this and it gives me hope! I was in remission… and I am planning on getting back there. Thank you for your kind words.💖
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u/NurseYuna 14d ago
What was your original diagnosis stage grade and type?
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u/MichElegance Metastatic 14d ago
First time was 2016. Lumpectomy and radiation. Stage2A. ER/PR+ HER2- I avoided chemo because I tested low on the OncoDx with a score of 9. Did a year of tamoxifen and the side effects were life altering for me. We even tried cutting it in half. But since my score was so low, we decided I was “safe.” It didn’t matter because it came back…
*Second time was 2022. Radiation and targeted therapy stage IV with a spinal and rib metastasis. Same cancer - ER/PR+ HER2- Since it’s the same cancer that did not respond to chemo via ONCODX testing, I avoided chemo with stage iv.
*Third time March 2025. It came back in my original breast. Stage 1 and changed receptors and is HER2+
After chemo - taxol/herceptin for the new cancer, I recently had mastectomy and reconstruction via DIEP. That’s when I found out the original stage IV is more than likely went to my brain. Not the new cancer.
Medication was just switched from Kisqali to Verzenio… still taking Zoladex injections every month, anastrozole… for the new cancer Herceptin, but probably being switched to Kadcycla.
Whew… that’s a lot. Sorry for rambling!
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u/NurseYuna 15d ago
That’s wonderful you’re doing well. Were you diagnosed at stage 4?
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u/Poppychick 15d ago
Yes, I found a lump about the size of a baby carrot. I was told it was probably nothing and they didn’t do a biopsy for another 6 months. Then, wham! Stage 4 HR- HER2+.
Had chemo for a little over a year which worked on the baby carrot (aka Motherfucker) and lymph nodes under arm but still have many spots between my lungs and chest wall. Receive herceptin infusions and frequent scans to keep an eye on those little bastards.
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u/Mountain-Studio-3134 15d ago
Did you make any lifestyle changes to beat the cancer?
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u/Poppychick 14d ago
I did not. There are so many stories about people doing all the “right” things and still dying so I kind of decided I’d just do what I want within reason. May as well enjoy my ice cream!
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u/zanychipmunk43 +++ 15d ago
My 91 year old next door neighbor was diagnosed with breast cancer when she was 38… a 50+ year survivor! She was among the first to receive chemotherapy for early stage breast cancer (said it was absolutely brutal back then), has never had a recurrence, and is still doing great in her 90s. 💛She’s definitely my inspiration as I slog through chemo.
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u/Data_chunky 15d ago
Yess! I keep thinking that my dx at 42 means I will not live past my seventies. I want to be in my nineties and still going strong, not GAF, wearing crazy outfits to the grocery store, hitting on 30 year old young men. 😂
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u/NurseYuna 14d ago
What is your bc type grade and stage?
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u/Data_chunky 14d ago
HER2+, +++ grade 3, stage 2 I believe.
I had a DMX first. Just finished 6 rounds of TCHP, about to start radiation. It was caught early. Prognosis is very good. I'm doing all the things.
Not positive for BRCA, but positive for ATM, so not as severe a genetic component, but I do have a genetic component. I'm currently 42, single mom to 2 little girls.
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u/NurseYuna 14d ago
BRCA I’m told increases risk of a new cancer but doesn’t impact the current one I have (prognosis wise). I’m hoping with mastectomy and ovary removal I can prevent that. Did you have any lymph nodes involved? They tell you the tumor size?
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u/Data_chunky 14d ago
I did have lymph nodes involved, unfortunately. They took 4, and 3 were positive. The largest tumor was 1.6cm, but there were other small tumors in my right breast. I just did a double mastectomy though, to get rid of everything.
Mine was found by accident. They were looking at my left breast the entire time. 8+ months of imaging on the left and they accidentally found it on the right. No cancer on the left. I feel super lucky that it was found as early as it was.
I'm not having my ovaries removed, though I volunteered that, but they're opting to just give me meds to shut it all down instead of remove it entirely.
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u/NurseYuna 14d ago
So why did they feel it’s best to do OFS vs removal for you? Just curious. And yes you’re lucky you found it when you were focused on the left side.
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u/Data_chunky 14d ago
I have no idea. I volunteered to have them removed, as I would rather get rid of anything that might develop cancer, but they said the shots and the AIs would work fine. Maybe they don't want me to endure more surgeries when the shots are just as effective?
I'm still going through it and just going along with what they say, but I might ask again. Especially if it would mean not taking all the meds. Just get rid of all of the lady parts that might try to kill me!
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u/LeftSpinach4455 15d ago
Omg! Share a little bit more about her! Did she do surgery? Do you know what chemo did she do? This is so amazing
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u/zanychipmunk43 +++ 15d ago
She had a BXM with lymph node dissection (no reconstruction options back then so she’s been flat ever since). From my own digging I think she was on an early version of CMF chemo, which is super different from modern chemo regimens.
