Metastatic Poorly Differentiated small cell neuroendocrine Carcinoma,
Now what after chemotherapy? Current oncologist opinion is wait and see. Trying to get appointment at Mayo Clinic. I don't like the wait and see approach if there are other treatment's possible. I survived chemo don't want to stop now.
Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.
Welcome to the NETs group, @jay1225. The watch and wait approach can be unnerving. But sometimes it is a good option. I actually prefer to call it active surveillance, which sounds more action oriented. Your health and tumor is being actively watched and action will be taken when necessary.
I'm glad you're seeking a second opinion at Mayo Clinic. Which location did you request an appointment? Can you tell me a bit more about your diagnosis? What kind of NETs do you have or where? How was it diagnosed? Have you had any treatments?
I guess Metastatic Poorly Differentiated small cell neuroendocrine Carcinoma, multiple liver mets. Is the official diagnosis. Sadly it was poorly diagnosed at a clinic that oncology department didn't do a through biopsy then sent of to facility that tried to piece together a result. I still feel that a second biopsy would be more accurate but I'm going to a reputable place that doesn't do second biopsy's. They think it metastasis to my liver but no know origin OR that it started in my liver. I've gone through 4 rounds of chemotherapy with 2 more rounds scheduled. It seems to be working. After 3 sessions my liaison and tumors have shrank and my blood work liver function is now normal. After last CT they couldn't find cancer anywhere else. So to me that sounds good. My oncologist is reluctant to go into further explanation on results. If you need more about what types of NETS I have I can find out. Right now I'm open to any Mayo location.
When reading your active surveillance that makes sense if my health and tumor are being watched. They tell me my type of cancer is aggressive. After chemo I'll be seen every 6 months for CT and a maintenance chemo. At first they only gave me 6 months to live. I'm almost 4 months into that. Hopefully the Mayo Clinic will be able to show some light and information on what's going on with me. Right now it's get chemo be sick for a week be ok for a few days and do it over. Being told I'm just buying time. I've read other reports that it doesn't necessarily have to be just buying time. I'm obviously confused, scared and looking for direction
I replied to your comment in the reply section. Can contact you further
here in answers to your questions? I'm all alone in this fight and could
use any direction out there. I'm very much looking forward to my
appointment with the Mayo clinic. Hoping I'm a candidate for services they
I’m trying to get an appointment as well. I’m told they are booked up till June and call back in 3-4 months. Then what? I’ve been dealing with this for a year.
@jay1225, here is more information about how to request an appointment at Mayo Clinic, including how to self-refer or to have a physician submit a referral. http://mayocl.in/1mtmR63
There are world class experts in NETs at all 3 locations of Mayo Clinic in Arizona, Florida and Minnesota. Which location would be best for you?
Welcome @dorrieb60. May I ask which Mayo Clinc location your requested an appointment at?
What type of NETs do you have? Have you had any treatments to date?
I'm sorry to hear that. Waiting is hard. I always feel like I want to be doing more about this disease.
I was referred to Jacksonville
Dorrie, you might look into whether there are earlier appointment available at one of the other Mayo locations.
One thing I'd like to tell you and @jay1225 about are our monthly NETs support groups held on Zoom. These are open for everyone and hosted by a Mayo Clinic social worker. You can meet other NETs patients, meet Mayo experts, ask questions and more. The NETs Zoom support group meets monthly on the first Thursday every month from 5:30 to 7:00 p.m. Eastern time.
Here's more information:
Please join us.