My first sudden facial flush since NETs surgery
Fall 2018 – first dx & Surgery for NET removal and resection in my sm. int. Also took 12 lymph nodes ( 6 with metastatic disease.) Spring 2021- hysterectomy and ( surprise!) NET tumors found in both ovaries. Fall 2022 – tonight my face flushed. Should I worry?
Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.
Hello @liz925 and welcome to Connect. I can understand your concerns. Any new symptoms can cause worry. I have had three surgeries for NETs in the upper digestive tract (duodenal bulb), however, I have not had the facial flushing. Facial flushing is not uncommon, though, with NETs. On Mayo's website I found this information on carcinoid syndrome.
As you read this article you will see that other symptoms can accompany the flushing such as diarrhea, difficulty breathing, etc. Are you experiencing other symptoms as well?
Have you contacted your doctor's office about this new symptom? If not, please do so.
Many of patients with carcinoid syndrome take monthly injections to help keep these symptoms under control. Are you currently taking monthly injections?
Hi @liz925, I'd like to add my welcome and bring a few other members into this discussion like @browndog @sophiarose @carcinoid23462 @gaylejean, who have also experienced flushing with NETs.
I agree with @hopeful33250 that you should contact your doctor or oncologist to talk about this new symptom. How are you doing today? Is the flushing persisting or started up again?
I had major flushing and diarrhea
I was put in Lanreotide which made those symptoms worst as well as giving me other symptoms bad headaches no appetite fatigue gas and bloating
I also got calcifications at every spot where the shots were given
I changed oncologist and I am now on octreotide
I have none of the above side affects and all the symptoms are gone
I don’t know what if anything you are on so I just wanted you to know what I went through
Thanks for your responses! That flush, which I only noticed it in the mirror before bed. It hasn’t happened again and no other symptoms. Good suggestion to send a note to my NET oncologist to document it. In August, my semi- annual Pet was clear, but wondered if this significant flush could be an early sign of troubles ahead. That’s probably a question no one can answer, but wondered if anyone else has had a similar experience of an occasional flush, but no other symptoms.
I was wondering what all symptoms you had….I had some symptoms that ended up bringing me here…I know this sounds crazy but everytime I go to the bathroom my blood pressure goes up and I get flushed in my face and neck usually for the rest of the day…I also have quite a few nodules under my skin and when they first appear they are painful 😖…. Can't get any answers because my health insurance is the worst
Welcome, @kristykelly71. I believe your question about symptoms was directed at @liz925.
Kristy, have you been diagnosed with NETs?
Hi Kristy. I’ve only had mild flushing that lasts less than an hour. I haven’t taken meds for mine since it’s a rare occurrence. I’ve had two NET surgeries ( small intestine & overies) and no flushing since my last surgery 1 1/2 years ago.
I hope someone responds who knows more about flushing.
Yes….I was just recently diagnosed with carcinoid syndrome….I'm scared to death and my mom who is my best friend in the world passed away two days ago….I'm devastated about both …my God what am I to do
Kristy, this must be really tough facing such a diagnosis without your mom. You must miss her terribly. It’s all so new. Feel free to join the Loss & Grief support group if you like. Just click here: https://connect.mayoclinic.org/group/loss-grief/
Let me introduce you to Teresa @hopeful33250, she understands both loss and carcinoid syndrome and can help connect you with support, like the monthly Zoom support group hosted by Mayo Clinic and other members who have a similar diagnosis.
Can you tell me a bit more about your diagnosis? When were you diagnosed? Where was it found in your body? Do you have a treatment plan? Have you started treatment?
I would like to welcome you to Connect. You have been through a great deal of stress. Your mom's death and now these uncomfortable health issues. You say that your "health insurance is the worst." Has the insurance company denied testing or other diagnostic work? If so, there is usually a way to appeal denials.
As you were diagnosed with carcinoid syndrome, I'm wondering where the carcinoid lesions/tumors are located. Have you had a PET Scan to determine where the primary carcinoid lesion is located?