Leukemia and Lymphoma Community
1.85k Members
Avatar universal

What is normal progression of therapy after failed biopsy attempts?

I was diagnosed with Pancreatic Insufficiency, positive fecal lactofarin and enlarged common bile duct and lymph nodes with FDG uptake (max) in my abdemon. They had two failed biopsy attempts. I have had many tests scans and procedures in an attempt to find the primary tumor but they can't.  The only thing is an adnexal mass that did not show up on the PET. I have a history of Cervical Cancer in '96 and it was originally thought by the Radiologist that the disease had returned but my Gynecological Oncologist (Hopkins) denied this as any truth due to the fact that this was over 15 years ago and i had a radical hysterectomy in which all disease was removed.  She washed her hands of her specialty and sent me to a gastroenterologist and this is where they diagnosed the Pancreatic Insufficiency which is severe.  I have ongoing symptoms; one being sleeping at least 15 hrs a day on a regular basis, so you can imagine it has destroyed my life.  I am incredibly frustrated because of all the doctors i have seen (Hopkins) they seem to start with a passion to find the answer and agreeing that it is imperitive,  but when the tests come back unexpectedly or confusing they just refere me to someone else and they seem to wash themselves of this.  I'm so frustrated.  Especially cause i never expected this of Hopkins and on one of my last blood tests not only does it continue to show a slight elivation of WBC but this time the platelettes were significantly low. At times i figure to forget it and move on, wait till something significant happens but then other times i get scared and mostly frustrated with the symptoms and i just want to know so i can fix it.  
6 Responses
Avatar universal
Oh my question!!!!! sorry....  
What is normal therapy after failing to biopsy enlarged lymph nodes and with Interventional radiology unwilling to take a chance due to the risk of hitting blood vessels.  It seems that the approach they are taking is to wait and see, but is this the only thing to do? or should i be doing something more.  I have started the enzyme therapy for the pancrease. Aside that, i don't know what to do.  I don't even know if all this is related.  Any thoughts?  We already excluded viral or bacterial causes for the positive PET scan but it seems to me that this is something important to get to the bottom of, not something that we should just wait and see.
1081992 tn?1389903637
Hi, I'd guess they say to wait and see, not because what you have is unimportant but because they don't know what it is and therefore don't know how to treat.

Here is some complete speculation: a virus nor only is in the bile duct, but also the pancreatic duct and is causing the insufficient enzymes to be released into the gut. I'd guess HPV. Did they test for it? Maybe it's a rare strain that doesn't show up on normal testing.

There is some connection of HPV to pancreas. Did you ever have Gardasil?

I'd guess that your lymphocytes are what are making your WBC high, correct?
Avatar universal
Thank you for your response! i got HPV many years ago (1996) which turned into cervical cancer. Had a radical hysterectomy. And they took 24 nodes all neg. originally the radiologist said they thought the positive or (max) FDG uptake on the PET, was due to reoccurrence of the cervical cancer but my gynecological 5ndvw-***@**** said it could not be due to that because I had been free of cancer for, what? 15 years. The chance of reoccurrence was almost non existent. And I didn't think I could get it without a cervix.  I do have a cyst on my ovary but was not shown on the PET with any uptake so she moved me to a gastroenterologist. And no I don't think they tested for it. I'm just lost. I can't even manage a normal day without begging to put my head down n sleep.
Avatar universal
I don't really know about the stuff you describe (I have a blood cancer so it's different) but something is going on and u deserve some explanation.

My diagnosis was very difficult, saw many many specialists before finding out I had Multiple Myeloma so I can sympathize. I was finally diagnosed at the hospital when I was refered to an internal medicine clinic for difficult to diagnose / complicated multiple diseases clinic. (a la Dr. House)

Avatar universal
Interesting! I have never heard of such a clinic. I do have multiple things going on at once and that seems to be what's complicating everything. It's crazy! My doctors don't even know which way to send me anymore. They start out with a happy Manor self about them yet in the end it always seems that some result for a test in turn confuses them and they clear themselves of their specialty then find something unrelated To the greater issues going on. Yes I am very frustrated so the idea that there is a clinic out there that deals with multiple issues it seems late that would be a good place to go or to bring up at My next doctors appointment. I would like to thank you for the feedback I very much appreciate it!
Avatar universal
U are welcome.  The clinic was a referal only clinic at the hospital where I had already seen several specialists.  I was finally referred there by an Emergency Department doctor when I presented with fainting and an irregular heart beat from being very anemic. He knew something was going on and refered me to the clinic on an urgent basis which in this hospital means follow up the same week.  The clinci is run by the resident doctors in Internal Medicine but had staff physisicians overseeing it. Before my appointment they had me do about 10 vials of blood for testing and chest xrays. So when my appointment came they had mostly figured out it was cancer, but I needed a bone marrow biopsy (done that same day) to confirm the type
Have an Answer?
Top Leukemia & Lymphoma Answerers
1081992 tn?1389903637
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Popular Resources
An interview with the co-discoverer of one of the biggest breakthroughs in cancer research
From causes to treatment options, get answers to your questions about CML, a type of blood cancer
New drug options on the horizon may make CML, a type of blood cancer, one of the few success stories in cancer treatment
For people with Obsessive-Compulsive Disorder (OCD), the COVID-19 pandemic can be particularly challenging.
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Here’s how your baby’s growing in your body each week.