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Scared, desperate, & need advice (long)

bbethb79
Posts: 14
Joined: Oct 2006

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

AuthorUnknown
Posts: 1560
Joined: May 2006

Dear Beth,

I am very sorry that you are so ill. Hopefuly you will get some answers on this board.

To answer your questions:

1. High count of white blood cells could signify an infection or some other blood issue.

2. If you had a tumor in your colon, it would most definitely show up on your CT scan.

3. Do you need colonoscopy? It is hard to say. On one hand - no, because of clean CT scan. On the other hand - maybe yes, because maybe something is going on there that CT scan does not pick up. When there is a problem to diagnose something it is usually better to have unnecessary test done rather than not to have it done.

My other thoughts are:

1. I know you don't want to worry your family. But I think it is the time you do it. Your mother and/or your father might be able to go to doctors with you and really fight with them. If I had a daughter or a son, I would definitely want to know that she/he is ill and needs help. I would be upset if they did not tell me. So, I think you need to tell them and not to bear this alone. You are too young for that. It is nice that you have great boy friend, but it is not the same as your parents.

2. You have had pain for too long now. Somebody has to fight with these doctors to have something accomplished. I have got used to the medical care. I am very much accustomed to fighting with the medical care to achieve what is needed. I know that there is no other way.
These doctors you are seeing need to put their brains together and figure out what is going on with you. Few things I can think of: GYN problems, apendicitis, infection, etc. You should not be waiting not only a month, another week. If the doctors are not doing anything, have your mother/father go to the hospital manager or whoever is in higher power.

3. You could ask your doctors for PET scan and/or MRI and/or bone scan - they sometimes pick up what CT scan does not.

4. As far as your work is concerned: I don't think they have a legal right to terminate your employment because of your illness. Of course, the lack of diagnosis is not helping but damaging the situation. Take your phone book and call some labor attorneys and ask this question. Some will say that they do not answer questions over the phone, but some will. That is how you can get a legal question answered free. I did this many times.

I hope this helps. Know that you are not alone here. And I hope you are going to tell your parents about your situation. You can email me any time on this site by clicking on little envelope in the bottom of the box.

Best wishes, Eleonora

JADot's picture
JADot
Posts: 720
Joined: Jan 2006

Hi Beth:

It's really simple. If there is a history of early-age colon cancer in your family, go and get a colonoscopy as soon as possible. If it comes back clean, then that's one less thing you have to worry about. Since there is a family history, you may also want to get a genetic test for HNPCC - a set of genetic mutation that happens which can lead to young-age colon cancers.

After I had colon cancer, I went in and had my stomached scoped from the other end too - not because I've had any symptoms, but just to get complete past the shadow of doubt.

Again, it's really simple. If you're worried, go get tested!

Best of luck to you.
Ying

nanuk's picture
nanuk
Posts: 1363
Joined: Dec 2003

I don't know where you are, but it sounds like you need to be evaluated by a medical center like
Virginia Mason in Seattle, Mayo Clinic or M. D. Anderson. The advantage is that all specialties are under one roof, and they bwill do what's necessary to arrive at a diagnosis.

KathiM's picture
KathiM
Posts: 8077
Joined: Aug 2005

Beth,
See my reply on the Young Survivors.

But, also....WBC can mean pancreatitis....VERY VERY PAINFUL, but not life threatenening (my girlfriend has it, chronic...hospitalized each time, morphine is all that will touch). BUT, yes, if they will do a colonoscopy, I would go ahead. Some things just aren't visible on CT Scans. This can really 'scope' things out! And with a familiar history, well better to over test, I'd say.
Just take a deep breath. If your employer decided to let you go, there are lawyers at the least to stop it, and insurance that will cover you otherwise. I, too, am single...self-employed. Easier said than done, but you need to focus on you right now...shame on your employer...would a sit down 'chat' help? I would be careful about sharing your familiar cancer with them....employers hear 'cancer' and they just see HIGH medical bills! Sigh.
Have you shared with the docs what meds you are on? Please make sure they know about everything....the migraine stuff included....even vitamins and how much....it COULD make a difference.
As I said in my other post to you....cancer is one of the possibilities, and congrats for hanging tough for a diagnosis...but, PLEASE try to breathe....My docs feel I had been 'growing' my tumor for 3 years by the time they found it...and you know from the CT Scan that there is nothing that big....
Hugs, Kathi

