Scared, desperate, & need advice (long)

bbethb79

Ok here is a copy of what I posted on another board yeasterday.....

I will try to make this VERY long story as short as possible. Everything started in the early morning hours of July 5 this year. I have had migraine headaches my entire life and I woke up from a deep sleep that morning bc my head was killing me. I got up to take my meds so that I would be able to sleep for a few more hours and make it to work since we had just had a long weekend off(of which I was unusually exhausted the entire weekend.) I took about three steps and had the worst pain in my left upper quad area(flank.) My first thought was a possible kidney stone. I had never had one but my BF had one 2 weeks prior and he described a similar pain. I tried to lay back down and it hurt so bad I couldn't stand it. I dug out my heating pad and laid on it and finally dosed off for about 2 hours. When I got up the pain was very fague and once I got to my office I took some more med for my migraine so I didn't really feel much pain in my side most of the day. Around 2pm the pain came back and just as strong(I believe the pain med kept the pain eased for that period of time) That night I could not sleep. I was more comfortable laying on my left side(the side of the pain) and I would fall asleep but as soon as I rolled over I was awake, sometimes even screaming in pain. I knew if it was a stone all the ER could do is give me pain med so I decided to try to wait it out. Finally on Friday my BF said he was taking me to the ER to get some relief as I hadn't slept in 2 days(literally 2-4 hrs total was all) So off we go, the doc agrees that the symptoms appear to be a stone, did urine tests, no blood or infection, and did an xray and could see no stone so he set up an appt for a CT. I had to wait an entire week, the following Fri, for the test. Since the ER is usually so slow I asked that the results be faxed to my regular dr as well. Waited all weekend and the pain just got worse and worse, still no sleep. On Mon I called my dr office and the nurse called me back when the report was faxed and said I didn't have a stone. I was so upset at this point I said well what could it be, I am in so much pain, my urine was beginning to get dark as well and I felt feverish so I was worried. She said I should come in right then. So my BF takes me to the dr office and the dr himself came out in the waiting room to get me. He took me straight back and he wasn't being his usual chipper self. He said well no stone, tell me how you are feeling. I described the symptoms to him and he said well the CT appears to show that you have a swollen pancreas. Long story short I said well what can that mean. He narrowed it down to out of 1000 ppl 990 never have a pancreas problem 9 have pancreantitis and 1 pan cancer(which is a death sentence.--his words to me, not mine) He drew some blood and set up another CT this time with contrast and at a different testing place. That one came back ok. He told me I couldn't return to work until we figure it out or I got to feeling better. So 6 docs and one surgery to look at my urinary tract and kidney later I still don't know what is wrong (by this time it is the beginning of Sept) I beg to go back to work for at the very least half days. I had just used up all my sick leave(I had a bunch bc I NEVER use any) So they agree to write me a note for 4-8hrs AS TOLORATED. The day they agree to write the note the home office of the company I work for called me and said that bc they didn;t have a diagnosis for me they were requiring that I see their dr! I reluctantly went as I didn't know if he was just going to look at me and tell them he couldn't find anything wrong(after all they set up the appt and were paying) He turned out to be a really good dr That visit lasted over 2 hours. My BF went back there with me as I was thinking I might need some support on this one plus help remembering everything. We started telling him about the pancreas and the pan cancer scare, he somewhat laughed and said, oh you just turned 27 yrs old, and 27 yr olds don't get pan cancer that is unheard of. I very sternly looked at him and replied, let me explain to you why that possibility is very real to me. I had an aunt that died of colon cancer at age 28 and an uncle that died of brain cancer at 31, so don't tell me young ppl can't get serious, deadly cancers. He COMPLETELY changed from that moment. His eyes were huge. He said really colon cancer at 28??(I have since found out she was 25 when dxn and 27 when she died...I was so young I don't know all the details) He said for someone to have colon cancer at that age there is definitely a famalial(msp) cause. So first he wants to do xrays to rule out a cracked rib or spinal cause. That came back clear. He also did bloodwork and has since referred me to a gastro. They want to do a colonoscopy. I didn't even see the gastro, I saw a PA and she talked to me like 5min tops. They scheduled the appt and just mailed me something never called and the appt is a month away. Ok now that you have most of the history here are some questions that I need answers to:

1) In my bloodwork my white count is high. It has increased since the initial CBC done almost 3 months ago. This last dr also did a SED rate test. My BF's dr told him that if it came back high it didn't mean it was cancer but that it could be cancer(but many other things as well.) If it was normal it meant no cancer. Is this correct? Everything I have read online says that it isn't referring to NO cancer but cancer that hasn't spread to other organs. Can someone PLEASE clarify that for me?

