I‘m 40 female. My CT scan showed 1.2 cm arterial enhanced lesion at the tail end of the pancreas. The radiologist recommended a techniciaum 99m heat RBC scan.
The doctor here in Canada told me it’s based on the CT that it’s a pNET.
Has anyone else had this experience? possible splenic rest, tail pNET, which hospital did you go to and which surgeon.
Thanks for y help.
Hi, sharing my story so that it might be a helpful resource to others.
I’m a 36 M living in Toronto, Canada.
On july 7 i started having chest pain and it became worst over the next 3 days. On july 10 i started getting fever which wont go down even after taking advil. So ultimately ended up in an urgent care where they ran all sorts of tests. Finally in CT scan they found a 8 x 5 x 5 cm heterogeneous mass in my anterior mediastinum and immediately referred me to a thoracic surgeon.
3 days later when we met the thoracic surgeon he surfaced 4 different possibilities based on CT scan results. Lymphoma, Thymoma, overgrown thyroid and germ cell tumor. He ordered a biopsy, pet scan, MRI and more CT scan.
A a couple of weeks later the pet scan results showed the signs of thymic epithelial neoplasm and
With mas SUV max of 8.4. The biopsy results showed that it was neuroendocrine tumor with necrosis but they couldn’t confirm the origin as pet scan didn’t show any mutated cells in pancreas or intestine. Additionally they found a 2-3 cm lesion on liver.
The surgeon after consulting with the board immediately scheduled a sternotomy to remove the mass. The surgery happened on August 10 and they had to cut a 4 x 5 cm big pericardium (heart wall) and 3 x 4 cm big piece of lung. They also removed my thymic gland and took a cluster of lymph node which was stuck to the tumor.
Later in the ultrasound they found 3 different lesions on my liver which they now will perform the biopsy on. Additionally we will find out the origin and grading of the tumor through pathology testing of the tumor.
Right now I’m in a 6-8 week recovery from the surgery and the path results will tell if there is any post op treatment involving chemo/radiation.
Just wanted to share my story in case someone is going through the same and need any help interpreting results and navigating through healthcare or getting there questions answered.
Dont hesitate to shoot me a message in case you need any help.
I’m 37 and just had a colonoscopy. My doctor identified a 2cm mass on my appendix pushing into my cecum. He believes it to be a NET. I will know for sure next week.
My issue is I just had two CT scans last week that didn’t identify a single thing. My first one was without contrast. I went to urgent care who sent me to the ER because they thought I had a kidney infection. All blood work perfectly normal and a clear CT except “moderate stool load”. Dr said to take a laxative at home.
I took a laxative at home and was in the most excruciating pain of my entire life. I could stand, was vomiting from the pain, nearing blacking out. My husband drove me straight back to the ER. After a completely clear CT scan with contrast this time, the doctor accused me of seeking pain meds.
Within minutes of leaving the ER, I began defecating straight blood, but instead of going back, I just called my gastroenterologist (I have celiac disease). The bleeding subsided by the time I got there and they set me up with an immediate colonoscopy, where they found the mass.
Have any of you ever had a mass completely missed by a CT with contrast? It wasn’t just that my appendix couldn’t be seen - this mass is physically pushing into my colon.
Have your METS been missed as well by CT? The only shred of hope I’m holding onto is that while they missed the initial mass, the chances of missing multiple masses is hopefully pretty low.
A recent blood test found I have an elevated igf-2 of 780. I am trying to find an endocrinologist in the SF Bay area that can figure out why my igf-2 is elevated and find out if there is a tumor or not. And tell me how to treat it.
I am having trouble finding an endocrinologist that knows what this is and how to diagnose. I am getting rather discouraged.
Hello! I'm here on behalf of my mother. We just received the latest PET scan after her second round of treatment. Here what it is...
the diaphragm including periportal, mesenteric, and retroperitoneal
lymphadenopathy, with now FDG uptake almost equal to liver,
consistent with favorable treatment response. Marked decrease in FDG
uptake in the left supraclavicular lymph node.
and avidity, however with some residual hypermetabolism. Given
positive treatment response of multiple lymph node stations to
current treatment, it is difficult to differentiate whether this
hypermetabolism is secondary to infection or inflammation given
recent cholecystostomy tube placement or residual disease."
We discussed that these results are encouraging and allow for delay in future chemotherapy cycles at this time while allowing for improvement in her functional status including nutritional support. Hopefully this will lead to improvement in her sensory and motor neuropathy.
Her case with discussed with HBP surgery who opts against palliative cholecystectomy for disease consolidation. We discussed our recommendation to have her evaluated by radiation oncology for potential consolidative radiation to the residual are of FDG-avidity in the gallbladder.
She was open to this plan and we provided continued encouragement and support for her ongoing attempts to increase PO intake.
I . Interval near complete resolution OT multiple lympn noaes oelow tne aiapnragm
including periportal, mesenteric, and retroperitoneal lymphadenopathy, with now
FDG uptake almost equal to liver, consistent with favorable treatment response.
