Can I request a PET scan? Any info would help thanks

Hangliter7
Hangliter7 Member Posts: 4
edited May 2015 in Colorectal Cancer #1

Hi guys thank you for all the help so far. I have not been diagnosed with cancer and I do apologize for posting here. I've had allot of symptoms: weight loss of 40lbs over 6 months, night sweats, Fatigue, nauseated, small groin node, (1.5cm)dizzy, small amount of blood in stool, and the worst is hip and abdomial pain. I've had a CT of abdomen and blood and urine test. Now I have an appointment With an oncologist tomorrow. What I would like to no is can I request a PET scan without a diagnoses of cancer? This has been causing me lots of stress. I have 3 boys and one on the way! I just want to figure out what is going on before he comes so I can get back to my life. My regular doc things it's all in my head, because there was a clear CT. I wish it was, but the symtoms are getting worse. So is the anyway I can convince the oncologist to give me a PET scan just to be safe? Any info would help. thank you guys. 

 

Sorry so so much is going on I can't think straight. I did have a  colonoscopy in December and also had a CEA test done last week which was @ 1.3. 

I'm a 27 year old male

Comments

  • traci43
    traci43 Member Posts: 773 Member
    #2
    Why not ask?

    So much depends on your insurance as to whether you'll get a scan or not without previous cancer diagnosis, I would think.  What about blood work?  Have they checked your CEA levels?  What about a colonoscopy?  That would have no radiation but would check your colon for tumors or the source of the blood you see.  MRIs are sometimes used as well for diagnosis, although PET Scans do show cancer activity.  Good luck tomorrow and keep us posted.  Traci

  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    #3
    A second opinion

    You mention that you have already had some tests.  Have you gotten the results?  Have they done a colonoscopy?

    Sorry if this question seems "dense" but are you male or female?  You mention that another baby on the way.

     If your body is giving you the message that something is wrong, and the onc you see thinks it is all in your head, I think it is time to get a second opinion from a doctor unrelated to your regular doctor or current onc.

    Wishing you best results on your quest to find the real issue.

    Marie who loves kitties

  • annalexandria
    annalexandria Member Posts: 2,571 Member
    #4
    That's a lot more info than you posted before,

    and even more cause for concern, imo.  You can ask for blood tests (CEA, CA 19-9, and maybe CA 125 if you're female), but these are not definitive for many patients.

    You can also ask for a PET, but even when dx'ed with cancer, it can be hard to get insurance companies to pay them.  However, I would go ahead and make the request...you could tell them that you have heard from other cancer patients that CT alone failed to pick up growth in the intestines (not uncommon).

    I would start by requesting a colonoscopy, which may be useful in determining what's going on.

    Good luck!

  • Hangliter7
    Hangliter7 Member Posts: 4
    #5
    annalexandria said:

    That's a lot more info than you posted before,

    and even more cause for concern, imo.  You can ask for blood tests (CEA, CA 19-9, and maybe CA 125 if you're female), but these are not definitive for many patients.

    You can also ask for a PET, but even when dx'ed with cancer, it can be hard to get insurance companies to pay them.  However, I would go ahead and make the request...you could tell them that you have heard from other cancer patients that CT alone failed to pick up growth in the intestines (not uncommon).

    I would start by requesting a colonoscopy, which may be useful in determining what's going on.

    Good luck!

    Thank you

    sorry I did have a clean colonospy in December and a CEA blood test last week @1.3. Thanks for help. I have state insurance so they probably won't pay for it. At this point I would pay for it there was a payment plan lol

  • Hangliter7
    Hangliter7 Member Posts: 4
    #6
    Lovekitties said:

    A second opinion

    You mention that you have already had some tests.  Have you gotten the results?  Have they done a colonoscopy?

    Sorry if this question seems "dense" but are you male or female?  You mention that another baby on the way.

     If your body is giving you the message that something is wrong, and the onc you see thinks it is all in your head, I think it is time to get a second opinion from a doctor unrelated to your regular doctor or current onc.

    Wishing you best results on your quest to find the real issue.

    Marie who loves kitties

    thanks

    I did have a clean colonospy in December and I'm a 27 year old male

  • Momto3boys
    Momto3boys Member Posts: 16
    #7
    Expensive

    They are really expensive.  I'm fighting with my insurance company right now, to see if some enlarged lymph nodes are lighting up.  My oncologist is fighting for one.  I think if you pay out of pocket they are between  $10,000-12,000.  Worth fighting for.

