Re: Dr. Susan Love
As a young woman who was diagnosed at age 30 with widespread metastatic disease, I am confused and saddened by these new guidelines. The fact is that there are no effective screening mechanisms for young women. They don't recommend mammograms for my age group. So what are we left to do? Self exam. That's all we can do. Find a lump - pray to God you have good doctors. I didn't. Mine dismissed it as nothing. I pushed for a mammogram and that too failed me. Young women are frequently misdiagnosed because we tend to have dense breast tissue anyway. I got the "all clear" after a mammogram and ultrasound. And I know that it was a mistake. A huge one. One that led me to be untreated for 7 months while the cancer had the opportunity to grow and spread to my bones, liver, lungs and brain.
So where do these new guidelines leave young women? We're being told not to bother with self exams? Please. How exactly are we suppose to be diagnosed?
Another thing that frustrates me about all of this is that it is really distracting from the bigger picture - a need to find a cure. And fast. I am losing friends every week to this horrible disease. Beautiful women - mothers, daughters, sisters. It needs to stop.
So frustrated,
Courtney
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4/17/08: Dx Stage IV at age 30 - extensive mets to liver, lungs, and bones. Er/Pr-, Her2+++
April 08-Aug 08:Taxotere, Cytoxan, Herceptin, Zometa - complete response!
Sept 08-Dec 08: Herceptin +Zometa for maintenance.
Jan 09-April 09: Brain mets. Add Tykerb. Watch and wait.
April 09: Gamma Knife 10 brain mets, add Xeloda.
Sept 09: Gamma Knife to 1 brain met.
Nov 09- April 10: Lung progression, add Gemzar to Herceptin, Zometa.
May 10- Sept 10: HER2 Vaccine Trial
Sept 10: Add Tykerb for more brain mets.
Oct 10: Gamma Knife to 7 brain mets.
Dec 10: Switch from Zometa to Denosumab.
Jan 11: Gamma Knife to 3 brain mets.
March 11: Gemzar/Herceptin for lung/bone progression.
April 11: More brain mets - Intrathecal Herceptin
June 11: Ixempra/Herceptin for lung, soft tissue progression.
Aug 11: Gamma Knife
Sep 11: Abraxane/Herceptin
Future: NED
Send me a PM if you'd like to follow my journey on Caringbridge.
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