Any IDC/Stage 1/Grade 1/ES&PR+ Her2- ever had recurrence?
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I know this post was 2019 but wanted to chime in. I have always been pear shaped. Wide hips. I did Coolsculpt and lost my saddle bags in 2018 and then did keto summer 2019 and lost 35 pounds in six months. Fast forward to finding a grade 2 stage 1 lump in 2020.
My husband used to tell me I was full of estrogen. It was a joke. My lump was estrogen positive 95%. my theory, I overloaded my body with estrogen when my fat cells were let lose with Coolsculpt and with keto. Estrogen lives in fat cells. I am 60 and my doctor said breast dancer was just My bad luck. Really wonder about weight loss...If I was a young science major, I would be doing all sorts of research 😂
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Hi! I was diagnosed in 2014, IDC, stage 1, grade 1, HER2- I had a lumpectomy on right side and radiation, I was told I had less than a 5% chance of it coming back. I am going into 6 years and had my mammogram 2 weeks ago and sorry to say that I found out last week, it has returned and it’s in both breast. I was devastated. I go tomorrow to meet with surgeon to find out my options.
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Hi Ileepak,
I tried but couldn't tolerate tamoxifen. I tried so many things - lower dose, different times, different brands, split dose - but the fatigue was crushing.
My oncologist let me try toremifene instead. It is also a SERM. In the USA it is used for metastatic cancer and not approved for preventing recurrence in premenopausal women, but it is more commonly used in Asia (where the genetic variation that interferes with tamoxifen is more common). It does not have nearly as much evidence for it as tamoxifen does but there is some quality evidence that it is equivalent to tamoxifen.
Even though they are both SERMs, many women don't experience identical side effects, so I thought it was worth trying before I tried ovarian suppression and an AI. For me, it worked out fine. Some side effects but completely tolerable. I've been on it for about seven months now but if it continues like this, I can see being on it for 10 years, no problem.
It was a huge relief. I'm honestly not sure what I would've done if it hadn't worked - tried OS/AI or just quit. I'm so so glad I didn't have to decide.
My oncologist's only concern was that insurance might not cover it because it is considered an off label use, and even the generic is much more expensive than tamoxifen. But thankfully that worked out alright. There are also drug assistance plans that can help.
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Dear Salamandra,
Thank you so much! I will look into that. My oncologist doesn't seem to want to recommend anything else. I am trying to find different avenues myself . . . so all input is so much appreciated.
God bless,
Eileen "Ileepak"
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austnsmom99 . I am sorry you had a recurrence, I had a very similar diagnosis and I too had a recurrence and needed a mastectomy. Have you had a biopsy already? Hope you get good options tomorrow. All the best!
rebalilly, not sure we will ever know for sure why some cances happen. Hope all goes well for you too!.
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Rebalilly, I too lost weight and then got cancer. I purposely lost 40lbs in 2014, in part of course, to look better, but the biggest part was so I wouldn't be overweight and get ovarian cancer like my mom! She passed from it.
So, what the heck, I get estrogen positive breast cancer in 2018.............
And, thanks to Covid and being a lot more inactive, I have gained back 10 lbs, but currently back on my low carb lifestyle again.
You can't win.
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Thank you all for posting! Sorry I have been missing for a while. I didn't loose a bunch of weight in relation to getting cancer. I did loose 15 lbs tho after I got cancer dx....which actually was probably good for me to do that. I wasn't overweight but felt better after I lost that weight.
Rebalilly: So sorry for your dx. I hope all goes well with your treatment going forward. Thank you for sharing your story with us here.
Austnsmom: I am so sorry as well for your dx. Wow stage 1 first time and it returned..... That is why I started this thread because I wondered if anyone out there stage 1 initial dx had it return....? So thank you for sharing your dx. So what is your dx now? How did your appt with surgeon go? I hope all goes well with your treatment going forward. So sorry to hear you are going through this again. I am going to be having a MRI soon to just make sure all is well.
bennybear: So sorry to hear you had a recurrence too. Thank you for sharing your story as well. Bennybear how was your second cancer dx found? Mammo, MRI, ultrasound? Was it a recurrence in the same breast or different breast? Sorry for all the questions. My first dx was caught early so I am all about diagnostics and making sure I am checked every 6 mo. I didn't do radiation or tamoxifen, right choice for me, but because of that I am really making sure I am followed every 6 mo. My breast dr wants me doing more than one diagnostic yearly. My trust level in mammo's isn't high because of my highly dense breast tissue. Mammo didn't catch it the first time. But maybe could in the future not sure.
kksmom: We had a similar dx. Sorry to hear that you too have had breast cancer dx. Hope your treatment is going well. Thank you for sharing your story on this thread.