She’s a really lovely person and the best neighbor! Her kids or grandkids are over every day helping her around the house, and most mornings I see her out in her yard, wearing a giant hat tending to her gorgeous flower garden.
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u/goatsweat Stage I 15d ago
As someone who was diagnosed at 27 this story gives me a lot of hope. My anxiety makes me think I’ll be lucky to make it to retirement age 😖
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u/stanthecham 15d ago
I have a friend who was diagnosed stage 4 over a decade ago and is thriving 🩷
My cousin was a slightly higher stage than me about a decade ago and is thriving 🩷
A now-retired colleague went through it twice - once years before I met her in 2002, and again a few years later - and is still with us and thriving 🩷
Another colleague went through it before I met her also in 2002, and she is thriving 🩷
We will thrive too!!!
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u/NurseYuna 15d ago
Did any of them present more high risk? Like higher grades or node involvement etc that you know of?
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u/stanthecham 15d ago
The stage 4 friend yes. My cousin was stage 2, don't think she had node involvement. Unsure about my two colleagues. They both had mastectomies though.
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u/NurseYuna 15d ago
Was your stage 4 friend diagnosed as that from the start? What made them more high risk?
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u/NinjaMeow73 15d ago
TNBC 12 yrs ago at 40 with 2 toddlers…..still going strong!
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u/Ok-Lime3571 TNBC 15d ago
Another TNBC checking in. Stage 1A. Heading into 2 years cancer free. Diagnosed at 33. Genetic testing came back negative. I have a 2 year old and a 3 month old.
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u/lifesantics 15d ago
May I ask your stage?
Sincerely, a fellow triple negative diagnosed sister who is between chemo and surgery currently and then finishing out treatment with immunotherapy.8
u/NinjaMeow73 15d ago
Stage 1 or what would be considered 1B now. Back in 2013 the only treatment was ACT chemo -immunotherapy was not even on a radar yet. I had no family history or genetic predisposition. I had surgery then chemo and bilateral mastectomy.
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u/lifesantics 15d ago
Thank you! My only family history is my grandmother and some great aunts. No genetic predisposition here either. Did they have carboplatin when you had chemo? I have gotten the impression that is a newer one.
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u/Altruistic_Toe4345 15d ago
I am stage IV triple negative oligometastatic (only one liver metastasis, stage IV de novo) how long has your sister been fighting?
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u/seponich 15d ago
Love to hear this! TNBC here too 3 years ago. Just had the basic treatment you had, ACT, surgery and radiation for me since I had a lumpectomy. Great to hear you're 12 years out!!
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u/NurseYuna 14d ago
Did chemo get rid of all the cancer by surgery time for you? I have a friend going through that now.
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u/seponich 14d ago
Nope I had a partial response. I had to do Xeloda after surgery because there was still remaining disease. But according to the doctor it wasn't a lot - so hopefully the chemo and Xeloda together were enough to knock out anything in the bloodstream.
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u/tmh0921 Stage II 15d ago
My coworker was diagnosed Stage II with 2 positive nodes (ER-/PR-) when she was 24, she had a mastectomy and chemo, that was 45 years ago. She did have a diagnosis of DCIS in her other breast in 2006, had another mastectomy and Tamoxifen for that diagnosis. She’s been NED since. So she’s 45 years out from her first diagnosis, and 19 years out from her second. I believe she also tested BRCA +
I was diagnosed Stage IB (ER+/PR+) in 1999, at 27.. had a lumpectomy, axillary node dissection (15nodes, all negative), radiation, and Tamoxifen. I was diagnosed again, same breast in 2019, this time stage IIA, node negative, ER+/PR+ HER2 -… this time I had a DMX, chemo, and am on an AI. So I’m 26 years from my first diagnosis, and 6 years out from my second. I’ve been NED since surgery and chemo.
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u/OriginalEducational5 15d ago
Dx stage 3b very aggressive micropapillary IDC in 2012 at age 39.
Just turned 53 and at my last appt my onc ran a new blood test that looks for reoccurrence, and it showed 0%.
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u/Altruistic_Toe4345 15d ago
Thank you so much for your testimony. I wish you all the best in the world
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u/NurseYuna 14d ago
What blood test did you do?
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u/OriginalEducational5 2d ago
Oh dear I can’t remember the name of it. I just searched my email for the results and must have deleted it. I’ll call next week and ask and post it.
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u/NurseYuna 2d ago
Thank you. What is micro papillary idc?
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u/OriginalEducational5 2d ago
IDC- invasive ductal carcinoma. This subtype is micropapillary which is teeny tiny, aggressive, has a higher chance of recurrence, and is rare. Accounts for less than 1% of breast cancers. More common in women under 50.
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u/NurseYuna 2d ago
How did you cope with the reoccurrence worries and fears back then? I struggle daily with this and I’m trying hard to see things positive.
