Hey everyone, I didn’t think I’d be back here this soon, but I learned something new today and decided I’d share...hoping it will motivate others to always get another opinion.
Early in my cancer journey I insisted my Oncologist set me up with a 3rd opinion ( he was my 2nd)...so he consulted with his team and arranged for me to see who UCHealth considers “the best of the best for breast cancer”. Dr. Elena Shagisultanova (Nova for short) also part of UCHealth, but in Denver. My first visit to her was the most insightful of any experience I’d had so far. She is extraordinarily patient, she reads every data point about your case and then she educates you like a seasoned professor ( which she is). Jump ahead to today... after my final prognosis my Oncologist said he got a note from Dr. Nova and she’d like to see me again.
Today was my follow up appointment. In front of me, she slowly read every word of my report, underlining and circling key points. Then she explained good news others had missed and bad news others had missed or didn’t see the value in sharing. Good news- even though my tumors didn’t shrink much, the cellularity is now only 7.5%...meaning chemo killed 93% of the cancer cells. Yeehaw! 😀😀😀 Bad news was related to my lymph nodes and how little they responded and a notable characteristic others hadn’t highlighted “an extranodular extension” basically, my nodes were building guns to shoot bad cells everywhere...fortunately they were removed before they got the chance. 😀.
So why did she want to see me? She recognized I had a very aggressive and somewhat resistant type of estrogen positive cancer and I am an excellent candidate for a clinical trial that is already in its 3rd phase (this means it’s close to being finalized and approved for everyone). In a nutshell -- there is this tricky thing called a Pi3k pathway that is basically a sneaky back door that likes to block the estrogen inhibitors I am taking...allowing estrogen to sneak into bad cells and, well you know what’s next. The clinical trial is a daily pill that shuts down the Pi3k pathway so the estrogen inhibitor I am taking will not have a chance of being sabotaged.
The next thing she did was more amazing then the trial she put me in... she brought in another doctor to confirm her assessment that my follow up care should NOT be the standard protocol that had already been lined up by my regular Oncologist. Standard is - I see him every three months and I take my inhibitors. That’s it. Oh, and if I have an unexplainable change in my body for 3 days I contact him immediately. According to Dr. Nova I need 2 scans a year for 3 years and blood work to check my markers every 3 months for the next 2 years. She in turn, is notifying my Oncologist to the change in my care plan and it’s done. 😀 Apparently, she has some serious influence at UCHealth... she isn’t “asking” him to change my care plan, she is telling him to. She said there are many contributing factors why this decision was made. My RCBIII score, my lymph node resistance, my age. Mind you, she didn’t seem concerned for my future, she was actually impressed with my decisions to surgically remove all risk of new cancer and my quick resilience from it all. What she was concerned with was all the little things that should have been considered in my path report when mapping out my follow up care.
So my advice to others: 2 heads are always better than one. If it’s scary, get collaborative, get folks consulting about you... we are all just humans and no one is perfect, so get a second or third opinion if you suspect there is more for you to learn. 😀
Here is a link to learn more info about Pi3k.
Comments