Long standing symptoms and nothing on CT scan: Does it happen often?

More answers might start to roll in after dark.

I'm not a doctor, so I'm hesitant to recommend anything, and only offer my own experience, which (short version) was: Diagnosed at stage 2 w/ tumor in pancreatic head; 6 months of chemo (FOLFIRINOX); successful Whipple (with maybe one big exception); 4 months with no real evidence of disease; discovery of tumor recurrence at the Whipple site 4.5 months post-op; confirmation 6 weeks later it had spread; now on new chemo (Gemcitabine+Abraxane+Cisplatin).

I had been experiencing back pain after the first diagnosis, but was lucky enough to discover it was only tight muscles a physical therapist was able to work out.

My first symptoms in order were: Abnormal liver enzymes, weight loss, stool & urine changes, the mild jaundice (eyes), then more jaundice (eyes & skin discoloration), then the itching from a blocked bile duct.

It was about 3 months from abnormal liver enzymes to a definite diagnosis. My doctor started down the "obvious" path of assuming a liver issue based on the bloodwork.

Diagnosis steps included ultrasound of liver (inconclusive) repeat blood tests (mostly checking for hepatitis, and liver enzymes, which went up and down before finally going on an upward tear.) That finally led to an MRI -- I think the generic abdominal MRI rather than the MRCP method focused on pancreatic issues. It did identify a growth on the pancreas, but was not very specific.

Next step was an EUS (Endoscopic UltraSound) and ERCP with a biopsy, which confirmed malignant cancer cells, deemed "resectable." PET scan confirmed one tumor and no metastases, which led to the treatment described above. (They also inserted a stent to open my bile duct when they did the EUS.)

What I later figured out is that we could have done an early blood test for CA19-9 for $25 to get a first check for pancreas issues (including pancreatitis).. It's not the gold standard or a final diagnosis, but one piece of many that may confirm each other. There are other cancer markers like CEA, CA-125, etc that can also be ordered by a primary care doc to check cheaply and quickly.

You should definitely ask a doc to order you a germline genetic test like Invitae to see if you inherited mutations that make you more susceptible to certain cancers. That may help zero in the diagnosis now and guide treatment later, if necessary.

You can also contact Grail about their "Galleri" multi-cancer panel. You can chat with one of their medical reps over the phone to get the simple blood test approved. It's about $950 and you'll have to self-pay, but it MIGHT help identify a cancer. There are no guarantees it works either way (not FDA approved; can give a false positive or false negative), but it can be another piece of the puzzle to support or contradict the others. In my case, it failed to report any cancer when MRI a few weeks later found my "new" 2 cm tumor on my pancreas.

There's another test ("360" from Guardant) that can also detect tumor DNA in your blood, along with any mutations it has, which would help guide your treatment. These are all easy enough to do with simple blood tests, and SHOULD be do-able without delay.

In my recurrence, it was kind of the opposite experience of yours. Once the MRI spotted my tumor had come back (and agreed with the rising CA19-9 levels, in spite of two "fancy" DNA tests not detecting it), another EUS was done to get a biopsy, and even that came back negative, so everyone was really confused.

So... there are lots of puzzle pieces to put together. I can't tell which blood tests you've had (traditional biomarkers and newer DNA-based tests), but those are something you should pursue if you haven't already.

There are lots of surprises in this world, and sometimes two things that seem inextricably linked have nothing to do with each other. With your back pain, you might have to consult a neurologist to see if spinal or nerve damage is causing it. There could be spinal stenosis pinching a nerve, a tumor pinching a nerve, or many other causes. I've heard (not confirmed) that esophageal cancers can metastasize to the spine.

All the above is speculation, but I'll say don't take NO for an answer -- it sounds like you've got something very real going on, and you mustn't stop until they identify it. Best wishes to you.

