Hello everyone,
I am a Breast Cancer Patient Support Manager at SHARE, and a two time cancer survivor myself. I had breast and colon cancer. I am wondering, what type of breast cancer do you have? Is it TNBC, DCIS, ILC, IDC, Inflammatory Breast Cancer, Lobular or something else?
I have er/pr + her2- IDC. Dx stage 1 (node negative ) in 2008, stage IV recurrence in 2019 after chemo /rads/surgery and 6.5 years of femara for stage 1 .
hi. I have the same ca as you. If you don’t mind me asking why did you get chemo at the outset? I’m also in Frmara x
Stage 1 diagnosis my oncotype was 22. It was decided that chemotherapy might not give me a large benefit so they gave me cmf chemo weekly for 6 months , followed by radiation and then femara .
ah now I understand. Thanks. My oncotype was lower. Wishing you the best x
what is “oncotype”. Is 22 high or low?
I was diagnosed with metastatic BC de Novo in Jan 2016 I know a lot of lingo now but that word is new to me 😊
I was initially diagnosed with DCIS, but I haven’t heard that term since. 8 months now. Maybe it changed?
DCIS means your cancer didn't break through the ducts and it is unlikely it will come back if it was removed. Blessings, Hannah
DCIS ER+ diagnosed MBC de novo May 2015
Kerry we were diagnosed about same year. I had lumpectomy Dec 2015 and diagnosed Metastasic Jan 2016. I am glad to still be alive and doing well. I hope you are too. 😊
I’m very glad to be alive 🤗 thanks for asking!
I have ER/PR+ HER2 neg. IDC. Diagnosed denovo in June 2021.
I had FEC chemo as a jump start and now on letro and ibrance
Kim
what is FEC chemo? I have had taxol first 6 months weekly. 😊
it’s an IV combination of fluorouracil, epirubicin hydrochloride, and cyclophosphamide.
I had 6 rounds, once every three weeks. And then asked for 2 more jolts of the high test before starting the daily meds.
I’m not sure if the extra 2 made any difference, but I tolerated it so well, that I figured, why not?
Kim
thank you Kim for explaining. Is that combination for stage 1 or 2? Not metastatic breast cancer? I have not heard of any of those meds before now.
stage 4. I was diagnosed denovo. Also no symptoms or family history. It was a complete surprise.
I was offered a choice of starting with this IV chemo treatment or right into palbo/letro. I opted for the chemo to give it a good jolt first.
Kim
I will keep this combination treatment in mind. 😊 Taxol did not work much for me even tho I have never had chemo before.
it’s amazing how many different medications and combinations there are. It’s great though, that we have this many options.
I wish you all the best with your treatment ☺️
Kim
I had Letrazole 👎🏻then Abraxane when Letrazole failed. I ultimately had 9 rounds although every doctor I saw had a different opinion and kept changing the proposed number downwards but my consultant kept changing it back up. I’m glad I went with the IV chemotherapy as the second line because my cancer was moving rapidly but since then I’ve been stable on Afinitor/Exemestane and after ten months - Exemestane alone. That was in April 2017 and up until now I’ve not had to change treatment. A lot of people don’t like the idea of IV chemotherapy but I feel it’s the reason why I’ve been able to stay on Exemestane for so long although that might be about to change depending upon my next scan which is being done because the last scan showed something where it shouldn’t be.
Your comment about the different types of breast cancer and multiple treatments is the reason why we probably won’t see a one-size-fits-all cure. We are seeing better results from new treatments and there’s still more options coming on line every year. And that’s all good! Having to deal with it, is not so good 😢 but it’s a blessing to be able to share our experiences, both good and bad, with people who know what we’re going through.
All the best
Kerry
ER/PR+ HERS- ILC - Currently on Verzenio and Exemestane (Aromasin)
DCIS Stage 2 in 2002, Stage 4 in 2014. ER/PR +, HER2-
wow 9 years of stage 4! Congrats!! What is your protocol may I ask? I have the same dx since 2020 and they are moving me on 2 nd line if treatment ( off Ibrance na on Faslodex).
I was diagnosed w/MBC 1/15/2014. Lung tumor was HR+, Her2-neg just like my early BC. Was started on Letrozole alone(old protocol), changed Med Centers then 3rd PET for them showed extreme progression in both lungs and bone, was started on Taxol IV chemo, made it for 7 treatments and had life threatening rxn, then put on Faslodex alone(my choice) and I still am on Faslodex alone( I had one rogue lymph node in my chest enlarge over a yr of watching 2020-2021 had it biopsied, receptors unchanged, so it was radiated away) and here I am still on Faslodex alone. Scans next month. God's will.
so good you became stable! I agree. Gods will. 😊
Hi there, I am ER/PR+ lobular that even though I'm ESR1 negative, has proved to be endocrine therapy resistant. I love this site, and everyone on it....for the inspiration, knowledge and strength they have given me. Take care!
I’m like you fiercefighter. Lobukar ESR1 dang that ESR1!
Diagnosed with IDC in 2000, stage 1 no nodes involved er/pr positive. Diagnosed with metastatic breast cancer in lungs 2017. Treated with Ibrance/Letrozole since then. Have done well except extreme tiredness as time goes by. Changed to two weeks on and two weeks off in December with oncologist approval. Blessings to you. Hannah
DeNovo 1/2022 Lobular ER/PR+ HER- ESR1. Mets to bones. Second line Kisquali, faslodex but going on clinical trial May 1 so off meds for cleansing.
I am sorry yall, I failed to add what I was dx with. I was IDC ER/HER
You need to clarify. This support site is for those with METASTATIC or Stage 4 breast cancer only. Those with an early stage are not usually on this site--and there is a HUGE difference..
Hi LadyKatarina,
I am aware that this is a group for people with METASTATIC or Stage 4 breast cancer. However, I was accepted into the group, and my purpose is not to offend, or to necessarily get support, but to support. I am a Breast Cancer Patient Support Manager at SHARE, and am here to give and receive new information on the subject. I appreciate your concern, and I hope you understand why I am here. Respectfully, Adamskd1
I think that if you are comparing--you might get skewed results if you do not also tabulate whether the person has Stage 4 or early stage. If I were reading your tabulations--I would not deem them valuable without that information. I have lived with stage 4 for 5 years, and would not compare myself to early stagers. I also have a background in medical research, so I take stats seriuosly. But hey, this is your survey--so do what you want! Accurate or not! But I'd suggest to please qualify the source of your numbers.
This was merely a question. It has nothing to do with stats or any comparisons.
Hmmmmm... It still seems to me that you are on the wrong site. Best to you in finding your way!
Hi Adamskd1;
I guess I really don't know. The original labs say that it is an invasive carcinoma, ductal cell type. ER/PR positive andHER2/neu negative. I was diagnosed in Oct 2006 and then Jan 2015 with MBC.
Please tell me what I have. Also, where did I go from this page to the page where the nurse gave instructions for injections.? I am not computer literate!! I'd like to remember how to get there and read other articles as they come along.
Thank you for your help.
You are correct to say that you have MBC - metastatic breast cancer if that is what your labs say. Contact your oncologist to get clarity. This is the site for information concerning MBC. Also, you can call SHARE MBC Helpline at 844-275-7427 option 6 to speak to a highly trained volunteer that is also living with MBC.
If you need more support - we (SHARE) has several breast cancer educational programs, and breast cancer support groups via Zoom. Here is the link to these resources.
SHARE Breast Cancer Support Groups
sharecancersupport.org/cale...
SHARE Breast Cancer Educational Programs
sharecancersupport.org/cale...
Hope this helps!
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