  • NewHere
    NewHere Member Posts: 1,428 Member
    #8
    Hangliter7 said:

    Thank you

    sorry I did have a clean colonospy in December and a CEA blood test last week @1.3. Thanks for help. I have state insurance so they probably won't pay for it. At this point I would pay for it there was a payment plan lol

    Sounds Like Something...But


    Your general symptoms sounds like something is going on.  Are you a smoker of any kind?  Based on a clean colonoscopy, the lowish CEA and all the tests you have otherwise been through, it is sounding like it is not colon cancer, though of course speak to your doctors.  Tests can miss things and it is possible that all the tests so far are false negatives.  Did you also have tests for blood in the feces?  That is something you may want to ask about.

    All that being said, you really should find some sort of answer in the context of all the symptoms you are having.  I am not sure I would accept an answer that it was all in my head like the answer you were given.  What other things have they been looking for in the tests?  Have they given a list of other causes other than the generic "in your head."  40 pounds weight loss, blood in stools, night sweats and the rest sound like more than "in your head."  

    You can request a PET scan.  The doctor may even request one based on your symptoms, and insurance may cover it.  Very often you can arrange a payment plan with the facility.  Took a look at my recent bills and I think my PET scan was just under $6,000.  Still waiting on insurance.  Ofen if you pay directly, fabilities will give you a discount. The bottom line is your are young and have another child on the way (congrats.)  You really need an answer on all of this just for your peace of mind and also to get to the bottom of the symptoms.  The short term cost, to the extent you need to come out of pocket on a PET scan (subject to what doctors say at you appojntement), especially if you can arrange payment terms, is going stink a bit but you will not remember the cost for the most part down the road as compared to the worry and uncertainty now.  $100 a month for 5 years is $6,000.  Try to get decent terms and avoid the credit card, since the credit card interest can pile up. IF it was me, I would just do it unless doctors are looking at other things first for an answer.  

    But make sure you get an answer that makes sense.



  • UncleBuddy
    UncleBuddy Member Posts: 1,019 Member
    #9
    Don't take no for an answer!

    CT scans don't always show tumors. My brother's liver tumor was missed several times with a CT scan, so they have to do a PET scan to check on it. Insurance companies give a hard time, but if your dr is good, he will call himself. My brother's dr called the insurance company several times to get him the help he needed.

    It may be nothing, but until you know for sure, you're going to be stressed out, which is just as bad. Take care and let us know what they find out. If your dr is unwilling to call them, find another dr.

    Lin

  • tanstaafl
    tanstaafl Member Posts: 1,313 Member
    #10
    more broadly

    A lot of people go through these episodes, don't have cancer but remain thoroughly miserable and don't get useful answers for years.

    The doc may dismiss the groin node as a transient inflammation, infection or injury.  Blood can reflect other things like hemorrhoids, fissures, or GI breakdowns associated with certain nutrient deficiencies.  Your fatigue, nausea, weight loss, hip and abdominal pains could all more likely start with a gastritis, sprue, pancreatitis or others. (A joint can be very painful without absorption of adequate bone or collagen forming factors)

    Rule No. 1, don't panic and blow all your money and time on one horrible possibility that is likely wrong.  

    I'm assuming you've already had a CBC and Chem 12 or 14, the most common blood test coverage, along with your CEA.  A Chem20 can be about the same price with better coverage, next year.   Conventionally speaking, you've pretty well ruled out colon cancer, as is.  Useful residual tests that we've used with CRC but are more likely to be for other things are CA19-9 corrected with ESR, and 25 hydroxyvitamin D.  That's overkill with respect to CRC, but a lot of people are having problems with vitamin D too.  

    In conventional medicine, ongoing  mystery meat problems are a snipe hunt that can terminate with a psychiatric referral and/or script.  A wastebasket diagnosis with no resolution, sort of "adding insult to injury", financially and the original complaint.   So it is important to find different medical views, sooner than that.  My next move might be a doctor or naturopath oriented toward digestive problems and therapeutic nutrition.  In some states, insurance will pay for the ND.

     

       

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