Have I learned anything? Yes. Themes are emerging, headlines are being splashed, studies are being hyped and my head is spinning trying to decipher all of it in ways that I can understand. Over diagnosis and over treatment was big on Tuesday. This has been a topic of conversation for months. I found a good video which (if I recall) was a fair (as in even-handed) assessment taking all sides into consideration. My take away. We can cease and desist in perfecting imaging techniques. When mammography works, it really works well and when it doesn't do such a great job, perfecting it further won't really help those whose cancers are hard to see on mammography. Enough with this need for earlier and earlier detection. We got the early detection part down, we need to get to the biology of the tumors, to find ways to interrupt metastasis, prevent metastasis, prevent the disease altogether.
And that's where the splashy headlines began. Anastrozole. The doctors and researchers tweet using the chemical names. To you and me, that's arimidex. The headline in ASCO Post reads,
In English? There was a 2% difference between the two groups of women, those who took the real stuff and those who received a placebo. Since 2% of the women taking arimidex were diagnosed with cancer and a whopping 4% of those taking nothing were diagnosed with cancer, there's your 50%. Are you still with me on that? What does it really mean when you cut your risk in half? Line up ten women. Do nothing, four of them will get cancer. Do something and just two of them will get cancer. That is a "statistical significance" which results in the aforementioned ACCURATE, yet horrible headline. Not really a fan. The side effects were discounted by the presenter who claimed they believed that 90% of the complaints were not related the to drug. Something was said about the dangers of the other already approved risk reducing drugs (tamoxifen) in comparison to arimidex. There are dangers and risks associated with both drugs. Period. The End. There are side effects and the joint pain is real. Period. The End. And the presenting doctor is on the speaker's bureau for Astra Zeneca who was one of the funding sources for the study. Period. The End. Bottom line? Until the presentation, all presentations, are peer-reviewed, they are merely presentations. The full research findings, not just the slides with the great looking graphs, must be reviewed. Then, a more accurate assessment will be shared. And, if I have access to it, I'll likely find something that merits mentioning. Especially when the presentation was so dismissive of the side effects.
The last presentation yesterday afternoon was one that was of great interest to me. The presentation was about the use of bisphosphonates for patients with early stage disease to prevent recurrence and death. Specifically, they looked at an oral medication that is not approved for use in the US (but is used in Europe) and zometa, which is an IV administered drug that is approved for use in metastatic patients. The numbers were impressive. The benefit of adding this to was equal to that seen with chemotherapy. They looked at thousands of women in over 20 different studies and combined all of the information. After analyzing the information, it appears post menopausal women (naturally, surgically or due to ovarian suppression) will likely see a new standard of care within a year from what the play by play doctors had to say. Again, this must go through the peer review process before there will be a change. It is not approved for use in this setting. It is, however, used for the treatment of osteopenia and osteoporosis. I am six years post treatment but I also have six years of bone loss from the femara I have been taking. I just had a bone density test. I had osteopenia in 2006 when my base line bone density was done. It has gotten worse on all subsequent tests. Although no medication is without side effects, this is something I may discuss with my doctor. Unfortunately (for him), I will be doing this during my MOM's monthly appointment next week. After he finishes reading scans, I'm going to harass him. And I'm certain by the time next Friday rolls around, he will have been harassed by enough women that I'll get a canned answer. Wouldn't you all like to be the fly on the wall for that?? Joking aside, I know I won't get a canned answer, I will make my own appointment to review everything and make an informed decision weighing the benefits against the risks because that is what it means to be engaged in one's own medical care. As of now, there's still no story by Reuters or the AP or any other news outlet weighing in with a Hyped Headline but I'll add a link when I see the first one. I'm a bit surprised it's taking this long. That was a pretty big deal, was big buzz. Go Figure.