Betsydoglover's picture
Betsydoglover
Posts: 1256
Joined: Jul 2005

Beth -

I am so sorry for your predicament and the pain and lack of a diagnosis. You will be in my thoughts. Should you have a colonoscopy? Absolutely (and it really isn't bad - the prep is the worst - you'll never know what hit you as far as the test goes). Should a CT scan show a colon tumor? Usually, but the colon is a very "folded" organ and as my colorectal surgeon, oncologist and GI doc all say, it CAN miss a colon tumor. Usually not, so you shouldn't get worked up, but getting scoped is the way to go.

When I first presented to a GI doc, with clear symptoms of colorectal cancer, I was given a scope date that was 7 weeks in the future. I freaked out, but I was told I was on the priority list (yes, that is scary) and the afternoon of the day I had my appointment, my new GI doctor called to say that he had a cancellation and could do me in 3 days. Check back with the GI doc and see if you can get on a priority list for cancellations (I think people just love to cancel these types of appointments when they are routine!) Also, perhaps you can explain your fear of insurance lapse and use that to get in sooner for the text.

As far as work goes, do you know what your company's policies are? And did you apply for FMLA? I know that just guarantees your job for 12 weeks, but it also covers "intermittent" leave and can add up to quite a bit longer if you are partly working as you are.

I am sorry the doctors you asked about sedimentation rate were so confusing. It's sad, but in our litigious society, they are probably worried about saying anything definitive. The sedimentation rate test is a general test which can detect 1) infection, 2) inflammation of all types, 3) rheumatoid arthritis / lupus and 4) cancer. But as I understand it, it is not a great test and is NOT specific for any one of these. A high sedimentation rate would probably indicate inflammation of some type somewhere, but it certainly is NOT a cancer test. Since this is such a non-specific test, my guess is that a negative (low) sedimentation rate does not necessarily mean no cancer. I think as a test it just one datapoint - not something you should stress over in a big way.

You have so much on your plate - especially for someone so young. Keep coming back to us. If it is any help, most people with colon cancer do not experience pain as a symptom.

Take care,
Betsy

mwomack
Posts: 78
Joined: Jan 2005

My husband, stage IIIc (T3 N2), had a CT right after his colonscopy in which the cancer was found. The radiologist knew where the cancer was,
but the CT showed "no evidence of colon mass."

bbethb79
Posts: 14
Joined: Oct 2006

Thanks for all your input. When I originally typed this on another board it was before my last dr appt and I did not edit it before I copied to this board. I went to a gyno just to rule out any problems there and he was a wonderful doctor. He said he didn't believe it was anything gyn related. He also answered my question about the sed rate test. He was a little caught off guard when I asked but he did tell me that he never uses that test when the possibility of cancer comes up because it really doesn't tell you anything. He said that it did not mean no cancer so I should go ahead with the colonoscopy. The only reasons I asked those questions is because I feel like I have wasted so much time ruling out all the other things. For instance with the little surgery I had, I just knew in my heart it was a waste of time. What the urologist said to me the reason he wanted to do it just didn't add up so I even put it off a week for a second opinion and that dr suggested I go ahead with it in case there was a kidney stone that didn't show up on the CT it would show it.

I was out of work for two months before I convinced them to let me go back. So I don't have very much FMLA time left. If colon cancer was not a possibility(if the other tests I had had would have shown it) I didn't want to waste any more time off of work. A sit down chat would not work here. It is a long story but basically my boss is in a position that there is a test he has to pass to keep his job and he has already failed 3 times, only has 2 more tries before he loses his manager position and currently there is not a lower position in our office for him to have if a new manager comes in, so if he is able to get rid of me then he still has a job. He has already had the district manager come in and have a 'talk' more like a blessing out, with me. He basically said that my pain wasn't something they could see and he thought I was faking it. So I really don't have anyone to turn to. My mom has a friend who's husband is an atty and he is supposed to be calling me to talk with me about it all and give me some advice. Like I don't even know if it is legal to make me go to their dr when I haven't tried to file worker's comp or disability.

