My name is Vanessa Inger-Gutierrez, I am recently married and have 4 children 3 son’s, 17,11,4 & 1 daughter 18. In 2013 I was diagnosed with Familial Adenomatous Polyposis aka FAP. FAP is a genetic disease that is inherited, my body creates polyps that are pre-cancerous in the large intestine, if left untreated or not diagnosed this will lead to colon cancer. In 2017 I was diagnosed with a very rare cancer Desmoid Tumors that attack the abdomen and organs which causes this disease to be fatal. This is my journey with this disease which leads me to create this page asking for your help.
In 2013 5 months after I had my son I had my first surgery. Dr’s removed my whole large intestine along with 90 percent of my rectum, I was given an ileostomy bag & in just a few short months I was back in the hospital early 2014 for the removal of my ileostomy bag and reconnection of my reconstructed rectum. This time in the hospital was harsh, needless to say I ended up on a NG Tube due to being very sick.
Throughout the next 2 years it was a rough road to recovery but in the end I overcame so I thought. In early 2016 I started feeling discomfort in my abdomen. I seen my gastro dr, I explained this and that I felt like there was something inside my abdomen. He advised me that this was a hernia and that he would watch it, nothing else was done at this point. After a few visits to my dr and almost a year of waiting in pain. I once again reached out to my dr and advised him of the pain that I had been dealing with. He ordered a ct scan to “reassure” me and found out that I had not 1 but 2 masses inside of my abdomen. My Dr advised me that with FAP there is a very rare tumor disease affiliated but that he thought that this was not the issue. Biopsies were taken and results came in that this was just a mass.
In Feb, 2017 I had surgery for the removal of what I thought was both tumors. After surgery I was advised that they were only able to take out 1 of the tumors and that the 2nd tumor was in my small intestine, I was advised once I healed up that I would start some medicine to try and reduce the growth of the tumor. The tumor that was taken out was sent for testing. The results came back that this was cancer Desmoid Tumors. In April I started this medicine. I went back to work and in June I found myself in pain at work. I landed myself in the ER that evening. The Dr at the ER sent me for a CT scan with results came back that I had an additional 3 tumors. My dr followed up with me, advised me that I was misdiagnosed and that nothing was to worry about. I took pain meds and was back in the ER the next week. 2nd ER dr looked at my CT and again stated that I had 3 additional tumors. At this time I requested a 2nd opinion. I seen 2 drs in LA who told me that I was inoperable, and that medical oncology and pain management were my only options left.
Last week I seen the medical oncologist who confirmed that I have multiple tumors, that yes I am inoperable, radiation is not an option. There is a very small percentage of people who have FAP actually get Desmoid Tumors. There is no known cure, this is cancer and that these tumors do recur, the tumors don’t go away completely. The medicine that I was on is the lowest dosage and that this is a form of chemo in pill form. The dosage has been increased over the next 8 weeks. Dr advised that if the tumors don't take to the medicine that I will then start chemotherapy. In result of this increase am sick and have been in pain from the tumors. I had a nerve block done yesterday and we will wait and see if this actually helps and not known how long it will last.
I have been fighting my provider to be transfered to City Of Hope. I have been denied 2 times so far as I am "getting the best of care at this time". I am working on my 3rd appeal. City Of Hope is the best place for me to be locally as they treat these rare tumors and are part of the research and clinical trials but just to get seen out of pocket is $1,500 .
Lastly since this is hereditary I had my 2 eldest children tested and sadly they have came back positive for FAP. Not only do I have my own battle to fight but I have Hailey and Ryan’s battle to get started on.
With all the unexpected medical expenses & travel expenses, copays and 2nd 3rd opinions it has become financially challenging. I am not one to ask for help but to give the help. At this time we are in need of help if you could donate any amount will help. The donations that are received are going to go to all the medical expenses for my 2 children and myself. If you are unable to donate please share and keep sharing this with others, keep my family in your prayers as this is going to be a long battle with this disease.
My thoughts to take away from this is, I am thankful that I got this so that I may know what my kids are going to go through, knowing how to help them and know what to talk about. At the end of the day if I can help anyone with this disease then I am blessed.