Single Hormone Receptor Positive -> ER+/PR-/HER2-
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Murfy - thanks for the link. I’m still 1A, even with a moderately high Ki67 and oncotype. Which is good news. And luminal B, apparently. But whatever categories I fall into, I still feel good about the mastectomy/chemo/tamoxifen route. I’m with Patsy on this - I can’t stay fixated on all the stats and what-ifs. I’ve done and am doing what I can and while I have life, I’m focused on living.
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Thanks for all the information, Murfy! Like you, I expect to be on AI's for a long time to come but if it keeps me alive, well, that's just ducky with me.
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wanderweg, how are you finding the tamoxifen? I decided against it taking it but sometimes I second guess myself.
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moth - I’ve only been on it a month, but so far, so good. I honestly can’t tell I’m taking it except for a tiny bit of wooziness when I lie down to sleep at night (I take it in the evening, at the same time that I take melatonin, so I can’t even be sure which is causing that symptom. And it’s a good symptom - helps me fall asleep.) I had some osteopenia prior to the cancer, so I’m hoping the tamoxifen will help me build my bones back up a bit. I asked my MO about why it would even be an option if I was triple negative on the oncotype and he said I was still ER positive, even if weakly so
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wanderweg, glad you're adjusting to it well so far! I suddenly have full out osteoporosis now so that sucks. My MO said in his opinion the risks of tamoxifen probably outweighed any potential benefits for my weak ER. He did say there isn't really much info to guide anyone's decision making on this and he thought there was no right answer really & kind of left it up to me as he didn't really feel like he could recommend a course of action. I feel like we're little guinea pigs here
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Moth - One thing to consider, when you are post-menopausal tamoxifen actually improves bone density (it decreases it pre-menopause). That’s one of the reasons I went with it instead of an AI. Of course, there are still other risks - small risk of uterine cancer and blood clots. But I had a hysterectomy years ago, and I’m at very low risk of blood clots because I’m thin and a nonsmoker. I hear you on feeling like guinea pigs. With each decision in all this you have to weighs pros and cons and then just leap
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Hello - I am 6 years out from ER+ 100%, PR- HER2- (grade 3, luminal
I only took Tamoxifen for 3 years...I was non PCR after neoadjuvant chemo at surgery. I had residual cancer in breast tumor and 1 lymph node - although great reduced in size from original scans (micromets).
How does PCR vs Non PCR correlate with recurrence rates for ER+/PR-? Any info on this? I was told by my onc that having any residual cancer keeps me at a 30% chance of recurrence regardless of all other factors.
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hi everyone, anyone have any thoughts? ..I'm grade 1 ..but high ki67. Seems like I'm smack in the middle. Story of my life lol. My understanding is that luminal b also has lower estrogen percentage. I was 100 % on staining but 68% on oncotype. I was told I was luminal b by 2 oncs and breast surgeon. After finding research that supports luminal b may respond to chemo and discussing with onc my gut led me that direction. Murphy thanks for the link to the new staging guidelines. As someone previously mentioned worrying too much wont change anything. We just need to advocate for ourselves, stay in tune and report any changes in our bodies, and focus on enjoying life with family and friends. I wish everyone a healthy 2019!
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hi everyone, anyone have any thoughts? ..I'm grade 1 ..but high ki67. Seems like I'm smack in the middle. Story of my life lol. My understanding is that luminal b also has lower estrogen percentage. I was 100 % on staining but 68% on oncotype. I was told I was luminal b by 2 oncs and breast surgeon. After finding research that supports luminal b may respond to chemo and discussing with onc my gut led me that direction. Murphy thanks for the link to the new staging guidelines. As someone previously mentioned worrying too much wont change anything. We just need to advocate for ourselves, stay in tune and report any changes in our bodies, and focus on enjoying life with family and friends. I wish everyone a healthy 2019!
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When I asked if I was luminol b my oncologist said our labs don't report luminol A vs B. He said your lack of progesterone receptors is what makes your cancer more concerning. I get the feeling my oncologist gets asked these questions and doesn't want to discuss it to me. I am a mathematician engineer I want to know. I know I am far from a medical doctor but my mind desires to hear whatever has been discovered or researched. I do realize so much boils down to statistical outcomes.
I wish we knew what causes these cancers maybe then we would have a hope of prevention.
Since my diet, weight, exercise are good I guess I could look at my emotional well being. Like many of us I desire my good health and never wish to see cancer again.
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jojo - I don't know about the non-PCR thing, but it doesn't make sense to me that your recurrence risk would stay at 30% regardless of treatment. Because if that were the case that nothing will make a difference, why would your MO have you do tamoxifen for any length of time? Seems like it had to lower your risk some. Or maybe there is something in this I'm missing.
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Wanderweg - that was if i did not continue with treatment which i stopped.
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jojo - Oh, I see. Sorry I didn't follow at first!