I got out my medical records so I can give a few more specifics:

On 7/14 the first CT was done and said the following:
1)Some fullness in area of panceatic tail and increased attenuation in surounding fat.
2)No evidence of bowel obstrction or free intraperitoneal air.
3)There is evidence for diverticulosis in the sigmoid colon without CT evidence for diverticulitis.

7/17 bloodwork
Hemoglobin HIGH
Hematocrit HIGH
Absolute Lymph HIGH
Lipase LOW
BUN LOW
AGAP HIGH
ALT/GPT HIGH
Lipase LOW
WBC HIGH (12.5)

7/25 CT with contrast
Spleen, liver, pancreas, adrenal glands, kidney and abdominal aorta appear to be normal in size and shape. Gallbladder unremarkable. (no mention of colon)

9/5 bloodwork(before surgery-not as detailed as the other two)
All normal ranges except BUN low

9/20 boodwork
WBC HIGH(13.3)
Monocytes Low
Neutrophils High
BUN/Creatinine Ratio Low

I have also had Xrays to look at ribs and spine and all were normal.

As for telling my parents, I just can't put them through the worry until I know. They know I have been in a lot of pain and weak and tired as well as all the nausea and vomiting and weight loss(which they can see with their own eyes). I really haven't kept anything from them except the fear of cancer. If I do get that diagnosis I won't keep it from them. There isn't anything else they could do to help make things happen. My dad works at the large hospital in our area and is even friends with a few of the higher ups. He has tried and tried to get advice and to get me appointments and he hasn't been able to get anything done any faster than I have. I did call the gastro's office Friday btw, and the girl told me that my test was a priority and that was the first available one. She also told me that she would but me on a priority cancelation list and if they have a cancelation they will call me. So now I just have to wait it out. Can anyone tell me what a PET scan is and how it is done? I may call my GP and ask if he can schedule one if it may give us some answers more quickly.

Thanks again for everything. I am still worried(as would be expected) but all the stories and support on this board has helped me have a better peace this weekend and I couldn't begin to repay any of you for that.

Also Kathi, you said your girlfriend has pancreantitis, when she has had an attack of that, how long did it last and is her amylase level usually through the roof? Mine have not been elevated at all and that is one of the main reasons all the doctors have moved away from that theory.

Oh one last thing(sorry I have been so long winded) mentioning the hospitals that have these great teams, does anyone know of a place like that in or near Georgia? I know we have the medical college of georgia in Augusta and Emory University in Atlanta, other than that I am not sure what we might have. And where do you start when you go to a hospital like that? Do you just walk in the door and say I need help?

2bhealed's picture
2bhealed
Posts: 2085
Joined: Dec 2001

Hi Beth,

My sister was diagnosed with intestinal cancer when she was 29. she had been VERY sick for a few years, but kept being misdiagnosed due to her young age coupled with doctors who gave up trying to uncover her source of pain. I read your entire post, but what stuck out to me was your comment about vomitting.

Even if they don't find anything with a colonoscopy and you are still in pain and vomitting please have them check your small intestine. In my sister's case they went up her hinder and down her throat but her tumor was hidden inher small intestine. By the time they found the tumor it had adhered to the main artery that feeds the sm. intestine so they could not remove all the cancer. In other words, it was too late.

She messed around with local doctors first, then went to Milwaukee and finally went to the Mayo clinic where they did the proper testing.

when I had my symptoms...excruciating pain in my lower abdomen, vomitting and bloody diarrhea....I skipped the locals and went right to Mayo for all my testing. They are FABULOUS! The clinic runs like a Swiss Watch....smoothly and easily. anyone can go. You have your tests done in the morning and you get the results in the afternoon. I love that place!

