LizGrant's Journey with Cancer of Unknown Primary

I had surgery the day after Thanksgiving in 2008 to remove what we thought was a benign, but painful cyst on my right ovary. Once my OB saw what it looked like he realized it was most likely cancer and also took out my appendix and checked other areas in my pelvic region for cancer. No other cancer spots were found during the surgery.

I also had a mammogram to rule out that anything came from my breasts as this CAN be the origin. Also, my mammogram came back normal.

The tumor on my ovary turned out to be what is known as a Krukenburg tumor, and in most cases it has metastasized (spread) from somewhere in the colon. Because of this my next procedure was an endoscopy/colonoscopy, which shockingly came back clear.

My oncologist finally did a full body PET/CT scan and that is where they found a few other sites that the cancer had spread to. I had one lymph node on my sternum "light" up and another on my collarbone. I also had a tumor on my lower, back, 8th right rib. Unfortunately it was confirmed that my cancer was not isolated to the ovary and had spread.

When I had my port placed I never fell asleep during the procedure so I unfortunately was awake to hear everything! Also, my port was placed deep so it's always been a bit of a pain! (pun intended)

We waited a few weeks before treatment because there was a clinical trial going on that focused on my type of cancer. My tumor was sent across the country to CA to a special lab so that it could be broken down to the molecular level. This is still a pretty new technology. Unfortunately my cells were still not identifiable, therefore I was not eligible for the clinical trial and we decided I would began the standard treatment at the time for CUP.

I began six round of chemotherapy: Carboplatin/Taxol. My doctors chose these medicines as they covered several types of cancers, which we thought was best since we still had no answers as to where my cancer had originated.

I ended up receiving 2 blood transfusions in 4 months due to becoming very anemic.

I had very bad nausea and a low appetite. My taste buds also "changed" as everything tasted metallic.

I found that I could not read books or watch television for very long several days after treatment. For about 4 days I had to lay in bed and just rest. I also had a difficult time carrying on conversations.

I had to give up my full-time job eventually, which was very hard as I had many good friends there, really liked my work, and felt guilty that we would no longer have my income.

I finally finished treatment and the scan afterwards showed that the cancer was no longer in my lymph nodes! My oncologist was somewhat skeptical about the spot on my rib. He said it was possible that it wasn't cancer, but if it was it had not in fact shrunk, but had not grown either. We decided to wait a few months because he said sometimes the bone can take a bit longer to respond to chemo.

Halfway through treatment my first set of scans showed that the lymph nodes were in fact shrinking due to the chemo and no other cancer sites had popped up!

After several months the pain in my back near the spot on my rib was increasing in pain, especially once I had taken up swimming for light exercise. After a scan it was still there and my doctor felt it was most likely cancer and should be treated with radiation :(

Throughout this experience my fiance' at the time had been amazing and extremely supportive. He never made me feel I was a burden and he never seemed to doubt being with me even after my diagnosis. We had pushed back a church wedding due to my treatment, but once I quit my job we really couldn't afford to pay for a big wedding. We decided it was time to stop waiting just because of money and got married in September of 2009, 5 months after I finished chemo!! We just passed our 3 year anniversary :)

I only had to have 10 rounds of radiation and it was successful!! I remember after about 5 rounds the pain began decreasing and my radiation oncologist said that was what he was hoping I'd say! The radiation was not bad for me and I had almost no side effects. A scan showed the bone looked different and that the tumor was gone, but there is still "damage" to the area.

Well in the fall of 09' and spring of 10' we saw that there were a few very small, slightly enlarged lymph nodes in my abdominal region that were showing up now. My doctor and I opted to wait and watch them as they were growing very slowly and weren't causing me any pain, or so I thought. In the summer of 2010 I was diagnosed with kidney disease, which they realized was most likely do to a recurrence of cancer. The lymph nodes in my abdomen had not been biopsied and we still decided to wait and watch them while I tried treatments for my kidney disease. I never needed dialysis as my kidney function thankfully remained normal, but there was damage slowly being done to them.

