Nov 20, 2013 - 12:20 am
Well, it is hard to believe how time flies. I had my radical nephrectomy of my left kidney, for stage 1 Chromophobe RCC on 10/21. I was home three weeks and then back to work. I am 39 yrs. old in Southern AZ. Prior to my nephrectomy, at the urging of many, I contacted an oncologist specializing in kidney cancer at the U of AZ Cancer Center and schedule my initial appt. for today. The purpose of my meeting was 2 fold: I wanted to find out what he knew about by ChRCC; and I also wanted to find out about Genetic testing because I may have Birt Hogg Dube (BHD) syndrome. I had read that anyone with ChRCC should be tested for BHD syndrome. He had a great bedside manner and told me about how rare my subtype of cancer was. In 20 yrs, he had only seen one other person with my subtype. He pulled up a nomogram website (and said anyone can do this at the following site: http://nomograms.mskcc.org/) and he put in my variables, and it stated I have a 0 - 2% chance of my cancer recurring!!! Of course it is not exact science and there are no guarantees, but it was pretty good news!! I was SO happy to hear that!!! He said I will be, by definition, a "cancer patient" for five years, and then after that...assuming no recurrence, I can put that title on the shelf. He said I had a valid concern about Genetic testing and referred me to a Geneticist Dr. However, he said there are many cons in having genetic testing: insurance may not pay for it; and if it does and I do have a pre-existing condition, then there could be implications with my health insurance company and my children. Also, he said my life insurance premiums would increase. Lastly, he said that knowing whether or not I do or do not have a genetic propensity for cancer, won't change the course of action for the future: regular scans every 6 months for 10 years as per my urologist. Taking all of that into consideration, I am opting to not have the genetic testing. I wanted to share my experiences today here in case there were any others out there wondering what it would be like post nephrectomy. I was SO lucky that mine was caught early, and that I have a tiny to no chance of recurrence. I feel so relieved. I know I am not 100% out of the woods, but 0 - 2% is GREAT!!!
Other updates on my recovery: Today I noticed that my stomach around my incision site is numb! I didn't get staples...had glue, and I am so happy the scabs have fallen off! I was really only weak the first 4 - 5 days, then little by little I got stronger. Since Day 14 after my Nephrectomy, I have been walking 2 plus miles on the treadmill every day. I think I have only not walked 2x in the past 2 weeks. I don't walk fast all the time anywhere from 2.5 mph to 3.5 mph depending on how good I feel, and I credit walking to feeling good! My appetite is pretty light, and I am glad about that! So that is my story and I hope it helps someone out there. Happy endings can happen! :) I will check back here from time to time to let all know how I am doing. :)