I was 39 when I was diagnosed and was told my tumor was in there from 5-10 years.

anyway, keep us posted and hope you get some answers sooner than later.

peace, emily

houseofclay
Posts: 63
Joined: Nov 2004

I am in Atlanta, email off list (aclay@ccalliance.org) about treatment options in Georgia. Thanks

AuthorUnknown
Posts: 1560
Joined: May 2006

Beth,

To read about how PET scan is done go to:

http://www.webmd.com/hw/health_guide_atoz/aa80345.asp

http://www.radiologyinfo.org/en/info.cfm?pg=pet&bhcp=1

cal79
Posts: 57
Joined: May 2005

Hi Beth,

You are obviously very worried about this, so the best thing to do is get a colonoscopy. As far as tests go, it is the only pretty much definitive one for colon/rectal cancers, so this is the best for getting the answer you are looking for.

Your doc's comment about familial cancers is not exactly correct. Although sporadic cancers in young people are unusual, they are certainly not unheard of (example: I was 25 at dx with no family history and have tested negative on all known genetic tests).

I hope you manage to sort all this out soon - keep us posted.

Cal :)

2bhealed's picture
2bhealed
Posts: 2085
Joined: Dec 2001

We had no family history either and having two sisters--young--to get intestinal cancer is suspect of other causes. Not sure what....but NO family history. I was shocked when I got my sigmoid colon cancer even after my sister died of adenocarcinoma of the small intestine. We were told her cancer was so rare.

peace, emily

bbethb79
Posts: 14
Joined: Oct 2006

Well to my suprise the gastro's office called me around 4 this afternoon and said that they had a cancelation and I was first on the list if I could do it Wednesday. I was supposed to take milk of mag this morning but she said it would be ok for me to go ahead and just do it tonight and the rest of the prep tomorrow. I am so happy that I am able to go ahead and do this(first I still have insurance for now) But now I am really getting nervous, and a little scared. I guess that is normal. Hopefully I will have good news before the week is out(fingers crossed) How does this usually go? If they find anything tomorrow, how long do I normally have to wait? Also do you think I will be able to work any tomorrow? I have taken the MOM tonight around 7(nothing from that) and then I have to start the bisacodyl at 3 and the gallon of stuff at 6.

Again I want thank everyone so much. All your support has been wonderful!

AuthorUnknown
Posts: 1560
Joined: May 2006

Beth,

From what I read on this site, they will put you under some kind of cedation and you will not be much aware of what is going on. Because of this cedation you should not drive yourself, have somebody drive you there and then pick you up. I doubt that you will be able to work after the procedure. You might want to take a half day off tomorrow for the prep. My understanding is that when the test is done, they will put you into recovery room and then somebody will tell you what they found.

I am glad that you are going to have this done right away. If they could do upper endoscopy for you at the same time, that would be good. This test is more difficult, you will have to swallow some tube with the camera in the end. But again it is under cedation. This test shows what is in esophagus and stomach and maybe thin intestine. Ask about it.

I hope and pray that they will not find anything on wednesday. This will be good news, but the problem will remain as far as what is wrong. Well, one step at a time.

I hope you saw my post about PET scan above.

Please let us know what happens.

Best wishes, Eleonora

vinny3's picture
vinny3
Posts: 933
Joined: Jun 2006

Hi Beth,

Sorry you are going through all the pain and not knowing. I think the not knowing is the worse. I'm glad you are having the colonoscopy. If that is negative I would press them to do an endoscopy of your upper GI system and perhaps including an ERCP where they look at the beginning of the pancreatic duct. If all that is negative they may need to do a contrast test where they have a small bowel follow through. Then your whole intestine will be covered. As far as the sed rate that is only a very vague test that can give some indication of inflammation. For instance, when people have active Rheumatoid Arthritis the sed rate is elevated. Any infection can make it elevated.

Keep after them,
Dick

tnt2
Posts: 1
Joined: Sep 2007

Hi Beth nice to meet you,, my wife's name is also Beth. your last mess was over a year ago hope you are doing ok,,,just lookin for someone to compare probs to if you are up to it,,, i will pray for you,,,, and hope you are fine,,,if you reply i could send you my email ad,,my wife beth has a prob,,, and i love her so much,,,

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