One surgical oncologist, one gyno onc, and one medical onc all told me that Gleevec or some other pharmaceutical would be my best bet for treating this tumor. Another surgical onc and two radiation oncologists told me radiation was the best option. My primary care doctor wrote up a list of questions for another medical onc at MD Anderson to answer but had so far not received any response.
So what's a girl to do?
My mom came up again this week to watch the girls while I flew again to Houston to see if I could get some clear vision for my treatment. I flew down on Tuesday, met with a medical onc, spent the night at my friend Paivi's house, then met with the surgical onc again (the one who has been studying only desmoids for 40 years) and then had another MRI that morning before flying home Wednesday evening.
Many thanks to Paivi for a comfy place to sleep, great food and most of all, coming with me to the doctor appointments to take notes and ask additional questions.
My first meeting was with a medical oncologist, Dr. Robert Benjamin . He immediately confirmed that he had been in the sarcoma meeting for my case and agreed with the recommendation for radiation as the first course of treatment. In a rather large study of Gleevec on desmoid tumors they mostly saw stabilization of the disease for a period of months, not years. Radiation causes long-term control in the majority of patients (but it will never get rid of it entirely without surgery once it has shrunk as far as it will go). He said that if radiation didn't work, THEN he would recommend falling back on drugs such as tamoxifen to start, not Gleevec. He even recommended chemo as an option if other methods are not working.
The next morning I met again with Dr. Raphael Pollock, the surgical onc. He, too, recommended radiation over just taking a wait-and-see approach or using Gleevec. He stressed that only 10% of the time will a desmoid ever shrink on its own and that there are no clear studies to indicate that declining hormone levels will help it to shrink. Even with shrinkage, they do not just go away. I asked about just having MRIs every 3 months to keep tabs on it and this was his reply in part: scans can give a gross measure of overall tumor size in max. diameter but give no information on cellular infiltration into adjacent organs. If that happens then separating the tumor from say, my bladder, becomes much more difficult both with radiation and with surgery. Bottom line: stability in size is not an insurance policy. In addition, radiation alone with never kill all the viable cells so surgery will eventually be required but that could be years away as it could take that long for shrinkage to stop.
That said, I did test positive for the gene 45F for beta catinine which signals the cells to divide. This gene is associated with increased rates of local recurrence after resection which means that I really need it to be as small as possible so they can get wider margins when surgery is required.
After my meeting with him I went in for another MRI. I was not expecting to do this while there but they both insisted that waiting until December (or 6 months from my last MRI) was NOT recommended. So into the chamber I went. I got the preliminary results today and it was not encouraging.
The first thing to know is that they look for a loss of contrast (I had an MRI with contrast) enhancement on MRIs to see if the tumor is shrinking, growing or maintaining. The nurse at MD Anderson called today and said that there is "a large degree of enhancement that can represent as an active lesion". Basically, it looks like it is growing.
And the measurements bore that out. In April and again in June, my tumor measured 6.6cm x 4.4cm x 4.4cm. Yesterday it measured 8.5cm x 6.5cm x 6.5cm.
With that in mind and with all the research I have done, I have decided to go for radiation at MD Anderson. Len, my mom and I are all trying to work out when that will be but it looks like January would be the latest I want to wait. My treatment will last 2 months so I will relocate down to Houston with the girls for the duration. My mom has offered to come help us as have several friends and Len's sister Kathy. We will be sure to let everyone know as soon as we figure out the logistics of our temporary move.
Thank you to everyone who has done extensive research on my behalf, to those who have written and called with encouragement, advice and support and for your prayers and thoughts sent my way. I have been terribly remiss these last few months in my correspondence but please know that your time and love have been much appreciated and I hope you will continue to support us in this next "adventure".