Connect
Lost with no confirmation of NETs origin: Innumerable liver lesions
Hi, my dad-active 63 year old kept complaining of boating and dull stomach pain. I am a nurse but am not very familiar with oncology specifics. CT and MRI scans later- mass-like lesion near pancreatic head also thickening in duodenal bulb(biopsied) and multiple lesions in liver (also biopsied)
Suspicious of stage 4 pancreatic cancer.
Fast forward to pathology report- only thing I understood was the liver biopsy saying “metastatic high grade neuroendocrine cell carcinoma” -I know this is bad.
Now this is the kicker- it also says “from either the GI tract or pancreas”
We have the first meeting with the oncologist in two days to talk about everything. But in the mean time to keep myself busy I am trying to research and get educated in order to ask better questions.
I’m lost with the fact that they can’t confirm or deny the origin from the pathology? And with the origin being unconfirmed now does that affect treatment options?
Any similar experiences here? Thank you!
Like
Helpful
HugInterested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.
Connect
Yes but i have to watch what i eat or i get a little bloated and same pains. Trying to stick to mostly plant based diet and fish. Movement is good as im doing yoga 2days and aerobic exercise the other days per week. The more vertical i am the better i feel.
-
Like -
Helpful -
Hug
2 ReactionsThanks for your reply! I agree. If we can organize it - I'd pitch in for a ticket! LOL.
-
Like -
Helpful -
Hug
3 Reactions@stevestenberg31
My wife@Kim1965, in April 22 diagnosed with mass on pancreas and also too many lesions on liver to count. The short story is after 9 months of Chemo (pills), Lanreotide, she had 80% reduction in both and had surgery to greatly reduce the cancer. Have faith in your cancer team to come up with a plan to beat NETs.
-
Like -
Helpful -
Hug
5 ReactionsHi @stevestenberg31,
I so agree with your post. The right diet, exercise and staying "vertical" are such good goals for all of us.
-
Like -
Helpful -
Hug
1 ReactionHello @mbg20
It looks like you have received a lot of good feedback from members of this discussion group. I see that you are looking for an experienced oncologist. This is a wise idea.
NETs specialists are well trained to both diagnose and treat this rather rare form of cancer.
Have you considered having a consultation with Mayo Clinic? There are three campuses in Jacksonville, FL, Rochester, MN and Phoenix, AZ. Each campus has NET specialists. If you are interested in an appointment, here is the link that will get you started, http://mayocl.in/1mtmR63.
If you are not able to be seen at Mayo, here is a listing of NET specialists from the Carcinoid Cancer Foundation website,
--Find a Doctor
https://www.carcinoid.org/for-patients/treatment/find-a-doctor/
Have you had the PET/CT DOTATATE scan yet? Is your appointment with the surgeon scheduled already?
Right now I’m being seen at Johns Hopkins. Because of a developing bowel obstruction the procedures have happened pretty rapidly. I’ve had a PET/Ct DOTENTATE Scan, a scan with iodine contrast at JH which provided a lot of information, and a second CT contrast scan last weekend because of fear that my small intestines were blocked. In sum I have a 5 cm mass in the mesentary, entangled small bowels, a suspected mass in the small intestine, uptake in some abdominal lymph glands, a right thyroid which show a lot of uptake and I’m awaiting a fine needle biopsy on it. So far my liver and pancreas seem free. Also some suspicious areas in T9 vertebrae and right collar bone. I started lanreotide under a John Hopkins doctor who works on NETs. I am also seeing a surgeon who works on NETs although he does other types of small bowel oncology. Because of concerns about obstruction i’m et for surgery tomorrow.
-
Like -
Helpful -
Hug
1 ReactionHello @mbg20 and thank you for being part of our community.
It sounds like you have had some helpful testing at JH. From your post, it sounds like you will be having surgery tomorrow. Is that correct? Will the surgery be directed to the mass in the mesentery?
I certainly wish you well and I hope that your surgery goes well. Have you been given an estimate on how long you will be hospitalized after your surgery?
I met with my oncologist. The big tumors on my pancreas are about half the size of what they were when I started CAPTEM 7 months ago. The over 200 lesions on my liver have stabilized or shrunk. Yay! I start another CAPTEM chemo cycle tomorrow. I get so excited to start chemo again cause it is working. I will suck up two weeks of feeling like crap if it is working.
-
Like -
Helpful -
Hug
1 Reaction@lastround your diagnosis seems so similar to my dads story in the sense of areas affected and different grades along with the increased amount of liver masses- do you experience any pain? Pain management has been the ultimate struggle. Fentanyl patch along with dilaudid pills are hardly keeping him at bay. He’s naturally a very active guy so I’m sure this is a struggle of itself with not being able to do the things he wants to do. With the pain on the side of his liver along with always feeling bloated and I’m sure related to the tumor burden of his small intestine. Do you experience any pain and what has usually helped you? He’s on cycle 3 so far and we were hoping chemo would help with pain in hopes of shrinking the big guys that were causing the pain, but might not be the case.
I had some pain around my back and side, but that is about it. The chemo makes me ache all over like the flu. Nothing too bad though. I will take 5mg of oxycodone and I am fine. I was bloated too. Turns out that I had fluid in my stomach area. 8.5 liters were drained. I felt so much better and my stomach pain was gone. 7.5 liters were drained 3 weeks later. That was last October. It hasn't happened since.