Gynecologic neuroendocrine metastasized to lungs: Need a specialist

@nwilson03 This is devastating about your beloved mother. In your position I would want everything that could be done for my mother to be done. What does your mother want? Would she want another opinion or options?

You are in Florida so not too far away from the Mayo Jacksonville campus. Here is the link in case you'd like to ask for another opinion.

How are you feeling tonight? How is your mother?

We live in Orlando Florida. Mom came to the ER of Orlando Health Hospital thinking she had a UTI. Turns out she has a cervical tumor 10x 7.5 cm diagnosed as a NET that has spread to lungs. We were seen by a consulting hematologist/oncologist at the hospital that said radiation and chemo won’t help!! Mom said she’s a fighter and will die trying. He started her on chemo. After 3 nights she was done. They discharged her. After weeks in hospital due to waiting on biopsy and such, she’s week and can’t walk. At this point since the biopsy and everything took so long and she was in bed for weeks, she isn’t walking. We took her to a rehab for physical therapy to get her walking. First step of PT is too sit on side of bed. She’s basically sitting on the tumor and
It hurts too much. So PT is not working! So we are at a loss. The cancer clinics are all out patient. We have yet to find a NET doctor that will take her. The consulting oncologist said she can follow up with him and next step would be immunotherapy. I don’t know if that’s the best thing to get her cured, they say there is no cure just palliative care. He’s not a NET specialist and there’s so many clinical trials and cutting edge new advances. Without mom walking this has become a huge challenge and we are hitting a wall. I really don’t know what to do!!! I can’t get a NET doctor to take her and she’s not walking!! Any suggestions would be greatly appreciated!!!

Hello @nwilson03 and welcome to Mayo Connect. I can understand the frustration you must be feeling. Your mom is a fighter, but you seem to be having a hard time finding the right back-up team in order to help her fight.

Are you aware that there are NET specialists at Mayo Clinic in Jacksonville, Florida? I would recommend calling them to see if they will give your mom an appointment. Here is a link to give you information to schedule an appointment, http://mayocl.in/1mtmR63.

If for any reason, she is not able to be seen at Mayo Clinic, I recommend that you look at the Carcinoid Cancer Foundation (CCF) website and look for information on a NET specialist there. Here is the link to the CCF website, https://www.carcinoid.org/for-patients/treatment/find-a-doctor/.
If your mom cannot comfortably travel to personally see any of these doctors, you might want to see if you can get a virtual appointment for your mom.

You mentioned that your mom had chemotherapy. What type of chemo was it?

Hello, I have NET related pancreatic cancer. My mother died of pancreatic cancer which was diagnosed literally the day she died. I was diagnosed with NETabout a year ago. I was treated at The Moffitt Cancer Center in Tampa with great results. I underwent the Whipple procedure in Oct. 2022. My surgeon is an extremely competent, Dr. Mokenge Malafa. They went in expecting a few tumors and found 16. The surgery was very successful in that I did not require chemo or radiation. The whole process at Moffitt was very organized and professional.

Hello @juandixon and welcome to the NETs discussion group on Mayo Connect. I appreciate you sharing your journey with NETs. It is encouraging to hear of your successful surgery. Your experience emphasizes the importance of seek out a NET specialist in order to have the best outcome possible.

If you are comfortable sharing more, what type of symptoms were you experiencing that led to the diagnosis of NETs in the pancreas? What tests were done to diagnose this NET?

How are you feeling post-surgery?

I, experienced weight gain, depression, and muscle soreness. I was also lethargic, often lacking the energy to do things I had once enjoyed. My endocrinologist was suspicious and ordered a urinalysis to check my Chromogranin A Serum level. Prior to my Whipple surgery, whereby my duodenum, part of my stomach and the head of my Pancreas and bile ducts were removed/resected, and my Chromogranin A Serum level was 960. They are now at 360 post surgery. I am very thankful for my medical team at Moffitt, but I am nervous about what's next. My most recent CAT scan w/contrast revealed a suspicious area on my liver. I am scheduled for a MRI to assess this area. I feel very well thus far. I've lost 40 lbs, which feels fantastic, but I have had digestive issues. I lost my colon in 2011 and have a 'J' Pouch, so my gastric issues were complex prior to the Whipple. I am presently on Pancreatic Enzymes and Simethicone and Lomotil.

Thank you we do have an appointment virtually with Dr Shafique. Moms had metastasized to lungs do I don’t think they can’t do surgery. Idk. I really hope Dr Shafque can give us some good hope.

I have to look again. I believe one was toposar? And I have to check the other and I’ll get back. The makers show next treatment t should be immunotherapy.

I hope that you do get some good news, @nwilson03. Is Dr. Shafique at Moffit?

I look forward to hearing from you again. Will you continue to post with any questions and updates?

No Dr Dhafique basically said he agrees with the Dr at Orlando Health that not much can help mom. She’s been basically abandoned by the drs. She is home with hospice and I feel so helpless watching her deteriorate daily with no treatment, nothing. I hear good things with immunotherapy and injections, keytruda so many thing yet mom just is home dying slowly a horrible death.