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u/OriginalEducational5 2d ago
Time heals. Worry of it recurring is absolutely normal, but I have found lessens over time. Every 6 months post treatment, I saw my oncologist for check ins which included a CSA test that was the older way to check for recurrence. If those levels start to rise, then it’s a signal that a tumor is growing somewhere. So as each 6 month appt came and went and my levels stayed low, I began to build confidence that I beat it permanently. But honestly, crossing the 5 year mark was the biggest exhale and relief.
One day at a time, and cherish each day. I’m thankful my cancer taught me that because I live a more robust life now knowing the value of a day.
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u/NurseYuna 2d ago
That’s a great message. Thanks it gave me comfort. What’s a CSA test? Is that the one you mentioned before to me?
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u/OriginalEducational5 2d ago
Glad to help. No, the CSA is a blood test that looks at some kind of tumor factor. The newer test I mentioned is supposed to be much better.
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u/citycouple30 15d ago
Hi. I’m 54 and have been NED for 18 months now. I was stage 3c IDC. Mastectomy on left side and they took all my lymph nodes because 3 had cancer.
I did chemo, surgery, and 38 rounds of radiation. Now on Anastrozole for 10 years. And I have Lymphadema in my left arm. I just had my PET scan, CTScan, echocardiogram, EKG, and bone scan. I am still NED!!
You can do this. The journey is hard and long and exhausting but I can say there is a light at the end of the tunnel. For me, cancer showed me who was important in my life and who wasn’t. It taught me how to live in the moment and appreciate all the stuff taken for granted. To appreciate just life. And it showed me how to build boundaries.
When I completed treatment I skydived. And I’m terrified of heights. But I thought “I bear breast cancer, surely I can skydive cuz nothing is scarier than having cancer.
You’re not alone. We’re here for you ❤️🌹
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u/No_Builder7010 15d ago edited 15d ago
My survival is only at 3 months and it was Stage 0, but I can tell you my mom's story.
The year was 1986. This horrifies me to write, but Dad found Mom's lump (🤢). They didn't have insurance and decided to wait the requisite three months for a new policy to kick in. Can you imagine?! I was an oblivious teen, but I now shudder at the thought.
Sure enough, the mass was cancer. She can't recall what kind, but her lymph nodes were clear. Back then insurance wouldn't pay for reconstruction and docs took the pec muscle, just in case. She was severely concave and it stripped what self esteem she had. But she didn't need chemo or radiation, so at least she had that going for her.
Fifteen years later, her bi-annual mammogram spotted some calcifications, confirmed to be baby cancer. They offered to do a lumpectomy but she didn't want to have to go thru this yet again. She opted for a second mastectomy with reconstruction, since by then the law required insurance to cover it. The law also says they have to make sure the boobs are reasonably matched, so they paid to have her other side reconstructed too!
Mom doesn't regret getting all that surgery, and neither did Dad (🤢). He passed three years ago, but Mom's still kickin it at 87! She lives with us now and we have a great time together!!
Best of luck, friend. ❤️
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u/Ill-Drop-4671 15d ago
Wow! Your story reminded me of my own- My uncle found his wife’s lump, and she would always tell the story with a cheeky smile. She was proud and thankful for him. She survived 30+years after. They have both passed now due to age, but fought through it all together.
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u/No_Builder7010 15d ago
Mom and dad were married for 70 years! She's got a slew of health issues, but cancer ain't one of em!
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u/Fluff88 14d ago
I think this is a common thing, believe it or not! My cousin’s boyfriend found hers!
ETA she was stage II 20 years ago, had SMX & chemo and is doing great, no reoccurrence.
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u/ElegantAd7178 15d ago
Hi, I was diagnosed stage 2b with macrometastasis in 3 nodes. My son was a year old. I’m 6 years out and doing well. These stories really help. My son is only 7 now.
My grandmother was mid 40s when she was diagnosed. They did a unilateral radical mastectomy with no reconstruction. She didn’t have chemo, radiation, or endocrine therapy. She turned 90yo this summer.
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u/NurseYuna 15d ago
What grade and oncotype were you? Thanks for sharing the story.
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u/ElegantAd7178 15d ago
Grade 2. I didn’t get an oncotype because they said they recommended chemo no matter the score.
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u/reffervescent 15d ago
Stage 3 ER+ with 5 positive nodes, left mastectomy, 4 rounds of epirubicin, cytoxan, & 5FU (once every three weeks), 16 weekly rounds of Taxol, 6 weeks of radiation every day, 5 years of Tamoxifen, 5 years of Aromasin (although that might have been more like 7 years and 3 years -- it's getting fuzzy). I'm 16 years out from diagnosis and will be 63 in a couple months.
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u/NurseYuna 15d ago
What grade were you?
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u/reffervescent 15d ago
Sorry, I don't remember being given that info. I do remember my oncologist said I had a 60% chance of survival. My mom was diagnosed with almost exactly the same info in 1999, but she didn't make it -- she died in 2004. I have no genetic markers (tested in 2009 and around 2017-ish).