2) If I had a tumor in my colon, wouldn't that have shown in the CT with contrast?

I am trying to figure out if the colonoscopy is neccessary right now. If there is a chance of cancer, I think waiting another month for a test is unexceptable! This pain has been going on for 3 months tomorrow. If it could be cancer, I think waiting 4 mths total is way too long, because the sooner you find it the better. I am also on the verge of losing my job over all this! I have been back at work for almost a month, working at least 4 hrs a day, usually 6 and sometimes 8 but they are treating me terrible. So on top of worrying about my health I am worried I will lose my job more importantly my health insurance. I am single so I don't have a spouse's insurance to fall back on. I need to have these tests done before I can't afford it anymore. If I could get answers to these questions it would help me so much. I have asked 2 doctors about the sed rate and neither would give me an answer. The first was a friend's father and his answer was that I need to stay off the internet, the other was one of my dr's I have been seeing and he said that no matter what it is they would help me through it, but avoided the question so that makes me feel that what I have read online is true.

I am so sorry that this is so very long but I desperately need help. Any insight would be greatly appreciated.

Thanks,

Beth

Simbluej

I read your story and I really wish I could be of more help but I wanted to reply and tell you what I do know. I am 25 years old and am in treatment for rectal cancer and while I understand it is incredibly rare for people our age to get cancer it was ignorant of your doctor to dismiss the idea. Kudos to you for standing up to him and for yourself, you are your own best advocate at this point. For the the white blood cell counts, I dont know a whole lot about what it means if it is too high but I do know that I went through blood testing before I was diagnosed and everything came back normal even though I did have a tumor (stage III so it did not spread to other organs). I didn't have a CT scan until after my colonoscopy so I already knew it was cancer, but it did show up on the scan. My advice would be to definately keep the colonoscopy appointment...especially since you have a family history. Perhaps you could look into another GI and see if you could get an earlier appointment (I know that is a lot easier said than done especially with insurance issues). I hope this helps at least a little. I also believe it is illegal for your job to fire you over health issues especially since you have documentation from doctors. It would be worth looking into. I wish you the best of luck and I hope things start to look up soon!

levensweg

Beth,
First of all, I would personally reccomend keeping the colonoscopy appointment mainly because your Aunt had colon cancer at your age. For question one, I don't know what a SED rate test is. Just looked it up on the internet and it sounds vague. Perhaps a test better used to monitor a known disease rather than for diagnosis. It seems to me that a the only thing a SED test would do would prove that it's not in your head (mental).For colon cancer and other gastro cancers they take a CEA (carcinoembrionic antigens) test. This test is not used for a diagnosis because other factors can affect a cea level.
For question number two, I am a 34 year colon cancer suvivor. My Oncologiist has told me that the Large intestine can be hard to read with many folds bends and turns. A colonoscopy is always required for confirmation and during this, they can remove any polyps and take biopies. I wish I had a colonoscopy when I was your age.... would have saved me one big stage four of a mightmare.

I don't know what the white blood cells are an indication of. I didn't know that a high count was bad. My blood work from colon cancer was bad all across, but mostly I was very anemic from blood loss. My hemoglobin was 7 instead of 14.

I understand your fear and concern. Doctors and tests can be innacurate and you learn quickly that you have to be in charge of your health more than anyone else.It's difficult to be in pain and not know what is going on. I was in so much pain that I almost didn't care anymore what was happening to me.It's easy to fear the worst, but Don't go telling yourself you have cancer! You don't know what's going on yet. Be patient and diligent. Being friendly but assertive with my doctors got me a long way. And make sure you have someone.. your BF or family to help with finding the right doctors, etc.

lev