Since I don’t think I could have said it any better, I have stolen (with permission) the post below from the always-amazing AnneMarie.
Yesterday, I had front row seats to see what happens when a story hits the media during a slow news cycle. People are tired of hearing about the fiscal cliff which I prefer to call by its “formal name.” Does anyone recall the word? Correct!
No matter. It seems we are ready to hang glide but I’ve been too busy running around a two square block area in San Antonio to pay much attention to any news.
San Antonio is lovely. The Riverwalk is charming. San Antonio is bustling. There are researchers and clinicians and all sorts of folks in the breast cancer arena, from all over the globe, in that same two square blocks.
I am here as a patient advocate sponsored by…
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Stage 1 DCIS Right Breast 5/1/08. Right Mastectomy, allergic reaction two years Tamoxifan causing ITP. Can I join in?
Please do, but I am not the author of this post, I re-blogged, from someone who I do not think is the author either. I have little personal knowledge of the drug as I was ER negative, HER2+, so I had infusions of Herceptin. I am keeping an eye on the news for a friend who takes it, as well as the fact that I am interested in how “news” in breast cancer research is presented. My major problem with a report I read about this “update” is that the study was funded by the pharma company that makes the drug. I have other problems, but that is the big one.
I’m new to the home computer/blogging/tweeting etc. Plus no fancy iphone or ipad. Pretty simple life for me. Never had time for one when my children were young to be tech savy except at work. I recfently had my first fundraiser and contributed to The Pink Fund and am so glad I did because it is bringing me closer to other people who have or had cancer through their facebook posts. I can see others journeys through this cancer disease. I don’t know what ER negative means. Are you still suffering? If your friend has any questions for me since I took the darned drug for two years, she/he is more than welcome to ask me anything. That goes for you too. Your day is blessed, make it count.
I’m no expert at blogging either, and I dislike Facebook and Twitter. ER and/or PR negative or positive has to do with if the cancer responds or grows because of estrogen and/or progesterone. If you take Tamoxifen, you are positive for one or the other or both (check with your doctor, or trusted websites). Most breast cancer patients (75-75%) are ER or PR positive. About 20% of us are HER+, it is a bit more aggressive, but outlook is better than for patients who are negative for all 3 hormones (10-15%). Again, my grasp of science is weak, strongly advise asking medical professional. Bottom line, I do not need Tamoxifen, my cancer had nothing to do with estrogen; I still take birth control pills and carry on with my pre-menopausal ways. I finished my last treatment earlier this year, and I am pretty much back to “normal”, I have no evidence of disease (NED), but I still have to see a member of my oncology team every 6 months.
I hope you follow my blog and continue to reach out. But be warned, I am what my name suggests, a curmudgeon, and I am sarcastic, funny (I hope), skeptical, and a million other things. I hope to write blogs that are honest and from the heart, and reflect all that I am. Cheers.
Thanks for your honesty. I am sarcastic, funny (i know), never skeptical, always hyperactive and always honest and straight forward, sometimes too much, but those that don’t like it hate me and those that do, love me. Everyone knows where I’m coming from, that’s for sure. I am happy that you are well as am I well. I’m glad I’ve banished medication, it all makes me ill, even aspirin and not sure of the whole benefit of it all. Did they have all this stuff in the olden days? I was looking forward to my five year mark but as I get closer, it means little to me anymore. I just always feel fortunate that I’ve made it this far in my life, cancer or not and I spend plenty of time praying for those who were dealt a less fortunate journey for their healing without pain. I think once anyone has had cancer and made it through to the other side of that cancer, they gain that strength inside that makes them “Warriors” That’s where the title comes from. Those that aren’t there yet just aren’t far enough in to their journey to figure it out, but they will get there. I have faith that out of everything bad in our lives comes something good. As far as facebook, blogging, tweeting….I’m almost 54 and facebook was my first home computer thing. I’m really passe about it now. Over consumed with Pinterest, can’t get enough! Hey, you do your thing and I’ll do mine and thanks to modern tech, it was possible for us to met:) Peace.
So how am I supposed to interpret this “new” study. The fact that Tamoxifen for 10 years is better than Tamoxifen for 5 years was as big a surprise as Neal Patrick Harris’ orientation. As someone who is trying to come to terms with the fact that 5 years of Tamoxifen gives me a 25% chance of not seeing age 40, the “benefit” of a 28% chance of seeing age 50 with 10 years of Tamoxifen does not outweigh all of the negatives I associate with the drug. The headlines make the reader think that there has been a huge breakthrough in breast cancer treatment because the findings are “significant” but the articles never explain how a STATISTICAL significance relates to the real world. So I’m left explaining to loved ones that 10 years of tamoxifen MAYBE reduces my risk by 3ish% (if I’m lucky enough to live that long) and that my risks of uterine cancer, heart disease, osteoporosis, and blood clots skyrockets. And just how much value can I place in a study that finds a drug taken every day for a decade is beneficial when the biggest source of funding for the study was the company that produces the drug? I do not deny that the drug is beneficial, nor do I believe that it is not beneficial for me to take the drug. I object to the way the information is presented to the masses, and that the funding sources for the research are buried in the last sentence of the article, if included at all.
I just can’t read any of those studys. I took a completely different approach to my breast cancer diagnosis. I didn’t want to read why some people had lumpectomies (sp?) while other had mastectomies or why Tamoxifen is better or worse or how long to take something to make your chances better or worse. If mind over matter, then who wants their mind to go there. I had one week to decide what to do. I just walked away from the world in my head and moved forward without listening to what anyone else had to say. Fortunately I had doctors that knew what they were doing and I trusted them completely from the start. My immediately sick reaction to Tamoxifen, I felt was part of the whole game. Two years in when my bloodwork showed signs of ITP (which I did have to look up), I was only on that medication so even when the doctors said lets get checked for everything else under the sun (including possibility of ruptured inplants), I made a personal decision to stop taking the Tamoxifen without any knowledge to anyone but my husband. Low and behold on my next two week visit for blood work, my problem had COMPLETELY resolved. I have not been on anything else but a good life in my mind and in my soul and I just try and deal with every day, one day at a time, and pray that God gave me one more day. I know bla, bla, bla. If you think in your heart and soul that the medication in not doing you any good, then you are probably right. Your gut will tell you more than any study and any study will waste that energy you need to get your self back to what you think is normal. Only thing is, after cancer, your entire life will be different. I promise that. Just my opinion from Mrs. Looking Forward. Judge me if you must but know that I say it to try and help someone else with what I found to help my journey. I think Tamoxifen SUCKS with a Giantic “S”. I put my life in the hands of my fate.