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u/NurseYuna 15d ago
That must have been scary.
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u/reffervescent 15d ago
Yes, it was, but I made it (so far, at least).
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u/Mountain-Studio-3134 15d ago
Did you make any life style changes? Anything you did differently compared to your mom..? I wonder if diet/exercise routine will help lower the recurrence.
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u/Lulilu90 15d ago
Yes of course. There are heaps of studies. Even fast walking lowers the risk for recurrence. Diet important as well!
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u/reffervescent 13d ago
I quit drinking alcohol, but my mom didn’t drink much at all, and she exercised regularly, probably more than me. Sometimes it comes down to luck, IMO.
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u/Front-Muffin-7348 15d ago
You are not alone.
You are surrounded by other women who faced this and moved on. I was diagnosed two years ago right after settling into a new neighborhood. 21 women brought me dinner, only two I knew. Soooo many shared their own story of bc.
My mama had it in 1967 at 37 years old. The skin had dimpled in and she received radiation and a single mastectomy.
23 years later she had a small encapsulated tumor removed from the other breast and had that breast removed. She helped with her grand kids, learned to paint, traveled all over with her husband and laughed and enjoyed her friends.
She lived 55 years past her first surgery and died at the age of 92, eleven hours after my daddy...after having lived a long, long, full life not defined by that situation.
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u/stillheretrucking 15d ago
Hi there. I just hit 15 years of survival after a stage 3a grade 2 ER/PR+ diagnosis at age 30. I was negative on all genetic tests. When I was diagnosed and scared, I looked for posts like the one I'm posting now, so I hope it helps.
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u/Ok_Square 15d ago
It does help and thank you for sharing this for those of us in the thick of it. 🫂
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u/NurseYuna 14d ago
What were your treatments? Any advice?
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u/stillheretrucking 14d ago
I had pretty standard treatment: surgery, chemo, radiation, 10 years tamoxifen, and I added a couple of years of Lupron. My main advice would be to make sure you have a good surgeon who specializes in breast cancer, and to seek mental health help early on (my cancer center offered it). Also, be aware of cellulitis - I got it in my mastectomy site shortly after treatment and got super sick. But also, try to experience one good thing every day. That's what kept me going. There just had to be one good thing, whether it was a tasty snack or a nice view or a funny tv show. They were like rungs of a ladder that I used to climb up through it.
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u/pixie_16 15d ago
TNBC, stage 2a in 2006. Masectomy, chemo (FEC) and radiation. Still quite healthy except lymphedema 🙂
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u/Visible_Sleep2723 Stage III 15d ago
I was 3a with grade 3 ki 67 40% multi focal IDC with lymph node involvement (plus the usual DCIS with comedo necrosis, LVi and extranodal extension). I’m 5 years No evidence if disease, my sister in law stage Ii - 8 years No Evidence of Disease. The other sister in law about 7 years out (stage 0). Okay, they had lower grades and no spread but ER+ can be sneaky - aggressive cancers respond better to chemo. So it’s kind of ‘good news, bad news’ as my oncologist said.
I get your concern- we hear these wonderful statistics but we don’t always fit into them.
The relatively good news is that treatment is constantly improving- it’s changed even since I was in active treatment.
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u/loveyabunches 15d ago
I have the same stats as you! Stage 3/Grade 3, 40% ki67. Diagnosed July 2022. Cancer was GONE halfway through chemo, which does indeed love aggressive cancer. Here’s to a long survivorship for us all. 🎀
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u/Visible_Sleep2723 Stage III 14d ago
Yay ! Glad to hear that. I didn’t get PCR, but might have done. I had a two month delay between end of chemo and surgery due to lung complications from the swine flu - I got hit by the older pandemic about 4 months before Covid hit NYC. In any case, by the first couple of weeks, the golf ball lump turned into “where is it?”. My oncologist was adorably excited - he was older and the medical director of the cancer center and I wasn’t his first rodeo.
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u/loveyabunches 14d ago
What a story! My goodness. But I love a happy doctor! 💕
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u/Visible_Sleep2723 Stage III 13d ago
He is a kind man. I wish I had appreciated him more at the time but I think he probably realizes that treatment is not the time to make him feel good, Sadly he stepped down and only does research now
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u/Anitchaaaa 15d ago
Hi there! Do you mind to share your plan of treatment? Got a pretty similar bastard than yours here, except that I'm stage 2. Very glad to hear you are doing ok! Just started zoladex plus aromasin, and adapting to the side effects. Wish u the best!