Hope you all have a wonderful week. I have participated in a study recently called the Pathfinder Study. They are looking for people to join around the country. Several locations in the USA. If you are interested in joining the study here is the link:https://grail.com/clinical-studies/pathfinder-study/
I should have my study results next week. I think it is great they are trying to catch cancers very very early! Too many people die of cancer each year, alot of them had cancer caught too late. And I sure would like to see cancer caught earlier.
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That study sounds very interesting Jons_girl......I wish I was in one of their locations,,,,,,,please do report back, would like to hear your study results, if you are ok with sharing, of course.
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I was DX in 2011 with IDC, Stage 1, Grade 1. I had the Oncotype test that said my chances of a recurrence was 8%. While I knew it was not a guarantee it was still encouraging.
Fast forward to now I’ll be 9 years out next month. So far, so good.
Diane
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kksmom03: Ok! I will report back when I get my results. Some of my extended family also joined the study so will be interesting to see what our results are. Oh that’s too bad you don’t live near a study site.
Diane: that’s encouraging!! So glad all is going well for you! Hope that continues forever!! I hope that for me too! I’m 3 years out all is still good. But having awful joint pain from menopause. I probably wouldn’t be able to stand being on a AI. It would have made my joint pain unbearable I bet. So I am glad I chose to forego that option
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Hello Girls,
I would like to thank all of you for sharing your experiences. As you can see from my previous posts, I had invasive ductal carcinoma with tubular features . . . tumor size was 0.7 cm . . grade 1 . . . estrogen and progesterone positive . . . nothing in the lymph nodes . . . Thank God. HER2 was 2.6 millimeters so since it was such a small amount, my MO opted for no chemo . . . . I had a left lumpectomy February 1, 2019 with radiation and then they wanted me to do five years of tamoxifen. After 5 months, I could not tolerate the tamoxifen anymore . . . it worries me . . . they have been watching my right breast since I was diagnosed. Now they have me coming every 6 months for a mammo/sono . . . the last time they brought me back in to repeat the mammo and sono . . . . it freaked me out. I have my 6 month visit this August 4th and I am extremely anxious and worried . . . I usually don't give it a second thought until the day of but for some reason I am freaking out a little . . . I have been out of work with rotator cuff surgery and schedule to go back August 17th . . . maybe I just have too much time on my hands. I am starting in a new position in the hospital in Cardiology and I keep thinking . . . they have been waiting for me what happens if I get a bad review August 4th . . . I just want to continue on with my life and I feel like I am always waiting for the other shoe to drop. I fell on ice going to work back in December and tore my rotator cuff and bicep tendon . . . continued working because the x-ray came back with nothing broken so I thought it was a contusion . . . I finally had surgery and my husband said "well everything comes in threes" . . . I thought "oh no" . . . I'm Irish so I am superstitious lol! I feel like was I hit 50 years old, everything hit me at once . . . . I was always healthy . . . do not drink or smoke?
Please say a prayer for me ladies and I will for all of you . . . for anyone out there who is religious, pray to Father Salonis, a Saint known for healing. Not that I am all that religious but I do believe there are those looking out for us and taking care of us.
Regards,
Eileen "Ileepak"
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Good morning Eileen:
Sounds like you’ve been going through a lot with your surgery and new job etc. what stage was your cancer when found?
I was grade 1, stage 1, tumor was 4mm or so. Her2- er/pr+
I did not go on tamoxifen. And I did not have radiation. I do have diagnostics every 6 mo. Which I prefer. Because I’m all for catching things very early if it were to ever come back.
I will pray for you. And I’m sending a virtual hug to you. I am a Christian and I will be praying to Jesus Christ for you. He got me through cancer. I do worry at times because I’m human. And worry is part of life. But I know He is always with me. I had amazing things that happened during my Br cancer journey. He was in that journey.
I take each day.....and try to live each day as a blessing. If there is one thing my breast cancer journey has taught me it’s that life is a wonderful blessing. And I want to enjoy each day!!
I hope today is a wonderful day for you!
Smiles, Tami (Jons girl
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What a wonderful uplifting message Jons-girl, thank-you for that. Having God in our life is truly a blessing!