Marked decrease in FDG uptake in the left supraclavicular lymph node. 2. Mass
adjacent to the gallbladder with interval decrease in size and avidity, however with
some residual hypermetabolism. Given positive treatment response of multiple
lymph node stations to current treatment, it is di#icult to differentiate whether this
hypermetabolism is secondary to infection or inflammation given recent
cholecystostomy tube placement or residual disease. 3. New groundglass opacity
in the right upper lobe demonstrating markedly avidity, favoring infectious versus
inflammatory etiology. Recommend follow-up to complete resolution. 4.
Hyperdense nodule in the right abdominal wall soft tissue with mild surrounding
FDG avidity favoring a hematoma. Recommend close attention on follow-up. The radiology attending physician has personally
reviewed this study, and had reviewed and/or edited this written report and agrees
with it.
I'm wondering what everyone's thoughts on this is. I'm assuming it's great news, especially this this is only 2 rounds in. What what does this mean for the long term?
Hello to everyone,
I really did not expect a sub reddit for this, however I am happy there is one for us all.
My name is Kieran and was recently diagnosed with a stage 4 pancreatic neuroendocrine tumour at 28 years of age.
I have a gallium pet scan tomorrow to check if it has further spread I believe, it has already went to my liver. I had issues with acute pancreatitis for years from 2022 to this year and was in hospital for a few weeks in July this year.
My attacks were blamed on alcohol consumption although I was never a big drinker, after being in hospital for 2 weeks they found my tumour. It is 8cm in circumference, which is large.
I will be going for surgery most likely in a few weeks, this will be life changing for myself as I will need most of my pancreas removed, my entire spleen and hopefully zap away the parts on my liver.
I'm just glad to have found this and hope everyone is well.
Thank you
Hello! I was first diagnosed at 27, I'm now 30. I created this sub first because the existing sub was closed and dead a few years ago, but also because there are so few of us.
This cancer is so isolating at every step of the way from just being a hard life thing to go through, cancer being story scary, but also not really being like other cancer, and rare enough to not have many around you to relate to. And for me, the experience of being young is very different from those in my regional support group who are much older. They're great, but frankly my concerns and feelings are vastly different.
Anyway, is really really like to connect with more zebras around my age - I know you're out there! I think a great place for this would be a dedicated channel in the Discord, but I'm open to other ideas. Maybe we could have a designated kind of support group/hangout time or just a chat to share it similar experiences. Please reach out if you're interested! I only met my first in-person fellow NETs patient this past weekend and frankly, I need more of that connection.
In addition, I live in Seattle but frequent the Midwest and Florida. I would love to meet some of you in person if anyone is also wanting that.
Age specifics aside, I'd love to just connect with more zebras in general, so regardless of age please reach out! Come chat in the Discord!
My husband (30M) was recently diagnosed with NET in June. They believe the primary lesion was the lung but they’ve found masses on his liver and numerous Mets on his bones. He had two large lesions on his collarbone and pelvis which pretty much completely immobilized him.
We spent 5 weeks at University of Michigan with him inpatient to get his pain under control which included five rounds of high dose radiation and an emergency round of chemo once his final pathology came in.
He’s now finished up his third round of carboplatin and etoposide and one round of immunotherapy. They added on neulasta this round due to low counts the last two times.
I’m mostly putting this in here to see if anyone else has experience in this type of NET. He struggles so much with lower back pain that even though his bone pain on his pelvis and collarbone are gone he’s still not very mobile. He’s on a pretty decent dose of methadone for pain control and we’ve added in Claritin for the joint pain but he’s still pretty uncomfortable. And we don’t want to up doses and fight an even bigger battle with the bowel and constipation. Honestly any advice or information is helpful. I’m (30F) his full time caregiver but I also work full time, thankfully from home for now while he’s going through treatment. But I know this is just the beginning of a long and brutal journey and I just want to support him and advocate for him as best as I can.
I posted 2 months ago that my NET was removed during a colonoscopy, ki 2, 1mm size, resected to r1 and that I was awaiting pet scan and treatment plan
Pet scan shows tumor bed is clear but what was showing for 3 years on other imaging for endometriosis as either a parasitic fibroid or endometriosis nodule doctors now believe to be an avid lymph node of the mesorectal or perirectal fat anatomically consistent with the tumor bed location.
I am seeing Rutgers and MSK GI surg onc doctors for reference.
MSK said my choices are: monitor, biopsy, or insist on removal. He favors monitoring.
Rutgers initially said laparoscopic removal which I could have combined with an endometriosis procedure, that a biopsy might not find it, but now are saying to monitor and not to get it removed, but that I could still have my endometriosis surgery as planned.
Both say monitor tumor bed that r0 resection is not necessary.
I have experienced carcinoid symptoms for years but they don’t know if the tumor was causing it or if the lymph node will cause it.
I’m just at a loss. I’ve had many surgeries and DO NOT want another but with endometriosis we often have no choice but to try and address our pain, I’m also an RA patient on 2 immunosuppressive meds.
Is leaving this metastasis really a good idea? Both doctors say that it’s not worth removing and that meds aren’t the right choice for me.
I want to move forward with my life and though they say it may never grow I don’t want to suddenly need a dramatic surgery because we didn’t monitor close enough.
Help!