Jan 09, 2012 - 10:26 pm
I have ready many posts on here, but none from anyone with late stage and some having poor prognosis with early stage. So I wanted to share my story to assure everyone that there is always hope, even with a late stage diagnosis. I will start at beginning so some masy learn some symptoms that they may not think indicate cervical cancer. My issues started back in summer 2009. I was having a lot of low pelvic pin and downing pamprin and other meds for it. Went to Dr and was told I had uti. Went on antibiotics, seemed to ease for few weeks, then came back. This went on for 3-4 months. At same time I was having low back pain, but since I had had this since a car accident yrs ago, I attributed it to this and went back to chiro. When tis don't I was referred to a urologist, was told bladder not fully emptying and went through pelvic floor PT. When pain came back I was referred to my gyno. She did vaginal ultrasound to look for endometriosis. Was clean, but she put me on birth control to see if it eased. Pain continued and another uti about a month later. Went to another Dr who said uti but asked to do a pelvic exam. He said my cervix was bleeding and referred me back to gyno. She scheduled a pap in June 2010. Came back clean and she said nothing about bleeding. Then in July I herniated 2 discs in my back and was scheduled for back surgery July 21. On day of surgery I went into a seizure in admitting room and lapsed into a coma for 4 days. Brought on by high BP of 210/180. Had fluid on brain from it. I was placed on 11 medications and sent home saying I was 'too healthy to stay.' Went to neurologist and said fluid was gone, no brain damage and I could now have surgery. (I was never given explanation for BP I was 38 ran everyday BP always 120/70 pulse in 60s very healthy) Had back surgery in august. While in hospital I noticed unusual urination. Went to family Dr. Referred back to uro. He did another ultrasound and found what he said was a 6 cm mass blocking kidney, but was not sure if it was on cervix or ovary but was solid. Referred back to gyno. Saw her that week. She confirmed mass through external exam but said she did not think it was cancerous. Wanted to do surgery to remove, but have an oncological surgeon there in case. The next week I had another seizure and in another coma and was in icu when diagnosis came back that I had stage 4 b cervical cancer that had blocked off my kidneys and had maybe 6 months to live. I met my oncologist while in icu. This was Sept 2010. I was given a nephrostomy tube in rt kidney to aid function. Was told left kidney was shot at 15% function. Had divinci surgery and abdominal nodes removed. Had port inserted and began 5 doses of chemo while going through 28 daily radiation treatments, followed by 7 internal radiation procedures. Through this I was hospitalized for loss of weight and fluids twice. I went from 140 lbs to 104 and I am 5'11. Had to have another nephrostomy tube placed in left kidney that winter. Had follow up pap in march, came back irregular. Biopsy confirmed recurrence. Pet scanned showed isolated in cervix. Only option left was to have a total pelvic exteneration in may. Had three surgeons, one removed all female organs, bladder and most of rectum. (This is due to fusing process that occurs during radiation) cancer had also spread into rectum and left vaginal wall. Second surgeon made ma an artificial bladder out of some intestines and final surgeon reconstructed vaginal area with muscle from my left leg. I also had several more nodes taken to test for cancer and prevent spreading to them. I was left with a fake bladder and a colostomy and several scars, but all of my margins were clean with no sign of cancer. Following surgery I had a reversal surgery in Nov 2011 to take down colostomy, but due to a fistula it was unsuccessful and I suffered a septic infection which forced it to be redone. My Dr says he will schedule me for a fistula repair in a few months and then attempt a reversal again since I am only 39. I am now almost back to my original weight. Feel more like my old self. Do almost everything I did before I got sick. And most people who don't know can not believe I ever was sick. I am not saying it was easy, it was the hardest thing I have ever been through in my life. And I have 5 teenagers. :-) but I never let myself think this was going to defeat me. Never went on anxiety meds or anti depressants. It never entered my mind that this was going to be my destiny. My Dr could not believe the attitude. I just took what came up next and went on. All in all I have had 20 surgical procedures in the last yr and few months. But I am here and plan to be for a long time. I know this is lengthy, but I hope it serves several purposes. 1. To give signs of what to look for as paps are not always 100%. 2. To help women know some of what they can expect with this diagnosis.