Susan
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Thank you cargirl. You’re welcome 🌺 I completely agree with what you said about God
Wanted to update you all on the pathfinder study I joined. My results came back today and it was negative. I'm very thankful.
I am scheduling my breast MRI tho because my breast dr wants me to have one because of the pain I've had off and on under my lumpectomy. The pathfinder study person said today that we should still have regular testing or be followed going forward. So I will have the MRI in the near future I think
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Dear Tami,
Thank you so much for your kind words. My cancer was very similar to yours only mine was 7mm . . . I had radiation as well. Good news . . . everything went well . . . so I am good to not worry for another 6 months lol!
Thank you so much for your prayers and advice . . . I truly appreciate them.
Regards,
Eileen "ileepak"
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Eileen,
I'm so glad your treatment has gone well. Yes that's all we can do is try not toworry, and be as healthy as possible. Fresh air, exercise, good healthy food, cut back on stress...and have diagnostics.
I hope your healing journey after cancer goes well! We are all here for support. Sending a hug your way.
Hope you all have a wonderful weekend ladies
Tami
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I’m newer here. Why does losing weight increase estrogen?
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ashlynn525:
Sorry for my late response 😕. I’m not sure I knew that loosing weight increases estrogen. Hopefully someone else who knows more about this subject matter will respond to this post. Good question thi
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hello sweetie i was diagnosed at 42 while planning our 2ns marriages i found the lump in shower. My fiance now husband and family with my faith got me thru had my cry several times. I wanted a lumpectomy didnt want to go into new marriage with one breast cause my body rejected the expander after only one filling. It was removed. I received 3 mo chemo before and after Lmast got married i was stag2 0/3 nodes. Then 7wks rads and 5 yrs on tamixifen. Praise God this yr ill be 27 yr Survivor no recurrence. Hang in there. msphil
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MsPhil....you are the BEST. Stay well! And...stay safe
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Hope all are doing well!
Have a wonderful week Ladies! 0 -
I was just diagnosed with a recurrence albeit my grade was and is 2. Had lumpectomy and radiation in 2016 and have been on tamoxifen for almost 5 years. Still figuring everything out - just had a MRI on Friday...but it's back.
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carlsoda:
Wow so sorry to hear this news. You had cancer 1st time, the year before me. 😞
What was your ki-67 rate 1st time and now? Is it pretty much the same as the first dx?
Mine was 9% but I forget where the cut off is for stages 1 and 2. I think it might be 10?
I hope your treatment goes well. Is it recurrence on same side? Keep us posted. We are here for support. Sending a hug to you
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I am not sure and I don’t see anything in my pathology report. Yes this is recurrent on same side. Had a MRI on Friday and just waiting for the results.
Just so you know I was very diligent having 3D mammograms and even had one on March 1st - didn’t catch it. Can’t trust these mammograms at all! Or at least us with dense breasts. This is the 2nd time a mammogram has let me down.
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I recently was diagnosed with metastasis to my L1 vertebra after IDC 1A ER+, PR+ HER2- nearly five years ago. Bone Mets were found because I had been complaining of hip pain so had scans, and blood work had shown a spike in CEA tumor marker. My oncotype score had me at only 8 percent chance of recurrence. Now I start Ibrance and Xgeva this Friday. Already started taking Femara again at the beginning of the month.
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@FGodmother I remember you from 2016! I am so sorry it has spread. My recurrence is in the breast ( I think/hope) just waiting for MRI results. So stupid when we do what we are supposed to do and yet it comes back. Take care and hope the treatment can bring you some relief to your hip.
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Carlsoda, I am sorry you are also back after nearly five years. Here’s hoping that they MRI finds whatever is easiest treated. I will be praying for your good outcome
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Carlsoda, how did you find the recurrence? Praying your MRI is clear.
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I actually had a sore on my breast that wouldn’t heal. They took a biopsy of it and low and behold cancer. Now I know what cancer looks like on the outside of the body or part of it 😂 whatever right??!!
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I am recently diagnosed and still waiting to schedule surgery. I’m more freaked out about the hormone blockers than the surgery and radiation. Mine is also small and early stage. Does not appear to have lymph nodes involved but won’t know for sure until surgery and testing. I wondered what the Effexor is? I thought I had read that you couldn’t take Black Cohosh with tamoxifen. I have been on HRT for 15 yrs since menopause (currently I am 65) and with going off them along with blocking any natural Estrogen, I’m really concerned about quality of life. Thanks for any info on help with the side effects. Hope you’re doing ok now
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