Time to get started!

Well, the past 3 weeks have been the looooongest and most drawn out 3 weeks.  As much as I've been hoping for the best, I've had to prepare myself for the worst too.  I've had a rough and VERY stressful 3 weeks.

My mom and I before an MRI

My mom and Aunt Jill flew here from Illinois to be with me during this rough time of going to doctors appointments.  I am so appreciative of all of the love and support I have from all of my family, both at home and in California.  I had an appointment with an oncologist last Friday, May 31, at Cedars Sinai.  I left that night in complete tears, but felt good about the facility.  Then had a horrible experience on Monday.  The doctor kept giving us a complete run around and didn't make us trust him.  But I truly believe everything happens for a reason.  Due to everything that happened on Monday, we looked into finding a new doctor.  We faxed all of my tests and paperwork to City of Hope on Monday and they looked at my file to see which type of oncologist would be the best for me to see: surgeon, medical, or radiological.  They got back to us the next day and scheduled me for an appointment on Thursday.  

My Desmoid Tumor

I had my appointment today with my new doctor at City of Hope.  We left this appointment with tears of joy!  The previous oncologist was a complete joke.  Due to the location of my tumor, surgery is not recommended right now because an artery is going through it.  The oncologist is very hopeful that by being on 2 different medicines, it will shrink the tumor and do surgery later on. Desmoid tumors are very hard, so the medicines should hopefully soften it so that it will be easier to maneuver and move it, if necessary.  It will shrink rather slowly, but I will have an MRI every 3-4 months to check the process and hopefully see shrinkage!  My case will be presented to an entire oncology research team so I will hear the final recommendation in a couple weeks. 

Aunt Jill and I

One concern is that if it is genetic.  I have to schedule a colonoscopy to make sure there are no polyps.  Depending on what the results of that are, would indicate if there could be a genetic link.  Another concern would be about carrying a baby.  This type of tumor is NOT caused by estrogen, but it feeds on it.  Therefore, if got pregnant, the extra estrogen could cause the tumor to grow back.  Before any decisions are made regarding that, would have to make sure that it is not genetic and see what the status of the tumor is.  I have to change my diet, too, to try to avoid any extra intake of estrogen.  I never realized how much estrogen is in everything; everything i enjoy!  These tumors are not curable, just controlled.   

My Mom and I at City of Hope

I started my first treatment tonight (7, yes, SEVEN, pills at a time!) so fingers crossed that this will begin the shrinkage!  I am taking Tamoxifen and Suldinac.  The big side effects to these are similar to menopause: hot flashes and mood swings...sorry Luis :)  

This is going to be a long road, but it's definitely better outcome than what the original oncologist told me.  Everything happens for a reason and even though we found out horrible news last Friday and had a horrible day Monday, it brought us to City of Hope!