Topic: Stage 1, grade 1 and pre-menopausal

May 15, 2012 04:37 PM Annicemd wrote:

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

May 15, 2012 04:40 PM LovesChristmas-Barb wrote:

Thank you ladies for the replies! That makes me feel better....

May 15, 2012 04:54 PM Annicemd wrote:

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 strong

May 15, 2012 09:07 PM Chocolaterocks wrote:

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

May 15, 2012 09:36 PM voraciousreader wrote:

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!

May 16, 2012 02:26 AM Annicemd wrote:

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?

May 16, 2012 10:06 AM, edited May 16, 2012 10:07 AM by voraciousreader

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..... 

May 16, 2012 01:21 PM voraciousreader wrote:

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.........

May 16, 2012 04:09 PM Annicemd wrote:

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!

May 16, 2012 05:37 PM juliempw wrote:

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! 

May 17, 2012 07:04 AM voraciousreader wrote:

Came across this magnificent book, The Art of Medicine:

www.amazon.com/The-Art-Medicin...

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!

May 17, 2012 03:12 PM voraciousreader wrote:

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....

May 17, 2012 03:18 PM voraciousreader wrote:

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...

May 17, 2012 04:39 PM Annicemd wrote:

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!

May 18, 2012 04:07 AM Annicemd wrote:

Afraid there is no test to differentiate between good and bad estrogen chocolaterocks
BW
Annice