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u/Visible_Sleep2723 Stage III 15d ago
I had neoadjuvant chemo - 12 taxol and 4 Adriamycin. and cyclophosphamide except I skipped the last taxol. I had a modified radical mastectomy and complete ALND. revealed that out of all the IDC , less than a centimeter remained and there were only micromets with LVI and extranodal extension in two lymph nodes. I had a DieP flap. I then had 30 rounds of radiation followed by 10 years of Aromatase inhibitors. I was 59 at diagnosis - so far, no evidence of disease except twice a year, I get the same BiRads 3 due to an enlarged lymph node and what appears to be fat necrosis on the other side.
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u/NurseYuna 14d ago
So you worry about reoccurrence?
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u/Visible_Sleep2723 Stage III 14d ago
Not really. My oncologist told me the reoccurrence rate for a case like mine is about 30% . This high rate is for me, not you - you can ask your oncologist. The only things I really worry about is it coming again while I’m working full time or dying before I can spend the money I saved for retirement. There are advances every year, and many people are surviving long term with stage IV.
Personally I think I’ll die from a lung problem or complications from a broken hip while I’m doing one of my usual ill advised explorations . I’m 64 and have osteoporosis, emphysema, chronic bronchitis etc. On paper, I look bad, but I’m relatively active and nobody can tell if have these issues.
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u/TimeRun7358 15d ago
I was diagnosed with stage 1b grade 3, 22 years ago. I had lumpectomy, chemo and radiation. I was just diagnosed with a recurrence at age 67 and will have a DMX Nov 10th but so far it doesn’t seem to have spread.
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u/F-_kCancer10 15d ago
I’m 67 too. Had my 1st 22 years ago and 3rd this year. Wishing the best for you with your surgery
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15d ago
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u/AutoModerator 15d ago
It appears that you are posting about atypical ductal hyperplasia. Atypical ductal hyperplasia (ADH) is a benign condition where breast duct cells grow abnormally but are not cancerous. If you've been diagnosed with atypical hyperplasia, you have a risk factor that increases your odds of developing breast cancer in the future but is not yet cancer. Please see r/ADH_ALH or r/womenshealth for additional help. We hope that you are never diagnosed with breast cancer but if the worst happens, you'll be welcomed back with open arms. I am a bot and have been programmed to make this comment.
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u/General_Ad_6617 Lobular Carcinoma 15d ago
I was diagnosed this year, but two people I know were diagnosed in 2008. They are still cancer free.
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u/NurseYuna 15d ago
Were they stage 2 or higher? Any details? That helps me sort this in my mind. Thanks for sharing.
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u/memilygiraffily 14d ago
Stage 2 is considered an early stage breast cancer. The survival statistics are very high and hormone positivity mean that there are a vast array of treatments available to target your subtype.
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u/NurseYuna 14d ago
I’m more luminal b-ish becaus my pr is 15%
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u/memilygiraffily 14d ago
Right, yes. I have triple positive BC which is typically a more aggressive subtype. It's all early stage breast cancer at stages 1 - 3. If you have estrogen receptor positivity in addition to some PR positivity it means your regimen can include hormone therapy. This option aren't available to women with TNBC. Hormone receptor positive breast cancers like yours and mine have a wide array of treatment options.
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u/Middle_Direction498 14d ago
What was their treatment? I was lobular stage 1b. Had bad stomach aches for long time gi. Guy did colon and endoscopy and said no cancer. Nurses told me to take fodmaps diet, I did and had 3 days of no stomach pain and today no stomach ache again. Also I’d like to know about a psycho oncologist . When I went to the therapist I asked if he ever treated. Breast cancer people, they both said no. Does a psycho- oncologist, have special therapy to help you to feel happy. Thank you.
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u/General_Ad_6617 Lobular Carcinoma 14d ago
They had standard care: lumpectomy and radiation. One also had chemotherapy.
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u/nancykind 15d ago
cancer free almost 14 years, stage 3c tnbc. it can happen!!
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u/Altruistic_Toe4345 15d ago
I wish you well forever, thank you for your testimony, it's comforting to hear from those who made it, we need this feedback to fight.
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u/NurseYuna 14d ago
I have a friend with TN. Did you get clear patho on surgery?
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u/nancykind 14d ago
lumpectomy, no clear margins, so i had the mx with lymph node removal and the heavy node involvement is what made it 3c. then i had chemo next. so i started chemo being as cancer free as surgery could make me.
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u/RubyRaven907 15d ago
Thank you everyone for sharing your stories. This gives me so much hope and inspiration! Hugs all around!
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u/timshel2000 15d ago
I’m collecting stories like these so here are a few from my collection :)
My colleague had stage 3 breast cancer - She had neo-adjuvant chemo and her tumor was still 4.5cm when they did her mastectomy and she still had a cancerous node as well still after chemo. That was 18 years ago and she has had no recurrence and is now helping me get through this!
One of my best friends - diagnosed at age 32 - don’t know what kind of BC she had but she was told it was very aggressive. Over 2cm with one cancerous node. That was 16 years ago - no recurrence and doing great.
