Stage 1, grade 1 and pre-menopausal
Comments
-
Pre menopausal women should not be too concerned about validity of oncotype DX for the reasons that VR explains and also because most of the cancer genes responsible for cancer proliferation and invasion such as ki-67 etc that are measured in the oncotype DX are not age/menopause dependent and are known to increase aggressiveness of many other cancers. Simplistically speaking the less cancer activation genes present the lower the recurrence score and lower risk of recurrence. So menopause status should not make that much difference which fits with the data we have so far
0 -
Oops, Vorasious, you already answered my question. Guess I better go read that article quick! I do still want to know what makes my tumor different though, I had thought that it was because I was young and had more years to live, then I thought it was because young women tend to have more agressive tumors, meaning HER2/greater grade, I'm just confused! I keep going back to the fact that I was ONLY stage 1/Grade 1, this is NOT coming back, how could it!? I know that's not totally logical, but I'm not getting the logic!
0 -
Thank you ladies for the replies! That makes me feel better....
0 -
I think I need the oncotype company to do the same stats with ooph/lupron in place of chemo...
0 -
Hi Julie you are right I will have a look at adapting the title of the thread when I am feeling energetic! I was surprised to see so many women stage 1, grade1 and premenopausal and it seems it's not all that rare (just fantastic odds for long term survival (hooray). A new study recently published from the UK and Canada suggests that BC may represent as many as 10 different diseases and learning more about outcomes will continue to help target treatment for aggressive BC and provide confidence in less aggressive tx for women with a favourable prognosis e.g. No chemo and maybe even no hormone treatment needed for some women. There is still a lot we need to learn.
Re the SOFT study, I think they have finished recruiting but to allow long enough follow-up and initial data analysis I think it will be about 2018 by the time it publishes but it may be sooner. Finally I prefer the side effect profile of tamox to AI s for now and would like to maximise my benefit from tamox and possibly switch to AI at 2 or 5 years. For now osteoporosis will be a problem for me with prem menopause plus AI whereas tamox will probably strengthen my bones. I am also on zometa which will help keep my bones strong0 -
Annice, Oh gosh, no rush to add info to the top! Just a thought...
Thank you so much for sharing your thoughts and expertise!
0 -
Hi All,
I love reading VR responses she is truly a medical dictionary and brilliant. I really appreciate the data you presented regarding that 30% of the women were under 50 in the onco study. I think that is pretty decent representation. Like, Julie- I read and think about "have I made good decisions" frequently (daily). Having a bm for a 3.8mm tumor seemed pretty drastic to me but based on family hx a good decision. After trying tami and fareston with awful side effects I live with diet, exercise, dim and Metaformin and hope for the best. When I read the great information on this profile I can be calmer.
Stage 1, grade 1, oncotype 1- hopefully I have done enough. I have considered Lupron shots but fear has prevented me from doing this.... Its comforting to read that there are many long term survivors.
best to everyone,
Chocolate
0 -
SOFT trial was conceived in 2003. Recruited patients beginning in 2006. It closed in January 2011 and accrued 3000 patients. Estimated release of information should begin as early as Q3 of 2013!
0 -
2013!!!! Geez!! I just realized that's a few months away!!!!! OMG!!!! Keeping my fingers crossed and holding my breath that O/S was worth it!
0 -
Voraciousreader - thank you for continuing to be a wealth of information! As early as 2013!!!!!! Awesome!
0 -
VR, if closed means that the last patient was recruited in jan 11 then I would assume that the late cohort of patient would not have data to include until about 5 years after that, therefore delaying analysis until there is an adequate follow-up time for the late comers to power the study. But i really hope you are right VR because i am desperate to know the results. Have there been any press releases or anything to indicate that we are near to some new evidence?
0 -
Hi, I realize this post is from a while back, but there are so many replies I was hoping you could help me. I had multi-focal IDC, 3 tumors, BMX in March. Since I started on Tamoxifen (no chemo-oncotype score 5) I went to see a GYN who tested my hormone levels. I am 50 years old, and apparantly not close to menopause. My estrogen level came back at 537 (he says 350 is the high). He wants me to come in for a pelvic/ovarian ultrasound. I had the BRACA test, it came back negative. Now that I'm clear of breast cancer, should I be worried about ovarian? What are als? I'm thinking the high estrogen levels may have caused the bc. I had a mammogram 1 year ago, then had 3 tumors?? I guess that's how it goes. Any advice or information is greatly appreciated!
0 -
Annice....I totally agree with you that it will take a number of years after they close a study to get definitive data. However, here's what our government's clinical trials website says regarding the study's time frame:
"September 2013 (Final data collection date for primary outcome measure)"
"Primary Outcome Measures:
- Disease-free survival [ Time Frame: For first time at a median follow up approximately 5 years ] "
Sooooo, I'm guessing that when the trial meets its final data collection date in September of 2013, they will have already known how the enrolled patients of 2006, 2007 and most of the 2008 patients were doing. Will it reach statistical significance? I haven't a clue. But that group will have been followed for MORE than the 5 year benchmark by September of 2013.... In fact, they must already know how those patients enrolled from 2006 and 2007 are doing. So, I'm guessing, by September of 2013, they SHOULD have some preliminary answers. I'm hoping it will be good news.
Regarding any new information relating to the study....I haven't heard or read anything. But I am sooo on it! I was looking down the list of the lectures for the June ASCO meeting, hoping to see something about the SOFT trial...but nothing jumped out at me. Is it my imagination or does there seem to be a veil of secrecy about the trial??? I am not sure what to think. I am just a bit worried...because my gut tells me that if there was anything of significance, they would release information sooner rather than later.....
