Any Pancreatic Neuroendocrine Cancer Patients in active surveillance?

Kidney_Cancer_Kid
Kidney_Cancer_Kid Member Posts: 46 Member
edited March 28 in Pancreatic Cancer #1

If this is not the right forum, please excuse my post.

For Pancreatic NC people:

How long have you been scanned and how often?

Do you worry about the radiation needed to scan or the dyes needed?

This is my third cancer, but it is so different from my rcc. It is a subset of pancreatic cancer and a subset of neuroendocrine cancer. I feel that with this cancer . . . I don't have a particular group that I belong to, unlike having renal cell carcinoma which is a definite kidney cancer. Do you feel like that too?

Still there is another issue . . . with rcc there were clear plans: Surgery, Scan, Chemo if it reached a certain size. I am still scanned for rcc follow ups, especially since I developed an angiomyolipoma (benign, but can cause problems). If you keep developing different masses, they have to be watched too. With this current cancer, they leave it in place because of comorbidities and watch it. It is still the size that has good parameters that can be seen; why not seen and removed? As we age, some of us become weaker and have more illnesses. I think surgery while I'm strong enough to handle it would be better, but I'm not an MD. Does anyone feel like this?

Maybe I need to change my user name to encompass all of my mass . . . like Hi, I'm Lumpy. . .

Kidney_Cancer_Kid

Comments

  • Deanie0916
    Deanie0916 Member Posts: 626 Member
    #2

    Hi Kidney Cancer Kid I think I chatted with you on the kidney cancer board. I also have a neuroendocrine tumor on my pancreas. They just keep watching it along with other areas.

  • Kidney_Cancer_Kid
    Kidney_Cancer_Kid Member Posts: 46 Member
    #3
    https://csn.cancer.org/discussion/comment/1695109#Comment_1695109

    Hi Deanie0916

    Were you like me with surgery for the kidney cancers with scans and blood tests as follow ups? Then, for the pnet, you want it out (you feel like a ticking time bomb is left inside of you), but doc. order tests and scans.

    We must trust the doctors, but do we? Do I? I should because I got a second opinion for MD Anderson Cancer Center (the top cancer center in America). Then, what else can be done? I'm alive. I'm happy to be in the land of the living. We are alive. That is so important to think about and celebrate. Why do I keep worrying? I have survived 2 rccs. I keep going back with my thoughts, not progressing. Do you feel that way?

    Kidney_Cancer_Kid

  • Deanie0916
    Deanie0916 Member Posts: 626 Member
    #4

    Yes definitely. I feel like I just exist in between scans and appointments. I had my mind made up to do the whipple surgery if the tumor had grown. But then they found thyroid cancer. So I'm back to more scans and appointments after thyroidectomy. I'm blessed by members on this board who are graciously living in similar situations and handing out encouragement and advice. Guess one day at a time looking forward is the rule for me for now!

  • StageIVSurvivor
    StageIVSurvivor Member Posts: 19 Member
    #5

    I had Whipple surgery 10 years ago for a pancreatic acinar cell carcinoma (PACC) and started off with CT scans every three months while undergoing Folfirinox chemo. At four years out it went down to three/yr and around year 6 to twice yearly. I was concerned about cumulative radiation as well as the contrast dye impacting kidney function. So after a discussion with a couple of oncologists, the CT with contrast was eliminated and an MRI with Gadolinium was added. Once there was sufficient MRI’s to use as a new baseline, the CT was completely eliminated and I only get MRI scans twice yearly. When I reach 10 years NED (14 years overall survival), we’ll re-evaluate whether to go down to a yearly MRI or stay at twice yearly.

  • Kidney_Cancer_Kid
    Kidney_Cancer_Kid Member Posts: 46 Member
    #6
    https://csn.cancer.org/discussion/comment/1695367#Comment_1695367

    Oh Deanie0916,

    I wish no one else would have know about these scans, labs, surgeries, chemo, etc! If only our wishes could come true.

    All I can offer is virtual hugs (((Deanie0916))) and long distance support. I wish that I could go to face-to-face support groups, but that "curse word" COVID keeps me away from all cancer support gatherings.

    Your words are a blessing to me, especially since I just had my latest doctor's visit. Results are pending . . .

    Kidney_Cancer_Kid

  • Kidney_Cancer_Kid
    Kidney_Cancer_Kid Member Posts: 46 Member
    #7
    https://csn.cancer.org/discussion/comment/1695408#Comment_1695408

    StageIVSurvivor:

    Gadolinium is nephron sparing dye? My doctors never mentioned that to me. After a nephrectomy and an ablation to the other kidney, they never tell me about different dyes that could be better for me. I need to look that up with the Kidney Foundation. Thank you.

    If it is not too much . . . Anemia? Energy levels? Do you have a special diet? Did you do like my friend and throw the doctor's suggestions in the trash as soon as you left the hospital? I have severe fatigue (cancer + other conditions). I have to constantly have labs for the anemia. Then, my eating plan has been wavering, but not discarded.

    Thanks,

    Kidney_Cancer_Kid

  • Deanie0916
    Deanie0916 Member Posts: 626 Member
    #8
    https://csn.cancer.org/discussion/comment/1695509#Comment_1695509

    I'm praying for you as you await results. Thanks for the virtual hugs and encouragement!

  • mhud
    mhud Member Posts: 1 Member
    #9

    Scans clear 2 1/2 years out. Next one September 2024. Pancreatectomy 2021 with excision of neck, body and tail. Found very early because of MRI for kidney stone. Feel very lucky.

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