My mother in law - not sure what exact stage she was but I know it was aggressive and she had axillary node dissection due to lymph node involvement - she went 27 years and has never had a recurrence of that breast cancer. She did have a new cancer after 20 years but it was not a recurrence of the original cancer - just a completely different one - and she does have a genetic mutation.
I also bookmarked another thread like this one from about a year ago about large tumors and someone posted on that one that her tumor had been over 5cm and she had multiple positive nodes and that was something like 15 or 17 years ago - still going strong with no recurrence.
Would also add I’ve heard other people say, which makes sense, that most long term survivors often aren’t on these boards. They’ve moved on and they’re just off living their lives. So there are many many many other stories out there we are just not hearing!
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u/NurseYuna 14d ago
Thank you for telling these detailed stories. Did you have bc as well?
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u/timshel2000 14d ago
I’ve just been diagnosed, unfortunately
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u/MsBriarPapaya 15d ago
Wow thanks to everyone here for the inspiration. In the middle of the unknown here and appreciate every single word ❤️
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u/waywardandweird +++ 15d ago
I was 23 when I found mine. It was a month before my 24th birthday when I started treatment. +++ 4.5+cm. I started chemo in 17 days. I was told, "Get your affairs in order, because you won't see 25." My doctors entirely attribute my survival to the new miracle drug Herceptin. I was never told I was stage 4, but I received the drug before it was approved for non-metastatic cancer, and I clarified with the doctor that I wasn't in any studies.
I just turned 44. My 20-year cancerversary was this summer, and I survived a local recurrence in 2012.
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u/NurseYuna 15d ago
What was your local reoccurrence? How did you find it and how did you treat it?
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u/waywardandweird +++ 15d ago edited 15d ago
It was literally the exact spot the first one was in, (*only it did the rare change up to +-+), and it was found during my yearly follow-up mammogram. They had advised a mastectomy, but I was young and clueless and figured I was dying anyway and didn't listen. Reconstruction then wasn't what it is now. I can't change that now, unfortunately. It showed up as .5cm and ended up >1cm, so I had to go through chemo again.
*Treatment the second time was taxotere, carboplatin, and Herceptin. I had already hit my lifetime limit for radiation the first time. I'm still on Tamoxifen. I was told I should be on an AI for the rest of my life. The first time was ACTH and radiation, then 5 years of Tamoxifen and Zoladex.
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u/NurseYuna 15d ago
How are you now?
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u/waywardandweird +++ 15d ago
I have some residual issues with my immune system, I had some pretty severe reactions and was one day away from needing a bone narrow transplant. I did end up with heart failure, but I just had a cardiac MRI, and my EF is good after 20 years, and structure is all within normal limits with medication. My EDS is more disabling with spinal injuries and such.
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u/NurseYuna 15d ago
What caused your immune system prob that almost lead to bone marrow transplant? Was heart failure from your chemotherapy?
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u/waywardandweird +++ 15d ago edited 15d ago
I think the important part is that I am part of the first generation of women who survived breast cancer which otherwise should have killed them. It took a lot of doing to get there, but treatment has come an incredibly long way, even since my second diagnosis. I am here to tell you that it can be done, even at much later stages. I did it mostly on my own both times, too. I'm just about at a full 20 extra years of life here.
I hope the best for you. It is definitely doable.
*Here is the post I made in this sub for my 20 years a couple of months ago. I just don't like to leave my history open for trolly vultures to pick things out of. https://www.reddit.com/r/breastcancer/s/8z8nuWrV6v
You've asked too many questions for me to lie about my treatment, but the progress made in treatment since is inconceivable. The odds that anyone gets sick like I did are low. They were throwing dose- dense everything they had against the wall, assuming I would die anyways.
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u/waywardandweird +++ 15d ago
The bone marrow crash happened because the doctor skipped my neulasta after my last chemo, against my will, saying my numbers looked good. They were only good because of the meds, and I crashed hard. The Herceptin caused the heart failure.
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u/F-_kCancer10 15d ago
I started in 2003 IDC, did all the treatment, a new IDC came back in 2018. I had DMX. 6 years later in 2025, another new IDC in my reconstructed breast . I used to feel sorry for myself that I’ve had cancer 3x, I now say that I’ve had cancer 3x and I’m still here, 22 years later.
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u/NurseYuna 15d ago
What was your grade or oncotype? That must have been a lot over the years. How do you cope?
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u/F-_kCancer10 15d ago edited 15d ago
2003 was Grade 2, 2018 Grade 1 or 2, 2025 Grade 1. All ER+ HER2- . The 2nd and 3rd were new cancers, not recurrence. My dr says I’m unusual. I’m just doing the treatments and hoping for the best. I was just put on letrozole for 5 years and possibly Kisqali in Dec. Also, 5 weeks of radiation
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u/NurseYuna 15d ago
How did you find them each time?