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Hi All,
I was first diagnosed 15 1/2 years ago with TNBC ILC node negative stage 1b. I had a lumpectomy, AC for 4 rounds, and radiation. I am BRCA negative. I have since have pre-cancer in my endometrium, and remaining fallopian tube as well as 1 pre-cancerous pulp in my colon.
Last month I was diagnosed with ER+PR-Her2- IDC and now with an Onco score of 28. I am stage 2 grade 2 node negative. My MO and surgeon want to start 4 rounds of TC.
I had my 2nd opinion and I am glad I did because she did reaffirm our decisions so far and gave me her thoughts on the future if thing progress as we think they well. She said due to the size of the tumor she say the 4 TC will not totally shrink my tumor as I know my friends tumors had, on more chemo than 4. She said also the pathology of the upcoming Mastectomy after Chemo may show a different pathology as the tumor can have more than one type in the same mass. So for long term treatment we will have to wait and see. Starting TC tomorrow.
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Hello...
I have been cancer free for 6 years this past October took Tamoxifen for 5 years and really had no problems with it...Fingers crossed for NED every year here after....Love to All
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Loral did you do chemo?
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Both Loral and I had high oncodx scores, 34 and didn't do chemo. Most people in the high score level do chemo.
I made 4 years on AI drugs, now over 7 years out no cancer.
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I am Oncotype 27 and not going to do chemo. Initially my MO was recommending it, but I am being treated neoadjuvant with anastrozole due to where tumor situated, not size, it was close to chest wall, so they wanted to do neoadjuvant to shrink before lumpectomy. After seeing my response to anastrozole on ultrasound (my tumor reduced 70% in 3 months) my MO changed her mind and said no chemo, but recommending 5 years of anastrozole post lumpectomy for sure and likely 10 years of anastrozole. They will count the 8 months I've been on it towards the total time.
Also wanted to post this I received from my sister today:
https://www.jpost.com/HEALTH-SCIENCE/A-cure-for-ca...
not sure how far out or accurate this is, but feels exciting just to see their direction.
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I think AI drugs like anastrozole are often dismissed as not effective as chemo. So glad hear mysticalcity tumor is responding.
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Mystical, thanks for sharing paper! I think targeted toxin peptides is the wave of the future and the more companies that get involved, hopefully, the cheaper the drug will be. Best of luck with your treatment!
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Thanks for the encouraging news, Mysticalcity! I, too, declined chemo and will start an AI early next month. I think I read that it might not be quite as effective in a PR- cancer, but I am hopeful for good results and no side effects, and it certainly worked well for you. That's great!
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LPLlibrary.girl I am also PR negative, but the anastrozole seems to be working great for me. Even my MO seemed surprised. I will pray you get great results also and no side effects. I have had some side effects, but nothing I can't handle. It was a bit worse at first, but most much more settled down after the first few weeks--I had some things like hair loss and fatigue and achiness--but again nothing horrible, it was manageable. Exercise/walking really helps with the stiffness. I am doing a magnesium, flax, Omega 3/6 and biotin routine that I think helps with the hair loss. Probably the one thing still ongoing is I have a bit of "roid rage" it seems from anastrozole. I definitely have much less tolerance while on the anastrozole for stuff than I used to.
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I never had any hair loss on anastrozole or exemestane but did have dry skin, dry eye and joint pain and an ear ringing problem.
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Meow 13 - I am having a real problem with dry mouth and now extremely dry lips on exemestane. I am trying all sorts of lip moisturizers but nothing seems to help. Only 3 more years to go...... Sigh.
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Tomorrow marks 1 year since my last chemo treatment. My oncologist approved me to get off all hormone drugs March 5th, wait 3-5 months and then see if I can still conceive naturally. If not, I have embryos and eggs frozen as a back up. I have been feeling amazing and have completed all surgeries and such. I live a very active lifestyle with weight training, mixed marital arts, and yoga. I'm 31 and was only 29 when I was diagnosed. It's nice to revisit this thread to see the 11 year cancer-free anniversaries and to see how well our "Less Common" type of breasties are doing. For those recently diagnosed or searching for answers, I found this thread helpful and I know advocating for myself with all my doctors, led me to get the treatment and help I deserved and needed. Don't be afraid to speak up and ask questions ladies! We get one life.
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What a wonderful, up-lifting post, krisckris! Best of luck and here's hoping by Christmas there is a sonogram adorning your refrigerator door!
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I just 'passed' my 12 year mammogram!
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congrats ruthbru!!!! You truly are my idol! To many more!! Deb
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Congratulations Ruthbru!!! You are an inspiration! I love the success posts, really motivates me!
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Happy to report that yesterday I had my annual MRI and Right-breast mammogram and ultrasound and all is clear. Haven't quite cleared 1 year yet. (QUESTION: my lumpectomy was May 7, 2018, so would that be my anniversary? Or would it be May 30, 2018, the date I finished radiation?)
Even though I drive 2 hours each way to get to these appointments, I have to say that having someone's eyes on me quarterly (between my medical oncologist visits and screenings someone sees me every few months) makes me feel watched over.
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