Estimated Enrollment: 3000 Study Start Date: August 2003 Estimated Primary Completion Date: September 2013 (Final data collection date for primary outcome measure) 0 -
Okay....I just emailed my local hospital that is part of the clinical trial and asked when we might hear something and the reply I got was "It is up to the sponser." Hmmmm...
Meanwhile, under the ask the expert column here at breastcancer.org....someone asked if there was anything new that came out of the 2010 San Antonio Breast Cancer Symposium about the SOFT trial and the answer was nothing. Didn't see anything at 2011's symposium. Doesn't look like anything is on the agenda at next month's ASCO annual meeting...
Just toooo darn quiet for me......
0 -
Update....I just emailed IBCSG in Switzerland....don't know what time it is there....but hoping that someone will tell me when they MIGHT begin releasing SOMETHING.........
0 -
Hi Traceyb, there are a few of us on this thread who have gone for ovarian suppression because of concern about the effects of estrogen on disease free survival despite tamoxifen but the evidence for this approach is, as you have been reading, awaited. Some people go for ooph and that's certainly appropriate if there is an increased risk of ovarian cancer based on family history or BRACA gene, or if the scan shows anything of concern. Discussing the options with your gyn or mo will help you work out what is best for you. It's an individual decision as to whether you go for a more aggressive or conservative approach as there is no one size fits all answer!
BW
Annice0 -
Thanks for your efforts VR, it all seems v quiet on the SOFT front. Do you know who the sponsor is? I thought it was totally government funded. Perhaps a pharmaceutical company has a vested interest?? However I suspect that as the data will be analysed centrally and will be a massive piece of work, it may just be too early at this stage for any media release, I guess we will have to continue to be patient!
BTW thanks for thoughts I am recovering ok!0 -
Annice... The IBCSG is the sponser. Hope it's morning in Switzerland soon.....
0 -
Tracey, I think I saw a comment awhile back that tamoxifen can actually increase estrogen production. It blocks receptors so the concern isn't how much estrogen your producing while on tamoxifen. Someone please correct me if I've misunderstood!
I tested negative for BRCA but I do have a strong family history, if you have a family history, it might be worthwhile to see a geneticist. I hadn't actually been aware of some of the family history until I started collecting information for my geneticist.
Because of my family history, my gyn is having me do yearly pelvic ultrasounds.
I'm not clear on what AIs do exactly, I just know that they are used for women AFTER menopause has set in. I don't think they would be recommended for you with your estrogen levels.
VR and Annice, Thank you again for sharing your knowledge of the SOFT trials and research in general. It's all so illusive to most of us!
0 -
The tamoxifen raised my estrogen levels and overstimulated my ovaries. Very painful. So my MO stopped it and I ended up having a hyst/ooph (ovarian cancer in my family) and going on Arimidex, now Femara.
0 -
Came across this magnificent book, The Art of Medicine:
http://www.amazon.com/The-Art-Medicine-Images-Imagination/dp/0226749363
Thumbing through the pages, I came across 18th Century women's novelist, Frances "Fanny" Burney. While most people might be familiar with her most famous book, Evelina, I learned in the book that she wrote, in vivid detail, about the mastectomy that she had in 1811. She passed in 1840...well into her 80's.
Talk about survivors....Fanny should be our poster woman!
Imagine...back in the 1800's to be able to WRITE about breast cancer...and continue to have a successful career and very long life following a mastectomy.....Amazing! Wondering if she was Stage 1, Grade 1, Premenopausal when she was diagnosed??? Anyway....I am posting this hoping to cheer everyone up. When you're thinking of going to a dark place.....think of Fanny instead!0 -
Looks like a fascinating book, I'll be ordering a copy!
0 -
Check with your library! It's an expensive coffee table book! I try not to buy books. I have an addiction to books and would be broke if I bought all of the ones that piqué my interest. The book though, is fabulous. I passed it along already to two friends....
0 -
VR Thanks as always for the updates and trial info. And I will think of Fanny on those darker days!
Still awaiting the decision on ovarian suppression. I was thinking that I was approaching and possibly entering menopause - my body is (sadly?) letting me know that this is not the case. LovesChristmas - I didn't realize that Tami increases estrogen production?
Switzerland is 6 hours ahead of EST
0 -
Thanks Joy! Haven't heard from them yet... I will try again if I don't hear from them in a few days...
Good luck with your decision...0 -
Hi Julie, yes tamoxifen raises estrogen levels by feedback because it competes with estrogen at receptor level. However the tamoxifen blocks the important sites (except the endometrium- hence the risk of endometrial cancer.) AIs block conversion from testosterone to estrogen in peripheral tissues ESP fat in post menopausal women. In this context, as no estrogen is being produced by the ovaries, the main source of estrogen (to feed the BC) is fat in peripheral tissue, hence the blockade/inhibition. Hope that makes sense, if not I will re- explain, sorry it's late here in uk!
0 -
VR so lovely to hear about fanny's story and long term survival from the 1800s, how wonderful to hear about a long term survivor back then when there was no adjuvant treatment....must have been grade 1, stage 1!
0 -
Hi AnnieMD and all,
Last year I was tested and I still have not hit menopause in any shape or form. I do take dim and was wondering if there are any tests that assist in deferentiate between good estrogen and bad estrogen- similiar to what you would test when someone is taking tami? any help would be appreciated.
thanks so much
chocolate
0 -
Afraid there is no test to differentiate between good and bad estrogen chocolaterocks
BW
Annice0 -
Annice,
thanks so much. How do the tami users know its metabolizing or is that a controversial test?
thanks
Chocolate
0