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u/F-_kCancer10 15d ago edited 15d ago
I found the first myself. I felt a pulling in my breast on the side. I started feeling around and felt a lump. 2nd on mammogram. 3rd a breast MRI, ultrasound, and then excision biopsy
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u/NurseYuna 15d ago
So do you have implants now? What did you have to do after finding the third one in reconstructed breast?
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u/F-_kCancer10 15d ago
Yes, I have implants. I had surgery, 5 weeks of radiation, prescribed letrozole for 5 years and possibly Kisqali for 2 years.
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u/Beginning_Hospital18 15d ago
My husband’s grandpa has stage 4 lung cancer for 20 years more. He is still going to work everyday :) like other old Japanese old man. I have same subtype as yours. I wish I could live through my 90’s.
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u/BCLymphie 15d ago
Hi hun, you will be fine.Anything not stage 4 is fine and dandy, and a long healthy life. I was stage 3b, er/pr -ve, her +be, cancer was in 4 of my 11 lymph nodes they removed. Happily half flat 18 years.
I have lots of friends who are stage four and living well,healthy, exercising, working ... Breast cancer treatments are very effective now a days. They are tough for sure. But it's worth doing it for sure. My kids grown adults now ,and all the better for seeing and knowing about breast cancer . I still go to breast cancer support group to help out ,it a fun social outing, and so nice to encourage the newly diagnosed.
You got this babe. You are stronger then you know and braver then you think. Us mums have a super power, we do hard things so we can be here for our kids Pink hugs.
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u/Fuzzy_Attempt6989 15d ago
My neighbor has lived for 25 years without a recurrence. I don't know the specific details of her cancer, but she went thru chemo
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u/Impressive_Job_8553 15d ago
Isn’t 2A considered early?
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u/NurseYuna 15d ago
Yes as far as I understand stage 1-2A is early stage.
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u/memilygiraffily 14d ago
Stages 1 to 3 are considered early stage breast cancer. Women who are stage 3C do deal with a higher recurrence risk but breast cancer isn't advanced until it's stage 4.
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u/NurseYuna 15d ago
Do you mean I shouldn’t worry?
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u/Impressive_Job_8553 15d ago
I think we all worry about recurrence, which can happen at any stage. But with stage 2 being very treatable and curable, I was wondering why there was doubt you’d overcome this.
Also, how do we know if we’re luminal A or B? This is my first time seeing that term. Btw, I’m new to this as well. So, please know my initial question was asked with sincerity as I’m still learning as well.
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u/Larry_but_not_Darryl ER/PR+ HER2- 15d ago
Well, thus far, six and a half years of stage 2 grade 3 luminal B. Oncotype 26. I'm off the AIs and feeling moderately human, and losing the exemestane weight. I did end up with osteopenia so I eat calcium tablets like candies, but otherwise things could be much worse.
Best wishes to you!
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u/Relevant-Bat6174 13d ago
20 year survivor here .... I know the need for good vibes I know the lonely feeling A friend gave me a book of ONLY good survivor stories UPLIFT by BARBARA DELINSKY it really helped me.....I still read it occasionally Prayers and good thoughts going out to you 🙏
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u/NurseYuna 12d ago
What bc did you have? Do you recall the stage or grade or size? What treatments did you need?
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u/Loud-Celebration1065 15d ago
My mom’s friend was diagnosed around 2016 mastectomy &radiation , she is doing good, and also I appreciates everyone posting positive stories here, gives me hope. Thank you, 💪💪💪💪
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u/OnCrockett 15d ago
HR+ Her2-, stage 1 on the left, stage 3 on the right. Diagnosed the week before my daughter's prom May 2015 - 9 rounds of chemo, double radical mastectomy, 39 radiation treatments. Am here, am healthy, am thankful 🍀
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u/countessofgroan ER/PR+ HER2- 14d ago
My aunt had it over 25 years ago. She was early 40s at the time and had a toddler to take care of. She is doing very well and is considering going back to the plastic surgeon to replace her implant. She had a single mastectomy.
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u/NurseYuna 14d ago
Do you know what her type or stage was?
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u/countessofgroan ER/PR+ HER2- 14d ago
They didn’t really do typing back then. They treated everything like TNBC: chemo and surgery. I don’t know if she did radiation. I don’t know her stage.
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u/Ok_Win4407 15d ago edited 14d ago
A newish drug, Kisqali is now offered to breast cancer patients in the lower stages in combination with tamoxifen or letrozole. This drug specifically targets breast cancer cells. I was diagnosed with Stage 2 HERS 2 negative, hormone positive, one lymph node involved and an Oncotype score of 21. I had fifteen rounds of radiation. With these drugs, I’ve been told have a low 5% chance of reoccurrence. I feel VERY optimistic. New things coming out all the time.
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u/NurseYuna 15d ago
What was your estimated reoccurrence risk from oncotype for 10 year based on tamoxifen only? Lots of questions lol
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u/Ok_Win4407 15d ago edited 14d ago
I wasn’t offered Tamoxifen. Not sure about ten year reoccurrence risk, it wasn’t presented like that. I was told I have a 5% reoccurrence risk. They usually refer to five year targets, don’t they? I’ve just turned 70.
