CALLING ALL STAGE I SISTERS
Comments
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Mimi congrats on the good report
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Bluepearl, Did you have lumpectomies or mastectomies? I had mx and am only taking Arimidex. The second one might not have been large enough to do the oncotype test. I was 71 at diagnosis and sometimes wonder if they think I'll die of something else, so why bother. I think my HMO works a lot like the Canadian healthcare system.
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I had mastectomies. I guess I should just quit worrying because it won't change things, good or bad....and run with the good news. The pain from aux. dissection made me do a sentinel the second time, which ended up making the painful arm LESS so....a strange but welcome event. I probably should try an A.I. instead of tamoxifen and will mention this to my oncologist when I see him in August. Wren44: I hope we do die of something else MANY years down the pike.
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Wren44..........Your Oncotype DX breast score is one of the highest I have seen with the exception of my own at 100!! Yep, that is exactly what it said. Now having said that, my Grade was 3 on the pathology report. I would have been thrilled w/ a grade 1 in July, 2011. I'm certain I would not put a whole lot of faith in blood work values. Just this week my onco told me the TM's (that I refused to do anymore) where not absolutes which I had already drawn that conclusion. Just refill my Tamo and let me get out of here. The one new thing is that around the first on this month I had read about some oncos from studies for certain women were recommending taking tamo for 10 yrs. instead of just 5 yrs. My Onco confirmed that.....told him to put my name on that list. LOL
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Norma Jean, I think you confused me with someone else, or misread what I wrote (or perhaps I didn't make sense, that happens). I didn't have oncotype done, so have no score. I do remember someone on here who had like 97 or close to it.
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My oncologist said 10 years of tamoxifen.
Im thankful to have something helping me keep cancer from coming back,0 -
My onc said 5 years of tamoxifen and then 5 years of AI. She put me into chemical menopause, so I am straddling that.
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Wren44..........Oops. I am sorry. Re-read what you wrote & misread what the 71 referred to. I apologize to you and ask your forgiveness for my crazy vent.
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NormaJean, no apologizies necessary. Wasn't Norma Jean the real name of Marilyn Monroe? And you're blond too.
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Yes, that was Marilyn Monroe's birth name and no, I'm not blonde. I need to get a new picture up post all the BC journey. It is FINALLY gotten darker w/ some "silver threads"
Thanks for understanding.0 -
10 years for me too!! For the love of Tamoxifen....ha ha.
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This was a new recommendation that I read in a article which just came out the first of June in studies that had been done. Luckily I had a 6 mon appt w/ my onco on the 12th & confirmed it w/ him. He has always been in favor of longer usage but I can't take the Als.
Does anyone on the list have a onco that has done the test to see if your body is metabolizing your tamo?
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Norma Jean I had the metabolizing test done and found that I am a high metabolizer of tamo. The study of the 10 use was reported on at the San Antonio Breast Symposium back in Dec. In Jan I asked my MO about it and he to confirmed 10 years for me but would really like at least 2 of the 10 to be an AI if I ever go through menapause. But like your MO he has always been on the 10 year thought process with me as well, so I guess this study just confirmed it.
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Thank you, Sherry. My onco was at the SA Symposium back in Dec. 2010. His office is not using it on a reg. basis as he wasn't impressed w/ the clinical substance. Well, in the office is a younger female onco that I alternately see & when I go back in Dec. I will sweet talk her into running it. Only a fair request if I am willing to take the tamo for another 8 yrs. !!
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Norma Jean my MO said that there was a study out there saying the metabolizing test was not all that reliable but he said he still likes to use it anyway.
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NormaJean - My MO runs the CA-27.29 tumor marker test, but says she does so because she is "old school". According to her, it has been found that an abnormal result is a true sign that something is amiss. However, a normal result can mean either a true normal or a false negative so less credence is placed on it. She still orders it on the off chance it will help to catch something early if it does come up abnormal.
