PREVIVOR: A person who is not diagnosed with cancer, but has survived the predisposition, or higher risk, of cancer due to a genetic mutation and/or strong family history. After being armed with this information, a previvor can make informed choices prior to a cancer diagnosis.

Friday, June 10, 2011

My History

I know I've made reference to my genetic condition and medical history before in my posts, but I've never really laid out exactly what has happened to me in the past. So, I figured I would take a moment and kind of outline what has happened to me, medically speaking, my whole life. I guess just because I feel like that someone can't really understand my story unless you know all of this. And NO I'm not posting this to make people feel sorry for me, or to tell me how wonderful I am (I hate when people feel sorry for me and I already know how wonderful I am HA). No, seriously I have never thought of myself as deserving of any special attention..I just like to think that everything I've been through will help me be a better nurse one day (provided that I actually graduate and don't implode from stress). So, here's a brief little explanation of everything that's happened to me up until now:

AGE 3-
My grandmother noticed a lump on my side. I had it removed and it was diagnosed as a lipoma, or fatty tumor- completely benign.

AGE 6-
Like a normal child, I began to have sore throats a lot and had to have my tonsils and adenoids removed. My only surgery not related to Cowden's syndrome!

AGE 9-
Being a smart little 9 year old, I assumed I was developing my adam's apple. When I was told that little girls don't have adam's apple my parent's took me to the doctor. I ended up having a tumor removed from my thyroid and was diagnosed with thyroid cancer. I have taken synthetic thyroid hormone ever since.

AGE 14-
I discovered a lump in my breast. It was removed, mainly due to my history of thyroid cancer, and diagnosed as a fibroadenoma, or a normal cyst.

AGE 17-
I begin to have other lumps come up in my breast. Since I was past the age of pediatrics, I was referred to Dr. King. Dr. King handled all of my other breast surgeries, as well as my mastectomy. He removed the lump, mainly for cosmetic purposes, since it had gotten so big that it was visible.

AGE 19-
I had several other lumps removed from both breasts (this surgery was becoming routine for me!)

I began to notice several bad headaches around August of that year. By, October they were becoming worse and I began to have vision problems. I went to an opthamologist, who performed a field vision test, to check my periephral vision. He also noticed a lot of swelling on my optic nerves and sent me for a CAT scan. The next morning, he called me to let me know that the CAT scan revealed a brain tumor on the base of my cerebellum. He instructed me to go to the ER and meet the neurosurgeon. A MRI revealed that the tumor wasn't necessarily the problem, but it was blocking the flow of CSF (cerbrospinal fluid) and causing hydrocephalus, which was in turn causing my headaches and vision problems. They admitted me to the neurotrauma ICU, where I spent a week and a half, undergoing testing and then finally having an operation.

While I was in the hospital, Dr. Sorenson (my neurosurgeon) suggested that I undergo testing for Cowden's Syndrome based on my history. He referred me to a geneticist who did a blood draw and sent it off to a research study. A few weeks later, it was confirmed that I had Cowden's syndrome.

AGE 21

I began to have the same symptoms (headaches, vision problems, etc) and I visited the opthamologist, since I needed a check-up anyway. He saw swelling on my optic nerves and told me to call Dr. Sorenson. When I had a MRI it showed hydrocephalus again, and Dr. Sorenson suggested having a VP shunt put in. A VP shunt would act as a 5th ventricle and help alleviate the pressure on my brain. The operation was pretty simple and I was at home the next day. A week later, I began to have problems and had to go to the ER. I didn't have to have surgery, but had to get my shunt adjusted. To do this, they place use a magnetic device that connects to a magnet in the shunt and opens or shuts it, depending on what you need. I was warned to watch for problems and thankfully (knock on wood) I've never had problems with it. The way Dr. Sorenson described it to me was that "a shunt was plumbing, and sometimes plumbing needed replacing or fixing"

AGE 22

More breast issues! Fibroadenomas this time, but they are taken more seriously now that Cowden's syndrome has come into the picture.

AGE 23

I began to have more problems with my brain. The problem wasn't with my shunt, so I had another craineotomy (the same type of surgery I had when I was 19).

AGE 24

Another craineotomy (also becoming routine now!)

AGE 25

I noticed nipple discharge one morning and became alarmed. I told my grandmother first, who advised me to go to the doctor. I knew she would understand, because she had already been diagnosed with inflammatory breast cancer. I went to my gynecologist who tried to delicately tell me that I needed a mammogram. He said that chances were that I didn't have breast cancer, but it didn't hurt to be safe. When I had a mammogram, it was "abnormal" so I had an ultrasound which showed that I needed a breast MRI, then they needed to do an ultrasound guided core needle biopsy. I get exhausted just typing it! The core biopsy showed atypical cells and they told me to go see Dr. King. Dr. King gently explaind that atypical cells were referred to a "pre-cancer" and that more than likely we'd see DCIS after the excissional biopsy was done. I had the operation and when I went in to find out the results, apparently the rest of the lump came back clean. Then Dr. King referred me to an oncologist to help manage my risk. And so I began "increased surveillance" which meant mammograms, and breast MRI's alternating every 6 months.

AGE 26

My first mammogram came back normal, but 6 months later my breast MRI showed need for a core biopsy again. And ironically enough, I had to have a mammogram before my breast I had two in one year :( They are not fun and I shall not miss them a bit!The core biopsy came back showing need for more surgery. That's when Dr. King had the discussion with me that I referenced in my first post.

And the rest is history! Some people may look at this and think how in the world could I not be utterly miserable and bitter? I try not to be..I'm not going to lie sometimes I have my moments of sadness and depression and "Why me's?" but I like to believe that "what doesn't kill you will make you stronger" And like I said earlier, I can only hope that I can be of some help to other people who are going through crazy things like this.One good thing about being diagnosed with Cowden's syndrome is that I can finally attribute each and every thing (with the exception of the tonsils) to my genetic condition and not think that I've just had bad luck! I will say this, I love each and every person who has stuck with me through all of this. A good support system means the world!

Sad to say, this little timeline may not be incredibly accurate..some of the surgeries run together so the ages may be off! I need to learn to write this stuff down...

1 comment:

  1. You must be so relieved to get rid of your breasts! It is amazing to me that you still paint a positive picture after all the stress and surgeries you've been through and continue to go through. I have no doubt that it will make you an excellent nurse!