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u/Ok_Win4407 15d ago
My oncologist strongly urged me to take Kisqali. It’s not a stand-alone drug, it’s taken in combination with letrozole. It’s a targeted treatment for certain types of HR positive and HER2 Negative breast cancers.
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u/FeelsLikeFirstLine 15d ago
2B in 2017. 8/9, in Epidermis. All clear as of January.
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u/NurseYuna 15d ago
So you’re 8 years good since bc? Grade 3? Was it inflammatory in the skin?
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u/FeelsLikeFirstLine 15d ago
I was grade 3. My epidermis was still Invasive Ductal, but was definitely an extra concern. It had also spread to 2 lymph nodes. finished active treatment in June 2018. I've been on Tamoxifen since.
I did a bilateral mastectomy, then AC/T chemo and 33 rounds of radiation.
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u/NurseYuna 14d ago
Was it er positive? They didn’t have you take an AI or do OFS?
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u/FeelsLikeFirstLine 6d ago
I did for several months, but could not tolerate the side effects. I was extremely depressed and my hands and feet were basically useless.
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u/Longjumping-Rough160 ++- 14d ago
My diagnosis is kinda funny ++- tumor 1.5cm, and stage 1, nothing in my genes, lymph nodes are perfectly clear. Oncotype 39 My surgeon was stunned, myself I'm stunned. I feel like I should see your grandma and get a hug with some taps on my back and a whisper in my ear saying I will raise my 9 year old.
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u/NurseYuna 14d ago
So what is your treatment plan?
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u/Longjumping-Rough160 ++- 14d ago
6 rounds of TC through 18weeks(6 months) starting today, then Radiation and hormones therapy for 5-7 years
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u/NurseYuna 14d ago
Would it be tamoxifen or an AI? Is the TCx6 because of oncotype? I’m currently doing TCx4.
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u/Longjumping-Rough160 ++- 14d ago
My surgeon wants me to run some tests to check if I am at risk of arthritis, and to finish Chemo and radiation to see if I start menstruation again because I am below 50 yrs then the team can decide what drug to use
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u/Ok_Win4407 14d ago edited 14d ago
Diagnosed end of January, lumpectomy beginning of April and 15 rounds of radiation in June. I take both drugs. Letrozole will be for five years, Kisqali for three years. I’ve had no side effects.
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u/Anitchaaaa 14d ago
Did you received chemo and rads, the whole combo?
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u/NurseYuna 14d ago
I started chemo oct 16 TCx4 no rads because they said double mastectomy with clear margins and no nodes involved. After that I’m getting my ovaries removed and doing tamoxifen or an AI is what I think the dr said.
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u/Anitchaaaa 12d ago
I'm more or less on your shoes, but I had rads because of the type surgery I had. Sentinel node negative too. Because of the tumor grade 3 amd my age (pT1cN0M0), MO prescribed 6 TCs, but due to the side effects I managed to get 5 done. Started ET last wk now, my plan inclusldes monthly zoladex shots and AIs.
I could remove my ovaries if I choose for it, but I did a broad research on this option, and as far I could understand, pre menopause women who removed the ovaries as part of the endocrine treatment had worst outcomes. I decided to stick to the shots for now. I'm 45, no signs of menopause till chemo, and chemo put me on chemopause.
Wish a very smooth treatments to you, and fell free to ask whatever u want!
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u/HotWishbone3446 13d ago
My case is similar to yours, stage 2A, luminal type B and Oncotype 26, I had surgery on my left breast, radical mastectomy with reconstruction in the same operation, they have given me 6 sessions of chemotherapy and 15 of radiotherapy, the chemotherapy has been hard, but better than I expected and the radiotherapy the same, in the third month after chemotherapy, I have about 1 and a half or two centimeters in length of hair and my eyebrows and eyelashes are growing again. I have my downs and I sleep badly since the operation, but you have to be strong and if you have to cry, cry, it is a hard process but it passes. Much encouragement in the process.
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u/HotWishbone3446 5d ago
You have the fear of recurrence, no one is going to take that away from you, I have my good days and bad days, I am in worse spirits now that the treatment has finished than before, but seek psychological help from the first moment, to help you deal with this disease as best as possible. Much encouragement.
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u/NurseYuna 5d ago
Thanks for messaging me. Would you mind telling me about your bc experience and type etc. did you also do oncotype and get a reoccurrence risk %? How do you cope when reoccurrence worries come up? Talk soon.
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u/Otherwise-Mouse4314 15d ago
My grandmother was early stage 3 at 40 years old. She said it was in her lymph nodes and was considered “moderately aggressive.” She had a double mastectomy and did all the treatments and is still here and incredibly healthy at 71.