My doctors decided to send off the sample of these new set of cells to see if my cancer could be identified this time. What we found out was very shocking. I was found to have a gene (ALK), which 90% of the time produces non-small cell lung cancer. This was shocking because at this point I had no signs of lung cancer. It was still possible that it was coming from another site such as the colon and since that is where my cancer was showing up, my doctor this time decided to give me the same treatment as someone with colon cancer.

By the spring of 2011 it had been two years since I had finished chemotherapy and I was back working part-time. My scan in April however showed the abdominal lymph nodes were growing AND my kidney disease was progressing. The wait and watch approach did not seem to be working. The fine needle biopsy of one of the lymph nodes confirmed it was indeed cancer and it looked the same as before :( Treatment was necessary again.

In June of 2011 I began a chemotherapy regimen of Carboplatin and 5FU. I would have this treatment every other week as opposed to every 3 weeks like the time before. I decided to once again not work through this treatment because I had been warned it was even more difficult than what I had undergone in 2009.

This drug made me extremely tired. For days after treatment I had absolutely no energy at all. I can honestly say going to the bathroom was a struggle.

This side effect was one of the most difficult. By my second chemo treatment, by the time I left the office my hands and feet were not cooperating. I felt I could not get them to do what my brain was trying to tell them to do....it's kind of hard to explain but they no longer acted as though they were an extension of me. They would spasm and when I walked my feet would randomly go another direction and my legs were extremely weak. I also had severe pain in my jaw and anytime I tried to eat or swallow for about 3 days after chemo I would end up yelping in pain. By the end of my treatment (I had 11 total), I was not able to walk hardly at all once leaving the office and my husband and mom had to help me up stairs and carry me to my bed. It was awful and painful.

My appetite was very strange as I only wanted things that were very "tart" or very "sweet". I would end up eating a bow of mustard potato salad followed by a bowl of Cocoa Pebbles! I know it sounds so gross now, but at the time it's what I wanted!

This chemo also affected my moods much more than my treatment in 2009. I of course suffered from depression problems because of my current situation, but this was different. It always hit me right at 3 or 4 days after a treatment. I would become extremely depressed, irritable, and somewhat paranoid. I got to where I would apologize to my husband ahead of time and he of course was so patient with me. Usually after about 7 days after chemo I was back to my normal moods.

Because of the side effects this chemo gave me, I actually did consider stopping treatment early on. Even though I knew that I needed to have it, my doctors even told me it wasn't 100% that this chemo would 1) kill the cancer in the lymph nodes or 2) treat the kidney disease. I had doubts if I should be doing this and admit to wanting to give in because of the painful side effects. One night in church I had a very, very strong spiritual experience that made me believe 100% that God's will was for me to do this. I knew that I would continue treatment even though along with having a strong belief God wanted me to choose to carry on, it was going to get much worse and be very difficult.

In November of 2011 I had my last round of the chemo! One scan earlier had shown that the lymph nodes were shrinking and my kidney disease numbers were getting better so we knew it was working. When I finished treatment there was no detectable cancer, NED (no evidence of disease) and my kidney disease had also improved greatly! I will never forget when we got the news that even though I had been diagnosed in 2008 with Stage 4 cancer, I actually had a scan that was NED!! My oncologist even admitted that he never thought I'd be doing so well when he first met me. I also have another oncologist who is a specialist in CUP and also is a member of my cancer team and he has told me as well that I am doing so good for my kind of cancer.

As of October 2012 I received a third scan that was NED. I suffer from asthma and allergies and have had a few "suspicious" lymph nodes in my lung area pop up, but they have also resolved themselves so at this moment we are not overly concerned they are cancerous. It is now February of 2013 and my next scan is in April. I have been on disability for a while now as it has taken me quite some time to recover from this last treatment. I still have neuropathy (probably permanent) in my feet, but it has resolved in my arms and hands. I am studying online to become a medical transcriptionist so I can work from home in case I do need treatment again. So far I know that I am very lucky and because of this I want to begin giving more of my time to helping others with this illness.