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TinaT I had three CA 27.29 during the chemo & Herceptin process. I had such terrible anxiety & fear that I could hardly stand myself. Told the onco what was happening & pleaded w/ him that was not what I would call quality of life. At my age, I had already decided I didn't want anything else regardless.....simply live my life in joy & spend time w/ my grandson. This last visit on 6/12 he concured that the TM's where not absolute all the time. I just about fell on the floor w/ that admission.
The only extra blood work I am considering is to see if my body is metablizing my Tamo if I am going to be on it another 8 yrs. (CYP2D6). I do have my CBC and Metabolic Panel done every 6mon along w/ a complete physical exam. I feel that the onco has done everything, I have done eveything requested me plus more and the rest is in God's hand.
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Norma Jean - I have been having the CA-27.29 along with all the other bloodwork (chem panel, blood counts, vit D levels, etc) for the past two years, but this comment from my MO just came a few weeks back. I will continue to do it every six months, but I can understand why you would defer based on your decision to make no treatment changes based on the results either way.
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TinaT thank you for understanding. Your Oncotype DX was a GREAT score while mine was 100 and your Grade is I. You are in a good place, just my opinion. You even got to do recon while my BS made an "OOPS" on the second MX which left me w/ a Simple MX instead of Skin Spraring. Oh well, everything happens for a reason. Best of luck to you and keep up the good work.
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NormaJean - I'm sure you have heard this before, but I am so sorry about the "ooops". That should not happen with anyone. I can't imagine your thoughts when you heard this news.
On another note - I also am ER+ and PR- which have been told is very unusual. Have you been told anything more about that?
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I'm ER+ and PR- why is that unusual???
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Loral - I'm not sure why ER+ and PR- is unusual.....that's just what my surgeon stated to me. I guess I have been noticing that myself as I am starting to get acquainted with all the wonderful women on this thread...
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My BC was multifocal. One was ER+PR- and the other was ER+PR+.
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Hey cricketsandfrogs !!! I don't know what the significance of ER being the opposite of PR. When I first discovered the forums I thought I was the only one that was odd
but since being back I have seen a few here & there. The onco never said anything and I was so overwhelmed & in shock that with all that was going on that I never ask. Really, what difference does it make.........it is what it is. I look at it as another combination of the same thing........BC. Until you get this ugly mess (I have more colorful words for it but I'll be nice) no one realizes all the difference things that make up BC. We are not all alike in other ways so why would this be any different?? Wren44.......I would have to dig out my pathology report, but I don't believe mine mentioned anything about multifocal.
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I just read a study that states Tamoxifen doesn't work for PR-, so I wonder why my MO wants me on it when I'm postmenopausal and according to the study it won't help. Why can't all the MO's out there follow the same guidelines. It also says if PR- you have an aggressive type of cancer, which will probably recur as bone mets...But, I am stage 1, grade 1...All this is crazy!!!
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Loral I agree it's all crazy. If you wait around long enough you will hear/read studies going both ways. I read the other day that the higher the Grade the easier to successfully treat which make no sense to me. I see you were also HERS2-. Wonder how that factors in to anyone's tx? Have you asked your MO about what you read? Could you send me a link to this study?
Best thing is not to over load on info that might stress you out. Stress is one of the worse things in life but especially BC. Take care & don't let this jouney steal your joy of getting up every morning to a brand new day.
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Hello, I am new here and recovering from my surgery on 6/13. I've spent much of this time reading the helpful posts here!
I am interested in the use of chemotherapy on stage I cancers. it seems fairly common, yet articles I read question the effectiveness of chemo on BC vs. the negative side effects. I'm wondering if women have noticed that oncologists are quick to recommend chemo, or if they seem moderate in their recommendations.
Melinda
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Melinda, did your oncologist order the oncotype test to determine if chemo is needed? Hope you are feeling better.
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Megonzal......many times it is the onco protocal based on not so much the Stage but rather the Grade. If the Grade is high then oftens times they order Oncotype DX to determine what the patient's "Breast Score" is and what treatment is required. Some of us "Sisters" are more blessed than others. What was your HERS2?
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Hi Melinda - Based on my oncotype test, I am not doing chemo, only rads and then a med afterwards. I think using the score on the oncotype test can really help determine the course of treatment. Good luck to you!
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