My Diagnosis:Renal Cell Carcinoma

I began having back pain in February of 2013.  At first, it was just a discomfort I felt more at night.  Having been involved in a serious sledding accident back when I was in my twenties, I was use to having back issues periodically.  Usually a few days of using an ice pack, massages using Pain Buster, and limiting my physical activity took care of the problem in a week, or so.  This time however, the pain continued.  I went to a local clinic and the doctor there referred me to a physical therapist.  I had several “adjustments” with no result. The pain continued to increase to the point, I couldn’t lay on my back.

On March 7th, after having a terrible night of pain, my partner, Janet and I decided to go to the emergency room of Sacred Heart Hospital.  After first being checked out by the triage nurse, they felt like it could be my gall bladder and ordered a sonogram.  This pre diagnosis was not too alarming because we had gone through gall bladder problems with Janet years ago.  She had to have her’s removed and she was fine within 3 days of her operation.

We were not prepared for the ER doctor to come in  and report they had seen a large mass, in the kidney area, on the sonogram and needed to order a CT scan.  As we waited for them to take me for the scan, I kept hearing those two words, “LARGE MASS,” repeating over and over in my ears.  How could this be?   

They ordered the CT scan and gave me a good amount of pain killers.  I must admit, the next several days are somewhat of a blur to me.  So, instead of me detailing the ten days I spent in Scared Heart Hospital I will give you an overall outcome.

After my CT scan, I was told that the mass had grown out of my right kidney and had attached its self to part of my liver and diaphram, laying against my lung.  A portion was attached and growing through two of my ribs.  They said in all liklihood it was cancer. 

Yes, I remember once in awhile feeling a sore area outside my rib cage, but really?  Kidney Cancer?  I had no blood in my urine. I had no fevers.  I had no symptoms to warn me of something so devasting. This was too unreal.

After the CT scan, I was introduced to my wonderful oncologist, Dr. Dean Delmastro who strangely made me feel calm as he explained all the bad news.  He ordered a biopsy confirming a rare form of Stage 4, Renal Cell Carcinoma. 

Dr. Dean Delmastro

In spite of the diagnosis, my time spent in the hospital is best described as foggy, dull, and me being in cheery denial.  I just kept repeating, "Everything is going to be okay." And, "I believe they will just remove the mass." Every person who came to see me had worried, skeptical and reserved emotions on their faces. I tried to make them feel better, meanwhile I didn't know, yet, that I needed to feel better.

According to Wikipedia on the internet:

"Renal cell carcinoma (RCC, also known as hypernephroma) is a kidney cancer that originates in the lining of the proximal convoluted tubule, the very small tubes in the kidney that transport GF (glomerular filtrate) from the glomerulus to the descending limb of the nephron. RCC is the most common type of kidney cancer in adults, responsible for approximately 80% of cases.^[1] It has been described as being among the most lethal of all the urological cancers.Where the tumor is confined to the renal parenchyma, the 5-year survival rate is 60-70%, but this is lowered considerably where metastases have spread. It is relatively resistant to radiation therapy and chemotherapy, although some cases respond to immunotherapy. Targeted cancer therapies such as sunitinib, temsirolimus, bevacizumab, interferon-alpha, and sorafenib have improved the outlook for RCC."


As it states: "80% of the people who get kidney cancer have RCC (Renal Cell Carcinoma). Unfortunately, as time and further biopsy's have gone by, I now know that I have 2 rare variants of RCC: Sarcomatoid and Chromophobe. So I am not in the common 80 % of people who get RCC, in fact, I have not one, but two, rare variants of RCC. As rare, as rare gets.

There was still hope at this time in the hospital though, as there was a vague plan that a surgeon might be able to remove all of the mass.This would not erase all of my problems, because they said the likelihood of it growing in other areas was highly probable.  At least if they were able to remove the large mas, it would buy time to search for other treatments.

Much of the next eight days was spent on pain management and determining if the mass could be removed surgically.  Dr. Delmastro located a surgeon at Saint Joseph's hospital in Marshfield, Wisconsin.  Her name is Dr. Jessica Wernberg.  After viewing the scans, she agreed to perform the surgery but recommended trying chemo treatments first in an attempt to shrink the large mass.

I had my first chemo treatment on March 16th and was released from Sacred Heart Hospital on March 18th.

Why I Created This Blog

Most consider me a private person and I can honestly say, I like it that way.  In reality, I am somewhat shy, and certainly more introverted than most.  There are times when I feel as though I have fully expressed my feelings and inevitably found that I was misunderstood.  I then have to search for a way to further explain my thoughts.  That just seems like way too much work for me, as silly as that may sound.

I now find myself in a place where I feel the need to be more open and I want a way to share my life with others.  I was diagnosed with a rare form of kidney cancer on March 7th of this year.  Those close to me suggested I begin a blog as a way to share my feelings, experiences, and information. Though I didn't feel it would be something I would ever do, I now believe it could be very healthy.  It's also a good way for me to answer questions, to ask for hugs, and to get closer with people. I have always said, "It's not your job, or your money that will come visit you in the hospital, it's people."

Though it is not easy for me to share what I am thinking and/or feeling, I know this will help me as I travel down this new path.
Just as I know there will be rough times, I know there will be times of happiness and positive outcomes.  

Since I am just beginning this blog in August, 2013, I decided to go back, and give you an accounting of some of the events since I received my diagnosis.  Thank you for reading my thoughts, sharing my experiences and being a part of my journey.