Many thanks for your reply ..hoping for more replies and answers while waiting for MRI within a couple of days. I am sorry to know that you have a recurrece and hope you have a good response to treatment.
concerning tumor markers, I had Ca19-9 and CEA ..both done twice..
they were within normal limits in both times though the second time was higher than the first ..I don't know if this is significant or not ...
concerning Genetic testing, I don't live in the US ...actually I am from a developing country and this may not be available here and I won't bother to have these tests if they aren't going to confirm or exclude cancer 100% ..at least now ...All I need now is to rule out PC even if I don't get a diagnosis for my symptoms ...I will be glad to be sure that it is not cancer..I am pretty sure that I don't have cancer elsewhere after 6 months of tests and scans.
One remaining question: why didn't you have CT scans instead of MRI ? did the doctor think that CT is not accurate enough?

in reply to @hopethereisnothing . What makes you think that you have pancreatic cancer? Have you had the appropriate lab work done to assess your pancreatic enzymes and things of that nature? Could any of your symptoms be related to your diet? I am not minimizing anything you have posted, as I too thought that I had cancer because of my liver and pancreatic ducts being dilated, a 25 percent weight loss, chronic diarrhea and nausea, but have been reassured that this is not the case. I understand that mysterious symptoms can be frightening, and I would encourage you to speak to your doctor about your concerns and worries about having pancreatic cancer. You are young, there is no history of pancreatic cancer in your family, and from what I have read, your test results have not been conclusive for a cancer diagnosis. I am very sorry that you struggle. There are times when I tend to overthink my health conditions, and I have to stop myself because it drives me crazy. As long as I wake up every day, I am grateful. Gratitude is sometimes all we have, at least that is how I tend to view life presently. Yesterday is a memory, tomorrow is a dream.
Also, a radiologist cannot make a diagnosis of cancer. The diagnosis can only be made by the treating hepatologist or gastroenterologist. This was made very clear to me during my recent appointment with my hepatologist. She cannot ascertain any concrete diagnosis until she does an endoscopy later this summer. Best of luck. Maybe trying to do some journaling would be of help to you, thus the typewriter photograph I found for you. Journaling has been of benefit to me at times during my long road to a healthier place. Best of luck. Be kind to yourself.

Many thanks for your reply. I am glad that you have been reassured you don't have cancer , this is a huge relief. I hope I get this result soon.
To be honest, I do have health anxiety and it is all about cancer..I don't care about any other illness even if I have symptoms.. as long as they don't match a cancer.
I first thought of PC in February.
At that time I had burping, flatulence and some increasd stool frequency (not actual diarrhea).I googled (burping and cancer) and found that it can be associated with esophageal, stomach and pancreatic cancer. I had an endoscopy that ruled out esophageal and stomach cancers.
I was somewhat assured that I didn't have PC as I had a clear ultrasound and CT scan 2 months earlier. I also had tumor markers at that time and all was normal. I tried to distract myself and forget about it but I couldn't.
I googled again and found a lot of studies about (missed PC on CT scan) and had an impression that missing PC on CT scan is fairly common, sometimes I thought this was (the rule) according to what I have seen on Google, that was when I started to believe that I had PC.
Fast forward to mid-March, I started to have back pain and it was the typical type of pain associated with PC, few weeks later I got upper abdominal pain also typical for PC, so I had almost all the (pieces of the puzzle together,) pointing to PC. I had another CT scan , ilI thought that the tumor which was small and undetectable must have grown to a size that is easily caught by any scan, especially that (it) is now causing severe symptoms, but again, nothing could be caught.
Concerning radiological diagnosis, I know radiologists can't diagnose cancer but they interpret the scans and should know if there is an abnormality, that should be further investigated by clinicians.
Here where I live (not US or Europe), clinicians in general are not good at interepreting scans. They totally rely on reports given by radiologists so if the radiologist sees no abnormality, no one will believe that there is something abnormal in the area. For that reason, among others (age, general appearance , history of HA) I was told by many doctors that I don't have PC, but the truth is that I have intolerable pain and other symptoms that could be PC or something else. Unfortunately, nobody could give me another explanation of my symptoms so the priority now is to rule out PC .
By the way I had tumor markers slightly rising but within normal range and pancreatic enzyme tests within normal. It is really mysterious condition I feel like I am in a nightmare.