The most thrilling moment of the day came later in the evening. Each day, there are mentor sessions. A panel of exceptional doctors is assembled to discuss the daily presentations with the advocates. Thanks to the Alamo Breast Cancer Foundation, the mentor session was streamed live. It was the very first time they ever did that. Does it sound weird for me to say that I was as excited as a kid in a toy store? I hit the link, found Lori @regrounding, couldn't find the link for the live feed. It gave us a few moments to catch up. We were tweeting buddies in San Antonio last year. Roommates at every conference we attended together and with Jody @jodyms, we were running around San Antonio just twelve months ago. When we located the feed and saw the familiar table of panelists, I felt like I was at one of the advocate seats. Technology! I had a question about that zometa study and I knew another buddy was in that room. I sent her a tweet, asked her if she would ask a question for me. The very last question they took was from Terry Arnold. Terry is the founder of The IBC Network Foundation. Inflammatory Breast Cancer. Never heard of it? Poke around Terry's site. For the first time ever, there was an entire session dedicated to the discussion of IBC. Terry stood at the microphone and said she had a question from New York. My question. And that was pretty damn cool. Even the panel was amused. And Karuna, from Breast Cancer Action who was also in the room, and at the microphone asking the hard questions, sent me a message to let me know they were cheering from far far away. Yes, technology. Some awesome stuff there.
And THAT brought back a flood of memories, of San Antonio 2012, of dinner on The Riverwalk with Jody, me, Lori, Karuna and Gayle.
The last presentation yesterday afternoon was one that was of great interest to me. The presentation was about the use of bisphosphonates for patients with early stage disease to prevent recurrence and death. Specifically, they looked at an oral medication that is not approved for use in the US (but is used in Europe) and zometa, which is an IV administered drug that is approved for use in metastatic patients. The numbers were impressive. The benefit of adding this to was equal to that seen with chemotherapy. They looked at thousands of women in over 20 different studies and combined all of the information. After analyzing the information, it appears post menopausal women (naturally, surgically or due to ovarian suppression) will likely see a new standard of care within a year from what the play by play doctors had to say. Again, this must go through the peer review process before there will be a change. It is not approved for use in this setting. It is, however, used for the treatment of osteopenia and osteoporosis. I am six years post treatment but I also have six years of bone loss from the femara I have been taking. I just had a bone density test. I had osteopenia in 2006 when my base line bone density was done. It has gotten worse on all subsequent tests. Although no medication is without side effects, this is something I may discuss with my doctor. Unfortunately (for him), I will be doing this during my MOM's monthly appointment next week. After he finishes reading scans, I'm going to harass him. And I'm certain by the time next Friday rolls around, he will have been harassed by enough women that I'll get a canned answer. Wouldn't you all like to be the fly on the wall for that?? Joking aside, I know I won't get a canned answer, I will make my own appointment to review everything and make an informed decision weighing the benefits against the risks because that is what it means to be engaged in one's own medical care. As of now, there's still no story by Reuters or the AP or any other news outlet weighing in with a Hyped Headline but I'll add a link when I see the first one. I'm a bit surprised it's taking this long. That was a pretty big deal, was big buzz. Go Figure.
The most thrilling moment of the day came later in the evening. Each day, there are mentor sessions. A panel of exceptional doctors is assembled to discuss the daily presentations with the advocates. Thanks to the Alamo Breast Cancer Foundation, the mentor session was streamed live. It was the very first time they ever did that. Does it sound weird for me to say that I was as excited as a kid in a toy store? I hit the link, found Lori @regrounding, couldn't find the link for the live feed. It gave us a few moments to catch up. We were tweeting buddies in San Antonio last year. Roommates at every conference we attended together and with Jody @jodyms, we were running around San Antonio just twelve months ago. When we located the feed and saw the familiar table of panelists, I felt like I was at one of the advocate seats. Technology! I had a question about that zometa study and I knew another buddy was in that room. I sent her a tweet, asked her if she would ask a question for me. The very last question they took was from Terry Arnold. Terry is the founder of The IBC Network Foundation. Inflammatory Breast Cancer. Never heard of it? Poke around Terry's site. For the first time ever, there was an entire session dedicated to the discussion of IBC. Terry stood at the microphone and said she had a question from New York. My question. And that was pretty damn cool. Even the panel was amused. And Karuna, from Breast Cancer Action who was also in the room, and at the microphone asking the hard questions, sent me a message to let me know they were cheering from far far away. Yes, technology. Some awesome stuff there.
And THAT brought back a flood of memories, of San Antonio 2012, of dinner on The Riverwalk with Jody, me, Lori, Karuna and Gayle.
Tomorrow? There is a crisis that is not being discussed in San Antonio in the form of a report that was released just yesterday by the World Health Organization. And there is a mental health crisis in this country, too. When government representatives attempt to do something for this community, people really must sit up and LISTEN. More tomorrow.....