in reply to @hopethereisnothing . Okay, I get it. Health anxiety is awful, and understand that you may be living somewhere where the medical care may be sub par. It can be stressful trying to get answers, and even more so when searching for answers on the internet, because one article leads to another, and pretty soon you are on information overload. I have been in this position myself while waiting to be referred to the correct specialist. It is exhausting, and here in the States, well, at least my doctor, hates it when I have told him that I have found a particular article in a medical journal that is relevant to my condition. I wish I had just the right answer for you. I was thinking about my last post, and that was : "don't borrow trouble." However, I do not mean to offend you in any way, shape or form. I validate your concerns and your fear. It is my understanding that pancreatic cancer can be hard to detect, and is sometimes caught at later stages. I had this happen to two very close friends who died as a result of pancreatic cancer. Both had symptoms, but by the time the cancer was revealed, it was too late for any relevant treatment other than comfort care.
My medical anxiety is similar to yours. Currently, while dealing with this mysterious liver/pancreatic duct issue, I now have a lump on my breast which will be further addressed via diagnostic testing next week. I have had so many breast biopsies that I have lost count. I had a lumpectomy many years ago that was done to remove a radial star and the biopsy did come back showing atypical cells. Every female relative on my mother's side of the family has had cancer, has died from breast cancer etc. However, even though I have no control over what is happening, I am still anxious as are you with your fear of pancreatic cancer. I am giving you a virtual "high 5" as I type this, okay. While I rarely get on the internet after 2000 PM, for some reason I am up late and decided to check my email and saw some notifications from the Mayo Clinic and stumbled upon your post. Synchronicity. Do you believe in that?
I have a friend who has helped me develop some positive mantras, and sometimes I have to say them twenty times at once. Check out Emil Coue on Wikipedia. "Everyday in every way, I am getting better and better." It helps me stay focused, and it might help with your anxiety presently. I actually made a sign for my entryway with these words so that I remember to say this "mantra." Again, I have no magic for you, but I am here to support you so that you do not feel so alone. Signing off now to get some long needed rest. Wherever you are, please stay safe and take care of yourself in the best way that you possibly can. There are many who suffer for no good reason other than just the luck of the draw. Try to make the best of each day, and know that you are not alone. You've got this.

Endoscopic ultrasound and MRCP might add something as they are able to find small abnormalities. Try investigating patient financial assistance at a US Pancreatic Center of Excellence. The National Pancreatic Foundation lists the centers. Might have an idea for you as to how to pursue an expert opinion. Check for patient financial assistance at the hospital website and see if it would apply to you. Lack of access to a pancreatic center of excellence is a problem even in the USA so you certainly have plenty of company in the search for expert care.
Anxiety can be very debilitating and interfere with getting on the right track. Treatment for anxiety itself might improve your quality of life. No shame in health anxiety!

Thanks for your reply.
Unfortunately, I am not from the US and here where I live, medical care is almost all private and not so good.
I asked about EUS and found it is very difficult to get this here and probably I will have to wait a very long time and the expense is terribly high.
I will be getting an MRI and probably MRCP soon but I wonder if a (small, undetectable tumor) could cause all the stmptoms I am having and for this long time ( I have been symptomatic for more than 7 months). Anxiety is killing me, besides the pain and I am on anti anxiety medications to help me cope with this difficult time I even can't sleep without medication. I hope that a miracle happens and this suffering ends soon.

My prayers are with you. Maybe some of the symptoms are due to pancreatic insufficiency which can also cause gas, weight loss, also chronic pancreatitis can cause pain. The symptoms can overlap with cancer symptoms. Some medications like Cymbalta can help with both pain and anxiety. Do you have access to a pain specialist? I certainly hope you are not found to have pancreatic cancer, but something is going on and hopefully you can get the correct diagnosis and find treatment for your symptoms.

I've got good news..I had the MRI today and with personal contact with the radiologist, it confirmed that there is NO pancreatic cancer. Thank God.
Still don't know the cause of my pain but I can live with it as long as I am not concerned with something fatal.

So happy to hear your good news!!! Hopefully you can find some answers for the symptoms you are having and will be returned to a good state of health. Best wishes for recovery.